Chasdei Hashem!!

Dear Family and Friends,

With deep gratitude to Hashem, we wanted to share the positive news that Benny’s doctors have reviewed his scans and said that he remains free of cancer, Baruch HaShem.

While we don’t meet with doctors to get a complete report until next week, we are thankful for this wonderful preliminary report.

Thank you to each of you for the incalculable impact you have had on our lives!

Love,

Ari, Faigie, Yocheved, Rivka Basya, Yosef Tzvi, Shua, Shmuel and a very relieved not-so-little Benny!!!

It’s that time again! – Tehillim for Benny

Dear Family and Friends –

It’s that time again. The last three months have been a wonderful reprieve and we have seen our family begin to flourish again. We have celebrated many simchos with friends and family and are enjoying a beautiful summer here in Los Angeles. Over the past few weeks, as we have come closer to these dates on our calendar, our level of consternation increases day by day – hopefully without foundation. Today (Wednesday) and tomorrow, Benny will undergo the ordeal of his testing regimen to ensure that (with G-d’s help) he remains disease free.

We ask you to join us in asking Hashem that his ordeal be limited only to the tests he must undergo and that he be given a continued clean bill of health that will allow him to begin pre-school this fall just like all of his little friends.

At the same time, please include our dear young friends, Elimelech ben Basya and Chaya Mushka bas Hadassah Shaina who are still, unfortunately, undergoing difficult treatments. Please plead with Hashem that their paths should lead to complete Refuos so that they may live the long productive lives we all expect our children to have.

We wish our deepest thanks to each and every one of you for your continued support in this long journey and know that our friends, whose children are still suffering, wish you all the blessings in the world for your tefillos.

With deep love,

Ari & Faigie and Yocheved, Rivka Basya, Yosef Tzvi, Shua, Shmuel, and, of course, sweet little Benny!

Binyomin Chaim ben Faigie Sarah

פרק קכא
א שִׁיר לַמַּעֲלוֹת אֶשָּׂא עֵינַי אֶל-הֶהָרִים מֵאַיִן יָבֹא עֶזְרִי: ב עֶזְרִי מֵעִם יְהֹוָה עֹשֵׂה שָׁמַיִם וָאָרֶץ: ג אַל-יִתֵּן לַמּוֹט רַגְלֶךָ אַל-יָנוּם שֹׁמְרֶךָ: ד הִנֵּה לֹא יָנוּם וְלֹא יִישָׁן שׁוֹמֵר יִשְׂרָאֵל: ה יְהֹוָה שֹׁמְרֶךָ יְהֹוָה צִלְּךָ עַל-יַד יְמִינֶךָ: ו יוֹמָם הַשֶּׁמֶשׁ לֹא-יַכֶּכָּה וְיָרֵחַ בַּלָּיְלָה: ז יְהוָה יִשְׁמָרְךָ מִכָּל-רָע יִשְׁמֹר אֶת-נַפְשֶׁךָ: ח יְהוָה יִשְׁמָר-צֵאתְךָ וּבוֹאֶךָ מֵעַתָּה וְעַד-עוֹלָם:

פרק קל
א שִׁיר הַמַּעֲלוֹת מִמַּעֲמַקִּים קְרָאתִיךָ יְהֹוָה: ב אֲדֹנָי שִׁמְעָה בְקוֹלִי תִּהְיֶינָה אָזְנֶיךָ קַשֻּׁבוֹת לְקוֹל תַּחֲנוּנָי: ג אִם-עֲוֹנוֹת תִּשְׁמָר-יָהּ אֲדֹנָי מִי יַעֲמֹד: ד כִּי-עִמְּךָ הַסְּלִיחָה לְמַעַן תִּוָּרֵא: ה קִוִּיתִי יְהֹוָה קִוְּתָה נַפְשִׁי וְלִדְבָרוֹ הוֹחָלְתִּי: ו נַפְשִׁי לַאדֹנָי מִשֹּׁמְרִים לַבֹּקֶר שֹׁמְרִים לַבֹּקֶר: ז יַחֵל יִשְׂרָאֵל אֶל-יְהוָה כִּי-עִם-יְהֹוָה הַחֶסֶד וְהַרְבֵּה עִמּוֹ פְדוּת: ח וְהוּא יִפְדֶּה אֶת-יִשְׂרָאֵל מִכֹּל עֲוֹנֹתָיו:

פרק קמב
א מַשְׂכִּיל לְדָוִד בִּהְיוֹתוֹ בַמְּעָרָה תְפִלָּה: ב קוֹלִי אֶל-יְהֹוָה אֶזְעָק קוֹלִי אֶל-יְהֹוָה אֶתְחַנָּן: ג אֶשְׁפֹּךְ לְפָנָיו שִׂיחִי צָרָתִי לְפָנָיו אַגִּיד: ד בְּהִתְעַטֵּף עָלַי | רוּחִי וְאַתָּה יָדַעְתָּ נְתִיבָתִי בְּאֹרַח-זוּ אֲהַלֵּךְ טָמְנוּ פַח לִי: ה הַבֵּיט יָמִין | וּרְאֵה וְאֵין-לִי מַכִּיר אָבַד מָנוֹס מִמֶּנִּי אֵין דּוֹרֵשׁ לְנַפְשִׁי: ו זָעַקְתִּי אֵלֶיךָ יְהוָה אָמַרְתִּי אַתָּה מַחְסִי חֶלְקִי בְּאֶרֶץ הַחַיִּים: ז הַקְשִׁיבָה | אֶל-רִנָּתִי כִּי-דַלּוֹתִי מְאֹד הַצִּילֵנִי מֵרֹדְפַי כִּי אָמְצוּ מִמֶּנִּי: ח הוֹצִיאָה מִמַּסְגֵּר | נַפְשִׁי לְהוֹדוֹת אֶת-שְׁמֶךָ בִּי יַכְתִּרוּ צַדִּיקִים כִּי תִגְמֹל עָלָי:

B”H Good News!!!

It feels like we just went thru 48 hours of Yom Kippur and Akeidas Yitzchak.  Chasdei Hashem (with Hashem’s Kindness) , Benny was given a clean bill of health just moments ago.   We are eternally grateful and IY”H look forward to hearing this wonderful piece of news with all the Cholim in need of a Refuah Shlema. For most people Yom Kippur comes around once a year, unfortunately, Benny has to go thru this every 3 months for the first year, then every 4 months for another year or two and then 6 months up until 5 years.

As I picked up Benny from play group this morning (after about an hour being there), I thought to myself for a quick moment, “will Benny be Zoche to finish up this school year with his friends and Morah’s? WIll he still be able to go swimming this summer or take a normal bath? Will I have to sleep on a hospital bed with him and leave my family?” There are many thoughts that creep into ones mind during these challenging times.  B”H today we are given three month reprieve of all tests and can go on living like a healthy 3 year old boy should.

Below is a picture of Benny. It is not a pleasant picture to see. The reason I am posting it, is to bring awareness to other’s who B”H will never see this. When Tehilllim is being said for a Choleh, it is best to picture what they are going thru, the Tefillos gain strength and more meaning. The Choleh, nor their loved ones should never have to endure this emotional and physical pain. Benny cried for an hour an half straight before finally falling asleep. He wanted out!!! Anesthesia is available for this test, but then there is the discomfort of fasting and most importantly the risks that are involved with anesthesia.  The technician was worried she wouldn’t be able to complete the test if he didn’t keep his head still. B”H Benny fell asleep the last 15 minutes and the test was completed in full.  Hopefully, Benny won’t have nightmares from today and will sleep peacefully tonight and years to come IY”H.

mibg mibg 2

 

Time Flies B”H

Time flies, when life is B”H somewhat back to normal. Tomorrow, and Thursday, IY”H Benny is due for his three month scans. We are not looking forward to it, especially because as Benny gets older B”H, he is more aware and afraid of the BIG machines. I hope B’ Ezras Hashem he won’t be scared or hurt by the pokes of needles.

There have been countless times I have wanted to update the blog, but fatique took over and there went my post. I basically, have been virtually writing my thoughts, but unfortunately, it hasn’t made it to paper or digitally.

There have been quite a few difficult ongoing situations that continue to cause us great pain. Our dear friends’ children, Elimelech Ben Basya and Chaya Mushka Bas Hadassah Shayna have both relapsed from this dreaded illness. Elimelech was just weeks away from having his line removed and beginning to live his dreams for the future, and then unfortunately, scans told a different story.  Chaya Mushka, just last week, after being clean  since last August, just found out that she will have to undergo the painful process of chemotherapy all over again. Her hopes and dreams of going away to sleep away camp for the first time, this summer, were shattered. The thought of her not being able to go swimming as we approach summer; all the restrictions that suddenly take over in a moments notice. Golda Bas Miriam is a new name on the list. She is a little two year old, the granddaughter of the Rav of our shul. She too, will now be spending the next month in the hospital for treatment. She has a 1 month old baby sister at home. What is a mother to do? How does she choose which baby needs her more?!

As I walked 4 miles to the hospital, with my daughter, to visit Chaya on Shabbos, I said to my daughter, “we can dedicate each step as a Zechus for her Refuah and all the Cholim in need of a Refuah Shlema.” It actually got me thinking and has begun to change my mindset.  From now on, as often as I can remember to do, I will talk to Hashem and dedicate different acts of Chessed (good deed) that I have the privilege of doing as a Zechus (merit) for someone else, as well as myself.  I believe it is truly an honor to be given the opportunity to do Chessed. Today, I offered to cook a meal for someone (at least my kids were guaranteed to dinner that way). B”H there was more than enough and in fact, I had extra. A few hours later I got a request from someone else in the hospital who didn’t have dinner. I had just the right amount of food for this family B”H and it didn’t even require extra effort.  Mitzvah Goreres Mitzvah. Hashem had given me an extra opportunity as a reward.

As we embark on journey to the hospital tomorrow IY”H, I hope to be able to bring with us all the Zechusim and Tefillos that were said and continue to be said, for continued good health for our Binyomin Chaim ben Faigie Sara.  We are forever grateful to all of you who play a pivotal part in Binyomin Chaim’s continued Refuah.  As much as we have Emunah and Bitachon that everything will be ok IY”H, we are human and therefore it is natural to be somewhat nervous (especially, with all that has been surrounding us the past little while).

Please pray for our children and dedicate your chessed to your good health and theirs.

Elimelech Ben Basya (8), Chaya Mushka bas Hadassah Shayna (10), Golda bas Miriam (2),   Chana Tova Bas Esther Shoshana (2), Binyomin Chaim ben Faigie Sarah (3).

IY”H may we hear B’suros Tovos (good news) soon by all IY”H.

Photo’s of Benny today!

bennycollagegrove

Photography: Yehudis Schoen Photography

 

B”H The Best News Ever

Other than testing positive for a stuffy nose, Benny’s scans look sparkly clean Chasdei Hashem (with G-D’s Kindness). Where as in the past if Benny had a cold when we were in the hospital, he would be put in isolation, today we walked out of the hospital, free as a bird. B”H Benny is free to fly far away from the hospital for 3 months before he undergoes testing again. The Dr. shared with us the preliminary test scheduling over the course of the next 4 1/2 years, G-D Willing all should be well.  The first year, testing is scheduled every 3 months (so that would make 2 more this year), the second and third year, every four months and the 4th year would be every 6 months. IY”H when we reach the 5 year mark, we will have yearly check ups (IY”H no more scans ever again).

On the way out of the hospital we stopped off at the gift shop for to pick out a treat. He chose Pringles and “Dr.” Pepper. Ari commented how it was an appropriate drink to have in a hospital.  After the treat, while heading to the Valet, we bumped into our favorite security guard, Zoila. She has come to know all of our family and prays for Benny. After I hugged her, I noticed a most unusual pin on her uniform. ( By now you all know me, I took a picture of it). If you look close you will see a pin with the American and Israeli Flag intertwined.  It felt good to meet people out there that actually love us!

zoila

 

Last night, we were B”H distracted ( from thinking about the test results), by attending a close friend’s wedding. It was wonderful to share in a night of true Simcha and Kedusha. As I waited for the ceremony to begin, and stared at the breath taking Chupah, I couldn’t help but imagine (and beg Hashem), that IY”H  Binyomin Chaim ben Faigie Sarah will also be blessed in standing under his Chupah .  One of the guests had asked me how old was my oldest. When I said, 16, she said “you have time.”  I responded, I am not in a hurry, but I somehow would like to fast forward to the day that IY”H all my children make it to their Chupah, but at the same time, I don’t want them growing up so fast.  I wish for all the singles to find their soulmate, and for them to be blessed with inner peace and happiness.

chupah

Today, as we drove to the hospital, Benny played this song over and over again. Like the song, “Yesh Tikvah”, this song really soothes Benny. This song was composed by Mr. Shlomo Yehuda Rechnitz and sang by Benny’s father, Ari.

B’Shem Hashem

Thank you all for your Tefillos and good wishes, each and every one of you and your special children.

Good Shabbos

 

 

One down

B”H we are finally home. It wasn’t an easy day for Benny to say the least. I sent him to school in the morning for a couple of hours to distract him before we had to go to the hospital. Already, in school he was asking to eat and was not happy when he was told that he couldn’t. Those were the instructions given to us by radiology. As time neared 4 pm in the hospital, he was very hungry as you can imagine.  One of the technicians that we have become friendly with over the past couple of years allowed Benny to eat a few bites of his bagel before the CT to calm him down.

Check in for his tests was 12:30.  Between 1-2:30 we met with the nurse practitioner  to discuss Benny’s current health ( evaluating him to see if he can undergo anesthesia tomorrow IY”H). Benny is at the tail end of a cold, but, is B”H able to go thru the remainder of his tests tomorrow. (It feels strange being “grateful” for clearance to have these tests that we rather not have to do). Benny also needed an IV put in his hand to receive an injection 24 hours prior to his test tomorrow and to receive contrast for the CT today (at least it is one poke for today, and spared him from getting one on Thursday). The difficult part of the day was keeping Benny from pulling out the IV (while kicking, screaming and crying) and getting him to drink 2 8 0z cups of soda mixed with contrast for the CT scan today. We were able to distract Benny for a few minutes at the gift shop while he picked out a balloon and racing car that made noise and flashed lights.  We managed to have him drink 10/16 oz of contrast and B”H that did the job.

Around 4 pm (1/2 after our appointment time) we were called in for the CT. At that point Benny was totally exhausted and did not want to lie down for the scan. It took three people to hold him down. We turned on his favorite song, “Yesh Tikvah by Benny Freidman and within two minutes he was out cold. B”H the scan was completed in a few minutes and we were on our way home.  We should here the results we are all Davening for this Thursday IY”H.

Thank you for all your continuos Tefillos and emails to let us know your with us every step of the way. Two emails stood out today. One was received from a friend who also knew of another couple on the other end of the country who was in the hospital today, praying for their son, as he underwent his “35th” surgery. I can’t begin to imagine! We were asked if we could Daven for their son and of course we did and would like to ask of you the same, Refuah Shlema Chaim Ben Nechama.

Refuah Shlema to baby, Menachem Moshe ben Chana Gitel who is still in the hospital after three weeks (as a result of a strep infection).

The second email I received is from a former classmate and dear friend who’s daughter is getting married IY”H tomorrow. She wrote us to tell us how she is Davening for Binyomin Chaim every day and especially her wedding day. WOW! It was just about one year ago that I received a call from this friend’s other daughter on her wedding day, telling me that she has Benny in her prayers. That phone call meant the world to me. I will never forget it!  May she and her Chosen be blessed with a long and healthy life filled with true Simcha.

May we all be Zoche to walk down our children’s wedding aisle in good health and be Zoche to the Nachas (happiness) that follows IY”H.

This video took place in the hospital waiting room today. If you listen closely you will hear a group of singers that come sing to patients as they wait for their various tests.  The song  was “Don’t worry be Happy.” Perhaps they know, it is the month of Adar. Video: Dont Worry be Happy

 

 

 

 

IY”H We Pray for a Clean Bill of Health

It’s that time again :( . Benny’s (3 month) scans begin tomorrow and Wednesday, with IY”H “good results” on Thursday. Being that it is the month of Adar, a time of Simcha (happiness), that will be our attitude this week. At least I will try my best. (Celebrating in a couple of weddings IY”H helps too!) Although, we have been down this road before, it does not get any easier seeing Benny with an IV line and being put under sedation.  It is not natural or the norm for a three year old child to be in this predicament and therefore, I can never or want to get comfortable with this scene.

Earlier this evening, I attending a community wide gathering of words of inspiration as a tribute to our missed and beloved dear friend, Mrs. Avigail Rechnitz O”H. As I am writing this post, and about my feelings of being uncomfortable seeing Benny undergo these tests, I some how see a connection with tonight’s lecture. Tonight, the lecturer Rebbetzin Aviva Feiner, discussed our level of comfort and the ability to make a change. Just as I never want to be comfortable with seeing Benny undergo these scans, because it is not natural, the same should apply with other aspects of my life.

We are all given Mitzvos and Commandments to abide by; following them should be the natural way of life, the comfortable way of life. Straying from these laws should make us uncomfortable. However, we live in world today with too many distractions to name and sometimes recognize, which lead us to believe that breaking the laws (not performing the Mitzvos the way we are supposed too) is really the “norm.” We make allowances because we want to fit in and because we don’t want to see the “not norms” as “not norms.”  Walking the corridors of Children’s Hospital and seeing children with all sorts of special needs is not the “norm.” It is not a “norm” that any parent wishes for.  The same holds true from our Heavenly Father Above. When Hashem see’s His children stray from the Torah (the norm), perhaps we are viewed as that child wearing a cast or Chas Veshalom worse.

The next time we are faced with temptation, if we equate the temptation with a “cast” (not the norm), just maybe, we can overcome the temptation and stay on the true path of Hashem. Let us not get fooled by the “counterfeit ” as real.

We thank you for having our Binyomin Chaim ben Faigie Sarah in your daily Tefillos and IY”H may we be Zoche to share in good news in a few days.

planting lifeguard

We are all a life line

Although, winter is still very present (for those on the east coast and some days on the west), vacation has passed.

Baruch Hashem we enjoyed a wonderful family vacation in Seattle once again. Comparing pictures this year from last, was a huge change. Benny now has color in face, golden curls on his head and a body that is B”H healed with nothing foreign on the inside or out.

While on vacation, I received a text from a friend to please Daven for her baby who got a rare infection as a result of strep and is now in the NICU. It has now been 13 nights that Menachem Moshe and his mommy have been in the hospital.   I have trouble sleeping at night just thinking about them, knowing what it is like to sleep (or lack of it) in a hospital, the pain, the worry, the physical discomfort, the sound of the machines beeping all night, or the irregularity of the beeping which cause panic, the noise of the door opening and closing by the nurses to check on the baby throughout the night, the worry that goes thru a mothers mind about her  5 other children at home and their needs and the list goes on.

Menachem Moshe Ben Chana Gittel is in need of our Tefillos. An extra kapitol (chapter) a day of Tehillim (psalms), Kavana (concentration) on the Bracha of Asher Yatzor (that is so powerful, especially with children), Challah, bringing in Shabbos a few minutes early, or even just talking to Hashem and asking for a Refuah Shlema when your stuck at a red light!

I am by no means a preacher, but, I do know what a huge comfort it is, to have people who care for and Daven for my child.  The support brings hope and strength.

Let us stand behind these Cholim and their families and be a support, a life line.

Let us hear B’sorus Tovos (even before this post gets to your inbox)   baby Moishe is taking steps forward on the right direction and IY”H will have a complete Refuah Shlema.

Let us continue to be Mispallel to hear good news from Eretz Yisroel in the Refuos of Chaim Michael Shlomo ben Michal and Refael Yitzchak Isaac by Michal and all of Cholim in Klal Yisroel.

Good Shabbos!

 

 

Tu B’Shvat

I want to apologize for not being in touch via Team Benny for about a month. B”H Benny is doing well and enjoying his time in school and playtime after school. It was this time last year that Benny’s hair started “sprouting” on Tu B’shvat.  I will be forever grateful.

I have to be honest, making a Bar Mitzvah and Upshern the same weekend was a huge undertaking and for some reason made me more tired than ever. B”H for simchos which I wouldn’t trade for the world.

IY”H over the weekend I will try and catch up what has been going on in Benny’s life. In the meantime I am very happy to share the wonderful news that Elimelech Ben Basya has completed his final treatments in the hospital.  There are still a couple more at home, but after tomorrow IYH, he will never have to spend another night there. Please daven that all his scans (in a few weeks) are 1000% clean.

Below are a few pictures updated pictures of Benny from this past week. Enjoy and Good Shabbos.

tbshvat

fruittbshvat Video of Benny playing in a band zaidabestfriendMan’s Best Friend

smonica

 

When a Vision becomes Reality

This past Shabbos we B”H celebrated two momentous occasions, our son Yosef Tzvi’s Bar Mitzvah and Benny’s Upshern. I am still recuperating from all the festivities and trying to get to bed at a reasonable time, but I did want to share of few thoughts before anymore time has elapsed.

It’s no coincidence that these two brother’s shared this weekend of Simchos together. They have always had a close relationship and are always there for each other in good times and more difficult ones. For the past several weeks, Benny has been saying that he is also having a Bar Mitzvah and Joey is going to get his hair cut.

Both boys have gone thru their own set of challenges to get to this point. Both boys have taught me that no matter what challenge one is handed, with determination, hard work, perseverance, and most of all, solidifying a deep connection with Hakodosh Baruch Hu, they can be overcome.

Over the course of the weekend, there were those “moments” that stood out more than other’s.  They say, it rains about 10 days out of the year in LA. Well, this past Shabbos was one of those ten. As I walked to Shul (between the drops) I wasn’t disturbed by the weather in the least. I felt it was a Simun Bracha and sure enough it was. The rain stopped before Shul was over, just in time for people to join us for the Kiddush in our backyard (tent just in case).  I thought to myself what could the rain represent? Could it be, Hashed showing us all the tears that were shed for our children, tears of Rachamim (mercy). It was a shower of Bracha.  I was also told by a Rebbetzin that her mother used to tell her, rain is a sign that a Big Tzadik has arrived to town. Looking around at the people in shul, by the Kiddush, and the siyum, I felt I was in the presence of great Tzadikim and Tzidkanious (holy men and women and children). Each and every person present has demonstrated throughout our ordeal, the characteristics of a Holy Tzadik. It felt humbling and uplifting to be in the presence of 100′s of Holy individuals.

The next “moment,” was when Yosef Tzvi stood by the Bima with his father on one side and his Rebbi on the other, about to begin Leighning (reading) his Parsha (Torah portion). I became overcome with emotion and broke down crying. I could hear my daughter in the background asking her sister, “why is Mommy crying?”  The answer is simple.  The long awaited day that I dreamed of, day after day, week after week, month after month, year after year, had finally arrived. I knew this was the beginning of a new chapter of Yosef Tzvi’s life and ours as well. I would no longer be saying, “practice Yosef Tzvi…practice..practice..or time to go to Rebbi!” It was time for Yosef Tzvi to shine and boy did he light up the shul when he leighned. Every word he pronounced melted my heart and elevated my soul. It was a moment I wish upon every mother.

A heart wrenching “moment,” was when Ari introduced our dear friend Rabbi Avi Feder to speak during Shabbos lunch. The Feder’s, our dear friends and neighbors whom we have shared so many wonderful memories with over the years. And then, the connection that I don’t wish upon any parent, a parent who fights to save his/her child’s life. Although, the symptoms and treatments of our precious boys were different, the coping mechanisms were the same. We both needed all of your Tefillos, your good deeds, your tears, your friendships, your Chizuk, and your endless Chessed. We both experienced first hand physically being carried on the wings of Hashem when we could no longer stand ourselves, the greatness of Am Yisroel in lifting the heavy weight off our shoulders, and the Nissim (miracles) Hashem performed on a daily basis. Then, there was the Chizuk that we gave one another, that only a parent that has gone thru such catastrophe can give one another. To have the Feder’s in our presence to share in our Simcha was truly a Nes (miracle). May Hashed continue to bless Avrohom Elimelech ben Nechama Esther, Chaya Malka bas Leah Frumit, Rafael Yoel Ozer ben Chaya Malka and all their children with good health, Mazal, Parnassa and Bracha for 120 years. (Please continue to daven for these righteous individuals).

The  wow “moment,” was when Ari addressed Yosef Tzvi at his Bar Mitzvah celebration and gave him a Bracha. Yosef Tzvi internalized the message and within minutes his eyes swelled and teared up. Becoming Bar Mitzvah wasn’t about the party and the “gifts”, but about using his abilities and strengths that he is blessed with, and follow in the ways of Hashem. Having spent countless days in the hospital with Benny over the last two years, Yosef Tzvi has learned to appreciate life, in ways most 12 year old’s, B”H never will experience. He has also learned to bring Simcha (happiness) into some of the darkest places. My Bracha to Yosef Tzvi is that he should he should continue to bring Simcha into this world and the one above in the happiest of times.

The Simcha weekend was completed with Benny’s upshern and Siyum Hatorah in honor of Benny’s Refuah. The final “moment” was when Rabbi Weiner (for 120) took a pair of scissors and snipped off a few strands of Benny’s golden hair. It was at that moment that my vision of the past two years became a reality. This vision is what got me thru some of the most challenging times. The first Upshern that Benny had was “scissorless,” and yet hair was shed everywhere in my bed for days and weeks. I refused to cut it and would say, “if Hashem wants it, let Him take it without my help.” That being said, I spent half the night envisioning the day it would grow back and we would be able to cut it for real by his third birthday IY”H.

Throughout the weekend, there was made mention of my Emunah and Bitachon and the Chizuk that I have given to other’s. I wouldn’t be honest with myself nor with you if I did not mention the source from where this came from. I am eternally grateful to my husband, Ari, for teaching me and growing with me in Emunah and Bitachon, no matter what the challenge Hashem has bestowed upon us. Ari allowed me to cry, and sometimes yell (just to let it out), but did not allow me to fall into a state of depression (not for more than a few days at most).  Ari taught me to see the challenges as gifts from Hashem which really gave me an energy level that was unachievable on my own.  I thank you from the bottom of my heart and soul for all that you have done and continue to do on a daily basis. May Hashem bless each and everyone of you with your Ezer K’negdo (match) so that you can reach your full potential and purpose in this world.

Simchas Chanukah

It has been a long while. B”H we have been extremely busy planning Joey’s Bar Mitzvah and Benny’s upshern iY”H.
We look forward to greeting all of you who plan on attending.
Benny is quite excited for his upshern and his “Bar Mitzvah”. I took him to Target a few days ago to pick out a Chanukah present in the toy isle. He then told me he doesn’t want a toy, he wants shirts and pants and a Yankee jersey with pants. It was quite a scene when they didn’t sell the Yankees in LA!
This morning he sure made my day. He said “mommy your pretty. Not your ‘likstip’ but your face”. Then as I dropped him off at school he said, “you didn’t say I was handsome!”
Benny lit his “Norah” every night with a Bracha. He is so proud and loves being able to perform Mitzvos.
Wishing you all a wonderful Chanukah and may we all be blessed with miracles in our life.
Pictures are of Benny playing Dreidel and enjoying a day at Legoland during Chanukah vacation .

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Upshern Here We Come!

B”H it was a great day!  This afternoon we got Benny’s test results on this past week’s tests.  B”H he got a clean bill of health and given the green light to go ahead and enjoy living each and every moment (at least until the next scans in 3 months).

On the way to the hospital, Benny asked several times for a shot. He would point to his hand and say he had a boo boo and then asked for a shot. Sure enough, he did end up getting a flu shot before he left the hospital. He didn’t cry for more than 5 seconds (so I was told). B”H Joey came with us to the doctor appointment and stayed with Benny in the room, while I waited in the hallway. It’s incredible that after this amount of time you would I would get used to needles, but I haven’t. B”H Benny does has not inherited my phobia and is a real “champ.”

I have been waiting for this day for many reasons. We are B”H in the midst of planning two special Simchos in our family. We are making our first Bar Mitzvah for our son Yosef Tzvi and we are also making Benny’s Upshern (1st hair cut) the same weekend. Todays confirmation, put a whole new energy level into the planning; we eliminated “worrying!” I can now plan a cancer free Simcha, Baruch Hashem!!!  Hashem is giving us the opportunity to cut Benny’s hair this time around. It’s HUGE!!!

Arriving home around 6 pm from the hospital, I went straight to work in the kitchen. I had quiet a few helpers, which did require a great deal of patience, but B”H I managed.

Check out Chef Benny in the kitchen: Click on Video ChefBenny
chefbennyDr. Tran
dr tran

 

Dr. Joey

Dr. Joey

 

 

Scans are over B”H

ctmachine

IY”H we won’t be seeing this machine again for at least 3 months. IY”H with the coming of Moshiach we will never have to see it again!

Thank you all for Davening extra hard, giving Tzedekah, and doing Mitzvos as a Zechus for Benny today.  May Hashem listen and give Binyomin Chaim continued good health.  We will receive the results from our doctor this Thursday IY”H. Being that Thursday is light years away when waiting for test results, we did our best to coerce the technicians into giving us some indication one way or another. They are not doctors, but they do operate these machines all day. (Off the record, they said we will see you in three months, which we took as a good sign IY”H).

Benny was an amazing patient today. He is a favorite by all the nurses KI”H. After checking in for the test, Benny was given a liquid contrast to drink (about 16-20 oz over 1 1/2 hours). During that time, we went to visit our former doctor (who is currently in the research department this year,) and then to the 4th Floor to see the nurses that used to treat Benny. Benny brought them doughnuts too. They were so happy to see him and went crazy over his hair (a hot commodity in that unit).  We also had the privilege of meeting up with Corola, the most special Child Life Specialists. She accompanied us back to where Benny would be having his scans and stayed in the room while he got his IV and scans.

Unfortunately, he had to have an IV again, have his blood drawn, and receive a contrast for the CT scan. He was so brave, unlike his Mommy who couldn’t go into the room when the IV was inserted. I was called a “chicken” and responded with, “I agree, I am.” I also let the nurses know,  if I did go in the room, they would end up with two patients. (Chas Veshalom).   B”H Ari and Corola and most of all Benny, did a great job.

Benny did not cry a bit and was schmoozing the entire time. We are all so grateful that today’s test went as smooth as possible.

The morning began with a trip to the Apple store. I needed to get the volume of my phone fixed. I did not have an appointment, but after being one of the first in the store, I was able to get an appointment 20 minutes later. So there I was, sitting on a stool by the “Genius Bar,” waiting to be seen by a technician. Fortunately, the wait was not very long before I received the diagnosis. It seems that my phone has come in contact with liquid and is not repairable. Luckily, I am eligible for an upgrade and can receive a new phone.

As I was going thru this morning’s experience, all I could think of is how this correlates to  what will take place this afternoon. The check in… the waiting…the test…the results. Then I thought to myself, if real life could be this easy. Imagine if after the doctor examines his patient, he says, “it’s not repairable, it has to be replaced and poof, he goes to the storage in the back and appears with a new body part.”   We all know this does exist on some level, but the difference between an inanimate object and real one is the power of prayer. When I was in the Apple store, I didn’t send out an email to please Daven for my phone.  Having both of these experiences in the same day, helps put life into perspective. Where should I focus my energy? I give you all a Bracha that your Tefillah (prayers) continue to be strong and meaningful.  Your prayers should keep you out of hospitals and that the only diagnosis you should ever need is on your phone.

Birthday Week!

bennys bdayB”H Benny celebrated turning 3 years old all week long. Beginning with his Hebrew birthday early in the week and ending with his English.

In honor of Benny’s hebrew birthday, Zaida brought cupcakes to school. Unfortunately, we were out of town and missed the birthday celebration.  Morah was so thoughtful and sent us pictures. Morah also went out of her way to give Benny a second birthday party on Thursday, so I could be there in person. All of Benny’s friends sang Happy Birthday, ate doughnuts, and gave Tzedeka in honor of Benny’s birthday. Thank you Morah Rochel and Morah Mushka for giving Benny the “birthday special” twice in one week!

Birthday Video: bdaydance

Benny also celebrated his birthday with the doctors and nurses in the hospital.  Thank you Debbie (the technician who performed the MIBG scan), for the special birthday gifts you bought Benny. He has been enjoying his new lunch box in school since. However, the greatest birthday gift of all, IY”H, is a clean bill of health.

Later in the day, Benny received some surprise visitors (neighbors from across the street) adorned with cupcakes and balloons. What a treat. He also enjoyed his small pizza & ice cream party with his cousins, William, Jared, Julia and mommies.

Benny hit a huge milestone and put on Tzizus this week. Although, his upshern (hair cut) is in a few weeks, Benny does not like to miss out on a Mitzvah and insists on wearing his Tzizus and Kipa at all times. He walks around feeling proud and like a “Big Boy.”

It has been a year since Benny was just two and celebrating his birthday in the hospital.  I will never forget the love and support he received while celebrating his 2nd birthday in isolation during transplant.There were many of you who took the time out of your hectic schedules, to wave to Benny, and sing Happy Birthday to him looking up from the  bday3playground, as he looked down, out the hospital window. The releasing of dozens of balloons really put a smile on his face too!

As I reflect back this past year and see how much a two year old has accomplished, I am deeply inspired and humbled. I pray that Hashem continues to bless our Binyomin Chaim with good health, Arichos Yamim (long life) and the ability to bring Simcha (joy) to the world and beyond.

This coming Monday Benny continues with scans, a CT. Hopefully we will IY”H hear good news and not have to visit the hospital again for at least 3 months.

Post scans

B”H Benny is sleeping comfortably in his own bed.
Thank you all for Davening on his and Eli’s behalf today. IY”H we hope to report good news soon (Dr appt next Thursday).
Benny was an amazing sport this morning. Because he needed anesthesia he was not allowed to eat or drink anything this morning. He insisted on holding a bag of Cheerios during the one hour he went to school. We told him he couldn’t eat them before the doctor said so, and so he remained patient.
I had picked up doughnuts for the nurses and staff of CHLA and doughnut holes doe Benny for after the scan. Benny insisted on holding the doughnuts while Waiting to see the doctor.
Unfortunately his patience ran out after the doctor examined him and did not give him permission to eat his doughnut . Benny threw and fit and that was before he got poked with an IV :( !
Finally after two more hours Benny awoke from sedation and the first thing he said whole half asleep was “doughnut.” The nurse said he had to drink first, so he did. Then as she was telling us to wait before he eats solids he grabbed the doughnut and snarf fed it down. Then another and another. He ate a total if 7 doughnut holes (hole as a master of fact) and 3 more in the car ride home. I would have shared the video but my phone died. We all had a good laugh and he definitely made a lasting impression with the nurses.
When asked why Benny was wearing a crown we told them he was celebrating his birthday all week. IY”H November 14 is his English birthday.
The nurse that took the images of Benny today was incredibly warm as she always is. However, today, she went out of her way and after the scans, she went to the hospital gift shop and bought Benny and whole bag of birthday presents.
Thank you Deb. we love you . You are the best ever!
Once we got home, Benny got a second wind and played baseball the rest of the day. After he caught the ball I said “yay” and he said ” Yankees don’t like you to say yay!” He also told me “have patience” when I threw the ball before he was ready to catch.
It’s after midnight “happy birthday Benny!!!” Yay!

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Important Scans today! Please Daven

At about 11 am Benny IY”H will be going for scans. He will have to be under anesthesia for this test because he has to be completely still for 1 1/2 hours. This is his first series of scans since he was declared cancer free B”H.

Following Benny’s scan, Elimelech ben Basya will undergo the same scan. Although, he is still currently in treatment we pray that the scans show zero disease remaining.

On the way to school this morning, we passed Rabbi Bess who gave Benny a bracha that he get a “zero” on his test today.

Please take a moment to Daven for these precious boys for cancer free scans. Thank you!

Elimelech ben Basya

Binyomin Chaim ben Faigie Sarah

 

 

Psalms Chapter 130 תְּהִלִּים

א  שִׁיר הַמַּעֲלוֹת:
מִמַּעֲמַקִּים קְרָאתִיךָ    יְהוָה.
1 A Song of Ascents. {N}
Out of the depths have I called Thee, O LORD.
ב  אֲדֹנָי,    שִׁמְעָה בְקוֹלִי:
תִּהְיֶינָה אָזְנֶיךָ, קַשֻּׁבוֹת–    לְקוֹל, תַּחֲנוּנָי.
2 Lord, hearken unto my voice; {N}
let Thine ears be attentive to the voice of my supplications.
ג  אִם-עֲו‍ֹנוֹת תִּשְׁמָר-יָהּ–    אֲדֹנָי, מִי יַעֲמֹד. 3 If Thou, LORD, shouldest mark iniquities, O Lord, who could stand?
ד  כִּי-עִמְּךָ הַסְּלִיחָה–    לְמַעַן, תִּוָּרֵא. 4 For with Thee there is forgiveness, that Thou mayest be feared.
ה  קִוִּיתִי יְהוָה, קִוְּתָה נַפְשִׁי;    וְלִדְבָרוֹ הוֹחָלְתִּי. 5 I wait for the LORD, my soul doth wait, and in His word do I hope.
ו  נַפְשִׁי לַאדֹנָי–    מִשֹּׁמְרִים לַבֹּקֶר, שֹׁמְרִים לַבֹּקֶר. 6 My soul waiteth for the Lord, more than watchmen for the morning; yea, more than watchmen for the morning.
ז  יַחֵל יִשְׂרָאֵל, אֶל-יְהוָה:    כִּי-עִם-יְהוָה הַחֶסֶד; וְהַרְבֵּה עִמּוֹ פְדוּת. 7 O Israel, hope in the LORD; for with the LORD there is mercy, and with Him is plenteous redemption.
ח  וְהוּא, יִפְדֶּה אֶת-יִשְׂרָאֵל–    מִכֹּל, עֲו‍ֹנֹתָיו. 8 And He will redeem Israel from all his iniquities. {P}

8 The LORD shall guard thy going out and thy coming in, from this time forth and for ever. {P}

 

 

 

Birthday Week

Sunday Nov. 10

Happy Birthday Benny (Hebrew Bday).
Benny is now old enough to wear Tzizus and fully “trained.” He’s has been waiting for this day for so long. B”H he has reached this milestone and IY”H will continue to reach many many more to come.
Benny’s Zaida brought cupcakes to school in honor of Benny’s Hebrew birthday. Unfortunately, we were away!  B”H for grandparents and Morah’s who know how to make Benny feel special.

bday in school

Today, brought our 3 month vacation from the hospital to an end. IY”H it should just be a  few days of in and out and we will be able to enjoy another 3 months off.  Today, Benny received an injection with certain mediations preparing him for tomorrow’s scan. Benny was  entertained by some wonderful singers whose job it is to cheer up the kids.

Video: happy bday benny

Please take a moment from your day to Daven that Binyomin Chaim Ben Faigie Sarah, that his scans come out clean. The following Monday will be the last scan and then we wait a few days for results.

MAZAL TOV YOSEF TZVI

 

 

 

Today, was a very special day indeed. B”H our son Yosef Tzvi (Joey) put on Tefillin.  This important milestone was celebrated with his Rebbeim, classmates, brother’s, Zaida and Bubbie, Auntie Shira and a surprise visitor, cousin Etzion (straight off the plane from Singapore).
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                                                    Photography by: Yehudis Schoen Photography

Benny enjoyed the celebration as you can see. IY”H we should be Zoche to celebrate him becoming Bar Mitzvah in the not so distant future.

 

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Benny is Shabbos Abba

( In case you have already read the post, I just was able to add video of Benny saying Kiddush in playgroup and pretending to be a pitcher at the beach).

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Video of Shabbos Abba: shabbosabba

Pitching in the minor leagues: MVP

 

The baseball season may be over, but Benny continues to pitch his ball everyday.   He throws just about anything he can, including candy. Maybe he is practicing throwing candy for Joey’s Bar Mitzvah which is coming up very soon IY”H.

He also asks, “do you like the Yankees?”

Today was a very meaningful day.

I had the privilege of baking Challah for Bikur Cholim this Shabbos and participate in being a part of 40 women making the Bracha of Hafrashas Challah as a zechus (merit) for those in need of a Refuah Shlema.  While most people who participate in this tremendous Mitzvah have not been on the recipient e

nd of this Chesed B”H, we have.  It was a wonderful feeling being on the other end, the giving end. But, I have to say receiving the fresh Challah in the hospital or just getting home on an erev Shabbos was also amazing. Knowing that someone special took the time out of her very busy day to think of other’s in time of need. Knowing first hand that there are good people out there and good deeds being performed.

The second part of the morning we were treated to participating in seeing Benny as the Shabbos Abba (Daddy) in playgroup. He pretended to go to Shul, sing Shalom Alechem, make Kiddush and say Hamotzei and then of course eat Shabbos party.

Many emotions were stirred up as Ari and I witnessed Benny sitting with his friends in playgroup B”H, as every two year old should be.

There is no coincidence that this was the week to bake and Benny chosen as the Abba.   Benny lives for Shabbos just as he did in the hospital; he would ask, “when is Shabbos” (as early as Sunday).   Maybe he feels the power of Shabbos and knows that if we all just keep one Shabbos the final Redemption will come.

I read over a beautiful p’shat this morning said over by Rabbi Avtzon:

This week is Shabbos Mevorchim  Kislev– we bless the new moon.

Kislev, is the 9th month out of the year. The month of Kislev is connected to the tribe of Binyomin, who brought his sacrifice in the 9th month. Binyomin was the only tribe born in Eretz Yisroel. He merited that the Bais Hamikdosh be built in his portion of Eretz Yisroel.  The month of Kislev intstills in us the Emunah of the rebuilding of the Bais HaMikdash Hashlishi.   This is also the month that we IY”H celebrate Binyomin Chaim turning three.  The month is which Benny will receive his hair cut (maybe!), put on Tzitzus and officially become a “big boy”.  IY”H may he be Zoche (worthy) to fulfill his purpose and serve as a Kohen in the Bais Hamikdosh and bless our nation this coming month.

 

A Mother’s Love

Some posts are easier to write than other’s. This is one of those other’s.

I have been forming several thoughts since last week and I am not quite sure how it will go.

Last Shabbos we celebrated in our shul the Bar Mitzvah of Meir Dov Aryeh Ben Avigayil Maima Rochel Z”L. It has been two very long months since the Petira of Avigayil O”H, however, there is not a day that goes by that I am not reminded of her. Especially, because Benny loves playing with the toys that she bought him while he was in the hospital.

Last Shabbos, I attended Davening on Friday night in the shul to hear the beautiful  melodies sung by the Shira Choir. As I closed my eyes listening to the choir, I envisioned the Tefillos going up to Shamayim, bringing Simcha to those above. Although, Avigayil O”H, is in the High Heavens, her presence was surely felt down below, at her son’s Bar Mitzvah.   The energy in the room reminded me of the Yomim Noraim (High Holidays) and the closeness one feels with Hakodesh Baruchu at that time. Just as Hashem comes down to be close to us during Rosh Hashana-Yom Kippur, so does a loved one, join us, during times of Simchos.

Throughout, Rosh Hashana and Yom Kippur Davening, I find myself envisioning, standing in the court yard of the Bais Hamikdosh, and what it would be like when Moshiach comes IY”H.

As I stood there in shul envisioning Avigayil Z”L looking down proud of her son, the vision came to an abrupt end when I heard her son, Meir, on the other side of the Mechitza recite Kadesh. The tears of joy quickly turned to ones of sorrow. Why is it that a Bar Mitzvah boy is standing before his fellow Mispalalim saying Kadesh for his mother?

I don’t begin to question, nor do I attempt to understand. All I know is, there is a greater picture, way beyond my vision.  All I can do is pray that this child and his siblings BE”H will be Zoche to be reunited in future Simchos with their mother and that we will all share in the greatest Simcha of all with the coming of Moshiach IY”H.

This beautiful Posuk was composed into a beautiful melody by Meir’s uncle  Mr. Shlomo Yehuda Rechnitz. (unfortunately the direction of Hebrew words came out reversed when I took the picture). The english reads: “for this child I Davened and Hashem gave to me my request that I beseeched from him.  And I shall continue to Daven forever. For I am your Mother, who stands by you for eternity. ”

 

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Video of melody

As I light my candles this Shabbos, (IY”H, I am aiming to do this 10 minutes before the actual candle lighting time), I will have in mind all those in need of a Refuah and Yeshua. I will have in mind those who unfortunately are no longer able to light O”H, and Daven for their children as well. Avigayil O”H, thank you for being a role model to all of us. May your light continue to shine in this world and above for all eternity. Each and every one of us have to ability to make an impact in this world.  Make your imprint today!  Good Shabbos

 

Benny Says “I’m a Big Boy”

Benny has reached a new milestone B”H.

The past few days Benny has decided on his own, to toilet train himself. He really wants to be able to wear his Tzizus when he turns 3 IY”H.  It’s adorable to see. He runs to the bathroom when he needs it. He won’t let anyone come in with him and as he goes in, he says, “don’t look” and closes the door. When he comes out, he says, “I washed my hands myself.”

Tonight, I took Benny shopping. On the way to the store, he said, “when Hashem makes me bigger (IY”H), I will drive.”  I said, “Amein.”

Benny finally got what he has been asking for and boy was he proud.

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Birthday Wishes

Today, I celebrated my birthday with my great nephew Shmuel Tuvia who turned one.
This Yom Tov happens to be a birthday for a few immediate family members; Yocheved, Ari and myself.
Birthday’s bring special blessings which I would like to share with all of you. I personally would like to wish you loyal followers, a life full of good Mazal, Bracha and simcha.
wishing you all a wonderful Yom tov.

Faigie

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The Power of N’eilla

It’s the morning (4:30 am), after a very long Yom Kippur. What made it feel longer was the fact that we did not get much sleep during the night. Unfortunately, Benny spiked a fever and was up most of the night. Just in case, we did not have what to Daven for, Hashem very quickly reminded us. This is the first time Benny has had a fever since his lines have been removed.  Let us pray that it is only a virus and disappears as fast as it arrived.

At 7 am, the first thing out of Benny’s mouth was, “I want to go to shul!”  I waited a few hours before I took him, but we made it. He was not interested in staying with the babysitters, so after a couple of hours of back and forth between Ari and myself, I took him home.

B”H I was able to lay down for a couple of hours before heading back for N’eilla. I contemplated before leaving whether to take Benny. I had read something from Reb. Yemima Mizrachi the night before saying, how important the Tefillah of N’eilla is and if possible it is good to bring the children because Hashem loves the prayers of children. I opted to leave Benny because of his fever and he was happy playing with brothers and babysitter. About an hour later, the final minutes before N’eilla was about to be concluded,  I got a tap on my shoulder in shul. My son was waiting outside of shul with Benny in his arms. He told me Benny was screeching for me. I immediately brought him in shul where he remained quietly in my arms and listened to the Chazan recite the words, “Shema Yisroel, Baruch Shem K’Vod (3 times) , and Hashem Ho Ha’Elokim (7 times), Avinu Malkeinu and Kaddish.”

The timing could not have been better. Although, my neck and shoulders were aching and I was at my weakest moment, I couldn’t have been happier to see and hold Benny. At that moment, I regained strength and just stood there holding him, kissing him, crying and Davening all at once.  Benny couldn’t stay away. He needed to Daven and ask Hashem on his own to be inscribed in the Book of Life.

May Hashem answer all our Tefillos and give us a life filled with Good Health, Good Mazal and Bracha that is revealed for good, for 120 years.

 

 

 

You Should be Inscribed in The Book of Life

A close friend shared this email with me that I felt is important to share as we go into Yom Kippor and Shabbos Kodesh:

When Yom Kippor would fall out on Shabbos, R’ Levi Yitzchak of Berditchev would be very calm. Reason being, on Shabbos one is not allowed to write except for matters dealing with saving a life. Therefore, Hashem is only able to write us down for “life” since that is Pikuach Nefesh, since death Chas Veshalom is for sure not allowed to be written on Shabbos.

May we all merit a Gmar Chasima Tova.

Please have extra K’vana for our Cholim, our children our mothers and fathers for a complete Refuah Shlema min Hashamayim.

Good Yom Tov

 

Erev Yom Kippur

I was up most of the night thinking about this time last year. It wasn’t until this morning that I opened my computer to look back at last year’s postings around this time. Clicking on the video of Benny saying, “quack quack,” brought new meaning to the power of Teshuva. Benny was bald, eyelash less,  dark circles under his eyes, he looked liked a child going thru treatment. Ironically, I did not see him that way at the time. B”H, Hashem allowed me to see beyond his physical symptoms and allow his Simchas Hachaim to shine thru.

Today, as we did Kaparos, I once again was fixated on Benny.  But this time, it was his golden hair, his bright blue eyes, his peachy skin sprinkled with freckles, and of course most of all, his love for Hashem and performing His Mitzvos.

Click on video:  kaparos one year ago

Today’s Kaparos: kaporos22013

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This past year unlike any other year, I was able to imagine all the Tefillos and Ma’asim Tovim and Tzedeka tipping the scale, so that Binyomin Chaim ben Faigie Sarah and all those on the front lines, will BE”H, live. This coming year IY”H, I will continue to have that mental image for Benny and all the Cholim that have been added to the “front lines”. Unfortunately, there have been way too many names added to the cholim list’s this past year. Even one name on the list is too many. We also must continue to daven for R’ Sholom Rubashkin for his freedom and Jonathan Pollard for his freedom.

Let us have visually have in mind the names on the Cholim list being transferred to a discharge list. A list the reads, ” The List of Life.”  ”The List of Freedom.”

Wishing you and your loved ones a life full of good health, good Mazal, good Parnasah, Shiduchim, laughter and Simchos.

With Love,

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This  bedazzled Team Benny cap came in the mail this week as a gift from our new friend Julia, whom we met in Disneyland this past year (who noticed me as a result of wearing a beautiful Tznius skirt). (refer to previous post on our trip to Disney)

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Yesterday, I received a beautiful email from a dear cousin, Moshe. It was about reflection over this past year and hope for only good this coming year. Moshe also mentioned that last year he put  a picture of Benny in his Machzor of Rosh Hashana in order to help him with his Kavana in his davening.  He thought about removing it this year, but then decided to keep it in as a reminder of Emunah and the power of what Tefillah can accomplish. To all those that wrote in that they were inspired this past year and a half, it is only because you allowed yourself. Benny was given the opportunity to be a messenger, but it was YOU that noticed the opportunity and allowed yourself to inspired by a 1 1/2 year old. The change that took place over the past 16 plus months should only continue and give us all the strength to move forward in the right direction.

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Sunday night, I wrote about how grateful we are to each and every Team Benny member. Today, I will write about how grateful I am to the Ribono Shel Olam for the MVP, BENNY , Binyomin Chaim ben Faigie Sarah. Binyomin Chaim has taught me first hand what my purpose in life is. He taught me how to be a better person. How to have patience, how to be M’sameach (happy) in the most challenging times, and most of all, how to Believe! He taught me how to have a relationship with Hashem on a level I never knew existed.

The last day of the english calendar year, the news usually features a story of hero’s and famous individuals who passed away that year. As our year comes to a close, I would also like to reflect back and think of those individuals who have touched my life and unfortunately, are no longer in this world.  Mrs.Erica Klein O”H, Bracha Talazan, Mrs. Avigail Rechnitz O”H, and Mrs. Pessy Ben David.

A number of them I did not know, however, I was touched by their life and legacy. Aaron Tepfer A”H (Cedarhurst) (10 year old boy), Shoshie Stern A”H (Boca Raton)(12 year old girl).

This coming Rosh Hashana, I will daven for the families that are left to pick up the pieces after their loved ones have departed. I will Daven for the soldiers in Eretz Yisroel who put their lives on the line every day. I will daven for their parent’s to have Menuchas Hanefesh as well.  I will Daven for those individuals battling with cancer,  life threatening diseases and other ailments. I will Daven for those struggling to find their soul mate. I will Daven for those struggling to put food on their table.I will Daven for those students struggling to make it thru school. The list is lengthy, and unfortunately there is no shortage, but know that we are one nation and no one has to go thru these challenges alone.

On behalf of myself, Ari, Yocheved, Rifka Basya, Yosef Tzvi, Yehoshua Elyokim, Shmuel Tuvia and Binyomin Chaim, we would like to wish you all a year filled with only good health, Mazal, Bracha, Parnassa, and Simcha.  May we celebrate this coming year greeting the Moshiach in Yerushaliyim.

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(amazing apple cupcakes baked by Avigail Rosenblat)

“New Beginnings “

 

This past week was filled with many types of “new beginnings.” First being, back to school for Benny’s older brothers. Second, the marriage of his first cousin Yosef Kessler to Shira Andruiser. Third, the engagement of his cousin Riki Smilow to Avi Wertheimer. Fourth, the first day of high school for older sister, Rifka Basya. Finally, the first day of school for Benny!!!

All these Simchos come at the end of a very long year, but definitely give us a feeling of hope and happiness that carry us into this coming year ,IY”H, less than two days away.

As we come to the close of this most emotional year of our lives, I feel a proper Hakaros Hatov is in order. I apologize in advance if I leave out an act of Chesed (kindness) that was done and not mentioned. There are B”H so many, ones that I knew about and I am sure 100′s of others that I still don’t know about. No action, no Tefillah was too little. These Tefillos and Chasodim (good deeds) were performed by people from all walks of life.

(There is no special order)

Meals- Whether in the hospital or at home, we did not go hungry. Bikur Cholim and Chai Life with their endless choices of meals. Weekly, homemade hot potato Kugel (which still is going on), chop liver and coleslaw (brought to me by a special woman O”H, that I miss so much, along with flowers from her garden, and carried on by those that continue her legacy). My sister in law who coordinated the homemade meals at home.

Desserts- Endless cookies and cakes, even customized graduation hats made out of chocolate. Creative Rosh Hashana Cookies and Shaloach Manos cupcakes.

Tzedekah (Charity)- “Penny for Benny”, slogan came from a two year old boy. Los Angeles’s “Super Storm Benny” relief program for Hurricane Sandy victims. Chai Life Line runners for Team Benny. 100′s of charities that received funds as a Zechus for Benny’s Refuah.

Asher Yatzor – This Bracha and tens of thousands of other’s that were said with the proper Kavanah as a Zechus. Asher Yatzor laminated cards printed and distributed as a Zechus

Hafrashos Challah – 40 plus women getting together weekly to bake Challah and say the special Tefilla (prayer) as a Zechus . The laminated cards of Hafrashos Challah distributed around the globe.

Tehillim and Shiurim – Daily, weekly and monthly gatherings. 10th grade yeshiva boys in Baltimore learning on their own time (outside of yeshiva) as a Zechus for Benny. People taking on to complete all of Tanach, Mishna and Shas Bavli as a zechus for Benny. 100,00 plus Yidden saying Tehillim together at the Siyum Hashas for Benny and all Cholim. A neighbor spent three hours a day for over a week saying the entire Sefer Tehillim every day. The Tehillim HaChida was said 40 days by dozens of women.

Cocoa Club- free hot cocoa for students in Dallas, TX who came 15 minutes before school to say tehilim for Benny

Volunteers – Young men and young ladies thru Chai Life Line, Bikur Cholim, other organizations or just their own initiative attending to the needs of my other children. Playing ball with them, doing homework, or taking them shopping. Special mention to the two special girls (whom we consider our daughter’s) who made this period so much easier for our entire family. Equal shoutout to the “Avigdors” for their special brand of caring!

Family, Friends, Neighbors – Taking our boys to a baseball game, bowling, Scooter Jungle, taking our kids to NY (in style) to attend a family Bar Mitzvah while we were in CHOP (Children’s of Phili) with Benny. Flying in from all over the world to be M’vaker Choleh and give a helping hand with the other children. Friends that came to the hospital to play with Benny which gave me the opportunity to rest.

Toys – too many to list. Benny and siblings were showered with gifts. Each were well thought out and greatly enjoyed. Chai Life Line Chanukah gift program (truly amazing). A special Shabbos “mentchy set” among other toys from an incredible woman O”H who bought and delivered these toys while living with her own magefeh (plague).

Gifts – Books to give us Chizuk – “As Long as I Live” (one of my favorites), plus we were privileged to have Rabbi Margolit visit our home. Chumashim and Siddurim donated to schools and shuls as a Zechus for Benny.

Music – Private performances of local and visiting artists in the hospital and in our home or at the Wilshire Ebell Theater

K’varim – Endless visits to our ancestors, our Zaida Ben O”H & Bubbie Jean O”H, Zaida Shmilu O”H and Bubbie Chayala O”H , Zaide Yehoshua Elyokim O”H, great Gedolim

Tzadikim -Family and Friends visits to Holy Righteous men and women to receive Brochos at a moments notice for Benny’s Refuah

Exercise – those friends who took time out of their day to walk with me, so I could get some fresh air outside of the hospital.

Segulos – Different prayers or symbolic items that were given to us. Lighting candles as Benny went thru any procedures and tests.

Midnight calls – Emotional and medical advice given to us at all hours, day and night, in moments dark and light.

Pictures – to a special photographer for photographing our family the week before Benny’s hair fell out and making an album. Making collages and laminating them for the hospital room during transplant.

Gifts – comfortable clothes. robes and shoes for us while staying in the hospital .

Parnasah – to those that helped throughout this difficult period and especially helped restore life to this area of our lives as well.

Planes, Trains and Automobiles – to those that provided Benny’s safety on the way to receive treatment, or who picked Benny up in their “Ben”tly just for a joy ride around town.

Simchas Hachaim – to those that smiled, hugged, took our hand, looked into our eyes with sincerity and made us laugh.

Water Stands – Shabbos afternoon drinks given to passerby’s in the hot son. “bracha for Benny”

Dogs – to all those dogs and their owners who came to visit Benny in the hospital and at home . It was definitely a favorite!!!

Tzinius and Shmiros Haloshon Classes – steps to enhance our inner and outer beauty as a Zechus for Benny

Phone calls, letters, emails, text, cards- each one is saved and cherished for life

Chocolate, flowers, balloons – Delicious! Magnificent! Cheerful!

Doctors, Nurses, Child Life Specialist, Social Workers, therapist; we stand humble before you.

In two more days, I will be sharing this list with The Ribono Shel Olam and thanking Him for His wonderful creations and asking Him to reward you tenfold. (I am sure I will have 100′s of more examples from now until then, but for now, the hour is late and I must call it a day!).

to be continued…

 

 

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Benny Goes to School

Chasdei Hashem, this is the day we so longed for. Today, Benny B”H entered the world of being a “normal” kid, he went to school (playgroup) with 12 other classmates.

I thought I would also be going back to school this semester, however, B”H the transition went way beyond my expectations and I did not have to stay with Benny for more than 10 minutes.

I will write more later, but just wanted to share this milestone with all of you.

Thank you for all your Tefillos and Ma’asim Tovim that helped us reach this milestone B”H.

 

 

 

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Family Vacation B”H

Benny was challenged and Benny conquered.  Far from the challenges Benny experienced this past year.  Last week, B”H Benny learned to hike up and down mountains. He learned to ride a horse, he learned to drive a boat, maneuver himself around rocks in a river and skim the rocks on the water, and he learned to overcome his fear of heights while riding a cable car (well over 250 feet) above Mammoth Mountain.

B”H we had a wonderful family vacation in Mammoth and Yosemite. No, we were not near the fires, but did see black smoke in the distance.   This was a week of exploring and seeing the wondrous beauties of Hashem.  Throughout the trip, Ari and I couldn’t help but feel so relieved not to have to worry about being in close distance to the hospital, or about carrying for his lines. It was the first trip as a family in 17 months without the stress of cancer B”H Bli Iyn Horah!!!

After many of the fun activities Benny did, he said “aweshom (awesome) with a huge smile on his face!

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As we approach Rosh Hashana in less than two weeks time, we now have two images of Hashem’s greatness. The vast intricacies of the human body which represent the inner beauty of the world, and the magnificent views of the world, which we can see without a microscope.  It was a pleasure to feel the closeness of Hashem thru landscape and nature verses heart palpitating medical procedures.

mammoth

I hope to never take another sunrise or sunset for granted.

This past Shabbos we attended a Seudas Hodah for our dear friend, Alti who B”H was miraculously saved (along with all her fellow counselors and campers) a fire that burnt down their bunk house in Camp Simcha last Shabbos.  B”H there were no injuries and only hero’s that came out of this frightening episode. This was a page from a Siddur that was found in the fire. The wording couldn’t be more profound .

 

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The remaining words on the page of a siddur found singed among the ashes of the Camp Simcha bunkhouse that burned to the ground. All escaped unscathed.

Roughly translated:

To the nation of God…
On this day……
As we praised Hashem (The Name, God)…

Hashem will bring you everlasting…
Wonders at night…
Living souls…
Man of God will always see…

May Hashem continue to watch over ourselves and all of our precious children.

 

 

Mrs. Avigail Maima Rochel Rechnitz O”H

It has been seven long days and nights since the Petira (passing) of our dear friend, Avigail Maima Rochel Rechnitz O”H. Although, the skies are crystal clear, there remains a dark cloud over our community. Most conversations I have had over the past several days are about the deep sadness we all feel. Then the conversations invariably shift to the need to make a change in our community and ourselves.

The common theme throughout the Levaya (funeral and eulogies) was Avigail’s primary drive to help others. In the midst of her own hardship, and the tremendous physical pain she experienced, she couldn’t be stopped in her pursuit of helping.  Avigail’s O”H husband, R’ Yisroel Zev Rechnitz(YBLC”T) mentioned, that while Avigail was receiving chemo, she would be on the phone arranging Bikur Cholim tasks with no one the wiser.

Once, there was a Choleh being treated in the same hospital where Avigail was receiving chemo. They were on the phone with one another when a code blue rang out throughout the hospital.  When the person heard the code blue coming through the phone, she realized that Avigail was in the same hospital and asked “are you in the hospital?”

Thinking quickly, Avigail said she was visiting someone and then the Choleh asked, if when she was finished, she could please visit her next.  After 6 hours of chemotherapy, Avigail mustered up all her strength to go be M’Vaker Choleh this patient.

Our ancestor, Avigail, was one of the seven N’vios (prophetesses).  Avigail Meima Rochel O”H was a true N’via in our times. She knew the needs of others before they were verbalized. She knew of the empty cupboards that needed to be filled, of the lumpy mattresses that needed to be replaced, the outgrown children’s shoes that needed the next size up. She was determined to make a difference in those people’s lives.  She knew the meaning of life; she lived each minute, not for herself, but for others. Not only did she not waste an opportunity that came her way, she searched high and low for those chances. Throughout it all, no one knew of her incredible handiwork… or her hardship. No one knew that she was in need of the same Chesed she gave to 1000′s of others.

Avigail’s O”H illness was only revealed to the community two weeks before her Petirah. I consider those two weeks a tremendous Chesed that we were given a chance to cry, Daven and do what we could as a Zechus for her Refuah.

R’ Yisroel Zev (he should live and be well for 120 years), explained why Avigail wanted to keep her 2 plus year-long battle with this Machla a secret, it wasn’t because of privacy. It was because she felt and knew that if people knew of her illness, they would not call her for help. This “addiction” of helping others remained with her until her Neshama departed this world. However, I firmly believe that the kochos and legacy she left behind will continue in this world and in the next.

Avigail O”H, was a Tzanuah (a modest woman).  As R’ Shlomo Yehuda Rechnitz said at the Levaya, at one point while Avigail O”H, was intubated in the hospital, she was vigorously moving her hands around while heavily sedated. One hand was pulling to remove the intubation tube, while the other remained by her head holding on to her teichel (scarf) to ensure that her hair remained covered. Her Tzinius was deeply ingrained in her very being.

R’ Yisroel Zev said that Avigail was a diamond and that when we are not worthy to store it, Hashem removes it from our midst. The only part of his speech I disagree with is when he said he was not worthy to marry her. He is mistaken. Not only was he worthy, he enabled Avigail O”H to work her magic. Both of them as individuals and as a team built the Los Angeles community thru G’milus Chasadim.  I am sure that thousands of people can attest throughout the world that they too were recipients of their Chesed as well.

70 years after the second Churban, the Torah Shel Bal Pe (Oral Torah) was at risk of being forgotten. It was Reb Yehuda Hanasi, who gathered the information of all the Halochos and codified them in short hand, which became the Mishna.

We are 70 years after the destruction of the Holocaust. Although, we are living in a period of perhaps the greatest Torah learning since that bygone era, we must not forget one another.  Mitzvos ben Adam L’Chavero (between man and his fellow man) will serve as our touchstone toward the great Yeshua to come very speedily in our days. Avigail O”H, was the GPS of Chesed in our community. It is now our job to learn from her ways and follow the roadmap that she wrote for us.

As the songwriter Shewky so beautifully sings, “Mama Rochel cry for us again, won’t you shed a tear for your dear children…” We now are in desperate need of Avigail Meima Rochel O”H, along with Rochel Imenu (our Matriarch) to cry for us to hasten the days of our Geula Shlema B’korov.

 

Sadness

One did not have to personally know Avigail Maima Rochel bas Harav Chaim Aharon , Mrs Avigail Rechnitz, to feel the incredible loss we are all experiencing. But those of us who did have a connection, the pain is immeasurable.

A devoted wife, mother, daughter (in law), sister (in law), aunt, niece, friend, the woman behind the Ladies Bikur Cholim of Los Angeles and beyond, to name just a few. Avigail Maima Rochel bas Chaim Aharon, the caretaker of all those that didn’t have a soul to look after them. Making sure the less fortunate had food on their table, let alone a table to put the food on and a roof above the table. Avigail Maima Rochel, was a secret treasure in our midst. Those of us who were recipients of her Chesed, including myself and family, got a glimpse of some of that treasure, but there are too many jewels to count.

Taking my children for shoes today, a task that most of us don’t enjoy all that much, all I could think of is Avigail Maima Rochel’s children. They won’t have the privilege of going shopping for shoes or Yom Tov clothing with their mother. As a human being who doesn’t understand Hashem’s plan, I want to say it is not fair (while knowing we cannot question). As a person who constantly is reminded to work on my Emunah, Belief, today I am frightened.
Avigail, was a woman we all admired. A woman we all aspired to be like. Why? Because she lived each minute of her life reaching her full potential. She used her G-D given talents, not to her personal benefit, but to benefit others.
While Avigail was in the midst of her own personal battle, she didn’t stop taking on other people’s challenges even for a moment. She knew what every Choleh needed and fulfilled those needs down to the finest details. When Benny was in the midst of his battle, she knew that he loved Shabbos and showed up at the hospital with a toy Shabbos set. One that he plays with almost daily. This was done when I am sure it was difficult for her to do at that point, but it didn’t stop her none the less.
Her Levaya is in a couple of hours.. There will be plenty more to add
All I have been singing all day with Benny is a song that got us thru to this point. Ani MaAmin Be Emunah Shlema BVias Hamoshaich.
We need Moshiach . We need him now!

Refuah Shlema Rafael Yoel Ozer ben Chaya Malka

Please take a moment and say Tehillim for Rafael Yoel Ozer ben Chaya Malka. He is currently undergoing a very complicated neurosurgery.  Please have in mind that the surgeons should blessed with the skill to repair all the damages that occurred as a result of the horrific accident this past February.  Please Daven that the recovery should go smoothly without any pain.

Psalms Chapter 20 תְּהִלִּים

א  לַמְנַצֵּחַ, מִזְמוֹר לְדָוִד. 1 For the Leader. A Psalm of David.
ב  יַעַנְךָ יְהוָה, בְּיוֹם צָרָה;    יְשַׂגֶּבְךָ, שֵׁם אֱלֹהֵי יַעֲקֹב. 2 The LORD answer thee in the day of trouble; the name of the God of Jacob set thee up on high;
ג  יִשְׁלַח-עֶזְרְךָ מִקֹּדֶשׁ;    וּמִצִּיּוֹן, יִסְעָדֶךָּ. 3 Send forth thy help from the sanctuary, and support thee out of Zion;
ד  יִזְכֹּר כָּל-מִנְחֹתֶךָ;    וְעוֹלָתְךָ יְדַשְּׁנֶה סֶלָה. 4 Receive the memorial of all thy meal-offerings, and accept the fat of thy burnt-sacrifice; Selah
ה  יִתֶּן-לְךָ כִלְבָבֶךָ;    וְכָל-עֲצָתְךָ יְמַלֵּא. 5 Grant thee according to thine own heart, and fulfil all thy counsel.
ו  נְרַנְּנָה, בִּישׁוּעָתֶךָ–    וּבְשֵׁם-אֱלֹהֵינוּ נִדְגֹּל;
יְמַלֵּא יְהוָה,    כָּל-מִשְׁאֲלוֹתֶיךָ.
6 We will shout for joy in thy victory, and in the name of our God we will set up our standards; {N}
the LORD fulfil all thy petitions.
ז  עַתָּה יָדַעְתִּי–    כִּי הוֹשִׁיעַ יְהוָה, מְשִׁיחוֹ:
יַעֲנֵהוּ, מִשְּׁמֵי קָדְשׁוֹ–    בִּגְבֻרוֹת, יֵשַׁע יְמִינוֹ.
7 Now know I that the LORD saveth His anointed; {N}
He will answer him from His holy heaven with the mighty acts of His saving right hand.
ח  אֵלֶּה בָרֶכֶב,    וְאֵלֶּה בַסּוּסִים;
וַאֲנַחְנוּ,    בְּשֵׁם-יְהוָה אֱלֹהֵינוּ נַזְכִּיר.
8 Some trust in chariots, and some in horses; {N}
but we will make mention of the name of the LORD our God.
ט  הֵמָּה, כָּרְעוּ וְנָפָלוּ;    וַאֲנַחְנוּ קַּמְנוּ, וַנִּתְעוֹדָד. 9 They are bowed down and fallen; but we are risen, and stand upright.
י  יְהוָה הוֹשִׁיעָה:    הַמֶּלֶךְ, יַעֲנֵנוּ בְיוֹם-קָרְאֵנוּ.

Psalms Chapter 121 תְּהִלִּים

א  שִׁיר, לַמַּעֲלוֹת:
אֶשָּׂא עֵינַי, אֶל-הֶהָרִים–    מֵאַיִן, יָבֹא עֶזְרִי.
1 A Song of Ascents. {N}
I will lift up mine eyes unto the mountains: from whence shall my help come?
ב  עֶזְרִי, מֵעִם יְהוָה–    עֹשֵׂה, שָׁמַיִם וָאָרֶץ. 2 My help cometh from the LORD, who made heaven and earth.
ג  אַל-יִתֵּן לַמּוֹט רַגְלֶךָ;    אַל-יָנוּם, שֹׁמְרֶךָ. 3 He will not suffer thy foot to be moved; He that keepeth thee will not slumber.
ד  הִנֵּה לֹא-יָנוּם, וְלֹא יִישָׁן–    שׁוֹמֵר, יִשְׂרָאֵל. 4 Behold, He that keepeth Israel doth neither slumber nor sleep.
ה  יְהוָה שֹׁמְרֶךָ;    יְהוָה צִלְּךָ, עַל-יַד יְמִינֶךָ. 5 The LORD is thy keeper; the LORD is thy shade upon thy right hand.
ו  יוֹמָם, הַשֶּׁמֶשׁ לֹא-יַכֶּכָּה;    וְיָרֵחַ בַּלָּיְלָה. 6 The sun shall not smite thee by day, nor the moon by night.
ז  יְהוָה, יִשְׁמָרְךָ מִכָּל-רָע:    יִשְׁמֹר, אֶת-נַפְשֶׁךָ. 7 The LORD shall keep thee from all evil; He shall keep thy soul.
ח  יְהוָה, יִשְׁמָר-צֵאתְךָ וּבוֹאֶךָ–    מֵעַתָּה, וְעַד-עוֹלָם. 8 The LORD shall guard thy going out and thy coming in, from this time forth and for ever. {P}

Psalms Chapter 130 תְּהִלִּים

א  שִׁיר הַמַּעֲלוֹת:
מִמַּעֲמַקִּים קְרָאתִיךָ    יְהוָה.
1 A Song of Ascents. {N}
Out of the depths have I called Thee, O LORD.
ב  אֲדֹנָי,    שִׁמְעָה בְקוֹלִי:
תִּהְיֶינָה אָזְנֶיךָ, קַשֻּׁבוֹת–    לְקוֹל, תַּחֲנוּנָי.
2 Lord, hearken unto my voice; {N}
let Thine ears be attentive to the voice of my supplications.
ג  אִם-עֲו‍ֹנוֹת תִּשְׁמָר-יָהּ–    אֲדֹנָי, מִי יַעֲמֹד. 3 If Thou, LORD, shouldest mark iniquities, O Lord, who could stand?
ד  כִּי-עִמְּךָ הַסְּלִיחָה–    לְמַעַן, תִּוָּרֵא. 4 For with Thee there is forgiveness, that Thou mayest be feared.
ה  קִוִּיתִי יְהוָה, קִוְּתָה נַפְשִׁי;    וְלִדְבָרוֹ הוֹחָלְתִּי. 5 I wait for the LORD, my soul doth wait, and in His word do I hope.
ו  נַפְשִׁי לַאדֹנָי–    מִשֹּׁמְרִים לַבֹּקֶר, שֹׁמְרִים לַבֹּקֶר. 6 My soul waiteth for the Lord, more than watchmen for the morning; yea, more than watchmen for the morning.
ז  יַחֵל יִשְׂרָאֵל, אֶל-יְהוָה:    כִּי-עִם-יְהוָה הַחֶסֶד; וְהַרְבֵּה עִמּוֹ פְדוּת. 7 O Israel, hope in the LORD; for with the LORD there is mercy, and with Him is plenteous redemption.
ח  וְהוּא, יִפְדֶּה אֶת-יִשְׂרָאֵל–    מִכֹּל, עֲו‍ֹנֹתָיו. 8 And He will redeem Israel from all his iniquities. {P

Celebrating

The first day of liberation, where does one go? (Being that we are not living near the Kotel),

The ocean!

Benny was too scared to go into the water, but he sure did enjoy playing in the sand and pouring the water over his head with a bucket. Watching him run and tumble in the sand and not have to worry about him getting his lines dirty or wet, was a first in 16 months. I remember when I used to first take him out in his stroller for a walk and pass by other mom’s on the street pushing their strollers, wondering do they share the same fear I have about my baby. Today, was a turning point. I did not see Benny as the toddler I have to watch with batted breath every time he took a dive in the sand. Today, Benny was just like every other kid. Baruch Rofeh Cholim! Baruch Rofeh Cholim! Baruch Rofeh Cholim!

Tonight, after his bubble bath filled to the top (yay!), he looked down at his chest and said (more like sang) “no more lines…no more lines yay!” He’s only 2 1/2 KI”H, and yet he really seems to know he’s better and feel happy about it, B”H.

Tonight, as we put him to bed, he asked when Shabbos is coming. When I told him tomorrow, his face lit up and once again said “yay!”


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Pictures photographed by Yehudis Schoen Photography

No more Lines & I am not referring to the ones at Disneyland

B”H Benny is sleeping, hopefully through the night. It’s been a long day beginning with a  5:30 wake up call and shortly after a drive over to CHLA. Benny slept thru most of the admitting process, almost to the point of when they took him into surgery B”H. The last words we said as he went under sedation was the Tefilla of Shema Yisroel. That Tefilla has an entirely new meaning to me and will never be said the same way as before.

The procedure to have his line removed and bone marrow test was about an hour. The recovery took about another hour. When Benny woke from anesthesia,  he began to feel his chest and then looked down. His face looked puzzled and then he looked up and said “boo boo all better!” The second thing Benny said was, “where is my kipa?”

This was the most amazing Rosh Chodesh Elul of my life. Hashem answered our prayers and granted Benny his Refuah Shlema .  We felt the Shechina of Hashem there will us on the surgical floor and hope to keep that feeling for 120 years.

Benny left the hospital singing some tune he composed himself.  The remainder of the day, was challenging as he was cranky, too be expected. IY”H tomorrow will be better.

There is more detail about today’s events that I hope to have time to share tomorrow, but now, I have to sleep when Benny sleeps.

Good Night. Sleep well! Shema Yisroel Hashem Elokeinu Hashem Echod.

 

 

Fighter of the Year

It’s a few hours before we have to go in to the hospital, and I am having trouble falling asleep. Check in is 5:45 am.  Tomorrow, IY”H Benny’s tassel will be turned. He is finally BE”H getting his central line, called a Hickman, removed from his chest area. Although, this line was frustrating at times, trying to keep it dry in the bath, pool or just running thru the sprinklers, it did save Benny from a lot of needle poking B”H.  It also saved me from fainting spells that would have happened if Benny got pricked and poked.  After all this time, I still have a needle phobia. I have gotten better with blood though!

In honor of Benny’s freedom on Wednesday, IY”H, his brother Joey, will be giving out free cotton candy in the afternoon. I also wanted to buy 488 balloons representing the amount of days we were in this journey and have Benny release them. This will act as his farewell to this disease forever IY”H.  There is  a shortage of helium in California, so I am not sure if I can pull it off!

Today, Benny spent his afternoon with some firefighters. I am not sure who was teaching who. He was fascinated learning how to put out fires (more so, riding the fire truck and spraying the fire hose) and they were intrigued how Benny extinguished his cancer B”H.  Over the course of our lives, we all have “fires” we are faced with in some form or another. The key is, are we prepared with the right tools to extinguish them or at least contain them.

This Chodesh Elul is a powerful time to find those tools, clean and sharpen them, so that we can and will be prepared for the months that follow.

firefighter

 

Emunah – Belief! Truth!

This picture represents Emunah!  As you can see, B”H, Benny’s hair is growing and growing, he’s putting on weight and even is getting some freckles!  The relationship we all have developed with Hashem, thru Benny’s illness, has brought about his complete Refuah.

 

emunah

This year and a half has been spent on an obstacle course.  B”H we are at the finish line and tomorrow Benny’s central line (port) will be removed IY”H.  At first, I requested to have his line removed last Friday, the day after we got the test results.  When the surgeon told us he would only be available on Wed., I was at first disappointed; but then I opened the Hebrew calendar and saw, Wednesday, was Rosh Chodesh.  Quickly, I was relieved and said it is a good Simun (sign). Elul stands for many things, one being ” Ani Ledodi Vedodi Li – I am to my Beloved as my Beloved is to me”.  This has been a year of extreme closeness to Hakodesh Baruchu and IY”H we should all become even closer this coming year thru Simcha (happiness) only.

We look forward to beginning this new chapter of our lives with the hope and belief that Hashem has restored Binyomin Chaim ben Faigie Sarah’s life with only good health for 120 years.

Please keep in mind Binyomin Chaim ben Faigie Sarah tomorrow, as he will need to undergo surgery to have his line removed. He will also have one more test, a bone marrow aspiration (puncture) to test his bones to be clear of the disease IY”H.

Wishing you all a meaningful and happy Rosh Chodesh Elul. Ani Ledodi Vedodi Li.

 

 

 

Good Shabbos to All!

Thursday, August 1, 2013

HODU L’HASHEM KI TOV; GRATITUDE

It’s been 16 + months of treatment for Benny (Binyamin Chaim Ben Faigie Sarah), months filled with tears,  takanos,  and tefilos.

Hashem has answered.  

YES.


The gift of a yes.

Gratitude.  

Yet, in the same way pain and worry could not be expressed in words properly, so too, gratitude.  Only tefilos and actions seem to open up the world between speech and spiritual connection to one another and to Hashem.

In the first pasuk of this week’s parsha, Re’eh, “See, I present before you today a blessing and a curse”(11-26)

Sforno states that Moshe Rabbeinu is pointing out that we are not like any other nations.  The blessings that Hashem promises us are so extraordinary that they appear miraculous, so too, the ordeals, if we ignore our spiritual calling, will appear on the opposite end of the spectrum.

There is no mediocrity in this picture.  Striving to achieve; yields miraculous blessing.  

We are approaching Elul.

Last year, at this time, we had inspiring plans floating through our mind, ideas of who we wanted to be when Rosh Hashana arrived.

Let’s reflect and remember that vision.

Now, let’s take the gratitude we feel, and live that vision (even just a small part of it).

This is the power of gratitude; choice to make that intense and lasting change to be who we really are, so that more miraculous blessing can rain down on Binyamin Chaim and his family, and on all of Klal Yisrael. 

Good Shabbos,

THANK YOU HASHEM

aviva rus 


481 Days

481 days ago we were told news that would change our lives forever. 481 days later, we are told news that once again will change our lives forever until 120 IY”H.

The feelings of sheer despair 481 days ago have now turned B”H to sheer relief, excitement, disbelief and happiness.  We are overcome with emotion and have deep gratitude to Hashem Yisboroch (G-D) and all those individuals and groups of individuals, who joined Team Benny to help us arrive at this momentous day Chasdei Hashem.

This is a day of reflection, but more so, a day of hope. Hope for all those battling this disease. As we left the doctor today, I said, Thank You and told him that he should be able to share the same news with all of his patients.

The past few days have been exhausting physically as well as emotionally. Last night we were able to share in a wedding of a close family friend. During the time of the Bedekin (when the groom places the veil on his bride), there was Elimelech ben Basya (the nephew of the bride) dancing and smiling away. It brought tears to my eyes, to the see the joy radiating from his face. If anyone could be as happy as the Choson and Kallah last night, it was Elimelech.  As the Choson and and Kallah walked down the aisle to their Chuppah, I envisioned BInyomin Chaim ben Faigie Sarah, Elimelech ben Basya, Daniel Reuven ben Rikva Kayla , Rafael Yoel Ozer ben Chaya Malka, and Chaya Mushka bas Hadassah Shaina walking down to their Chupah one day IY”H. I envisioned Ruchama Avigayil Mayma Rochel bas Rifka Penina, and Chaya Zissel Elka bas Hadassah Shaina  (and other special mother’s and father’s) walking their children to their Chupah IY”H.  At the same time, I looked around and was surrounded by many single, beautiful young women and had them in mind that they too should find their Bashert (match) very soon IY”H.

Although, Benny has had several fast days, not being able to eat before anesthesia, yesterday, was the longest by far. His first bite to eat was after 3 pm. I didn’t know whether  to consider it a T’sha B’av fast or Yom Kippur fast.   Today, I decided to consider it a Yom Kippur fast. Being that we were on the eve of judgement and today would be the revelation of scans, I decided to dress Benny in white.  White, to symbolize purity, a clean bill of health and a new beginning.   Benny’s white pants didn’t exactly make it to the doctor, he had other ideas and needed to be changed, but he did go in a white shirt.

On the way to the hospital today, we sang with Benny, “Hashem is here, Hashem is there, Hashem is truly everywhere, up up, down down…” We had a good feeling . (On the way to the hospital yesterday, we told Benny how much we love him. He then replied, “Do you love Zaida Ben? Do you love Hashem? Does Zaida Ben love Hashem? Our answer was “yes” to all three. Then he began to sing).

After arriving at the hospital a few minutes after 1pm with Benny and Joey, we quickly went to check in at the receptionist desk, as Ari parked the car. While waiting to be called by the nurses to go thru triage (vitals, weight etc), I went to the other side of the clinic floor to ask the nurses if Benny could skip triage, considering we were only there for a consultation and not a doctor appointment.  The nurse then told me that the doctor just ordered a set of labs (which meant blood work) and needed vitals.  That piece of information didn’t sound good to me and the “good feeling” suddenly vanished and was replaced with fear. As I returned to the waiting area, I bumped into our social worker and told her why we were here and conveyed my concerns. She immediately told me she will try and find out the results from this weeks scans, so I didn’t have to wait with fear.  As I waited, Ari arrived in the waiting area.  I kept quiet and didn’t say a word about what just transpired and smiled. Ari then took Benny to the triage area while I sat and waited. Shortly after, the social worker Roz, came back and told me, “good news.. the scans are clean.”  I couldn’t control myself and burst out in tears. Soon after, Ari came back with Benny and once again “good news” spread and more tears were shed. One of many things I learned from my Zaida Ben O”H, is if there is a way to spare unnecessary pain thru worry, then by all means do so!

Once we met with the doctor and the results were officially confirmed we cried again. At that moment we thought of all the Cholim who are battling this disease in some form and prayed for their complete Refuah Shlema Min Hashamayim.   Just as a Choson and Kallah, during the happiest period of their lives, under their Chupah, remember Yerushalayim, so too we, did the same.

On the way to the car, we stopped off at the hospital gift shop and bought two balloons. One to keep and one to let go. As Benny released the balloon in front of the hospital, we said, “goodbye cancer, goodbye  goodbye!”

Over the course of the afternoon and evening we have received magnificent wishes and Brochos. One, was from my aunt’s housekeeper in NY, who prays every evening at her church. After hearing the good news, she immediately, knelt down and said “Hashem listens.”  If a two year old can perform a Kiddush Hashem, imagine our Koach. We feel so fortunate to have seen the beautiful gift of Mankind over these past 16 1/2 months.

While we are hopeful that this is behind us, we must continue to Daven that Binyomin Chaim ben Faigie Sarah remain healthy, without any side effects or Chas Veshalom any reoccurrence. Please Daven that we maintain this good news and that it will only spread to all Cholim in Klal Yisroel.

As I tucked Benny in tonight (in my bed of course), tears of joy streamed down.  Benny looked worried and said, “Hashem, please make Mommy’s boo boo feel better.” I replied, “Hashem did!”

Me K’Amche Yisroel

Good Night, Sleep tight!

Picture of Benny receiving good news!

good news

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Video of : balloontake1

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When we got home, Benny had a big surprise… more balloons. Lots and lots of balloons. Thank you Lyons,  Buchman and Gardner Families. We love you all!

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Chasdei Hashem Ki Lo Samnu!!!! BENNY IS CANCER FREE!

Dear Family and Friends –

We sit here with tears of joy streaming down our faces. After 16 months of treatments and three nail biting days of scans – the results are in!!!! BENNY IS CANCER FREE!!!

We know full well that his recovery is due, in no small part, to each and every one of you!!! We’ll share more later but wanted to share the news with the entire Team Benny as soon as the doctor’s shared it with us.

With love and thanks,

Ari, Faigie, Yocheved, RB, Joey, Shua, Shmuel and of course BENNY!!!!

2 Down, 1 to Go IY”H

Friday can’t come soon enough. It’s only Tuesday, but sure feels like Friday, or maybe just getting off a red eye. There are no clocks visible in hospitals, maybe because the days and nights don’t match up with what the clock says.

Check in time today was 8 am for the CT scan. The actual scan took place around 10:45. Prior to the test, Benny had to drink 20 oz of contrast mixed with apple juice. Benny was not happy being strapped down to the table, B”H it was no more than 10 minutes. Before we left the technician said, “we will see you at the end of the year!” I really hope she was speaking as a Shliach (messenger) from G-D, giving us over good news before we hear it from the doctor on Thursday. After this week’s scans, if all goes well BE”H, we won’t have to go for scans for the next 3-4 months.

After the CT, we went to nuclear medicine to get another injection (via Benny’s central line) for tomorrow’s MIBG scan. The medication had not yet arrived (via UPS from Florida), so we went home and waited for the call when it arrived. At 1 pm Joey and I headed back to the hospital for the injection. We were out of there by 2.

To help Benny forget about his stressful day, we took him to play arcade games and win some prizes. It wasn’t before long that the paparazzi found Benny and snapped away. Pictures courteous of Yehudis Schoen Photography.

Tomorrow, IY”H is Benny’s final test. We are scheduled for the MIBG test at 1pm with a check in at 12. Unfortunately, this test requires anesthesia and that means Benny cannot eat after tonight until after the exam. Please Daven that he will be safe and that the results from all these tests are A+.

While we pray for this journey to come to an end, we cannot forget for a moment those children, mothers and fathers that are still battling this disease.

As we all continue to Daven, say Tehillim, and give Tzedeka we must keep these individuals in mind throughout our day. When I send my children off to camp, I ask Hashem that my friend Ruchama Avigail Mayma Rochel bas Rivka Penina be blessed with a complete Refuah Shlema, so that she too can kiss her children before they go off to camp. I pray that she will be able to light her Shabbos candles this Erev Shabbos and be with her family for Shabbos in her home. When I go shopping at the grocery, I pray that I will see her again soon, in the aisles, filing up her cart with food to cook for her family. Ruchama Avigail Mayma Rochel bas Rivka Penina is a friend to our entire community. She is the one who knows of the lonely elderly, who need a meal or just a visit, or a ride to the doctor. Please Hashem, send Avigail the complete Refuah Shlema she needs, so that she can go back to doing what she loves to do; help the Cholim and less fortunate ones in our community. Avigail was the first one on board to help out when we started the Super Storm Benny drive to help with the Hurricane Sandy victims. We must now storm the Heavens with the same force and not let up until, Ruchama Avigail Mayma Rochel bas Rivka Penina is completely healed.

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B”H Benny has completed his first test, the MRI, is out of anesthesia and we are heading home.
Tomorrow he is scheduled for a CT Scan at 8 am.
IY”H we should have clean results and B’soros Tovos this Thursday.
Thank you for your continuous Tefillos.

Week of Finals

We have been preparing for the past 16 months for this coming week of tests. These are the tests that will IY”H give us the green light to move forward with a life, full of good health and longevity IY”H. The preparations have been long, very long; painful, very painful; tiring, all nighters; lonely, in a crowded room,  but as difficult as it has been we are B”H finally ready.

We feel ready, only because of your incredible support. It was and is a support that is not pulled, rather carried. It was a load (extra wide and extra heavy) that was suspended in mid air thru your Tefillos, your Ma’asim Tovim. Every utterance said on Binyomin Chaim’s behalf combated his disease, one cell at a time.  The Tefillos (prayers) and Ma’asim Tovim (good deeds) destroy the unhealthy cells and replaces them with healthy, strong and ever lasting cells for generations to come IY”H.

Thank you for carrying us throughout this journey. We look forward to holding hands  at Simchos from this day forward.

Tomorrow’s test is a MRI at 12pm. Benny will be put under anesthesia for this test. Please have him in mind and Daven for his safety and clean scans IY”H.

As Benny is undergoing this procedure we will continue to Daven for Ruchama Avigayil Maima Rochel bas Rivka Penina for her complete Refuah Shlema min Hashamayim. We have tremendous Hakaros Hatov to Avigayil for all that she has helped us with this past year. In her Zechus alone for all the 1000′s of people that have benefitted from her hands, she should have a full recovery.

 

Match Maker

B”H Benny is doing well this week, even though at times he was a bit cookoo from the Accutane medication. We are grateful that we have reached the last day tomorrow IY”H for  this medication. We hope and pray that BE”H this will be the last time Benny will ever have to take another pill.

Unfortunately, I couldn’t post earlier because I had been battling a headache for three consecutive days. I was ready to go in for a blood test, but then I hypothosized that the headaches and tiredness may be caused by the no carb no sugar regimen I put myself on.  Because I felt the need to update the web, I decided to go back on carbs and sugar :) .

The week started off pretty sad for Benny as you can see below. His good friends Yaakov and Shmuli went back home to Israel. Benny learned quiet a bit from these friends, including how to dive off a couch and eat salmon for lunch, compliments of Fish Grill. We hope you boys come back soon.

 

freindsleft The week filled up pretty quickly with trips to the ice cream store, shoe store, visiting a neighbor with a 3 week old bunny, planting, baking and performing a puppet show for his cousins, Sholom and Ahuva.

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Last Shabbos, I read over a very powerful message written by Rebetzin Yemima Mizrachi on Tu B’Av. I was deeply inspired and decided I must do something to help the singles of our community. I was told over by someone that in order for an inspiration to last you need to put in on an object. I needed to act quickly and so Motzei Shabbos an email was sent out.  It was a message inviting the single ladies of our community to Tehillim and a Brochos party in our home. I would have loved to arrange a dance (like in our ancestor days), but I wanted people to show up!

Of course Benny attended the party and even covered one of the single young ladies with a  bridal veil.  He also showed off his new sneakers and showed the ladies how the Chosen (groom) stomps his foot (to break the glass of course).  Unfortunately, he may have broken a few hearts that night. but did give the ladies a lesson on how to win over a little boys heart. tubav Benny the matchmaker.  Even though, his taste is eccentric, he sure looks confident wearing two different colored shoes. Two shoes, walking side by side with one body leading the way. Isn’t that what a relationship is all about. How two people, as different as yellow and red, can get along if they both have the vision and drive to walk together down the same road lead by the one and only Master above. decisions

 

Erev Shabbos Kodesh:

Please Daven for Ruchama Avigayil Maima Rochel bas Rifka Penina. A close friend, a prominent member of our community, a wonderful mother, wife, daughter, sister and friend. Please Hashem, I beg of YOU to stop, stop testing us and pushing us to the end of our limits. Please allow us to live, to love, to laugh and to give.  As a mother who cries to you every night and asks of YOU to give my son a long and healthy life, I am now asking of you to give a family to live with their mother for 120 healthy and happy years.

Please Daven for Elimelech ben Basya this Shabbos. He is back in the hospital and need a complete Refuah Shlema .

Good Shabbos!

T’Sha B’Av

Today, is a day about mourning the past and praying for our future. We all have loved one’s that are no longer present, that we yearn for their return.

We all know someone battling for their future. Not just anyone. Young mother’s, father’s, and young children. There are several hours remaining to our fast and all I can think of is when?  When will our Golus end?  When will our pain and suffering end?   Will our scans in a few weeks come clean?

Benny just woke from his nap. He is crying ” I want Mommy!”  Is he crying for me? or perhaps for our Father, Hashem, like we have all been crying for all night and day.  Helping Benny change his mood is as easy as feeding him or holding him.  Hashem, please change our mood and bring us the Geula,the Redemption we have all been patiently and unpatiently waiting for.

We say in Rosh Chodesh Bentching to gather us from the four corners of the earth for the Redemption. It can literally mean, North, South, East and West, but it could also stand for the four Exiles.  Four can stand for the four sons that are mentioned in the Hagadda, the wise son, the simple son, the son that doesn’t not know how to ask and the wicked son. Today, we live in a society that has all these types of sons, and we live in a generation that represent all the four exiles.

Unfortunately, all four of my grandparent’s are no longer living. That generation in our family has now closed, a generation that was closer to the Bais Hamikdosh.  Let us hope that I am wrong and that this generation of today is closer to the Bais Hamikdosh, the third and final ONE IY”H.

Below is a video that my Uncle Simcha Lyons sent me who is in Israel this week, as his wife and my mother sit Shiva together for my grandmother O”H.  May they have comfort among all the mourners of Yerushalayim.

 

 

 

 

 

mourners

May the Almighty comfort you among the mourners of Zion and Jerusalem.

The Meaning of the Declaration

The traditional wording of the above condolence declaration expresses two themes:

1) The pain of the individual is connected to the pain of the community. Just as the destruction of Zion and Jerusalem is mourned by the entire nation of Israel, so, too, does the entire community share in the mourning of the individual’s loss, since all Israel constitutes a single body. This helps to make the pain and sorrow bearable.

2) Just as the consolation over the destruction of Zion and Jerusalem is certain to come — this being a fundamental principle of our faith — so, too, will the consolation for the individual’s loss. For, as Maimonides writes, the purpose of all mourning is to awaken us to Teshuva (repentance), which will surely bring the ultimate consolation from “The Consoler of Zion and the Builder of Jerusalem.”

video of  the Kotel: tishab’av

 

 

 

Beads of Courage

The past several days have been quite sad with the passing of my grandmother. Although, we have been prepared, one can never be ready.  My grandmother Chaya Bas Avrohom was buried today in Eretz Yisroel. May her Neshama have an Aliya.  The timing of her passing is definitely connected to these 9 days of mourning.

My grandfather, Harav Shmuel Tuvia Stern passed away 9 years ago. It was at that time that my grandmother did too, although her body remained alive. She was not the same woman after her husband, my Zaida was Niftar. She was a true Aishes Chayil and devoted her life to being an Eizer K’negdo. Her day evolved around my Zaida O”H schedule. Even when my Zaida traveled out of town, which he did often, my grandmother did not leave the house because she did not want to miss my grandfather’s phone calls (there were no cell phones in the “olden days”).  Of course she wanted to hear my Zaida’s voice, but more importantly my Zaida wanted to hear my grandmother’s, and she did’t want him to worry, if she wasn’t home.  Now she is at peace as she is reunited with her husband.

We are on the heels of Erev T’Sha B’Av. A time to reflect, remember and to mourn with Yerushalayim for “her spouse” our Holy Temple. We are not the same Nation without our Bais Hamikdash; we are lonely, we are lost, and we feel a void.

Just as my Bubbie is now reunited with my Zaida, tet this T’Sha B’Av be our reunion with our Holy Bais Hamikdosh.

Over the past several weeks, we have been trying to rebuild our lives and live as “normal” as possible. Aside from having to give Benny some oral meds and flush his central line, and a clinic visit here and there, he is just like any other 2 year old B”H. Of course he is “smarter and cuter ” than the average 2 year old, but that is just a prejudice mother speaking.   I have been battling with the idea of what “normal” is.   Being that this past year was anything but normal, somehow we felt like we got the message of what life is really about.

Now that we are moving to the other side B”H, and “normal” is seeping in, the distractions do too. We don’t Chas Veshalom want to ever be back this Matzav, but we also don’t want to lose what we have gained from this experience.

There have been many lectures over the last several weeks on “how to mourn,” “how to cry,” “how to feel” in our present time. It has been so many, too many 1000′s of years without our Bais Hamikdosh that we don’t know what or how to feel. Unfortunately, we all experience pain in one way or another. When will we finally meet our soul mate? When will our home be blessed with a healthy baby? When will we be able to pay our bills? and the list goes on. Suppose we were to channel that pain towards Yerushalayim and feel her pain as if it were our own. Maybe just maybe that’s all we need to do, to finally put an end to all the pain in our lives.

Fortunately and unfortunately, Benny’s central line is still in his little body. We are reminded daily of his fight. Once the line will be removed IY”H, the scars will remain as a reminder. Perhaps this T’Sha B’Av we can hang a white piece of paper by the entrance of our home to act as a reminder of the scars of Yerushalayim. (I know there are many who have this reminder in their homes already, but hanging a clean piece of white paper can act as a wake up call and even cause someone to ask what it is for).

Today, we were reminded of our battle. We were invited back to the  hospital today for an event, the launch of a program called “Beads of Courage.” We first saw this program in CHOP and were so excited about it. We recommended it to CHLA and helped in matching up Chai Life Line with CHLA in getting this program off the ground. We are so grateful that Chai Life Line participated as a major donor to this program, as it allows these precious little children battling this disease the ability to show their badge of honor with these symbolic beads.  Basically, there is a bead for each procedure that the child is awarded after he/she completes that treatment. There is a bead symbolic for blood transfusions, radiation, surgery, chemotherapy, physical therapy, bone marrow transplant, even hair loss and the list continues.  The final bead is a purple heart, symbolic of the completion of all treatments. We hope to string that bead into Benny’s necklace in the next few weeks IY”H.

Let us all be Zoche to string our bead, and use the white piece of paper symbolic of the Bais Hamikdosh bricks to rebuild our Holy Temple this T’Sha B’Av.

Start packing that suitcase….

Benny was presented with a custom made necklace with his name, Elmo bead, and fire engine bead from Randi with Chai Life Line.  (where did you find Elmo?) Thank you so much, Benny loves it!

 

 

 

 

beadsofcourage

 

reachforthestars

The true meaning of “reach for the stars.”  Look closely at his tippy toes. On the way out of CHLA today.

 

Benny’s week

This week Benny started what we hope is the last treatment of Accutane and IYh the last treamtment related to this disease.
We are very hopeful and anxious IYH for this the be the last treatment once in for all. As you all know this has been a very long 15 months; one that you have been part of since the very beginning.
What we hope more than anything is that we nor any other person in Klal Yisroel or righteous person suffer from this disease or others.
We pray that these final days of mourning are our last and that this coming T’sha B’Av is the Geula that we have been yearning for so long.
BH Benny is enjoying these summer days in camp Mommy and camp Alti.
If you have been to Fish Grill lately you may see a new fixture … Benny has been lunching there practically daily. His favorite food on the menu is Fish n Chips.
Other activities this week included , Scooter Jungle, Kidspace Museum, and The Aquarium and clinic (no fun).

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Fish Grill poster boy!

Shed a Tear

Over the last several days I have heard a number of lectures on how we are supposed to feel during the period of these nine days. The common theme throughout is no surprise, sadness, pain and tears.  Why?  Because before something great we need to go thru pain, such as child birth. So too, are the pains before Moshiach.

Last year this time, I did not have the privilege of going out to shiurim (lectures).  I have to say, I did not need any coaching on how to cry or how to feel pain. Stepping foot in the hospital or perhaps not leaving, set the tone for my nine days.

Although, B”H this time we have been hospital free, we are reminded daily of Benny’s battle that we must win. The covering of his lines in the bath, or flushing his lines at night, or the oral medications that he still needs, all act as a reminder.

B”H we are hopeful that these nine days will bring an end to our feelings of somber, sadness and pain. We must use this time to remember Yerushalayim, Jerusalem who feels sadness and pain without its’ Bais Hamikdosh.  For those of us who don’t have a white square symbolic of Zecher L’Churban in their front entrance, perhaps during the 9 days at least, we can hang an 8  x11 piece of white paper by our entrance to remind us of what to be sad for, and what to Daven for.

Just as Chas Veshalom, I don’t ever want to get used to seeing foreign lines coming out of Benny’s chest, I don’t want to get comfortable with the Golus we are in either. Let us feel the pain for just a little bit longer, so that IY”H very soon we will be Zoche to experience the  ultimate simcha (happiness), the Geula Shlema B’Korov.

 

 

A Day of Independence

Benny had a full week of “Benny” camp activities. Here is a recap of the week.

Sunday began with a relaxing morning just for mom’s sponsored by Chai Life Line. Following that, Make a Wish Foundation came to our home to find out what Benny’s wish is.

We discussed many different ideas, one he talks about all the time is to go to an island and go swimming with the Dolphins.  One idea that is quite grand and I don’t think done before was a trip around the world, but with a  twist.  The idea behind the “world tour,” is to meet and greet and thank all those people, young and old around the world for praying and undertaking great tasks in their life for Benny’s Refuah. It would be a trip of Hakaros Hatov and also a trip of showing people the power of their prayers.  We suggested all this can be done as a documentary of “Team Benny.”  It would be an incredible Kiddush Hashem as well.

The following day, I took Benny and Yosef Tzvi to Underwood farm. There he enjoyed combing the hair of the goats, feeding the chickens, going on a train ride around the farm and doing a fabulous job at picking strawberries and squash. ( Believe it or not, Benny is loving the soup we made out of the squash). As we were leaving the fields, a camera crew showed up (about 19 people) with cameras. Our first reaction was, “Wow! Make a Wish works fast”. Then we inquired who they were with and it was Torri Spelling filming some segment for a food network show.  When they saw Benny wearing a Team Benny hat, they asked who’s Benny.  It didn’t take long before they too were wearing  Team Benny hat and joined the team.

 

Tuesday, Benny spent most of the day with his new friends, Shmuli and Yaakov. They went to an indoor playhouse, jumped in the balls and went down slides.

Wednesday, Benny  tested his skills in video games, ski ball, basket ball at an arcade. Boy was he upset when we left.

Today, Benny really enjoyed his Day of Independence at home with his family and friends.  It was this time last year, that we were in the hospital on this legal holiday. Benny really celebrated, first with a  nice lunch at Fish Grill with Alti and her nephews, and then we decided to take a trip to the hospital just for a visit. We wanted to say hi to the nurses on 4 West (that is the unit where we spent the most time) and let them know we were thinking of them today.  We also made sure to bring them hot dogs, hot off the grill with all the trimmings.  Walking thru the hospital was eerie. It was very quiet, hardly anyone walking the halls. It was also our first time back since we left close to a month ago. This time when we got our passes to go upstairs, it was a “visitor” pass verses a parent/patient pass B”H. Unfortunately, Benny slept thru the entire visit. However, the nurses were still thrilled to see him and how big he has grown and how long his hair is getting B”H.   These nurses put their heart and soul into their job, and it is nice be able to see successful outcomes IY”H from all their hard work.

Tonight, Benny enjoyed a barbecue with his family and friends and watching fireworks from his Bubby and Zaida’s porch.

This truly was a day of Independence. A day for Benny to run around, not be hooked up to any medications, a day to enjoy his freedom.  May we all be Zoche to experience the “true” day of Independence very soon with the coming of Moshiach.

 

 

On the front lines

Since the last post that Ari wrote Motzei Shabbos (Saturday night), notifying our family and friends of the passing of Bracha, we have been doing our best to be strong and positive for ourselves and for our family.  It is not easy. When one is on the front lines fighting a war and his/her comrade loses their battle, it is extremely difficult. While one needs to mourn, at the same time they need to continue in battle.

This period of the three weeks, signifies the battle of our Holy Bais Hamikdosh (Holy Temple in Jerusalem).  It is not an individual battle, but one we share as a nation. Although, Bracha Sara Chaya was on the front lines with girded loins, Simchas Hachaim and a glow that could blind any enemy, she was never alone. She had an army behind her. Even though, she was wounded on many occasions, she kept on picking herself up, with a smile no less. She gave strength to all those supporting her. Her courage in the face of a constant battle with an overwhelming enemy, shows that she walked into each battle with a Master Warrior at her side. The only weapons she needed were her Tehillim , her mother’s tears, her friends’ love and her belief that she was fulfilling her mission in life.

Bracha O”H may not be here physically anymore, but her legacy remains. We now must use the tools that she provided and learn from her ways, so that we can continue this battle of Galus (Exile) and win, once in for all. May we all be Zoche to dance in the courtyards of the Bais Hamikdosh this year IY”H.

 

Darkness…

Dear Family and Friends -

Bracha Sara Chaya bas Ronit Naava Tehilla (as many of you have come to know her through this website) was nifteres in Eretz Yisroel this shabbos. Baruch Dayan Emes. Tonight we received the most unwelcome news imaginable. A beautiful, special, sensitive, caring, terrifyingly young Neshama was ripped from this world.

We immediately recalled a beautiful Shabbos Faigie, Benny and Auntie Shira spent with her almost exactly one Hebrew year ago. (Here’s a link to that post: http://www.teambenny.net/2012/07/29/1/)  We recalled seeing her shortly before she moved to Eretz Yisroel at a Chai Lifeline event. What a smile. What an inner beauty.

How her mother and sister sat by her side and said Tehillim for hour after hour, day after day. How her classmates and friends (including our daughter Yocheved) visited night after night.

She fought so hard for so long… all for naught.

In case anyone needed a reminder that this is truly a battle of life and death… here it is. Please daven for her Neshama to take its rightful place near the Kisseh Hakavod. May she be a meilitz yosher for her amazing family and all of the children she touched… including Benny.

May no additional families know the pain her family feels right now. We are with them in thought, spirit and tears. We hope they can feel her love min hashamayim – and hope they feel all of ours from across the ocean.

Love,

Ari, Faigie, Benny, Yocheved and the rest of the family.

WE WILL MISS YOU!!!!!

Pictures of the Week

First week of
Camp Benny is complete BH
Benny had a wonderful time with his brother Yosef Tzvi at the aquarium, pizza store, Sky High and especially selling cotton candy and baking Challah.
IYH may all of you be able to share in only happy times together with your families.
Good Shabbos

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The Feeling of Despair

Yesterday, I woke up feeling really lousy.  I thought it was due to lack of sleep.  It was, but, the exhaustion is not from getting two kids off to camp, it is from hearing about yet another diagnosis of cancer this week, in a young 10 year old boy from Passaic, NJ.  The first email that circulated was to Daven for Daniel Reuven ben Rifka Kayla. I did not know any details. Then a day later, another email went out saying that the family is appreciative of all the outpour of help, but needs their privacy at the moment, and until there is a diagnosis, our Tefillos are of utmost importance. Then today, I received an email from a friend asking me to Daven for a close friend of hers, Daniel Reuven ben Rifka Kayla.  That, maybe Hashem will listen to my Tefillos. I wrote back to this friend, that I already sent an email to Daniel Reuven’s parents offering support in whatever way possible. Unfortunately, I know all to well their pain, their grief, their feeling of despair at this moment in time.

As I sat down to Daven today, my son’s Benny and Joey were in the room. I couldn’t begin. I just sat and wept.  Benny at first thought it was funny and then he came over and wiped away my tears. I looked at him and cried some more. I looked at his new beautiful golden hair and felt so grateful that we made it to this point B”H. Although, we have completed the treatments in the hospital, we have one more round of oral treatments at home in about another week. Then we have scans. We have begun to live our lives as normal as possible going on the notion that IY”H the scans next month will indicate that we are done with treatment.  However, it is getting harder to continue flushing his lines every day, covering his lines for his bath with plastic every day. We just want it to be over already.

So now, after hearing about another family that has entered a new life of “no normalcy”  the pain has resurfaced. Unfortunately, we get so many emails asking for our prayers.  What are we to do? We are to take them to heart. We are to feel their pain. We are to beg Hakodosh Baruchu (Hashem) to stop bringing this plague on our children, on our loved ones. We Chas Veshalom (G-D Forbid) don’t want to be the next one sending out an email requesting our Bakoshos (plead) to Daven for our loved one.

Last night, I received another email stating that Bracha Sara Chaya bas Ronit Nava Tehilla is unconscious and there will be a gathering of Tehillim at 8 pm. Bracha is 16 years old battling the same cancer Benny is fighting .  Now is she living in Israel, but last year this time we spent  multiple Shabbosim  in CHLA hospital together. One Shabbos that was very meaningful was when Auntie Shira stayed with Benny and I for Shabbos.  We all (Bracha, her mother and sister) ate Shalosh Seudos together, sang and laughed a lot. Bracha loved having Shira around and felt so good around her.

This morning I took out the mixer to make Challah for Shabbos (even though the freezer is full of Challah). Benny insisted on helping.  I am baking Challah so I can make the special Bracha of Hafrashos Challah that has so much power in all areas of life.  B”H now that we are home and have the opportunity, I don’t want to miss it.  If Challah is not your thing, there are plenty of other Mitzvos to do. The key is DO!!!  We need to help each other. We need to lighten the burden of those going thru the enormous challenges they are faced with.   Every Tefillah, every Mitzvah, any change taken on, helps remove the feelings of despair and brings Refuah IY”H.

Bringing in Shabbos 10 minutes early and using the time to say Tehillim is extremely powerful .

Here is a list of children that need our Tefillos that I personally know battling this Magefa (plague):

Daniel Reuven ben Rifka Kayla (10 years old)

Elimelech ben Basya (8 years old)

Chaya Mushka bas Hadassa Shaina (10 years old)

Bracha Sara Chaya bas Ronit Nava Tehilla (16 years old)

Binyomin Chaim ben Faigie Sarah (2 years old)

and our miracle baby Rafael Yoel Ozer ben Chaya Malka, who needs our Tefillos for a complete healing of his skull and eye.

IY”H this coming Shabbos will be bring Refuah to all those in need and the Geula Bmheira B’Yomeinu. Amein.

 

Summer is here!

This summer is B”H off to quite a different start from last year. Yesterday, was the first day my boys went off to day camp and I was home to make their lunches, drive them and kiss them goodbye (around the corner from camp of course!).  Tonight, I was at the airport bidding farewell and kissing goodbye to my daughter who is off to sleep away camp. I cannot remember the airport run last year, and that is because I was in the hospital with Benny for most of last summer. Tomorrow IY”H,  one more child departs to camp and then the gears change to camp Benny/Mommy.

B”H Benny is no longer in the hospital, but unfortunately cannot be in camp either. I am not sure how safe it is for him to go, being that he still has a central line. On the one hand, I love spending every waking minute with him, and sleeping as well, but I know he enjoys playing with children his own age too. IY”H the time will come soon that he too can go to camp. In the meantime, it’s” Camp Mommy”. I can tell you one thing, I am not going on a camp trip to Disney this summer. The lines are too long and it is too hot!  Plus I already met my “new friend” at Disney!

Benny just completed his second to last round of Accutane. One more to go IY”H in a couple of weeks and then it will be time for scans and IY”H surgery to have his central line removed. Although, I don’t like when the summer flies by, I wouldn’t mind it hurrying up until after we are all done with treatment, then the summer can slow down.

Yesterday, Benny enjoyed a play date with a nine year old girl, Rina, who made him another duct tape tie and played  Shabbos with Menchies. Today, he enjoyed a day at the park with his friend Meir.  He also enjoyed watching his older brothers play baseball.

I will try and update the blog more frequently, as long as the schedule allows it.

Wishing you all a safe and wonderful and happy summer.

 

 

 

 

Outlook

This week, our dearest friend’s, the Feder’s sent out a video of the “Miraculous” recovery of their son Rafael Yoel Ozer ben Chaya Malka (it is on you tube, search for Rafael Yoel Ozer and be sure to have a box of tissues handy). The purpose of the video is to spread the greatness and kindness of Hashem and most of all Hakaros Hatov to Hashem and all those that Davened and continue to do so for their 2 year old son.

A couple days ago, my sister called me up and said how moving the video was. We then went on to discuss the similarities of the two boys experience. I will begin with a little history.

2 1/2 years ago, these two boys were born 7 weeks apart . They lived across the street from each other, which basically was like one house. Each were named after their great grandfather, whom each mother adored so much, and as my husband said at Benny’s Bris, most people have a baby and then plan on the name, I had a name and then had to plan the baby. The same went for Michelle and her baby.

Then, into the second year of these boys lives, they each were faced with a challenge that would have an impact of the rest of their lives. They each were faced with the battle of their lives, a fight to live! Each boy was faced with something so rare and yet both had the same rare sign that something was very wrong. The bump on the left eye.

I was bothered for quite some time, not knowing the reason behind the meaning of the bump and just this week it became clear. “Physically,” each bump stood for something else, but “spiritually” it was the exact same thing. The “bump” on the eye stands for “the outlook” these boys have on life. The “outlook” we should all have on life. The bump was external, however, to have the proper “outlook” we must search within our internal being. If we are able to train ourselves to reach into our deepest chambers and connect with our Neshama (soul), then no matter what challenges come our way, miraculously, those challenges become manageable. So much so, that the challenges become less fearful and in fact, become uplifting as strange as it may sound. These two boys took the bumps (and there were many more along their journey) and smoothed them out with strength, determination, will and most of all with love they feel towards Hashem.

How is it, that these 2 1/2 year olds have clarity on what the proper outlook on life should be, and we as grown ups are at times confused? I believe the answer is distraction. Our minds are cluttered with distraction and sometimes it leaves no room for Emes (truth).

My Zaida Ben O”H, the last year of his life suffered from cataract. He was so distraught when he could no longer see the words of the Gemara clearly, so he decided to have surgery at the age of 95 (several weeks before his 96th birthday). At the time, he would have had the procedure covered if he waited 4 months. He couldn’t wait that long. Why? His answer was “Daf G’mara…18,000 shekel. what’s the question!” and paid for the procedure out of pocket the following week. Unfortunately, the procedure was not successful and my dear, dear Zaida lost the desire to continue living if he could no longer learn inside a G’mara or Chumash. Zaida Ben O”H had clarity, he lived a life with the proper “outlook,” until the day he was Niftar (passed away).

B”H that clarity and proper “outlook” is once again prominent in the lives of these two little boys. Please continue to Daven for our boys and all the Cholim that need a complete Refuah Shlema.

On a fun note, Benny enjoyed the day bike riding at the ocean. His brother Yosef Tzvi did a great job pedaling and pulling the “wagon” that was attached to the bike.

Then this evening Benny and his family attended a local concert starring, Lipa, Benny Friedman and 8th Day. Benny’s loved Lipa’s costumes, especially when he wore a “Team Benny” cap with his red K’pata (coat) and red shoes. It coordinated so well :) . He called Lipa “the funny man.”

Today, I also finally met my “new friend” from California Adventure. The meeting went really well, although no sales :( (just kidding). My friend “J” is very talented and offered to Be-Dazzle (crystalize) a Team Benny cap. I can’t wait to see it. She is also very spiritual and warm and has a wonderful “outlook” on life.

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The Power of Unity

Today I received two incredible videos. Each a testament to the power each and everyone of us have as an individual and as a collective member of Klal Yisroel.
It is about 8 months since we were in the hospital undergoing Benny’s stem cell transplant. It was at that time that Hurricane Sandy hit land and caused a devastating and everlasting change to the easy coast region.
The change was not only physical but emotional and spiritual as well.
I felt their pain. I knew what it was like to pack up a suitcase and leave my home for about a month long. I knew what it was like to be at the mercy of others. I knew what it was like to accept meals, volunteer help, and many other needs. However, at that moment I felt the need to help out in some way and so Super Storm Benny was born.
B”H hundreds of people participated in the Los Angeles area and we collected the most of anywhere outside of the NY area.
Today, I received an email saying that Nivneh is finally closed and a link to a beautiful video of what Nivneh accomplished. May we all be zoche to rebuild the Bais Hamikdosh in our days just as we help rebuild the NY/NJ coast.

The second powerful video I received today speaks volumes. It was from my dear friend Michelle. It shows their own personal “hurricane ” and the miraculous recovery.

The connection between the two videos is simple. It’s each one of you who prayed and gave Tzedaka and saved so many lives as a result of your hard work and endless days and nights.
It’s beyond extraordinary what we
are able to accomplish when push comes to shove in such a short time.
This past year has been an incredible life lesson.
It’s okay to feel sad at times. The emotions are real, however it is not healthy to remain feeling this way for very long. Instead, one will feel better quite early on if he/she looks around the room and seeks out happiness some how from some where,.

“A Magical Experience”

Although, the hour is late, I am choosing to stay up late to update the blog. Last week B”H, we celebrated Benny from graduating from all treatments in the hospital. This past Friday, Ari, Benny and I celebrated the last time Ari will ever have to give his son a shot in the leg IY”H. We reminisced how in the beginning of Benny’s treatments, Benny would point to which leg he wanted the shot in. Then he sat quietly as Ari gave him the shot. Then he went way beyond the call of duty and gave his Daddy a hug and kiss after he got the shot. I am not sure who cried more at that point, his Mommy or Daddy; probably a tie.

As the shots drew near to the end of it’s cycle, Benny no longer pointed to the leg of choice and instead said “no, no as he waved his hands no! no! Once again, we had tears and begged Hashem to please remove the pain he may feel as a result. B”H after a few pats on the leg after he got the shot and bit of comfort I was able to provide, he stopped crying. Usually within a minute.

There have been many things I have been able to overcome over the course of this year, but there is still one thing that remains on the fear block. Shots, it doesn’t matter if it’s me or someone else. The fact that I didn’t pass out after Benny got his is miraculous in itself.

The reason I am staying up so late is to catch you up on the last few days. I feel a level of excitement that I am sure you will feel as well.

This past Thursday, I received a text message from a close friend (she’s actually my nieces age), but never the less, she’s a close friend or “adopted niece”). She asked me if I would like to join her (and the children she was babysitting) on a trip to Disneyland. After a few minutes, I responded yes. Not quite sure why I said yes. I had just opened a new business venture that morning (sample sale-steep discounts of designer clothing). I said yes for a number of reasons, mainly because I wanted to help her out, it was the least I could do after how much she has helped me this past year with my children. Plus my friend was away and I wanted her children to have the best time possible. (okay, so that is the background)

The trip itself was not easy. It was hot, the lines were long, even with the special pass we got because of Benny, and it took us 2 hours to get home, just in time for me to reopen for business. What transpired as a result of going to Disney, really California Adventure, is nothing short of G-D working in His magic. Is that the magic they refer too in Disney?!

I received an email before Shabbos, from someone I have never met nor heard of. I will share some of the correspondence for you to get the full picture.

“This is completely random, but as I was waiting for my children at Fliks bumper cars at California Adventure park, a lovely woman in a gorgeous skirt walks up with her children, I look up from the skirt (because that is what caught my eye!!), and see ball caps, with “Team Benny” printed on them. I was curious, was this the same Benny I had heard about recently?

So I googled, and I found your blog. What a small world it is, as a friend of mine had just shared your story several weeks ago when we were at a Relay for Life 24-hr event. (Her niece has an aggressive form of brain cancer, she is 17)

I do regret not introducing myself yesterday, but I did not want to interrupt what looked like a joyful family outing. I just wanted to tell you that my family and I have been praying for your son since the Relay event, and it was just neat to see him in person yesterday!

Your words are such an inspiration, as is the journey you have been on. We will continue to pray for Benny, for his healing, and for his very long life. I greatly admire your faith and strength.

Thank you for sharing your story. May you all be blessed in wonderous ways, and may the Lord grant Benny complete healing.”

After responding back with a gratitude of thanks and some questions, I received this email.
“heard about your son at our local Relay for Life event (Thursday was also super last minute for us too!). I did a booth for a young lady, Kayla (who needs so many prayers.) who has an aggressive form of brain cancer. They gave her 6 months back in September 2010, and here she is still fighting. She graduated high school a week and a half ago, and she walked that stage! A miracle for sure.

Anyway, Kayla has an aunt who is an oncology nurse and we were discussing cancer and how more children than ever are fighting it. And Benny was mentioned (I don’t believe she actually knows you, just the story), and she was marveling at the faith and tenacity with which your family has handled Benny’s situation. It was just a comment really about the different ways parents deal with childhood cancer, and how your blog is such a beautiful testament to a woman (and family/community) of faith and positive thinking.

While we had added Benny to our prayer list, it wasn’t until I saw your hats I remembered I had still not seen your blog. I’ve since read every entry, and I’m just still in awe of you and your family, and really how many people around the world are touched by your son. I know that we were at that ride right then for a reason to. It’s been a trying time personally for me, and for some reason, seeing you and Benny like that, it was just as if a calmness settled on me. He emits such a light about him, very much a blessing to all around him.
In the meantime, we will continue to pray for Benny and your family. I look forward to seeing his complete healing and watching some major milestones in his life!! Do you mind if I add Benny to the prayer team my church has? We have one big one(about 2,000) and a smaller one that I pray with on Tuesday mornings throughout the year. (Ladies from my bible study group)

I just have to say again, I greatly admire you and your faith. It’s just amazing. I’m all teary-eyed and goosebumps right now! I still am just stunned at the randomness! Well, kind of, I always tend to have things like this happen, perhaps it’s because I am a magnet, or I just notice things? It is always a great blessing, no matter how/why. I don’t question anymore, I’m just thankful.

I look forward to updates!!”

There are so many wonderful things to learn from this email. The power of a “modest skirt”, making a Kiddush Hashem (honoring G-D) in our actions, and the Achdus, the unity we share in Team Benny and more importantly, as a nation of Hashem (G-D).

I would like to ask for everyone reading this post to say a prayer for Kayla and for all those sick with this horrible disease. Let us pray that Kayla will be cured and one day walk down her wedding aisle as well. Let us also pray that Kayla’s mom to have the strength to withstand this enormous test and that one day she will restore her faith in G-D and humanity.

I know have clarity why I went to California Adventure that day. Thank you J. , for reaching out. I look forward to meeting you one day soon.”

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A Day of Thank you

We had a full day today. In the morning we went to Maimonides elementary school to say thank you to the children who have been davening for Benny the last 14 months. Today was the first time they met Benny or Binyomin Chaim as they know him. They knew me as Faigie Sarah (I havent been called by my full name since I was a little girl). I didn’t mind one bit.
The junior high was quite moved meeting Benny. The 1st and 2nd graders were literally jumping for joy. If Benny knew anything about fame, he sure would feel good on that alone.
He primarily was interested in riding the bikes in the playground and sliding down the slide. He did enjoy when the 1st graders sang Ani Ma’amin. And he loved Emily’s excitement when she heard Benny is BH doing better.

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After school we headed to the Grove for a quick errand at the post office. We stopped off at Coffee Bean for Benny’s favorite drink, a carmel ice blend and then hopped on the trolley for a ride. Benny waved to all those walking below. Maybe he does know his celebrity status after all !
After the Grove we had another errand to go on downtown.
The errand was near a fire station and so we knocked on the fire station door and said hi. The fireman and dog “Bear” gave us such a warm greeting a even took us on a ride in the fire truck for about 5 minutes. Benny really enjoyed the ride and even getting licked by the dog.

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1.2.3.4…Go!

B”H Benny is doing well for the most part. He has been pretty clingy, but we’ve been down this road before. It usually takes about a week after we’re home from the hospital, that Benny will let me out of his sight. Today, I was able to drop him off at Bubbie & Zaida’s house for a few hours and sneak out the back door. Unfortunately, he did cry a bit, but got distracted and was fine.

I wanted to back track a few days. I’ve been wanting to share with you the final days in the hospital. The last week in the hospital, primarily the last two days,Thursday & Friday, were filled with many good-bye’s and congratulation wishes. We saw 90% of the people that were involved in Benny’s healing process and gave them Team Benny in support of their effort.

After we gave the men at valet, Juan is Benny’s favorite attendant, there was a visitor passing by at the time. She asked if we were selling the caps. After I told her we weren’t, she asked if she could have one. After I gave her one, I told her she has to pray for Benny if she’s joining the team and she agreed.

We gave caps to the security guards, nurses, doctors, technicians, the woman that cleaned Benny’s room everyday and the child life specialists. It was a “Team Benny” week at CHLA.

On Thursday, I made sure to visit the BMT (bone marrow transplant) ward with Benny, to thank the nurses that helped get us through that very difficult period. They were thrilled to see Benny, his new beautiful hairdo and how well he is doing B”H. These nurses see so much, not all of it easy, so to see success, it gives them hope and reassures them the reason, why they are in this career in the first place.

Thursday evening, Benny decided to socialize with the nurses at their station. It’s a good thing it was a quiet night, because Benny had a lot of questions.

That night, I was reminded of my Zaida Ben O”H (Benny’s namesake). Benny decided he wanted to have relay races. He started off by counting 1..2..3..4 and ran. My Zaida O”H, used to do the same thing, even at the age of 80. He used to visit children in the hospital and offer to race them down the halls, in order to get them out of bed and moving. Of course he always let the children win (although, it was a close race). When I looked at Benny in action (on the final night we were in the hospital), it was magical. I looked at it as a s’mon (sign), that IY”H he too at the age of 80 will be cheering up other’s and counting 1.2.3. 4 go!

Friday morning, was challenging. Benny was NPO (nothing by mouth) prior to his dental procedure. Benny was given a time slot of 12:30 in the OR. He couldn’t eat or drink. I tried taking him on a walk outside, but when we passed the store on the first floor, filled with treats, he went straight in and grabbed a candy bar. I told him that I didn’t have my wallet and that we will buy it after his procedure. That didn’t fair to well with him and he persisted on buying the candy. A security guard (who got a Team Benny cap) overheard me telling Benny I didn’t have money and proceeded to take out her wallet and hand Benny a dollar. I stopped her in middle to tell her he’s NPO, and said after his procedure she can buy it for him. Benny didn’t budge and about 3 minutes later Brian walked by. Brian is the kind fellow who was in charge of Benny’s stem cell harvest. He saw Benny holding the candy and took out a $5 bill and told Benny to buy as much as he wanted. I finally caved and agreed to let Benny buy the candy bar. He agreed not to eat it until after his procedure. Brian went on to say how he loves Benny and our family and our community. It felt great.

During the 3 long hours that Benny was in the OR, we met a few more members of CHLA that treated Benny at some point during the year. Youssuf was one individual who was in charge of Benny’s EKG’s. Benny stood out in his mind as the patient with the most original positions for this test, one included, a ride on my shoulders. He really wanted to see Benny and even went to find us in the recovery room bearing a large Sponge Bob stuffed pillow.

Once the dental work was complete, we went back to our room #4352, to be discharged. The nurses on 4 West prepared a farewell song, “Hit the road Jack..no more no more, no more, no more… and gave Benny some departing gifts. We brought a cake (made out of cupcakes) to share with all the patients of 4 West. We wanted them to be a part of the graduation to give them hope that one day soon, they will graduate from 4 west too.

We were fortunate to see our incredible doctor, Dr. Marachelian and her team and thank her/them for all they have done for Benny. They are more than just doctors/nurses, they are family. We feel so blessed having Dr. Marachelian as the Sheliach (messenger in Benny’s Refuah) from the start.

There was an ongoing joke, that I was “Chai maintenance.” I didn’t mind, it got me the room I wanted almost every time. On the way out (for good IY”H), I turned to Dr. Finely (who used to make fun of me, and doesn’t even treat Benny’s illness) and said, “it pays to be high maintenance, it cures cancer!” We all had a good laugh.

Once we were on the road, after 6 pm, it was getting close to Shabbos. B”H my friends were kind enough to take care of everything we needed for Shabbos. The decorations on the door was only a glimpse as to what awaited us inside. There were balloons, Elmo and graduation themes, so many flowers, candy platters, home made graduation cakes, cupcakes and very creative graduation pops, each personalized with every member of the family. There was meat. chicken, soup, kugels, salads and dessert to feed an army. It brought forth the feeling of genuine Simcha shared by so many.

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“YOU have got to be kidding!”

(written late last night after a long day and previous night. I fell asleep before hitting the publish button, with the laptop on my lap and fingers on the key pad (too bad I am no longer in school, my English teacher would have been so proud).

“YOU have got to be kidding!” Those are the words that Ari and I said to each other last night (Sat. night) on the way to the ER in Children’s Hospital. We actually did not have to say it; the expression on our faces said it all.

We weren’t even home for 28 hours before we had to turn around and go back to the hospital. Benny was enjoying his Shabbos playing outside, running around like any 2 year old would, and then he fell in a funny position and injured his foot.

He couldn’t walk on his foot the remainder of the day. After speaking with his doctor after Shabbos, we were told, to go have it checked out in the ER. We needed to rule out anything more than a sprain Chas Veshalom. It was just way too early to have to go back to the hospital.

Maybe it was Hashem’s way of saying we hadn’t yet said good-bye to the ER department and last night was our chance.

We got to the hospital around 10:30 and home after 1:30 am. Being that Benny is still an oncology patient, we were able to avoid waiting the long “clinic” line, and got in to a room fairly quickly. The waiting process was painful and numb at the same time. Painful, in thinking what if and numb, in knowing that it can’t be! We didn’t know whether the laugh or cry.

Hour’s prior to Benny’s fall, we were standing in Shul reciting Hallel. The Tefillah (prayer) of Shevach, V’Hoda (thanks), literally crying to the beautiful tunes and words of Hallel. (Ari’s Davening added to my emotion). Then after Shul, Ari spoke at the Kiddush giving additional Hakaros Hatov to Hashem and our community and communities around the world for the 100′s of millions of prayers and merits that were done on behalf of our little two year old son(IY”H, he will put his speech in writing for those who were not able to hear it in person). It was an amazing feeling to finally reach the end of treatments in the hospital B”H. We were so happy to share it with all of you.

While waiting in the hospital last night, not knowing the outcome right away, is torture. No matter how much we have gone thru this past year to build our Emunah and Bitachon, the Yetzar Hara still manages to creep in and scare us, once, too many times, if you ask me! Sometimes, I am at a crossroad, do I say “Hashem, enough, I can’t take anymore! or do I say, all is good, perhaps both. “

Last night was clearly evident that although we are thankful for the completion BE”H of the hospital treatments, our Tefillos and Zechusim must, must continue. We still have another month of oral medication at home and then we will have a week of scans before we can receive Benny’s Diploma IY”H.

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Out of the OR!

Baruch Hashem we are happy to report that Benny is out of the OR and in recovery. He only had 35 cavities in 18 teeth! Minor procedure…

We are waiting for him to wake up so we can go home for Shabbos! Thanks for your tefillos!!

Still Waiting

Benny is still in the OR. No updates as to why it is taking so long. IYH we hope and pray he is safe and will be out soon . Shabbos is coming.
There is a community wide effort to light Shabbos candles ten minutes early as a zechus for a complete refuah shlema for Chaya zissel elka bas Blum. Chaya is a dear friend of our family. She is a mother, grandmother, wife and daughter of a special family in our community. We have to do whatever we are capable of doing to bring an end to cancer and all illness in Klal Yisroel.
This Shabbos should bring a complete Refuah Shlema to all .

Benny’s getting his teeth polished in the OR now!

Benny is currently in the Operating Room having his teeth repaired from tooth decay, as a result from all the medications received over the course of the year. IYH he will be ready to smile in a couple of hours to face the paparazzi upon his much anticipated return home IY”H.
Elimelech Ben Basya is moments away from receiving his stem cells. The next week is crucial and he will need all of our Tefillos to help him thru IYH without any side effects.

Please take a moment to Daven for our children now and when you light candles tonight.
Elimelech ben Basya
Binyomin Chaim Ben Faigie Sarah
And Rafael Yoel Ozer. Who IYH is going into surgery tomorrow to have his feeding tube removed .
All our Tefillos should be a cure for all te Cholim in the world.

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On the way into the OR

Kiddush!!!

Dear Family and Friends –

It is with great joy and thanks to Hashem that we share with each of you that Benny (ad meah v’esrim) has completed his final course of immunotherapy.

Tomorrow Today we go home after what we hope will be his final week-long hospital stay. We are thankful to Hashem for the healing hand we felt throughout this entire 14 month journey – and are thankful – at a level we cannot adequately express – to each and every one of you who participated in Team Benny. Your words of tefillah carried the day time after time. Your kindness to our family gives us an inkling of what the Chessed of Hashem is. Your actions on behalf of Benny, and the other children in need, leave us constantly shaking our head in wonder and saying “Mi K’Amcha Yisroel”!

While we still have a road ahead of us to complete Benny’s at home treatments and then further testing over the next two years to ensure that the disease is truly gone, we feel the need to thank Hashem for carrying us for the past year plus and bringing us to this major milestone.

This Shabbos we have the zechus to celebrate milestones with the rest of our wonderful children as well. Yehoshua Elyokim turned 10 years old this past week, Shmuel Tuvia turns 8 this coming week and Rivka Basya is graduating elementary school in the coming weeks.

So join us in our small impromptu celebration this Shabbos at Shaarei Torah (La Brea Ave) – and just to be clear for those concerned… this is not a seudas hoda’ah – just a seuda of hoda’ah.

Davening is 830am, Kiddush to follow.

No more sleepovers IY”H

B”H Benny is fast asleep. I just removed his tie and shoes and tucked him in one last time in his hospital bed. Good night eagle, good night room #4352.

I am too overcome with emotion to sleep.

Today, was a day of thank you’s.  Thank you to all the wonderful people of CHLA who took amazing care of our Benny. From the valet attendants, to the receptionists that check us in, to the cafeteria and gift shop cashiers, to the security guards, to the child life specialists who work hard each and every day to brighten up our day, to the volunteers who bring their dogs by, to the volunteer librarians who read at the bedside, to the musicians, to the cleaning crews who shine the floors, to the chaplain who delivered our kosher refrigerator to the room every visit, to all the visitors we knew and those that we met for the first time, to Bikur Cholim for arranging blood and platelets, endless meals and medical assistance, and to Chai Life Line who brightened our long days, weeks and months with food, gifts, volunteeres and much more. To the incredible therapists, nurses, pcsa’s and doctors of CHLA.

Today was a day of good-byes.  Good-bye, noisy irritating beeping machines, good-bye vital signs in the middle of the night, good-bye painful medications, good-bye scale, good-bye 4 walls, good-bye view of downtown LA (I did like that though), good-bye bed /bench, good-bye fear, good-bye and good ridden Cancer forever and ever.

Today, Benny walked around the hospital dressed in his tie and Shabbos shoes. For some of the time he wore his pretend Talis too. He also began rehearsing for tomorrow’s graduation IY”H.  I hope he will feel okay tomorrow IY”H after his dental treatment and will be able to enjoy walking out of here!

Tomorrow, Benny is scheduled to have his teeth cleaned and cavities filled. Being that he is so young and he has quite a few to fill, he will have to be put under sedation in the OR.  Currently he is scheduled for his treatment at 12:30, hopefully sooner, especially because he won’t be allowed to eat 8 hours prior and drink 4 hours prior.

Benny still has another month of oral medication before he is ready to go for scans. Only then IY”H after he gets a clean bill of health will his central line (like a port) be removed. IY”H some time in July. In the meantime we are given the opportunity to Daven more and continue to do all we have done until this point, as a zechus. IMG_9530

 

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 Tonight I had the children brought to the hospital (thank you Alti) so they can congratulate Benny upon his completion of treatment and to say a proper good bye to the hospital IY”H. IMG_9598

B”H bye bye medicine

I had some difficulty uploading the videos yesterday. I think I finally was able to figure it out .
1st is Benny’s graduation rehearsal
2nd Benny’s IV medications being disconnected for the very last time IYH
3rd Benny found a new toy. The nurses call button. Listen closely he says “nurse.. Want to go to playroom”

I Wish

It’s finally quiet. Hopefully, Benny is sleeping for the night. He had a difficult time all day just resting. He started off early this morning saying “I want to go. ” I asked him “where?” He responded, “I want to go home.” My heart sank. I don’t blame him one bit, so do we and our children.

Today, I received a text message from my second grader’s teacher. I didn’t know whether to laugh or cry. I did a little of both. The teacher wrote that they were reading the book the “Chocolate Touch.”, it is about a boy who anything he touches turns to chocolate. The students were asked to draw a picture and write if they had a wish, what it would be. My seven year old (soon to be 8 in a few days IY”H), wrote the following “I wish Benny would not have to go to the hospital ever again.” “I wish that Benny could come home right now. Benny I miss you so so so much. You are my BFF and are very cute.” I know we all share in that wish and BE”H it will come true very soon. I was touched by the wish, but at the same time, sad of the reality that, that is what he has to wish for. I wish for my children IY”H to grow up without the constant fear of illness. I wish for every family out there who are in a similar situation to be out of it immediately.

Today, Benny enjoyed a visit from his Great Uncle Simmy and cousins Jenny and Mindy. He ate the croissant after you left, so thank you! Soon after, Avigayil came to the rescue and walked with Benny up and down the hallway, to give me a chance to sleep for 1 1/2 hours. Thank you so much!!! Later, Alti came when Ari had already returned to the hospital. Benny loves playing with Alti, which enabled Ari and I to step out of the room and take a walk outside. Thank you!

I cannot keep my eyes open any longer. I pray for a peaceful, restful night for Benny IY”H.

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on the top is a heliport on the bottom is valet

BH transfusion went ok

Quick update. Sorry for the delay.
BH the blood transfusion went ok without any complications.
It has been another long day of treatment, mostly because Benny is hooked up to monitors and can’t go far from his bed. Another 4 hours to go for today.
I will write more later…

Please take a moment during the morning rush to Daven

I don’t usually write this early 5 am.

At about 3:30 am the nurse came in to draw labs to test the level of Benny blood. The study for the medication Benny will IY”H be receiving today, requires Benny’s hemoglobin to be above the number 10. The level came back at 9.6 and therefore, Benny will require a blood transfusion. Benny has received many transfusions in the past and B”H did just fine. IY”H he will this time as well, however, for some reason the doctor on call tonight, just came in the room to tell me the risks involved and asks me to sign a form consenting to blood. I stopped her in middle and said, I don’t want to hear and not to use the word “rare.” For some reason when dr.’s have said “rare” in the past, lets just say, it has not worked in Benny’s favor. When asked why I have to sign a consent form this time, she said it is something done twice a year.

So now, I find myself wondering why did this all occur in the first place. The answer is simple, Hashem loves hearing our Tefillos, especially right in the middle of the morning rush hour, when it is not the easiest of times. Please take a few moments and ask Hashem that the blood Benny is about to receive be a good match without any side effects Chas VeShalom (G-D Forbid).

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Graduation Week

B”H day two of treatment has now been completed. B”H no side effects today. There is no way of knowing what will be from day to day, but the only thing we know for sure is that all your Tefillos continue to work.

The days are quite long and exhausting. Alti, was very helpful today, as was his brother Joey and friend, Avigayil, Alyssa, Tamar, Shoshie and of course Zaida. Today, Benny played with the thermometer by pressing the button to shoot the plastic sleeve off. He aimed it at people pretending to shoot. He also said several times, “I want to ‘potch’ the doctor. It was pretty funny. Benny B”H has a lot of energy and usually spends a good few hours fighting to take a nap, until his body just gives in. Today, that happened around 4:30 pm., not the ideal time. Of course he got a second wind in the evening and fell asleep about an hour ago. Benny’s Daddy had the shift this evening until the changing of the guards occurred around 11 pm.

Throughout the day, we received visitors from staff around the hospital bidding farewell to Benny. These are people who have become part of our life over the past 14 months. It’s bitter sweet. On the one hand, we never want to be affiliated with these people, yet, on the other hand, we are so grateful for what they have done. They are genuinely excited that this is our last hospital stay (not because we are high (chai) maintenance), but because I think they enjoy seeing Benny’s Simchas Hachaim (love of life). I pray to Hashem that our mission is soon complete and that we can return as visitors only.

Today, I bought Benny a graduation balloon for his room as we celebrate Graduation Week. To all those seniors out there, you can relate to some of the feelings we are experiencing this week. You are thrilled to be finally out of school, yet you will be sad to leave your friends and even some teachers behind. There is a sense of security that you now feel, but once you turn your tassel, and freedom kicks in, you are left to make decisions on your own. You step out of your comfort zone and into the unknown.

My Bracha (blessing) to all you graduates out there, Hashem should bless you with clarity and guide you in the right path in all areas of your life. Your life should only be filled with Mazal and Bracha and a deep connection with Hashem.

NO PRESSURE

I know many of you have read the blog, and feel uncomfortable writing back because we do not know you. I have one request of you that was only asked once before when we were in CHOP. That is to send Benny Ecards. I am compiling all his letters over the course of the last 14 months into a book that he can IY”H read when he is older. I would like to include Ecards from each and every one of you. It can be a graduation cards, a congrats etc., you can decide. Please include a message of how you helped him thru his treatment and a message he can hold onto for the rest of his long and healthy life IY”H.

I hope one day to personally write each and everyone of you back and for Benny to write as well. Below is a website for free Ecard greeting cards. Thank you in advance. the convention

http://www.123greetings.com/events/graduation_month/

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Day Two

B”H your Tefillos and Ma’asim tovim (good deeds) are working beautifully. Benny had a good day yesterday. Other than just being upset for a few hours that his Daddy had to leave to go to work, he did not have any side effects from the medications. Elimelech is also doing ok B”H.

We are a few minutes away from beginning day two of treatment. Please continue to do what you have been doing, we see it is working B”H. Thank you Elimelech for the yummy doughnuts your mommy bought Benny this morning.

We had a few special visitors yesterday. “Uncle” Avi spent some time coloring a picture for Benny in the playroom before he went back to NJ. Benny is still upset you left, but he does like your masterpiece! Thank you Tamar for the visit, helping Benny decide on which shirt to wear (do all your kids wear two shirts a day?), and the delicious fruit salad. We also had a special surprise visitor from our hometown, Dovid G. Thank you so much for making the effort to visit (for the second time no less). Hopefully, your next visit will be for a Simcha IY”H very soon.

Last week, we were not in the hospital, but they did have some surprise guests that came to visit the children. I wish I would have known because I probably would have brought in Benny. Benny’s favorite character’s, Elmo and Cookie Monster from Sesame Street came to visit the children. Elmo, if you happen to be following the blog, please come back this week :) .

 

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Finals – Day One

We are several hours into treatment. B”H Benny is doing well so far. The treatment is scheduled over 4 days, 10 hour drips minimum per day if all goes well IY”H.

We pray that the treatment should be successful without any side effects such as high fevers, difficulty breathing and pain.

IY”H, This week marks the beginning to the end of a very long and intense journey.  This week also marks one of the most intense weeks of treatment for Elimelech ben Basya. He is staying down the hall thru the double doors undergoing his stem cell transplant. This treatment should IY”H clean out any harmful cells remaining in his body and be replaced with fresh and healthy clean cells.

Last week, our dear Aunt Sheila who came to visit from NY, gave a wonderful Shiur (class) in our home on the power of positive speech.  She shared with us a story that when one of her family members had gone thru a similar experience as ours, the family took on to learn Shmiras Haloshen. As a result, the child did not get even one mouth sore as predicted when going thru a transplant.

I would like to arrange a nightly teleconference (about 10 minutes long) where we say a Kapital (chapter) of Tehillim (Psalms) and learn a Halacha of Shmiros Haloshon, as a Zechus for our children that they weather thru without any side effects IY”H.  If you would like to be part of the class, please email me, faigie@faigie.com .

Below is an excerpt from the shiur :

We stressed the need for Shmiras Haloshon in order for all of our Tefillos (prayers) to be accepted. We would not serve a King (or anyone) on a dirty dish; we therefore, do not want to offer our Tefillos to our King with a dirty mouth.

Really, we need to study the laws in detail. My children have been studying from a book called “Purity of Speech” It presents the laws of Shmiras Haloshon in a clear manner with lots of examples.

We know that there are 7 conditions to be met before we say something negative about someone. Having a good Toeles –purpose, is only one of the conditions.

The Chofetz Chaim Heritage foundation came out with this easy to remember mnemonic.

CAUTION

C  heck

A  ccurate

U you speak to the person first

T hink

I intention

O use Other method (when possible)

N o worse punishment

 

Check- that all information is first hand information and not just hearsay.

Accurate – Do not exaggerate, even if you think you will not be believed if you don’t.

U- You speak to the person himself first, rather than letting someone else.

Think, is this prohibited, or just not what you like.

Intention – You must have a positive reason to tell this. If you harbor any animosity at all against the person, you are not allowed to speak.

O use Other method whenever possible (such as making a different suggestion).

No worse punishment should occur as a result of your negative speech, than what Bais Din (court) allows.

We want to help people and not hurt them. We want all our Tefillos and Torah to be accepted by Hashem.

  May Hashem bless all of us to have the Koach to live according to His/our goodwill. 

We’re in the Home Stretch IY”H

It is 11:25 Sunday night. B”H Benny is resting comfortably in his hospital bed. We checked in about an hour ago. I wasn’t sure how Benny would react coming back to the hospital tonight. Once again, B”H we were pleasantly surprised. Benny fell asleep on the way to the hospital and remained sleeping throughout the check in process.

On the way to the room (guess which one?) the one with the “view”, the one with the “eagle” above the bed, we met Brian in the hallway. Brian is the special person that administered Benny’s stem cell collection over one year ago. He also plays for a band and even wears a Team Benny cap to some of his performances. He was the one who told us that Benny had the highest collection recorded. He was so excited to see Benny and remarked how special “our” family is. It is just what we needed to hear as we embark on this week’s final journey in the hospital IY”H. When he said “our” family, he was referring to each and every one of you!

Tonight, was quiet emotional, and I am sure will continue to be throughout the week, as we take a trip down memory lane. The charge nurse was kind enough to assign us our favorite room. This was the first room we we checked into 13 1/2 months ago. We were in here for two excruciating long weeks. Both, Ari and I stayed here 24/7. The hospital was accommodating by allowing us to bring in an extra bed so both of us could stay. They did their best to make things bearable in the most unbearable situation. The only escape I felt at times, was looking out the window, especially at night, glazing at the light of the moon and the skyline of downtown Los Angeles.

“Avodim Hayinu.. L’Pharoah B’Mitzrayim” although, we say these words year after year every Pesach, I can honesty say, I could never fully understand them until last Pesach, when Benny was first diagnosed. The despair, the darkness, the pain, was intolerable so much so, that after five days in the hospital, the nurse suggested I check myself into the emergency room for fear I was having a heart attack, Chas Veshalom. It was only at that point that I was forced to decide which road to travel. B”H, Benny, Ari, my family and myself, were blessed from the very beginning with a strong network of support, which only grew and grew. It was this network that gave me/us the strength to avoid the emergency room and get us to where we are today.

I will never forget those long sleepless nights, the midnight calls to Dr. Lax in NJ asking for medical guidance, or to countless Rabbi’s asking for Chizuk, or to family and friends asking for Mechila (forgiveness) for any harm I may have caused them. We needed Benny to pull through and there wasn’t one stone we were leaving unturned.

We are so grateful to Hakodosh Baruch Hu, for redeeming us and allowing us to learn the real meaning and purpose of life. We are so grateful for the tremendous Bracha our son Binyomin Chaim has given us. Without him, we would have never known the true definition of Simchas Hachaim (love of life). Benny defies nature. Nature being, with all that he has gone thru; painful chemo’s, surgeries, infusions, sleepless nights, nausea, bad tasting oral medications, high fevers, infections, etc., he should be bitter, angry, cranky unconsolable. B”H Benny had the opposite effect. He lives every moment in the moment, with love, with laughter, with magic, with a deep rooted connection to Hashem.

This morning we were fortunate to pick up at the airport a special visitor from NJ, “uncle” Avi (Rafael Yoel Ozer’s father). Ari and the boys had a wonderful visit, while myself and the girls attended Miri’s Bas Mitzvah . Mazal Tov! Thank you Avi (and Michelle who let him go), for coming to visit and especially lifting the spirits of our children. They really, really miss you!

This evening, before we checked into the hospital we went to Tamar and Ilana’s Bas Mitzvhah celebration. Mazal Tov! These two young ladies were pivotal Team Benny players this past year. Whether it was their warm get well cards, or fundraising capabilities selling lemonade in order to sponsor their mother to run for the Chai Life Line Marathon. The Bas Mitzvah theme was Hakaros Hatov (giving thanks!), set in a decorum of butterflies. The CHLA logo is a butterfly. The butterfly represents not only one of Hashem’s beautiful creations, but the renewal of life. The incredibly gifted doctor’s and nurses of CHLA are blessed with the task of giving those that enter thru the hospital doors, a sense of hope and renewal of life.

The hour is late, I will IY”H write more as the week goes by. I pray with every ounce left inside of me that this is the last Sunday night IY”H that I will be writing from the hospital. The last Sunday night, Benny and I will have to spend away from our family.

This has got to be the week, where we can tell Hashem, we got the message, we understand, we no longer need this test, we love Hashem, we thank Hashem, and we are ready to live our life according to Hashem’s will. There are literally 100′s of individual’s who have done incredible acts, as a Zechus for Binyomin Chaim ben Faigie Sarah. We applaud you. If you have been inspired, it is because you allowed yourself. If you are thinking about making a change, now is the time. Now more than ever, we are nearing the end of treatment. We need to show Hashem, we want to do His will and do not need any more tests or treatments through illness Chas Veshalom to get the message. We all want to see our children, our grandchildren and great great children IY’H grow up healthy and serve in the way of Hashem. Let us show them the way, today!

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Benny painting a tile at the Bas Mitzvah that will be donated to CHLA

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Benny kept himself entertained during the speeches plus he made a new friend. BH He was more successful tonight than in NY.

It feels good to be acknowledged!

This past week Benny celebrated in numerous happy occasions. It began last Sunday with Yehoshua’s Mishkan Fair. Benny really enjoying seeing the boys projects and learning about the Avodah (work) of the Cohen( priest) during the times of the Bais Hamikdosh (Holy Temple). IY”H very soon Benny will be able to do his Avodah.
Mid week Benny joined his brothers’ at Shul in a Siyum for the completion of Sefer Tehillim (book of Psalms) that was recited every Shabbos. Benny especially loved holding and kissing the Sefer Tehillim that was awarded to his brother Yosef Tzvi. YT was mentioned as being one of the older boys that come almost every Shabbos to Shul in the afternoon to say Tehillim. He felt so good that he was acknowledged for his efforts and made sure to go today too. IY”H may all the tefillos of these children and all of klal yisroel be heard and may all the Cholim be given a complete Refuah Shlema.
And as you just read the week ended off with Yehoshua’s birthday this past Shabbos. Mazal Tov! We hope to celebrate IY”H next Shabbos when we have returned home from another week at the hospital. We pray that this will be he last hospital stay for us forever, other than for Simchos.

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The Mitzvah of Hafrashas Challah this week’s Parsha

Just a quick middle of the date post – in case you are about to bake Challah, or have wanted to for so long, but never did.

In this week’s Parsha Shlach, we are given the Mitzvah of Separating the Challah( for the Cohen (Priest), during the times of the Bais Hamikdosh (Holy Temple)).

I  have attached a beautiful article forwarded by my dear friend Aviva Rus explaining the beauty behind this Mitzvah.

http://www.chabad.org/theJewishWoman/article_cdo/aid/913441/jewish/The-Mystical-Dimension-of-Challah.htm

If you decided you would like to bake Challah this week, please sign up on the spreadsheet on the home page. Please have in mind Elimelech ben Basya, today is when he checks into the hospital for about a month to receive his stem cell transplant. IY”H everything should go well and he should have a complete Refuah Shlema. Rafael Yoel Ozer ben Chaya Malka, needs our continued Tefillos so that he recovers 100% IY”H. Binyomin Chaim ben Faigie Sarah, he is supposed to go into the hospital IY”H this Sunday for his final treatment of Immuno Therapy (depending on if his cold goes away by then). Please have in mind that this should be our last treatment of the sort and he be blessed with a complete Refuah Shlema Min Hashamayim.

Here are a couple recipes that my family enjoys. Please send us your as well.  We would love to give it a try.  The separation of the Challah and Bracha is made before braiding the Challah. If you would like a copy of the Bracha please email me.

EGG FREE CHALLAH w SWEET TOPPING:

4 1/2 cups warm water

3 Tbsp.  dry yeast

1 Tbsp. sugar

Place ingredients in large bowl and let it sit for 10 minutes.

Add:

1 3/4 cup sugar

1 1/2 cup oil

5 lb. flour bag

4 tsp. salt

Knead to let rise for 2 hours, braid and let rise another 40 minutes. Brush with egg or water and add topping.

Sugar Topping:

1/3 cup flour, a little less than 1/3 cups sugar, 1 tsp. oil. Mix with hands until crumble forms.

Bake  350 about 40 minutes or more.

Mimi’s Challah Recipe 

5 Tbsp dry yeast

3 Tbsp sugar

4 cups warm water

Place all ingredients in a bowl about 10 minutes until mixture bubbles.

In the same bowl add :

1 cup oil

1 1/2 cups sugar

5 egss

5 lb. flour bag

4 tsp. salt (I use Kosher Salt)

Allow dough to rise for 2 hours. Shape Challah and let rise again 40 minutes. Bake 375 for 30 minutes or when it looks ready.

I smell it already…Enjoy.  Please send your Challah Pictures and Recipes.  May all of our Tefillos be accepted IY”H.

Challah baked by Tammy :)

It’s a Bird, it’s a Plane, it’s Superman

Picture: Benny as Superman; Benny driving a boat; Benny riding a train; Benny flying a plane, Benny trotting on a horse.

One thing all these pictures have in common, other than Benny, is they all represent a means of transportation. Over this past week, Benny flew on a plane (sat in the cockpit), rode a train, trotted on a horse, drove a boat, sat in a fire engine and steered the wheel of my car. Transportation generally consists of an object in motion, traveling from point A to B.  In these cases, the motion is forward.  That is all that is expected of us down here in this world, to constantly move forward. Although, these objects may have given him a boost to get going, Benny does not need objects to move. Just take a look at him in his Superman PJ’s.  From the day he was born, Benny has been in the forward position. No matter the obstacle or turbulence along the way, Benny continues to navigate ahead with love and happiness B”H.

Each and every one of us are born with a Koach (strength) designed to get us thru the roads we travel. It is up to us to turn on our engines, put our gears into motion and steer our body and Neshama (soul) in the right direction.

Today, after our clinic appointment at the hospital, I told Benny if he behaved nicely, I would take him to ride the horses and ride the choo choo train in Griffith Park. B”H he cooperated and I had enough energy to take him to the park. I have to say, I enjoyed seeing him ride, just as much, if not more, than he enjoyed riding.

We are currently scheduled to go into the hospital IY”H this Sunday evening for the week (home for Shabbos IY”H).  Being that Benny has a cold, it will not be confirmed until Friday, if the treatment is a go on Monday IY”H.

Turning off the engine to recharge is just as important as turning it on. Everyone needs to recharge on a nightly basis in order to be able to use his/her controls properly the next day.

So on that note, I bid you farewell, good night!

 

Picture of the day!

Benny and Yoel’s Reunion B”H

It is a good thing I brought my computer to the doctor’s office. It gives me some time to finally update the blog, but more importantly, it distracts me while my son is having a procedure done on his toe.   When the doctor started explaining to my son that he will get two shots to numb his toe, I just thought I would pass out.  It’s fascinating to me that after 13 months of hospital visits, doctor’s, surgeries etc. with Benny, I still can’t stomach the sight or even talk about shots. (B”H the visit was short, my son was really brave and the doctor finished before I could write more).

Rewind, one week ago:

Last Tuesday, Benny, his Daddy and I, flew to NY to share in two Simchos (weddings).  We did this without almost anyone knowing so that we could surprise Ari’s Mom (sorry!) and the rest of his family.  I have to say the surprise was worth it (once again, sorry Mom – and you see, your heart is stronger than you think!).

This was the first trip in a year that we actually went for pleasure, unrelated to any medical procedures B”H.   From the moment we landed until 60 hours later, I felt like a kid in a candy store.

It’s difficult to describe the Simcha I felt, going back “home” to our former neighborhood where we stayed for two short days.  The joy began when we pulled up, down the block from our home and saw a close family friend outside.  Their reaction, all caught on video was priceless. I promised I wouldn’t post it (especially because we made a deal that the husband would finish a home project that he promised for his wife, or else I post the video J).   Anyways, after the loud cheers and dancing we made our way to our destination around 10:00 pm. We made arrangements to stay with Rafael Yoel Ozer and his family so that the two boys can reunite once again under happy circumstances.

Once we unpacked our bags, we headed across the street for midnight dinner in which another close friend whipped up a gourmet dinner in a moments notice. A number of friends pulled themselves out of bed to greet us as well.  About an hour into dinner, the first friend I saw, showed up with fresh hot biscotti right out of the oven. She knew it was my favorite and decided to bake it within minutes after I saw her.  I couldn’t believe it, but felt so happy and excited at the same time.

We finally settled in for the night around 1:30 am.

The next day, running on adrenaline, I lined up the morning meeting with friends beginning at 9 am. It felt like “old times.” Thank you Elisheva (for delicious dinner two nights in a row at 12) , Gitty (biscotti and toys) , Shalva( fresh Challah) , Rachel, Poey, Penina, Esther, Heidi, Marla, Shoshana, Aviva, Adina (vanilla ice cream with peanut butter), Ruchie, Millie, Caroline ( who bought a tie for Benny which he wore to the wedding), Leah, Carmit, and Savti, Julie, Shaul and Binyomin Chaim, and Tammy and Chava Leah for making yourself available and making the effort to come and visit.

Around 1pm we took the boys, Benny and Yoel out for pizza and then to a wonderful children’s museum where the boys really enjoyed spending time together.  They played like they have been friends forever (which they have, but they haven’t seen each other in about 15 months).

That evening, Ari and I had a friend’s wedding to go to without Benny. We left him in the very capable hands of Chani, who did a fabulous job of entertaining him and distracting him as he asked for his Mommy every few minutes.  That may explain why we ended up leaving the wedding early.  You have to factor in an hour of travel time there and back at best too!

Thursday morning, I was again privileged to visit with friends. Around noontime, I had made arrangements with the local Yeshiva (day school) to bring Benny and Rafael Yoel Ozer over to meet the beautiful children in school and thank them for Davening (praying) and doing Mitzvos as a Zechus (merit) for our boys.

Speaking to these students, hearing Michelle speak to the students, seeing tears roll down dozens and dozens of cheeks was truly inspirational.

Michelle began her speech by saying, “four months ago, the doctor’s were not sure if Yoel would even make it, then they said, perhaps if he does, it could take 3-4 years before he could walk or talk. Today girls, it is four months later.  Take a look at Yoel, he is walking B”H, he is talking B”H, all thanks to you. You spoke, and Hashem (G-D) listened.  We are standing here today, to give you testament that Tefillos (prayers) work. “

Next was my turn. I thanked everyone for all their Tefillos and good deeds in the Zechus (merit) of Benny and Yoel complete Refuah Shlema.  I related some of the miracles we were zoche (worthy) of experiencing as a result of their Tefillos. I wanted to let them know that the fruits of their labor were standing before them today, playing with each other.  I told them how this experience has united Klal Yisroel, in many countries and many sects of our own as well.  Our goal was to give Hakaros HaTov (deep level of appreciation) to each and every student, young and younger.

After we finished speaking we were approached by many amazing individuals who told me how inspired they are.  I am afraid they have it wrong, it is us who are inspired by all of you. We are inspired by your compassion, your desire, your positive energy to do more, your love and your support, your excitement at times and your heartfelt tears at others.

I know there are many who read this blog whom we may not have had the privilege of meeting yet, (IY”H one day soon), just know as strange as it may be, we feel your connection. I can’t explain how, but we know that you are in this journey with us every step of the way and that connection will carry us through to the end IY”H with a clean bill of health very soon.

Thursday evening was our nephew’s wedding. Mazal Tov Sholom and Ahuva. Traveling to the wedding from NJ to NY took almost as long as Los Angeles to NJ. Benny really didn’t like the traffic either. That is one thing we sure don’t miss since we moved.

We arrived just after the B’dekin, but enough time to surprise everyone.I too was surprised when I met a first cousin, Sruli who drove in with his wife from Baltimore just to meet Benny because he heard a “rumor” that Benny may be at the wedding. He greeted us with such joy and happiness, almost as happy as the Chosen (groom) when he saw his Kallah (bride). He handed me a handful of index cards with personal notes from each one of his Talmidim (students) who wrote notes to Benny. He also related that his students wanted to charter a bus to come to NY to meet Benny too.  Just hearing that made the trip worth it. IY”H our dream is to travel and meet all of you who have signed on as Team Benny players.

Benny did enjoy meeting the family, dancing with the Kallah (bride) and dancing on his Daddy’s shoulders too. He did try and win over his older cousin’s heart, but was not very successful.

Today’s Shidduch Crisis

A few close friends and family members (the other side) drove to the wedding hall just to see us and give us a hug before turning around to go home.

We had an early flight to catch Friday morning back home. It wasn’t early enough for Shalva who baked challah that morning so my family could enjoy it for Shabbos, nor early enough for Elisheva to pick up some food for our trip home.  Benny was fantastic on the plane ride home.  The pilot gave him a tour of the cockpit when he first boarded the plane. He slept for a couple hours, earned his wings (placed them on his kipa), ate complimentary Pringles and sipped soda.

Those two days in NJ/NY will be embedded in my heart for a lifetime. Seeing the two boys together go about their day playing and sometimes fighting over the same toy, with such Simchas Ha Chaim (happy heart) was indescribable, and yet so valuable.

I will cherish each smile and every embrace we received. We hope to return IY”H only for Simchos (happy occasions) very soon.

B”H we had a chance to catch up on rest over Shabbos, thanks to Uncle Benjy and Aunt Sheila who kept the children entertained.  We all enjoy your visit so much. Thank you Aunt Sheila who gave a beautiful Shiur in our home Shabbos afternoon. It was an honor to have you and we all look forward to the next time, hopefully soon.

 

Captain Benny

It been a few days since the last informative post for good reason . We went to NY to surprise our nephew Shalom and the entire family for his wedding. BH the surprise worked :) .
We are on the plane heading back to Los Angeles. I will give details on our incredible trip IYH when we return.
Captain Benny is ready for takeoff! Good Shabbos

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Benny Shops

It has been an extremely long time since Benny has gone shopping.
He did get frustrated early on when he couldn’t find anything to buy. He pointed to the suit on the mannequin and said, “i want my size.” He especially liked the ties. By the end of the trip the he enough!

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Later in the evening we were invited to join in the completion of writing a Sefer Torah. Mazal Tov to the Andrusier Family. Wishing you only good health, Mazal and Bracha.

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Simchas HaChaim – Trademark

B”H Benny is doing well. He’s thrilled to be home, going to Shul and playing with friends.  Sometimes, I wonder if being home is more exhausting then staying in the hospital. Although, we left the hospital just a little over one week ago, it seems like we’ve been home a month. The fatigue unfortunately, feels like we left yesterday.

 

Yom Tov was truly wonderful with family and friends. Benny went to Shul both days and made sure to hear and see, as the Aseres Hadibros were read. We were told that it is a merit for a complete Refuah Shlema. I remember we did it last year as well. As we have the reached the point of repeating Segula’s or meeting certain Rabbi’s for the second time, who make their annual pilgrimage to Los Angeles, we feel a sense of relief B”H.  We are BE”H (with the help of Hashem) close to the end of this journey. One never knows what will be for certain, but if all goes at least close to plan, we are looking at a couple more month’s IY”H.

 

The feelings of despair have been transformed into hope. The hope and vision of Benny living a long, healthy, happy, and productive life IY”H.  We all learn about change, but how many of us actually take that challenge to heart and do something about it. In one year, I have learned more from my two year old son, then all of my years. I learned the importance of when to cry, when to smile, when to let things slide, when to stand up for what you believe in, how to give and how to receive, how to inhale and how to exhale, how to function on no sleep, how to be in the room during a blood transfusion, how to flush his lines (huge deal) and change a dressing, how to Daven ((pray) and most of all, how to live Simchas Hachaim (happiness).

 

Simchas Hachaim is Benny’s trademark. One that is contagious to everyone in his path. I do believe if we all remain committed to making a difference in this world as a Zechus for yourselves and for Benny, he and you will BE”H remain healthy, strong and happy for 120 years.

 

Sometimes Simchas Hachaim can be achieved just over a platter of candy. OK, so it’s not just any platter…! Whatever works!

If you have a picture you would like to share supporting “Team Benny,” please send it our way. I am working on a collage of photos from around the world. Thank you!

 

 

live

We will Do and We will Listen

The table is set, the flowers are arranged, the Challahs are baking and cheese cake is cooling in the fridge.  We are hours away from Matan Torah. We have waited so patiently and anxiously for this day. A day that we have prepared for the last 49 days.

Truth be told, this is a day we have been waiting for more than 365 days. Last year this time, we were uncertain of Benny’s condition and how he would handle the strenuous treatments mapped out for him.  B”H we are so close to the end of this most challenging journey.   We are hopeful, but continue to pray more than ever that the treatments were and are successful, so that we can soon begin a new journey of life.

Tomorrow, IY”H we will be reading the Aseres Hadibros (The Ten Commandments). We were told last year that listening and seeing the words of the Aseres Hadibros is very powerful and have the strength to heal (just as all Jews were healed at the original giving of the Ten Commandments at Mount Sinai).  Last year, Benny was just recovering from an intense chemotherapy and yet he went to shul (synagogue) to listen and see the Holy words.   At the time, as the Jews did 3,300 plus years ago, we said, “we will do and we will listen.”

That is exactly how we lived our lives this past year. “We” and I speak for all of you who are reading this, you DO.  Every action, every Tefilla that you did and continue to do as a Zechus for Benny’s Refuah allowed us to make it to this point.  “Listen,” each and every one of you took Benny to heart and listened to our Bakoshos (requests), dropped everything at a moment’s notice when the email or call went out to Daven (pray), light a candle, give Tzedaka, cook a meal, etc.

Matan Torah, is a day like no other. There are no questions.  There is only clarity. This past year, living in and out of the hospital, gave us a glimpse into the meaning and understanding of life. This past year gave us the opportunity to become closer to Hashem (G-D) on levels that we did not even know existed. While there may be distractions outside of the hospital, the minute we step thru those doors, we feel we are walking into Hashem’s chambers.  Hashem is the only one Who can determine the comfort our stay and when we will be discharged.  There is clarity and full understanding as to Who is running this world; the same clarity that we experienced on Matan Torah. The same clarity that is available to us on a daily basis if we just use the precious gift of Torah that was handed down to us on Har Sinai.

Today, Benny turned 2 ½ years old. In just one day, we see a dramatic change.  He woke up this morning speaking full sentences.  This is a child who spoke about 25-30 words just a few weeks ago.  Learning to speak took months of hard work (ok mostly play), but today, he (and we) are enjoying the fruits of his labor.

May we all be Zoche (worthy) this coming Yom Tov to reach that level of clarity through Hashem’s gift of Torah and not thru what we experience as painful.

In the times before Moshiach, Hashem’s greatness will be recognized throughout the world.  Over the last several days, I have received numerous emails and photos from literally around the world of people praying to Hashem for Benny’s Refuah.   Benny is only 2 ½ KA”H (barely spoke a word), and yet has been given the Koach (strength) and Zechus (merit) to spread the greatness of Hashem throughout the world.   Let us all remain healthy and do the same.

Good Yom Tov!

P.s. Thank you to Chai Lifeline for the yummy cheesecake and to Avigdor for the fabulous Munchies tray. The kids (including of course, Benny) will be on a sugar high the whole Yom Tov! Yay!!!

Pictures from around the world:

Hong Kong, China, Thailand, Israel

Happy Rosh Chodesh and a happy one it is!

BARUCH HASHEM Benny is safely home for Shabbos.  I know this had been a difficult week to follow. We have tremendous Hakaros Hatov (thanks) for all of you who have extended yourself in ways only Hashem (G-D) will know as a Zechus (merit) for Benny to pull through. B”H you are have all earned the MVP -Most Valuable Player Award this week and we have our precious “big boy (as he calls himself) Benny home, healthy and happy for Shabbos. A special thank you to our cousin Fruma, who flew across country to help us survive the week. The kids are already asking when you are coming back.

I am hopeful that Benny will only remember the happy times this week; like the trip to the ice cream store today with the Solomon’s, or receiving a deluxe set of Magna Tiles from Tamar, eating a delicious piece of roast before Shabbos and nibbling on home made cookies. Alyssa, great choice on the trains and backpack Bear!

Thank you Bikur Cholim and Chai Life Line, who provided us with all the food and help we needed to get thru these past two strenuous weeks.

Thank you to my mother for cooking our Shabbos and to our dear friends who cooked and baked food as well. One less thing to take care of or make decisions on goes a long way. It gave us the ability to only focus on Benny and our other children. We are eager to put this behind us and begin to reciprocate very soon.

Before discharge from the hospital today, the hospital had another event in honor of Mother’s Day. Of course every day is Mother’s Day, but today, I got to be on the receiving end provided by an organization called Beauty Bus Foundation.  An hour of hair, make up and massage was just what I needed at the end of this week. It’s not something I would do on my own, but being that I was invited and it was down the hall, I went.  These hairstylists, makeup artists and massage therapists all volunteered their time and services. It was a wonderful thing to see and be a part of and I made sure to praise each and everyone.

Here’s a photo gallery of the week:

Getting some rain water – healing waters in the month of Iyar – before starting treatment.

Good Shabbos!

B”H Cycle 4 Over!!!

9 am Thursday,

Benny and Ari are now sleeping comfortably B”H.  At about 2:30 am things settled down, the coughing subsided and Benny fell asleep.  I’m not quite sure what happened first.  Ari spent the night on the chair watching Benny. He was able to complete the entire Sefer Tehillim in that time. I went to sleep on the parent bed (bench) near the window.

7:30 pm.

Although, my intentions were to finish this post in the morning, Benny woke up soon after I began writing this morning. The first thing he requested was, “home” and “out.” As soon as I was able to calm him down by looking out the window, the nurses came in to start today’s medication.  That required him to get back to bed and be connected to the monitor. He was not budging from the window, so that’s when I became his advocate and said, “you can’t expect a two year old to stay in bed for the next twenty hours, please move the monitor closer to the window or check his vitals more often, or I’ll watch the monitor (after all I’ve trained to be a nurse for over a year now!), or have someone from the hospital come in and entertain him, because I am out of energy.” After 15 minutes of negotiations, they got the message and agreed to check his vitals more often and started the meds.

Benny was active throughout the day and thanks to his brother Joey, Bubbie & Zaida, a few volunteer’s from the hospital, a visit from Sara Leah bearing doughnuts, after school visit from siblings, Yocheved, Rifka Basya, Shmuel Tuvia, and friends, Alti, Leah, Yaeli, he was in a good mood.

After about 4 1/2 hours of treatment, “the cough” started up again. Unfortunately, it didn’t stop and the doctor on call ordered the medication to be turned off. At the time we couldn’t reach our primary oncologist (she’s on vacation) and had no way of knowing how this will affect the long-term outcome. After several emails, we did get a response that not all patients in the past were able to complete this cycle and B”H are in remission.

9:30 pm.

B”H the coughing finally stopped about an hour ago. It lasted for about 4 hours and wasn’t stopping, even after multiple breathing treatments. After numerous consults with the resident, fellow and attendee, we were told to wait it out.  Then I thought, “homemade chicken soup.”  I immediately contacted my friends and within an hour Shoshie and Aliza were at the hospital with homemade hot chicken soup and noodles.  I told Benny it was on the way and he was so excited. Unfortunately, he fell asleep before the soup arrived. It must’ve been just the thought of the soup that cured his cough. Thank you, I enjoyed it for dinner, but saved some for Benny in case he wakes up.

He is now officially disconnected from all medications and machines for this cycle. B”H!!! He is now sleeping peacefully, wearing his dress shoes, two ties, a dress shirt and pants. I’ll have to slip them off him once he’s in a deep sleep IY”H.

Benny did not complete the 40 hours of medication he was originally supposed to receive this week. I’m not quite sure how many hours he did get either. We did everything we possibly could’ve.  Bottom line, he got what Hashem wanted him to have. He got what he needed. For some reason Hashem chose our Benny to endure this pain, especially this week, but Hashem also said enough!  True, Benny did not receive the full 40 hours, but maybe the remainder is up to us to make up.

After last night’s post, a cry for help, I received a bunch of emails, many from people I never met. All stating how they follow Benny and what they are doing to bring about his Refuah Shlema. Maybe that’s why Benny’s been coughing so much, he’s choked up from all the support. The nurses must wonder, why I’ve been crying all day every time I check my email.  One letter was from a follower, who Googled Refael Yoel Ozer and came across Team Benny. She instantly signed up and put Benny’s name on every Tehillim list in her community. Another stated that, at the Peekskill Dinner this evening, with over 1100 people attending, Tehillim will be said for Benny and Elimelech ben Basya, WOW!!!  I just did the equation, 1100 divided by 60 (minutes) equals 18 (.33) hours.  I will know tomorrow how many hours Benny was short of getting his full dose, but 18 is our magical number, Chai = Life.  We’ll take it.

As Benny was disconnected from all medications this evening, around dusk, I noticed a rainbow outside.  I’ve never seen a rainbow at dusk before.  Although, we don’t point out a rainbow when we see it, it is symbolic from Hashem that he will not destroy us either. IY”H Benny will make Hashem proud and continue to help repair the world to bring back its’ Shleimus (wholeness) entirely for 120 years.

Five days to Matan Torah IY”H. Let’s make each and every day and night count to its’ fullest. Benny gave it his all this week, now it is time for him to get ready; go shopping for a new tie and get his hair done!

 

 

 

 

 

What can we do? I wish I knew!

These past couple of days has been difficult in so many fronts, physically, emotionally and psychologically. While the doctors warned us about the challenges this week could bring, until you actually live through them, it is hard to imagine.

Last night, Benny was closely monitored. He B”H was comfortable and rested peacefully.

Today, the goal was to begin the medications early at a slower rate than yesterday and run them over 20 hours. The first few hours, Benny did great. About 4 1/2 hours into the treatment, Benny began coughing; the same cough that triggered yesterday’s nightmare.  The team was standing by, ready and waiting to respond if G-D Forbid need be.  The nurses have been incredible and extremely supportive, both day and night shift’s. Benny has made quite a name for himself here in the hospital this week. The medication was turned off for several hours and restarted at a lower rate this evening.

This afternoon, the hospital hosted a special event for patients and their mothers in honor of Mother’s Day.  This event was coordinated and sponsored by Drew Barrymore. She came to the hospital with a team of makeup artists, hair stylists and manicurists to pamper us and help us forget about our troubles. All of these artists volunteered their entire day and gave their services to bring joy and laughter to the families here at CHLA.  Thank you Debbie or was it Debra :) an extremely talented makeup artist for disappearing the bags under my eyes and most of all, listening to stories about Benny and Zaida Ben of course! Debbie also had a grandfather who lived a very long time; I think she said 102!  You gave me and other’s a few minutes of fun and relaxation in not such fun place. After the makeup came the hair. That didn’t last long, because Benny had another coughing episode so I went running to back to the room.

It’s now 12:15 (two hours after I began this post); Benny is still up. HELP!!!  He hasn’t slept a wink today. He’s been up since 7, had two temper tantrums, one lasting an hour, several coughing spells and B”H continues to have energy.  Every time I think he’s almost sleeping, he pipes up and asks for something like “tie” or “hat.”  I haven’t been able to remove his shoes yet or take off his second dress shirt.   Benny’s coughing has started up again; the doctor on call has now decided to call it quits on the remainder of medication tonight. The infusion has just been shut off B”H.  The coughing continues. I am calling Ari to come back to the hospital now. I can’t do it alone anymore tonight

I don’t know what to ask anymore. Shavous is coming, there must be something but I am clueless…

 

 

 

 

Faster Than a Speeding Bullet

“Faster than a speeding bullet,” is the only way to describe the change in Benny’s condition today.

Before I update you on Benny, I have wonderful news. Refael Yoel Ozer B”H came home today from rehab. It has been long 3 months, and B”H today he is walking, talking, laughing and is celebrating being home. There is still a long road ahead with multiple surgeries, but B”H, today was the day, his parents, grandparents and all of us davening, hoped for. Please keep Refael Yoel Ozer ben Chaya Malka in your Tefillos until he is fully healed IY”H.

After yesterday’s ordeal with the confusion of Benny’s tubing, Ari spent the night in the hospital so I could get some rest at home. Benny needed some extra medications last night which lasted until 3 am.

Throughout the night and this morning, I was feeling bad for the nurse and I didn’t want her to feel I was upset with her.  I decided to write her a letter and give her a little gift so she wouldn’t feel bad about the mix up. I gave the letter to the nurse, hugged her and told her “it’s ok.”  About an hour later, this nurse returned with a letter for me, thanking me and stating it is about Benny’s care and not her own personal feelings or ego.

Today’s medication was hung on time, beginning at 11 am. Benny was doing really well. He was playing basketball in the room, playing with his “menchies” at a mini Shabbos table while singing zemiros (songs), painted, played hide and seek, read books, ate pizza, drank a frozen latte (thank you Sara) and played with stickers. About 4 1/2 hours after his medication was running, Benny started coughing and coughing and coughing. One side effect of this medication while being administered is that is could cause the airways to constrict. Benny was immediately given a nebulizing treatment to open up the airways. Unfortunately, the treatment wasn’t effective and he continued to cough and cough and cough. He gaged and vomited everything he had eaten. The nurse practitioner on the unit, came immediately and called for additional respiratory help.  Before they had a chance to arrive, she ordered that Benny receive a dose of epinephrine in case Chas Veshalom his body was going into shock.  Immediately after the infusion, instead of his heart rate increasing, it decreased dramatically. His face turned white as a ghost, his arms went limp, his eyes closed and he fell back into my arms. Within a few minutes his skin color turned pink again and he became alert B”H!!!. A few long agonizing, heart stopping, fearful minutes. I was right there by his side, and so were about 20 plus nurses, doctors and everyone in between including the social worker and chaplain (hospital protocol to call them as well). The only thing I was able to do, was say, “Benny, Benny, pat him a few times to wake up, and cry out to Hashem “help!”  B”H, Hashem answered our Tefillos and now Benny is sleeping peacefully. I am quite traumatized from the event.

The infusion was immediately stopped while this coughing occurred and was never restarted.  The doctors are still working on a plan for tomorrow.  The talk is to see if Benny can tolerate the medication given at a slower rate and change it from 10 hours to 20.  The hope is they will be able to give him this medication in its’ entirety IY”H.

It is a double edge sword. On the one hand, this treatment is shown to be highly effective in preventing reoccurrence, but, on the other hand, it is incredibly intense for the body to handle.

We have all come so far in this journey together.  B”H, we are in the home stretch, however, this is still very real and so unpredictable, and unfortunately, the ride today was “faster than a speeding bullet.”

Maybe it was just another wake up call. Shavuos is around the corner; there still is time to get ready. Please help in the preparations to ensure Benny’s safe trip home, in time for Yom Tov (the holidays) IY”H and the Geula Shlema.

Is it “Rare”?

I will start off by reporting that Benny is B”H tolerating the medication pretty well, other than a fever which some Tylenol reduced B”H.

Last night was long. Benny needed a blood transfusion, which only began at 1:15 am and lasted about 3 hours. Then his labs were done around 4 and some other “stuff” around 6:30.

Our goal this morning was to have the antibody infusion begin around 10 am, so that after 10 hours around 8pm, we would be able to shut it off and have a decent night. G-D had other plans. The infusion only began at 1:15 pm and is still running.

The term “rare” doesn’t sit well with me these days. I’ve heard it way too many times this past year and I am not quite sure if the definition for the word holds true.  The word “rare” is defined as an uncommon occurrence. Why is it, that when things go wrong in the hospital, we are told it is “rare?”

Today, we were under the care of an experienced nurse who has been in the field for close to two decades. We happen to have a good relationship with this nurse as well. Today, for whatever reason,( that really no one has a good explanation for), this nurse lacked that expertise.   Connecting and infusing the medications together are quite complicating and requires skill. Basically, there are two channels in which 6 medications can go through.  The nurse is required to know which are compatible with which and not G-D Forbid mix them up or cross the lines.  B”H there was another nurse in the room reviewing all the lines that were connected to Benny and realized that a few of the lines had been incorrectly connected to the right place.  B”H the pump was not turned on at the time and Benny was able to avoid any discomfort and danger. It took over one hour before it was all straightened out. It was a tense hour filled with a great deal of anxiety and lots of prayer that everything turn out safely.

The remainder of the day consisted of different nurses coming in to see if we were OK from the whole ordeal and being told how “rare”it is.  I realize we are human and we make mistakes, however, when my child is the one in jeopardy as a result of human error, I will do all I can to ensure his safety. There was a sense that I was uncomfortable throughout the day, but luckily the nurse had a colleague with her the rest of the day, checking on the work.

We hope and pray tomorrow is an easier day and that we can get the medication up and running first thing tomorrow in a safe and timely manner.

Benny is asking to go home now! It’s so sad.

This morning we took Benny outside for a minute so he can feel the rain fall on his face. The rain in the month of Iyar are known to have healing powers. I hear the downpour outside as I write this post. IY”H let it represent endless Bracha that Hashem is bestowing upon all of us and especially those in need of a complete Refuah Shlema.

Benny tried carrying the Giraffe out of the hospital gift shop.

Cycle 4 Week 2

It’s close to midnight, so I will be brief, as my night is just getting started and I need to nap when I can.

We checked into the hospital around 9:45 this evening after a pretty busy day. There was no one in registration, so we had to wait around 25 minutes. After that process we headed upstairs, but not before a stop in the food court before the elevators. Benny chose his candy for the room as you can see in the video below.

B”H this admission, unlike previous, he was in a jolly mood and quite funny. We B”H got our “eagle” room, facing downtown. I don’t think I will ever view the downtown skyline the same again. I am not sure what emotions it will stir in the future IY”H.

This past Shabbos, Benny enjoyed going to wish Mazal Tov at a Bar Mitzvah (it was the cholent that he really enjoyed), and meeting Rabbi Shlomo Kanievsky from Bnei Brak and receiving a Bracha.

This morning Benny was busy attending a Bris, and B”H was fortunate to receive a heart warming Bracha from the Sandik. The Shabbos before last, Benny also attended a Bris and we were given the Kibud (honor) as K’vater as a Segula for Benny’s Refuah Shlema. I do believe these Brisim brought the Bracha and as a result, Benny was in a wonderful mood this evening and last week as we checked into the hospital. I pray that his disposition remains upbeat throughout the week.

Later this afternoon, Benny enjoyed a game of bowling with his Bubbie, cousin Fruma (who just flew in from NY for a few days to help out, his siblings and parents. Benny even bowled a strike!

It’s now after midnight and the nurse just came in to tell me that Benny will need a blood transfusion tonight. Once the blood comes up from the bank, it will take about 3 hours and then he will be connected to hydration in preparation for immunotherapy. Thank you to the volunteers who donated his/her blood thru Bikur Cholim exclusively for Benny. I am amazed each and every time that Benny has a direct donor. That means, someone took the time out of their busy work schedule, sat in a chair, was pricked by a needle and donated blood. I have to say, I faint at the thought of having to give blood. I’ve gotten better over time with seeing blood, but no movement on the needle front. I think there are just some phobia’s that are not beatable.

The doctor’s anticipate this week to be extremely challenging, the most difficult in the immunotherapy treatment.Thank you for keeping Benny in your hearts, in your Tefillos and Ma’asim Tovim (good deeds). In your Zechus(merit), he should be Zoche to ride thru this week without any side effects IY”H
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Good Shabbos!

It is 1:30 pm. We’re about an hour away from discharge IY”H (G-D willing).  It was a little up in the air an hour ago if we were going home; Benny spiked a fever.  B”H the doctor felt the390 fever was a result from the medication he is currently receiving and will BE”H go away once the medication is complete.  Just in case, Benny was given antibiotics which will cover him for the next 24 hours, and then we will have to see and pray no fever.

Benny is so ready to leave, especially because he knows Shabbos is coming.  He already talked about his bath, shirt and tie and going to Shul (synagogue).  Four Challah rolls were delivered to the room this morning from the hospital chaplain. Benny mumbled a Bracha (blessing) and ate one.

This morning we had an early appointment at the dentist.  Just as we are BE”H (with the help of G-D) close to finishing all treatments (about 5-6 weeks away), Benny will need some dental work.  Unfortunately, the chemo caused his baby teeth to be more susceptible to cavities.  The x rays and fillings will have to be done in the OR under sedation.  The up side is these are baby teeth and IY”H his permanent teeth will not be affected.

After the appointment we went to the playroom.  There we enjoyed learning how to tie dye a shirt. As we were playing in the kitchen area, we were once again surprised with a celebrity visitor. Today’s visitor was from a very sweet and special thirteen-year-old young lady, Bailee Madison. She spent a few hours playing and talking with the patient’s and parents. Before I had a chance to get a picture of her and Benny, Benny took off and headed back to our room. It was so unusual for him to just leave like that. It turned out; he had a fever and wanted to lie down. About an hour later Bailee came to visit him in his room.

I spent a few minutes talking with Bailee’s mom, Patti, praising them for their good deeds and telling them a little of Benny’s history.  She showed a great deal of interest and reiterated during the visit, she will keep Benny and our entire familyin her prayers.    As I stated in previous emails, while I may not be familiar with many of the visitors that visit, I am so appreciative of these individuals taking the time out of their very busy day to visit and put a smile on these children’s faces.

I look forward to the day IY”H, when Benny can just walk  or run down the street and be noticed, simply, for his smile and cuteness.

Look at Benny make a run for it: Video: get out of here

It’s 4:15. Were home B”H. Look at the beautiful welcome waiting for us!

Good Shabbos!

Cappuccino Muffins baked by Avigayil

Olem Chesed Yebaneh!   Thank you Reb. Carol,  Nechama, Shoshie, Sara and Avigayil for enhancing our Shabbos.  This is what the world is built on!

Round 4, Day 4

It has been a very busy few days. B”H Benny is feeling well this week in the hospital.   He has been waking up at the crack of dawn, around 6 am and asking to “walk” right away.  The first thing he does is point to his head, wanting his Kipa, then he says “shoe,” and finally “out.”  That last request is one I haven’t been able to fulfill just yet.

We had a few mishaps this week.  Two days ago, as Benny and I were walking up and down the corridors of the 4th floor, his line became disconnected from the IV pole.  I only noticed it once I saw blood dripping all over the floor as well as the medication he was receiving.  I couldn’t find the clamp, but did manage to bend the tubing to prevent more blood from flowing out and quickly called for a nurse. B”H no harm was done, but the nurses did have to change all the tubing.

Today, a similar episode happened while Benny was in the playroom with his brother and aunt. I was at a school meeting (fun! fun!).  Benny’s line became disconnected again, however, they were not familiar with what to do and as a result everyone got a bit nervous.

After the new tubing was reconnected and the caps were tightened, with extra tape, Benny wanted to go back and play. The nurse said “no!” Then, I said “yes,” and took him.  Benny was totally fine and I went with him. At this point, it is sad to say, that I am a lot calmer when these things happen. It’s sad, because no one should have to get used to something like this. The nurses kept saying that it is not common. I don’t believe it one bit!!! Benny wasn’t even wild.  The weeks Benny doesn’t have to be hooked up to the monitor,  I take him as much as possible to the playroom. The playroom has arts n crafts and loads of toys that he enjoys.  Next week is when Benny will have to be hooked up to numerous monitors and will have to stay in bed. We are not looking forward, to say the least.

Benny had numerous visitors to help pass the time. Thank you, Zaida and Bubbie for the treats; cousin Mindy for the yummy cookies and puppet; Yehudis for the life size Elmo balloon and juggling show; Estie for the bubbles and ball; Aunt Nechama, Auntie Shira, Alti, Caroline, Avigayil, Yocheved and Joey.  We also met some new friends, Landon Donovan who plays for the Los Angeles Galaxy and a seven foot tall man (who really just came to test the smoke detectors). He should have worn a basketball jersey instead!

We are so grateful that Shabbos is less than 20 hours away and IY”H we will be home.

Music Room: In the playroom making Playdough from scratch: Enjoying ice cream

7 ft. Tall Man. LA Galaxy Landon Donovan (soccer player)

Watch Benny Pitch: elmoball

Watch Benny juggle

 

 

Day 1 Round Four of Immunotherapy

Today, we’ve begun the 4th cycle of immunotherapy. BE”H (with the help of G-D) we hope and pray that we are getting close to the end of all treatments.

The day began with a 9 am doctor appointment in the hospital clinic. While we were waiting to be seen, a receptionist approached me in the waiting room to ask me if I was aware that we were going to be admitted into the hospital for “chemotherapy,” after the doctor appointment. My heart skipped multiple beats at that moment. I said, “you must be mistaken, we are in for Immunotherapy, not chemotherapy.” Sure enough, after checking the orders, the paper work said Immunotherapy, B”H!!!  There is a big difference at this stage in the game which treatment Benny is getting. We hope never again to go through Chemotherapy, Chas Veshalom (G-D Forbid) . Soon after, the Dr. reported to us Benny’s test results from last week. The doctor feels that the tests look good B”H, and mentioned Benny will undergo further tests in a couple of months to validate today’s conclusions IY”H. Then, Benny’s labs were done to check his blood levels as well as an exam. Around 11 am Benny was admitted as a patient into the hospital, got a private room with the “eagle” (which isn’t always readily available), had more labs done, EKG test (which he absolutely hated), and waited and waited for the pharmacy to deliver the medication needed to start this round of treatment. I was doing my best to push as many buttons to get the process rolling.  I knew the hour we start today, is the hour we go home on Friday.

While we waited, I took Benny downstairs to the playground so he could get some fresh air and run around. We got a call around 1:40 to come back upstairs, the medication finally arrived.  Benny was connected around 2:20 pm.

Benny is being a great sport, although, he really does not want to be here anymore. He’s had enough. Throughout the day, I tried keeping him entertained, first outside before the medication was ready, then in the playroom. On three separate occasions he had to leave what he was enjoying, either to have his vitals checked or for a diaper change. He put up a huge fight every time.

The day got a whole lot better for Benny and myself, when my family showed up for dinner. We ate, laughed, played and heard about everyone’s day at school. One more disappointment though, was when everyone went home.   B”H Benny is sleeping peacefully now and I pray that it will last until morning.

Please continue to have Binyomin Chaim ben Faigie Sarah in your Tefillos and pray that this week and next fly by without any pain or complications. Thank you!

 

Lag B’Omer

It’s the night before we go back into the hospital. As I was out walking Benny in the stroller this evening, I tried breathing in as much fresh air as possible, as it will won’t be until Friday discharge from the hospital, that we can breathe in the fresh air again.

Sometimes it is hard to know reality versus fiction. The days we are home from the hospital, we try and give Benny the best time possible. It usually consists of running around to museum’s, parks, train rides, ice cream, amusement parks, even whale watching, etc. It’s similar to going on vacation and wanting to see the sights in such a short period of time, there’s no time to relax. Is this period “real” life? or do I consider the long weeks in the hospital reality? We hope and pray that the weeks in the hospital (which B”H are less than a handful remaining), stay at the fiction level. We are so ready to put this chapter behind us and begin a new and healthy reality IY”H. One that won’t require so much running.

Today, we spent the earlier part of Lag B’Omer at the Kid Space Museum. There was a special event today; the releasing of a 1000 butterflies. The kids really enjoyed trying to get the butterflies to land on them or rest on their hands. Benny was enamored by the event, but wasn’t so eager to catch them this time around.

When a butterfly finally did find its resting place on Benny’s hat, it rested there for over 45 minutes. It even went down the slide with him.

I am not sure which room we will be admitted to tomorrow, but if it’s the room with the butterfly motif, I think we will be satisfied (so long as it faces downtown ). The butterfly is a symbol of renewal, of life and freedom, all things we hope and pray for Binyomin Chaim ben Faigie Sarah IY”H.

(Pictures taken by Yehudis Schoen Photography)

thank you!

Video: butterfly Video: slide

Last night we celebrated Lag B’Omer in the comfort of our own home, however, our hearts, minds and Tefillos were in Yerushalayim, Ir Hakodesh. I pray BE”H that this fictitious photo will become our “new” reality very soon IY”H.

 

Omer -How do we Measure?

As Lag BaOmer the 33rd day of the Omer (counting period between Pesach and Shavous – Matan Torah -the receiving of the Torah) approaches, I find myself once again reflecting back to one year ago.

There have been a few occasions thus far that remind me of the one year mark that begun this “new” journey of ours. This past Sunday evening, I attended a school function.  A fundraiser that took place last year, two weeks after Benny was diagnosed. We had to go last year because one of our children was speaking. It was our first public appearance since the diagnosis and I have to say, it was very difficult out get out of the car and face the crowd.  Of course, everyone was very supportive, but deep down, I could hardly breathe.   This past Sunday, brought up last years feelings, however, this year I could breathe B”H.

This coming Sunday, marks another milestone. It was one year ago that Benny was undergoing chemo.  The doctor had told us his hair would fall out.  His golden locks with streaks of orange, his extra long curly eyelashes. which could be seen from afar. My husband suggested that maybe we trim it so it wouldn’t shed all over the place. I refused, I didn’t want to put a scissors to his hair until his Upshern (his third birthday). I hoped that maybe Hashem would allow him to hold on to it. Hashem had other plans. And so it was, the morning of Lag Ba’Omer, I woke up with Benny at my side and his hair all over my pillow. Hashem was the barber that day, the day where thousands of Jews celebrate in Meron to cut their three year old boys hair. The significance of the day, and the fact that Hashem took it because I wasn’t going to give it, was comforting in itself.  I took it as a sign of getting thru the Refuah (healing) process.

This year, IY”H we are celebrating the renewal of Benny’s hair. The sign of his Refuah Shlema that we are so hopeful for IY”H.

Each milestone, feels like a Rosh Hashana & Yom Kippur. How can we measure our own individual growth year to year? The tape measure shows 1 1/2 ” of hair B”H and counting.   We all are faced with personal challenges daily. Some more difficult then others. Many times we are too weak and fall, but at the end of the day or the start of a new one, we make every effort to rise once again. The key and most important thing we can do is work on changing our situation, so that we are not at the same place as a year before.  Some changes can actually be physically measured with a tape measure, such as our skirts, shirts, sheitels etc. But then there are those changes such as adding more Tefillah or an hour of learning in our day, refrain from unnecessary  chatter, a change in Middos (characteristic).

As Benny’s hair and eyelashes grow (which take longer to grow and haven’t reached the curly stage yet), I want to take the opportunity to grow in a spiritual sense.

Being in the world I am in at the moment, I am unfortunately exposed to a lot of pain among other parents. Not a week goes by that I don’t get an email or phone call to please Daven (pray) for his/her child. We are not talking about parent’s with illness (which is painful to live thru), we are talking about young babies with some life threatening condition.

I am not a righteous person, however, it doesn’t take a holy individual to see what is going on in the world. Just as the world at large, especially the U.S. changed after 9/11 with so many more law enforcement codes in place, and the TSA changes causing long lines and no shoes thru security, no one fought the system. It was put in place to protect us.

Today, my friends, my family, we need to protect ourselves, we need to protect our children, our grandchildren and generations to come. There are more childhood illnesses out there then ever before. We must put in place a TSA system to help in protecting our precious loved ones. I am not an engineer to know what those systems should be, I’ll save that for the experts, but I will be an active participant and supporter of it going into place.

Thursday evening:

This morning I received a beautiful email written by Rabbi Biggs, titled Emor- Making it Count.  He so eloquently wrote:

“this Shabbos we read in Parshas Emor the Mitzvah of Counting the Omer. On the second day of Passover, a special barley offering was brought in the Temple, the Korban Haomer. This was the celebration of the first new grain crop of the year, and none of the new harvest was allowed to be eaten until the Korban Haomer was brought. The word Omer is a measurement of grain.

The Midrash teaches that we received the Mitzvah of counting the Omer as a reward for our anxiousness to receive the Torah. When the Jewish people left Egypt, they were so imbued with anticipation that they counted the days until the Torah was given. In merit of their counting, we were given the Mitzvah of Sefirat Haomer. This teaches us that our feeling of joy towards a Mitzvah should be so great that we should be anxious to fulfill it. 

The Mitzvah of Sefirat Haomer has a deep message. The Mitzvah consists of counting days. The Torah teaches us that we must make every day count. Every single day we should reach a level higher and bring the world a step closer to perfection. This is also hinted in the manner in which we count. Rather than counting “this is the thirty-fourth day,” we count “this is thirty four days.” This teaches us that each day we have the accomplishments of the previous days combined with the new heights of today. The word Sefirah has another meaning, which is illumination. By counting the days as we should, we bring illumination into every aspect of the world.

We also count the weeks and their relation to the days. This teaches us that every day stands not only for itself, but as part of a wider scheme. This concept of interconnection teaches us the importance of teamwork and harmony.

  When the Torah describes the counting of the Omer, there is an apparent contradiction. The Torah says count seven weeks and also says to count fifty days. In fact, we count forty-nine days and celebrate the fiftieth day as Shavuot. Chassidic teachings explain that there are fifty gates of wisdom, forty-nine of which can be attained through human effort. Through attaining the heights that we can reach through counting forty-nine days, Hashem grants us the fiftieth gate. Since this is connected with our efforts, it is as though we counted and illuminated all fifty gates. The era of Moshiach parallels the fiftieth gate. The revelation will be completely beyond anything we can aspire to through our service of Hashem. Nevertheless, when we do our part, Hashem will do His.

Although the days between Pesach and Shavuot are generally days of mourning, Lag Ba’omer is a day of celebration. The celebration is connected with the passing of Rabbi Shimon Bar Yochai, the author of the Zohar. This has a connection with the Hebrew Lag, which has the same letters as the word Gal, which means uncover. One of the verses that refer to the teachings of the Zohar is “Uncover (gal) my eyes and allow me to see the wonders of Your Torah.” Although the passing of a great Tzaddik is generally a day of sadness, Rabbi Shimon Bar Yochai commanded that the day of his passing be a celebration, and referred to it as a Hillula, which means a wedding. The celebration is so great that the Ari Zal, a great Kabbalist in the 15th century, wrote that a student of his used to say special prayers of mourning for the Temple every day, including holidays. When Lag Ba’omer came, Rabbi Shimon came to him in a dream and warned him not to interfere with the joy of Lag Ba’omer with prayers of mourning.

 Attending gatherings in honor and in celebration of Lag Ba’omer is a tremendous source of blessings. At his resting place in Meron, Israel there is a massive celebration. 

  The reason for the joy is because on the day of his passing he reached the pinnacle of his divine knowledge and was granted the ability to transmit his knowledge to his students, thereby eventually allowing the entire Jewish people to have greater depth in the mystical aspect of the Torah. Because the teaching of Kaballah fully permeated his being, he perceived everything through the eyes of Kaballah and only saw the inner meaning. As such, in his passing he saw only the culmination of his life’s work.

  In Tanya it is explained that when we seek the good that is hidden in apparent negativity, the negative appearance ceases to exist and only the good remains. This is also a precursor to the times of Moshiach, when the knowledge of Hashem will fill the world as water fills the ocean bed.

  The Talmud says that we can rely on Rabbi Shimon Bar Yochai in troubled times. May the merit Rabbi Shimon Bar Yochai protect the Jewish people in these difficult times and may we speedily merit the coming of Moshiach when we will see the good behind all of our tribulations in exile.”

For those of you who were able to read thru it all, hopefully you will feel empowered and feel the joy this coming Sunday when we celebrate Lag Ba’Omer and hopefully the Geulla Shlema.

 

 

Change the Mindset

B”H Benny got thru today’s scans without too much fanfare. The difficulty came when we could no longer give him clear liquid’s to drink before anesthesia. Being that our appointment began at 9:30, scan at 10:3O-12:30, Benny was pretty hungry when he woke up.

Once he finished the scan he was brought into a recovery room. It took a few minutes for the anesthesia to wear off. As we sat with Benny and held him until he was able to calm down, Dr. Wrightman (right man!) walked into the room. He was one of the first doctors on call the week Benny was first admitted into the hospital. He was there one year ago when Benny had come out of anesthesia from his biopsy. There was a great deal of turmoil at the time trying to get Benny’s siblings up to see him. Dr. Wrightman was there, winked his eye and said “don’t worry about it.”  He managed to get all of them up to see Benny.

Dr. Wrightman a fellow at the time, has since changed his specialty of medicine and his no longer practicing in oncology. He is specializing in Neonatal Intensive Care blood disorders.   Seeing him today in the recovery room and having a nice “shmooze” gave us the feeling that once again, everything was going to be OK, IY”H. He also mentions how he some times see’s us walking to shul as he’s passing by on his way home from the hospital. He promised us today he will come for a Shabbos meal. We hope soon!

We were not able to get the results from the scans today, because our meeting with the doctor got cancelled. The doctor is home sick with her sick children too. We wish her and her kids a speedy recovery.

IY”H we are hopeful that all will be good and are B”H able to put it in the back of our minds.   The fact that it is Lag Ba”Omer this Sunday and so many people we know are going to Meron to pray for Benny, it is reassuring that we have more time to pray for a successful outcome.   This is the day to reach a tremendous spiritual joy in which good, will ultimately be clearly visible even in the worst and most challenging of times.

After the test was complete, Ari went back to work and I took Benny out to the Peterson Car Museum. My goal was to change Benny’s mindset and help him forget about the morning scans (as my Zaida Ben Z”TL would say).  He had a wonderful time pretending to race real racing cars, as well as playing with Hot Wheels. He did have a hard time staying behind the rope that courted off the cars.  Every time he sneaked under the rope, the guards came running. I felt like telling them what Benny had just endured this morning, but managed to contain myself. I guess they don’t like having to Windex hand prints all day long.

I was glad to give him a fun filled afternoon and block out all of the morning activities which weren’t fun at all!

Video: Benny racing hotwheels

One Word…IMPROVE!

Today, we had to go into CHLA for a quick appointment, about an hour. It’s a “preop” for the scans tomorrow IY”H. As we were leaving the hospital and waiting at valet for our car, Benny asked “where’s Juan?”  He’s the guy at valet who’s always filled with such enthusiasm when he see’s Benny.  It was the first time Benny said his name. So cute!  It made Juan’s day.

Tomorrow, is a big day IY”H.  Benny will be undergoing a full set of scans which take about 2 hours. He will have to remain completely still for machine to capture it’s imaging. The doctor felt it will be best for Benny to be put under sedation during this time. We happen to  agree, even though we’ve had it with NPO (nothing by mouth) from the night before and anesthesia.  Hopefully, IY”H we are really close to the end of Benny having to go thru this anymore.

Please have extra Kavana in your Tefillos tomorrow, or offer a “penny for Benny.”  We NEED Hashem to bless Benny with a clean set of scans and a complete Refuah Shlema.

We won’t know results until early next week, probably around the same time when we go back into the hospital for additional treatments.

Please Daven for Elimelech Ben Basya who is undergoing round 6 of chemo and is still quite weak from surgery a couple weeks ago. Mazal Tov to Elimelech’s aunt Rikki who became a Kallah (got engaged) last night. May you and your family only be busy with Simchos IY”H.

Please Daven for Refael Yoel Ozer Ben Chaya Malka. B”H he is making progress. He had surgery last Friday on his skull, and B”H had his breathing apparatus removed. He will need multiple surgeries going forward on his skull and eye, but IY”H with all our Tefillos and Chasadim, he will have a complete Refuah Shlema.

There unfortunately, has been one new name added to my Tefillah list this week. Chana Tova bas Esther Shoshana. A one year old little girl diagnosed with a rare children’s cancer.

This news must end. We are all doing so much already, what else can be done? I wish I had the answer. The only thing I can suggest is one word, IMPROVE….IMPROVE…IMPROVE, in whatever can be.  Just as the scientist and doctors are doing their best to IMPROVE, we must do the same.

IY”H may we be Zoche to only hear good news going forward.

 

 

Too much to do in so little time

It’s been too long since I’ve had a chance to update. Not for lack of trying. I am not sure when times are more exhausting, being at the hospital all day and night for a week at a time, or trying to get caught up on life when we aren’t in the hospital. This past week I would say it’s the later.

Ever since I took Benny to the trains and horses, he’s been asking to go back. However, I did have other mundane chores to do, which he was not in favor of and would protest at each one. One protest resulted of him pulling off the dressing (bandage) which covers his central line.  This must be covered at all times to prevent infection and is changed once a week under sterile conditions. I was driving at the time and had to make sure he didn’t touch the exposed site. Once I arrived home, I had my first shot at changing his dressing. Ari had been doing this medical duty weekly, but last week was my turn. B”H I managed just fine and accomplished what needed to be done.

Benny has been growing B”H in all areas; verbally, physically, his hair and his personality.  The past few days he’s been doing a good job of testing “his limits,” and reaching mine. Maybe that’s the reason why I’ve been so tired.

The weeks we are at home, I like to take Benny on field trips and invite company for Shabbos. Benny is usually involved in all the preparations which include, shopping for groceries, cooking and baking, setting the table etc. This involvement generally slows the process down to more than double the amount of time. I really hope his wife (IY”H one day) will appreciate his training from a very young age.

“Do you know the muffin man?”

This past Friday, I didn’t have time to post, because I spent too much time in the kitchen, to the point where some things got overdone or burnt. Then, Motzei Shabbos I was too tired from all the company. Last night, I had a  school function and when I came home, I spent one hour looking for my engagement ring. As I was moving Benny out of my bed into his crib, which is on rare occasion, I spotted the ring under the covers B”H.

I know it’s common to misplace things, glasses, pens, wallet, keys etc., it’s very frustrating at times. Feels like a complete waste of time looking for it. Last night, as tired as I was, I wanted to post, but ended up looking for my ring. The truth is, I believe I misplaced the ring when I was putting on gloves, to once again change Benny’s dressing after it got wet from dipping his feet in the pool and playing with the water.   My mind was preoccupied on something else, so I didn’t remember to put the ring back on, and by the time I did, I couldn’t remember where I misplaced it.

This past Shabbos, the 11th day of Iyar, was my Bubbie  (wife of Zaida Ben) 19th Yartzheit. Bubbie Jean, as she was well known, was one of the strongest woman I have ever known. I learned so much from her. How to host guests, to make sure they have all their needs and never want to leave, how to raise money or get volunteers for a worthy cause, how to sew, how to make Rice Krispy treats, how to play cards (she was a champ at War), how to grow a garden and make jam from the homegrown berries, or sautéed squash from the homegrown zucchini. She knew the names of all flowers, and most of all, she knew everything going on in the family. She kept the family informed about one another. Her home was immaculate, yet, was always filled with guests (mostly strangers) and grandchildren. She allowed us to go thru her boxes of old clothes and put on parades and performances. She spent hours on Shabbos playing Rummy Kub with us and Boogle on Motzei Shabbos.  When coming to visit my Bubbie, the first thing I would do is, open the freezer to look for her famous chocolate chip cookies and Rice Krispy treats. It was a debate which one to eat first.  One thing she could never teach me is how to kill a spider. Bubbie was fearless. Especially, the time when she scared off a prowler in her home in the middle of the night, just by shouting at him to get out of here! Boy did he run!

Bubbie Jean ZT”L 

Bubbie Jean was a true Eishes Chayil (woman of valor) in every sense of the word. She adored Zaida Ben and together they both had the qualities to build a beautiful family and an entire community in Seattle, close to 60 years.   As my cousin Pircha wrote, so eloquently in an email I received earlier today describing Bubby, she spoke of what her beloved father Yehoshua Abermoff O”H (the only son in law) used to say, “Ayalah (his wife), you are amazing, but your mother – she is L’mala min Hateva.” I think the key to Bubbie’s success as a wife, a mother, a grandmother, a friend was her listening ability. She knew when to remain quiet and when and give advice. She was everyone’s best friend, and of course we each were her “favorite.”

I look forward to Benny IYH one day, choosing his Aishes Chayil (woman of valor) to be just like my grandmother (ok so she doesn’t have to kill spiders or grow tomatoes).

Yesterday afternoon, Benny had a wonderful day with his Bubbie and Zaida “swimming” in their pool.  True Benny can’t go swimming yet, because of his central lines, Zaida made sure to hold his body high enough out of the water to avoid getting it wet, yet made sure Benny felt like he was in the pool, at least kicking with his feet.  I can’t wait until he can splash and splash and feel the water up to his shoulders.  I am so grateful that Benny is able to build a close relationship with his Zaida and Bubbie and IY”H he too will learn the valuable lessons of life. B”H Benny got a good start in life learning from his wonderful Babbie in NY before we moved out the LA. . IY”H may he continue to be blessed and learn from his grandparents for 120 years.

Today, I wasn’t able to venture out to the trains, but did take Benny on the trolley at the Grove (an outdoor shopping mall). While riding the trolley he made a friend, Isaac and right away hit it off. The two of them conversed about “life” of a two and three year old. Life was good at the moment B”H.   Benny learns quick too. Tonight, I took him for a walk to pick up a few apples at the grocery and when the cashier asked Benny how old he was, he quickly responded three (just like Isaac). I tried correcting Benny and said two, but he insisted three. He goes around saying he’s a “big boy.”  It’s so cute to hear.

watch video of Benny on the trolley

This coming Wednesday, we go into the hospital for an injection thru his central line as a precursor for scans on Thursday. This will be done outpatient. We can only hope and continue to pray that this disease is gone, gone, gone and never to return.

Last week we had the privilege of some very special visitors, from near and far.

Rabbi Shmuel Dishon, a world renown Rabbi/speaker and our first cousin too came to give Benny a Bracha and tell Benny stories of his great grandfather.

Video of a Bracha from  rabbidishon

Penny for Benny – The day after I posted a Penny for Benny, I was fortunate to find a penny on the sidewalk while out on a walk. Normally, I wouldn’t have picked it up, but this time I did, and look who put it in the Tzedaka Box while singing Tzedaka, tzedaka Tazil Me Ma’ves… (charity saves from death).

 

 

The Moment

As I sat down to post last night, I got side tracked. As I was deleting old emails to free up memory on my computer, I fell upon last years email correspondence relating to the first initial doctor’s appointments with Benny.  Tomorrow, IY”H will be the one year mark that Benny had his biopsy and first admission into the hospital. It was an Erev Shabbos. Needless to say, I was overcome with emotion and couldn’t post.  I’ll IY”H write about those posts over the next few days.

The past two days, Benny enjoyed outdoors in the cool, but sunny weather.  Yesterday, he helped decide where to plant flowers and even dug a few holes in the dirt. Of course once his fingers got dirty he stopped.

This morning began on a walk to Coffee Bean with his Zaida for a caramel ice blend and muffin.  After a nap, we enjoyed the afternoon at Griffith Park. It has been a while since I took Benny on the train. He was so excited!  After the train ride, we went to ride the horses. There were five horses attached to poles that walked around and around in a circle.  Benny had his heart set on this one pony called, “Champ.” Benny waited an extra 10 minutes until Champ was available to ride. I’m not sure who should have been called Champ, as Benny rode like a pro. Maybe he was so comfortable because of all the “Sus” stories I told him that Zaida Ben O”H told us as children and adults.

After Benny graduated from the baby ponies, he moved to the more advanced riders. He rode and rode and didn’t want to get off. We had gone to the ponies about 4 or 5 months ago, but he was too afraid to ride. This time was very different. He was not afraid and when he was asked to remove his hat, so the horses wouldn’t be frightened in case it fell off, he had hair on his head. He looked and felt like all the other children his age. It was one of those moments that I have been waiting for so long. The moment when no one would ever know what he has gone thru just by looking at him.

We all have those moments in life that stand out. When you know exactly where you were standing, or doing, when something very significant happened.  Unfortunately, many of those moments that make a lasting impact are tragic, such as 911 or the first discovery of an illness.  But, there are those moments that are beautiful too. The moment you knew, you were going to marry your spouse; your first born child, you won the grand raffle… These moments are mostly an individual experience.  What happened this week in Boston, or 911 are moments shared with the world and ones that will never be forgotten.  We celebrated the 65th Yom Ha’atzmaot yesterday, a moment as a Nation that we will never forget.

I so look forward to those individual moments when Benny IY”H reaches those mile stones and the universal moment IY”H,  when we all hear the sound of  the Shofar blow very soon.

Lately, Benny has been wanting to change his clothes several times a day. Either because he may get a stain or wet or just because. Because he wants to dress up in another dress shirt and pants. I think if he owned a tuxedo, he would wear it all day and probably to bed as well. He is also particular about wearing his socks and shoes too. However, it doesn’t stop there, he wants me to wear shoes around the house too, and no slippers. If he’s like this at two, can you imagine when he’s a teenager IY”H.  I can’t wait. His wife IY”H, may just have to settle on the smaller closet!

Watch the Video of Benny playing Duck Duck Goose with Zaida :duck duck goose

Benny riding the train – notice how he rides like a professional roller coaster rider:choochoo

video riding horse: ridencowboy

Video: Benny riding Sus: sus!

Video: Benny gardening: planting

 

 

 

 

 

No Pain no Gain

Tonight, was the first time I observed and partook in a certain type of exercise class. Like all exercise classes, the instructor pushes you beyond your limits. At first you are determined to complete the exercise, then as the repetition continues, you slow down and eventually stop in the middle. The pause button usually doesn’t last for long, if you have a good instructor in the room. Her/his words of encouragement and belief that you could do it, cause the successful outcome. I’m not saying there is no resistance and maybe some kicking and screaming along the way, but as the saying goes, “no pain, no gain.”

After today’s, devastating news in Boston and tragic news of a young girl in Florida who lost her life in a car accident while skateboarding, I thought to myself what can we do? How can we put an end all the tragedy?  We are all doing so much already!!!  There must be something!  True we are all doing wonderful Mitzvos, Davening giving Tzedaka, but are we doing them with the same determination, the same strength and vigor as we would use to run a marathon. For those of us who aren’t marathon runners, most of us have taken challenging exercise class or played a competitive game to win and have experienced the pain to achieve the gain.

Suppose we use that same drive in the Mitzvos we perform, the prayers we recite, in the Tzedaka that we give. Continue doing the same wonderful deeds that we do day after day, but turn on the turbo engine and give it everything we’ve got and MORE!!! The reward is so much greater too!

I look at Benny and admire him more and more each day. He’s only two Kein Ayin Hora, he should IY”H live to 120, but the amount of Koach (strength) he puts forth, the love he portrays, and the zest for life he demonstrates, through everything he’s been through, is a living example we all can too!

This morning, I took Benny for a follow up check up at the hospital. The appointment lasted a long three hours. Mostly because we had to wait for lab results, to find out his blood levels etc.  While we waited, Benny entertained the nurses wheeling his suitcase of toys up and down the hallways. He also tried to make “small talk” with other little patients in the waiting area. The part I disliked the most was when he had to get a shot. He doesn’t like it much either, but unlike me who can’t stand up for at least 30 minutes after a shot, he forgets about it a minute later and is back to his cheerful self. My Zaida Ben (ZT”L) always used to say, if a child gets hurt, “change their mindset, he’ll feel better right away.”  That is how Benny conducts himself. Maybe Benny knows deep down, “no pain, no gain.” It’s extra ordinary to watch and amazing to learn from.

 

 

 

 

 

 

 

No Jealousy Today!

Today, was a day for special mother’s. No it is no Mother’s Day.  Today, Chai Life Line in Los Angeles hosted a relaxing and pampering day at the spa for over 45 mothers.  Not just any mother, a mother who spends who days and nights caring for her child or children, with needs greater than we could imagine.

After a relaxing spa treatment and a delicious lunch, I joined a yoga class. I’ve been wanting to stretch for about a year now, and today was going to be the day to get started.

Before the class begun, the instructor had us go around the room to introduce ourselves and give a brief diagnosis of what our child is or has gone thru. I will tell you, there was not one parent in the room jealous of the next.  There was not one parent that would want to switch places with the next.  As the yoga instructor conducted her lesson, “breathe in, breathe out,” tears streamed down my cheeks. I just thought to myself, how many cisterns must have been filled from all the tears these special mothers shed.

One song I find most meaningful and listen to over and over again is, “Mama Rochel cry for us again won’t you shed a tear for your dear children… “Our Mother Rochel, is not far away, in fact today, I was in the presence of 45 very holy, courageous and special “Mama’s,” who cry for their children, our children and your children every day.  In the Zechus (merit) of all the toil, all the love, and all the patience these women invest in “our” children, Hashem should bring the Redemption and the complete Refuah Shlema for all those in need.

B”H, I am happy to report that Benny is thrilled to be home with his family. He sang all Shabbos, went to Shul wearing Zaida’s tie (a bit on the long side) and enjoyed so many tasty treats that friends baked.  As I strolled Benny to Shul, he was the first to say “Good Shabbos,” to anyone we passed along the way (just like my Zaida Ben O”H did).  We were even fortunate enough to meet and get a Bracha from Rav Kutler (of Lakewood BMG) while walking home from Shul.

 

Pictures of the Week

 

Clippers Jersey presented by Dr. Michael Levi, signed “To Benny”  by Chris Paul & Blake Griffin (thank you!)

Mealtime (cereal & pizza with Shmuel Tuvia)

Benny sleeping soundly – “no room for me!”

 Benny canfinally reach the exit button. Hooray! Were outta here!

  It looks, smells and feels like a party!!! Thanks for your warm welcome home.

“A Penny for Benny”

Today, I received a heart warming email, from the mother of a special Team Benny supporter. This team mate is all of 2 years old. He has a special Tzedeka box set aside and every day he says,    ” a Penny for Benny,” when he give Tzedeka as a merit for Benny’s complete Refuah Shlema.  A two year old…WOW!

A penny, what is a penny worth today? Let me tell you. This week I realized the worth of a penny. That penny, the one that was so special each and every day to that two year old Aryeh, made the difference in Benny’s overall treatment this week. B”H we are thrilled to report Benny did not have fever nor any frightening side effects this week. The most difficult part was keeping Benny entertained for a good 13 hours straight and dealing with a couple fits to get out of the room.

It’s similar to a small drop of water that drips on the same spot of a rock, day after day, week after week, until eventually, there is a break thru in the rock. It takes more drips than you can count, but each drip counts and eventually, it penetrates.

I no longer will think it’s not worth to bend down and pick up a penny on the street. “A Penny for Benny,” how could I pass it up. That could be the penny in the Pushka (charity box) that can make the difference if a Choleh (an ill person) will have an easy day or a more difficult one.

The penny represents so much more than one piece of copper. One Tefillah (prayer), one Bracha (blessing) of Asher Yatzar, one Kabala, one incident of not speaking Lashon Hora and the list goes on, all being done as a Zechus, is priceless!  Sometimes we get a glimpse every so often of the real value. This week, as Benny spends his last night in the hospital of cycle 3, the infusions were literally just disconnected, the IV pole was wheeled out of the room, B”H (Thank G-D), and no fevers, we learned the value of one. and one plus one plus one and…

 

Restoring the Faith in Humanity

Last Wednesday, the day after Pesach, the kids were still off from school, so I took them all to a park about an hour away. It was a magical day and one we will all remember for a life time.

The magic temporary faded later that evening when we got home. My diaper bag containing my wallet (license, credit cards and some cash) was left at the park. It was too dark  and too far to go back that night.

Early, Thursday morning, I called two police departments in the vicinity to see if anyone turned it in. I struck out twice. So the only place left was to look in the park. Before I got in the car, I pledged money to Rav Meir Bal Hanes and said the famous Posuk for lost objects. Then, I drove all the way back with Benny to search the play ground and open fields. Benny was thrilled when we arrived. I however, struck out again. No diaper bag!

The only hope I had at that point was that no one used my credit cards. About 45 minutes after I arrived at the park, I told Ari to schedule an appointment online for me at the DMV for a new license. Shortly after, I received a call from American Express. My heart skipped a beat as the operator spoke. The first words were unclear, but then she said “turned into police department.”  I couldn’t believe my ears. She gave me the number of the police department (the one I had spoken to two hours prior) and I immediately called.

The police reported to me that a fellow visiting from out of state had just dropped off my bag with everything inside. Not one dime was missing. The only thing thrown out was some food, as the gentleman was worried about food spoiling.  Unfortunately, he did not leave his name. I would however, like to honor him and publicly thank him, whoever he may be.

The police department was more than 5 miles from the park. This tourist took the time from his vacation, drove quite a distance, all for a stranger.   WOW!

Living in the hospital a good portion of this past year, I have been privileged to see the beauty of mankind. Although, these individuals have chosen this as a career and are being compensated, it is an extraordinary responsibility to care for these individuals both medically and emotionally.

Last week in the park, I was once again privileged to witness the beauty of mankind, but on a higher level. This act of Hashavos Aveida (returning a lost object) was solely for the purpose of doing a good deed. This man did not receive a reward (he didn’t leave his name), but he did restore the faith in humanity, and I am sure has a nice reward waiting for him in the World to Come.

Most of us are not in the medical field, but all of us can play on a grass field. Grab the next opportunity to get involved in rebuilding and restoring the faith in humanity. It can and will save lives!

B”H Benny continues to sail through this week without fever. Today,  however, he did have a tantrum like I’ve never seen. He wanted out and carried on kicking and screaming for over 3 hours. I do think his stomach may have bothered him as well from all the medications he’s been receiving. Thank you Rifka Basya, Tamar, Alti, Shmuel Tuvia, Yehoshua, Randi and Dr. friend and of course Zaida for visiting and cheering Benny up today.

One more day to go for this round IY”H.  Please Daven it goes smoothly and quickly.

It’s Hard to Believe

Benny is a few minutes away from completing his second day of a very long treatment. We are grateful that so far,B”H, he has been handling this round of treatment quite well. Other than a few rashes, he does not have fever Bli Ayin Horah, and for the most part, is in a great mood.

Benny had a few special visitors today; “Aunt” Shoshie played games, cousin Yechiel fed him ice cream, sister’s Yocheved and Rifka Basya cheered him up, friend Yaeli brought doughnuts and Bubbie and Zaida came to kiss him goodnight with chocolate chip cookies.

As I lay here with Benny, as he sleeps peacefully next to me, I can’t help but wonder, is this really the plan G-D had for him at the age of 2?!  He is hooked up to so many tubes, all for the purpose of helping him. I know these tubes aren’t filled with broccoli or cauliflower puree either!  It’s hard to believe these medications are good for him. When my mind begins to stray, I stop myself and say, “no Faigie, just imagine, these drips are filled with Mtizvos and Tefillos that were liquefied.” Sometimes,  It’s really the only way to make it thru the day.

Just about every time I ride the elevators in the hospital, either going up to the room or down to the ground level, I look around at the other riders, mostly parents and some doctors. Everyone wearing a different badge with a different floor marked on the badge. One floor of the hospital cares for cardiac patients, while another is the PICU (intensive care unit), and the list goes on. Again, I find myself engrossed in a conversation with myself, asking, “if I had a choice, which floor would I pick to get off at?” And then, the elevator stalls, giving me a second to decide. A second isn’t enough time and before I know it, the elevator doors on the forth floor open. Next stop, Oncology!  I am left with one choice and one choice only, to choose the One who knows best.  Hashem (G-D) knows, so Hashem chooses… and here we are!

True, we cannot always choose the floor, but we can choose how to walk the floor. We chose not to walk it alone. Thank you for wanting to pace the corridors with us and ensuring our safety throughout our stay.

picture taken at LegoLand Chol Hamoed Pesach

“I’d rather be playing ball today!”

It doesn’t seem to get any easier…

Sunday evening 12:20 am.

It’s not easy sitting here once again on the 4th floor of the hospital and missing my children at home.  I wish more than anything it was Friday and this week was in the past.

B”H we had an amazing 3 weeks off. Yom Tov was beautiful and Benny loved spending time with his cousins. He was one of the gang in every way. In a way, that is what makes tonight so much more difficult. It makes us yearn “normalcy” so much more. It’s what breaks our heart when we have to say good bye to our other children for the week.

This week we are in for round 3 of immune o therapy. This will be similar to the first round. Although, we can expect high fevers from this treatment, we can still be hopeful that they don’t reach as high as before. We pray that Benny is not in any discomfort this week.

Benny is definitely more aware of his surroundings this time around. He is asking questions that he never did before. Most of them begin with “why?”

On a positive note, we were assigned our favorite room in the hospital. As most of you know by now, the room with the eagle above Benny’s bed and the view of the Los Angeles downtown skyline. The doctor on call tonight is Eytan. He wished Benny “lila tov”( good night) and so far B”H he is sleeping comfortably.  I do believe all these small gestures, are Hashem’s way of telling us it’s going to be alright. We just need to recognize and smell the  B’samim as Hashem sends it our way.

This morning, Benny had a special visitor, cousin Joannie from NJ. Thank you for the special toys and reading the book too. Your teaching skills have not worn off one bit! Please come again soon.

Later this afternoon, we went to a fabulous park in Ranco Palos Verdes with Benny’s siblings, grandparents and cousins. He had a wonderful time on the swings, slides, sand and playing catch.  After the park, we went to the ocean to see if we could get a glimpse of the whales migrating north (traveling from Mexico). We had just missed a Gray whale and its baby by an  hour, but we were able to see many Fin whales blow water.  I told Benny that IY”H if he does well during treatment this week, I’ll take him back to see more whales and dolphins next week.  Hopefully, they will be happy to see Benny and put on a show for him!!!

Click on video to watch Benny in the park : bennypitcher and pitcher2

Since we can’t listen to music at this time, let us instead turn up the volume in Tefillos. Elimelech Ben Basya and his parents want to go home. Refael Yoel Ozer Ben Chaya Malka wants to go home and Binyomin Chaim Ben Faigie Sarah wants to go home. We need your help in helping in this incredible Mitzvah and are grateful for your support.

Jump In

Just as I was sitting down to update the blog on Erev Yom Tov (this past Sunday) , titled “Jump In,” G-D had other plans.  This past Sunday night was 3324 that Nachshon Ben Aminodov “jumped” into the Yam Suf and soon after Hashem split the sea.

There are so many opportunities we are given on a daily basis to just, “jump in!”  I’m not referring to the swimming pool completely dressed either.  How about the times when we get an email to Daven for someone, do we stop what we are doing right then and say Tehillim?  What about being the first to raise our hand to volunteer? Do a chore around the house? Jump in to stop a conversation from getting out of hand? Be the first to jump in to stop Machlokes (confrontation)?

Although, the first initial leap is at times risky or uncomfortable and definitely takes a lot of courage, you will notice that you won’t be alone for very long. These leaps are usually quite contagious and before you know it, you will feel natural about the whole experience.

This past Sunday, as I was writing this post, my son took that jump. It was a jump in the game of “Horse” (a basketball game) that landed us in the ER, Erev Yom Tov getting stitches right below his eye brow. B”H Yehoshua was brave and made things less traumatic for his Mommy who really dislikes stitches. Of course this is not the “jump” I am referring too, but it definitely will act as a reminder of how and when we should take that leap of faith.

We were fortunate as well with the help of Hatzolah and  Bikur Cholim to make it home within the 18 minutes of Shkia (sunset).  It was a strange feeling being in the ER again on that day, dealing with a near the eye injury. My husband told me not to think to much into it. We have boys B”H and these are the “normal” events that come along in raising them.  It has been five days since this took place, and B”H the stitches are beginning to dissolve.

We will be heading into the hospital this coming Sunday thru Friday for another round of immune therapy treatment.  IY”H with your continuous outpour of Tefillos, and G’milos Chasadim and all those “jumps,” Benny will not feel pain and be only Zoche to a complete Refuah Shlema Min Hashomayim.

IY”H this Shabbos morning, Elimelech Ben Basya will be having surgery to remove any residual tumor that may be left. Please have him in mind in your Tefillos and as you light your Shabbos candles.

Good Shabbos!

I will IY”H update the web with pictures of how Benny celebrated his Pesach. B”H he had a wonderful time.

ONE YEAR ANNIVERSARY!

“Our 1 year Anniversary”

I’m not quite sure how to coin the one year mark. Anniversary’s are usually celebrating a happy occasion. I never thought about, until today, as I was reminiscing this past year’s events with Ari, what is was like for the Bnei Yisroel to celebrate their very first Pesach after Yitzias Mitzrayim.  We always talk about the actual Geula, but never talk about what it must have been like for them ONE YEAR LATER.  What was it like for them to celebrate 12 months later after they went from the lowest level to the highest with miracles beyond human comprehension.

Last night at 1:04 am was our one year mark that we saw the first indication that something may be wrong.  Last night, and throughout the day today, we replayed minute by minute, hour by hour, day by day, treatment by treatment, tear by tear,  this past year.

“Remember when?” or “Where were you?” when this and this took place.  For those of us old enough to remember 911, I remember like it was yesterday, where I was and what I was doing when it happened. It was hours and days of fear of not knowing what will be.

This Pesach my family relived “Seapur Yitzias Mitzrayim” (the story of the Redemption from Egypt) in a way like no other. We remembered the time, where we were, and what we did when Benny woke up with a bump on the side of his temple. To think an entire year has gone by, has been completed, is beyond comprehension. It has been a  year full of Macos (plagues), a year full of incredible Nissim (miracles), a year full of incredible “gifts” – all the “merits” done on Binyomin Chaim ben Faigie Sarah’s behalf, a year full of new friendships to deep to put into words,  a year of emotions I never knew existed, and a year of “appreciation” for everything and I mean everything, that Hashem has blessed us with in our lives up until this point and IY”H for years to come 120.

We now begin the counting process, the Sefiras Haomer. A time to slowly transition from the lowest level of Tuma to the greatest spiritual level man can reach.  This past year, Benny has experienced one of the harshest cleansing treatments known to mankind. Now, B”H as we enter into this final phase of treatment, immuno therapy, we begin the rebuilding process. We begin to lay the foundation for Benny to grow and live a long and healthy life, full of Bracha for 120 years.  Although, this treatment is difficult and at times painful, he continues to put his best foot forward, literally, by insisting on wearing his Shabbos shirts everyday and his dress pants, along with his Yalmuka 24/7.

Six weeks away, we will celebrate IY”H  Shavous (the receiving of the Torah). This will be close to the end of Benny’s treatments B”H. Please join us along the next leg of our journey to help ease his pain. Let us help Refael Yoel Ozer ben Chaya Malka heal so he can go home IY”H. Let us help Elimelech ben Basya get thru his surgery after Pesach IY”H, followed by difficult treatments ahead.

There are 48 ways to achieve our greatest potential, to come to understand ourselves, and to reach our goals. This of course can only be done on an individual level – each one of us was created for a reason. We can find that reason without illness. The 48 Ways to Wisdom by Rav Noach Weinberg ZT”L is a program designed to find our meaning and purpose in life. Let us count together 48 more days, towards Matan Torah, and begin to prepare ourselves to reach our highest potential so that we will be worthy to finally celebrate together our Geula this Shavous.

There will be a daily post of the “48 Ways to Wisdom.” It should be a zechus for all the cholim in need and a be a  tremendous merit for each and every one of you.

Have a wonderful Yom Tov!

The Journey IS the Destination

Dear Family and Friends –

The holiday of Pesach epitomizes one of the traits that has sustained Klal Yisroel throughout our history. On these days, we celebrate a series of history altering miracles performed on our behalf more than 3000 years ago. 3000 years is an awfully long time to celebrate… And look at what has happened in between… In aggregate, we have had about 1,000 years of relative peace and tranquility (and that includes over 400 years of the Second Temple era which were far from tranquil, or peaceful). By contrast, during the same period we had 40 years in the desert, years of conflict with the natives in the land of Israel, civil war, two temple destructions during which millions of Jewish men, women and children were slaughtered in the most barbaric way (un)imaginable, followed by 2000 years of pain and suffering in exile at the hands of crusaders, inquisitors, muslims, Poles, Russians, Ukrainians, Nazis and the list goes on.

Rabbi Nochum Sauer asked in a shiur this past Motzei Shabbos… “Why do we thank Hashem for our redemption… He put us there to begin with! He enslaved us to Pa’aroh!”

So for 3000 years, we continue to celebrate our miraculous redemption from Egypt – as we undergo murderous persecution. Seems insane… and yet, in mere hours, we will sit as Kings, Queens, Princes and Princesses at our royal Seder tables, dressed in Yom Tov finery, leaning to our left as a symbol of our status.

Over the millennia, many explanations have been given to answer the existential question of “Why? Why so much pain and suffering for so long? Why, when You are the Master of Universe, the All Powerful, the All Capable, why do we suffer so…? Why not make it easy?”. Here’s a thought.

Many of us know that we were set upon this world with a specific goal. “Success” in this world is measured with a single measuring stick. As David Hamelech says, “V’Ani, Kirvas Elokim Li Tov – As for I, closeness to G-d is for me the ultimate good”.  The goal in this world, and frankly, the goal OF this world is to help Jewish people become closer to G-d.  (In fact, in the next world this becomes the “base” of our numbers system for measuring all other accomplishments. Our reward for each Mitzvah derives its intensity from the level of closeness we have achieved in this world.)

Parents love to give to their children. We want them to have the best in life. We do this because of the unconditional love we have for them. We do this to show them our love and to experience feelings and expressions of love in return. Have you ever seen a super-indulgent parent? Have you looked at their relationships with their children? Often, they start out looking wonderful, big smiles from parent to child and child to parent…  As life progresses and the child comes to take everything for granted, the parents resent the children, the children resent the parents, respect disappears and people are left saying, “but the parents gave them everything… tsk… tsk…”.

This is true on a national level. When we’ve had it good, we have ALWAYS, every single time, grown complacent. (I don’t need to enumerate the countless examples over history.) We’ve come to expect the “good” to continue and have forgotten that the reason we are given things is to utilize what we are given to come closer to Hashem.

I think the message is self-evident. It is why our people can go through all of the incredible pain and still come out strong. It is how we survive the holocaust over and over again throughout history and still survive as a nation of believers in Hashem.

The journey IS the destination… We are often told that the various experiences of life and history are a test… I don’t think this is whole story. I think each of these experiences, even the most brutal ones, are designed to have us turn to our Father and say, “Abba, please help me! Please, take away the pain! It hurts too much!”

The closeness we feel with family and friends during times of strife and struggle – feel much deeper than those in times of joy. Hashem is telling us, over and over throughout history, you are not close enough to me through your happiness so we have to use other means. But these other means are still to bring you the greatest gift, closeness to Hashem.  These experiences are not a test, but rather the test is to realize that these experiences are the same gift as the easy times. These horrible experiences are a “cosmic” gift!

Over the past year, we have come to know this gift of struggle on a deeply personal level. On the second night of Pesach, it will be exactly one year since our family’s journey with Benny began. Many of you have been zocheh to journey along with us. Much like our nation, this journey has exacted a steep price along the way. We have experienced tremendous pain, and periods of intense joy, made all the more joyful from the depths of the pain that preceded them. We have looked at our little boy so bravely endure treatments that would turn the most hardened adult to water. We have seen (and felt) his pain and suffering. We have seen the hurt in the eyes of our other young children when we have had to be away from them so much… When we had so little energy to devote to their lives. We have cried out to Hashem begging Him to stop. Many of you have been through it with us every step of the way. You have all cried out on our behalf – in literally hundreds of thousands of ways – for it to stop. But somehow, I don’t know that this is enough.

I think Hashem wants more. He wants us to change our perspective on the pain and know the reason “why”.

So this Pesach, let’s share the following message with Hashem. Hashem, if you give us the bounty of a good life, we PROMISE not to grow complacent. Once and for all, we will stay “on message” in good times. If You give us health, we will use it to come close to You. If You give us menuchas hanefesh, we will use it to come close to You. If You give us parnossah, we will use it to serve You and Your children.  You don’t need to use pain to bring us close anymore. We get it… the journey IS the destination.

This Pesach, hear our cries. Specifically as we don our Yom Tov best in times of trouble. This is the greatest message of who we are – we are the Chosen people. We are G-d’s people.

Our dear family and friends. Please take a moment at the seder – right before the mah nishtana – at the moment of “Kan Haben Sho’el – here the son asks” (thank you Rabbi Ross) – to ask Hashem to give us a chance to come close to him with only brocha, hatzlocha, brius and nachas. Please ask it on behalf of Benny and all the Benny’s of the world.

Love,

Ari, Faigie, Yocheved, Rivka Basya, Yosef Tzvi, Yehoshua, Shmuel and, of course, Benny

 

 

TeamBenny.NET a Journey from Despair to Salvation!

I recently read over the last few days, that Erev Pesach, as stressful and chaotic as it may be, we should be careful to watch our children from Chas Veshalom any injuries or harm.

I thought about this over and over and it makes total sense. But, I also thought about, how does one protect our children from dangers that are beyond our control . That answer became very clear to me this year. It is thru Tefilla (prayers) and Ma’sim Tovim (good deeds).

As we approach the Seder night in less than 21 hours, I find myself compiling lists. Not of what still needs to be done, but lists of what I will beseech Hakodosh Baruch Hu (G-D) for. Lists of all that I am grateful for, and lists that are blank in which will be filled in by Hashem, Himself.

As we are about to sit down and tell over to our children the story of how our ancestors were redeemed from slavery, we won’t have too far to look back. The past 363 days have been our own personal journey of bondage and salvation. A journey that has been shared with thousands across the world.  This Pesach we will be able to recount all the open miracles that took place in our lives this past year. Beginning from the night of the second Seder at 1:04 am. We can look at that night as the beginning of our exile or the beginning of our redemption. It was both. Nevertheless, we were blessed with one miracle after another. The bump that appeared out of nowhere; the diagnosis that only came once Pesach had passed and all the Pesach dishes were put away; the story of the locust; the story of “Hashem”, the Eagle; the epidural infection which postponed a couple weeks the MIBG treatment in Philadelphia (which enabled us to go to the Siyum Hashas and say Tehillim for Benny with 90+ thousand people); then the miracle of Succos which saved Benny from getting a certain drug that turned out to be fatal in the study; the list goes on, all which are recorded if you scroll back over the 276 posts.

What is also recorded is the effort, strength and support we received from family, friends, and “new” friends, all of whom signed up early on as a Team Benny player. We may have reached the 49th level of despair (like those in Mitzrayim) early on, but B”H it didn’t last long. Because each and every one of you, were all, willing and able, to put yourselves out there on the line, our feelings of despair turned into a yearning of salvation.  Jumping on the next flight out from NY/NJ to be with us; Davening all hours of the day and night; visiting great Rabbi’s to Daven for Benny; visiting the Kevurim (graves) of our Great  Rabbi’s O”H; starting Tehillim clubs (7 year olds, teenagers and adults); Challah baking; Shmiras Haloshon groups; countless meals (at home and in the hospital); hospital visits to cheer us up, presents that can fill a toy store (for all our children); chartered flights (to take Benny to his treatments in a safe manner); and charity,  are all acts that have carried us out of despair and into a place of hope and healing. I know many of you have done things without sharing it with us, but let me tell you, no act has gone unnoticed!

So as we went around this evening with a candle, feather and spoon to make one final check to be rid of any Chometz, we used that opportunity to pray  to rid any harmful cells that Chas Veshalom may be hiding in our precious little Binyomin Chaim.  B”H we also were able to clean out and be rid of dozens of medications that Benny should never ever need again.

Please continue to work your magic this Yom Tov so that we, as a Nation, can celebrate our Final Redemption together forever IY”H.

Benny enjoying a PrePesach family barbecue! B”H, B”H, B”H!!!

Family Gatherings Across the Globe

B”H we have had a quiet week. Today,  Benny is finally getting back to himself.  He is picking up new words every day and is enjoying playing with fish cousins who traveled in from NY this week.

Last night, Benny and his brother’s were invited to a drum recital and a pizza party by friend’s of ours. They all enjoyed the loud music so much, that when they got home, they couldn’t hear anything I asked them to do.

Today, Benny decided that his brother’s drums at home needed some cleaning for Pesach. He’s been pretty helpful around the house especially in cleaning out the nosh cabinet.

As we approach the Seder night, getting ready in cleaning, cooking, shopping etc., I have been reflecting back to this past year. We can hardly believe this Pesach will be a year that Team Benny was formed.

I have also been reading and learning about the importance and power of the Seder night. The close connection between us and Hashem, one of the most Holy and important times of the year, where we can ask for just about anything. It was not even an hour that our Seder was over, on the second night, that Benny woke up with a bump by the side of his eye. Benny showed no signs of his illness until that point.  We had no way of knowing anything was wrong. I look at that bump as a blessing and a sign that Hashem gave us. Not only did it get us to take action and get Benny the help he needed, Hashem showed us on the night that were closest to Him, that He is with us in our new journey. Although, one could look at our journey as a Golus, the fact that it happened the night we were redeemed from Mitzrayim (Egypt), shows that we too are on a journey of Geula and Refuah IY”H.

May this Seder bring to all of us the Final Geula and Refuah we all need in our lives.

Regarding the update of Refael Yoel Ozer ben Chaya Malka:

I am happy to report after speaking with Michelle and Avi Feder earlier today, their son is B”H improving every day. Yoel is talking, laughing, walking (although a bit shaky), and is understanding everything.  It is truly a miracle beyond miracles.  What is not a miracle, but truly remarkable, is the closeness and connection we all feel with one another and the desire to take action in time of anguish. There is no question in my mind that the outcome so far for baby Refael Yoel Ozer and baby Binyomin Chaim (Bennny) is a direct result of your Tefillos (prayers), Mitzvos and desire to do good for their Zechus.  Being that these babies were born so close together, lived across the street from each other the first year of their lives, our families connected like one (going back 3 generations), having the whole world pray for their survival, it so beyond any human comprehension. The external forces are so great, yet, so are the forces when we all come together as one.

The Feder’s and our family have tremendous Hakaros Hatov (appreciation) for everything and everyone that has played a role is our children’s recovery.  IY”H may we all be able to celebrate in each other’s Simchot very soon.

Good Shabbos!

Picture of the Week:  Cleaning for Pesach or is It!

Just a quick update written by Rabbi Eli Gewirtz

From: Rabbi Eli Gewirtz <rabbig@partnersintorah.org>
Date: March 22, 2013, 1:27:24 PM EDT

Subject: An update on Yoel Feder and why thousands of people are praying for a two-year old baby they’ve never met
Reply-To: rabbig@partnersintorah.org

After two-year old Yoel Feder sustained a life-threatening head injury when he was struck by an out of control car in early February, several hundred people in Yoel’s home community (Passaic-Clifton, NJ) came together – on a nightly basis – to recite Tehillim (Psalms) on his behalf. But it wasn’t only in his community. As word got out about this tragedy, people from all over the world recited special prayers and, as Yoel’s mom requested, accepted one mitzvah upon themselves in Yoel’s merit. I have over 150 emails from people who never even heard of the Feders expressing their compassion for little Yoel and committing to take on one mitzvah with special zeal. Surprising as it is that so many people shared the family’s pain in this way, it would only be natural for the concern to diminish over time as life’s everyday challenges get pushed to the front burner. For some reason, that didn’t happen. Regular gatherings continue for the recital of Tehillim. A 15-minute nightly conference call with a Torah lecture and heartfelt prayers, with hundreds of participants each night, continued unabated even in this frenzied, home stretch week of pre-Passover preparations. Requests for updates on Yoel’s condition keep pouring in from across the globe. Why?

Because Yoel is our brother. He’s our son. We are klal Yisrael. We are one.

I’ll give an update on Yoel’s condition shortly but will first share the following of how someone in a different context personified this idea:

Mrs. Chana (aka Caitlen) Bilek, one of the Study Coordinators at Partners in Torah received a called today from a student named Frank. The following is a faithful reconstruction of that call:

Frank – Hi Caitlin!!! I cannot believe you matched me with a prominent lawyer from NY. Here I am a little conservative Texan, and you matched me with such a powerful man.

Caitlin – Oh really, well Ira must be humble because I did not know this.

Frank – Well, I looked him up online and found all this out. I told Ira that I could not believe he wanted to learn with a little me from Texas when he was such a big shot. Ira replied, “Frank, Can I ask you if your mother was Jewish”? I said yeah. He asked me the same question again, “Frank- was your mother Jewish?” – I say ‘Yes’. Ira says “my mother was Jewish too.” So here we are two Jews who are going to learn Torah, are you okay with that”. I said ‘yes’. Then Ira says, “So let’s learn”.

 

Caitlin – Wow Frank this sounds like you’re really happy with your mentor.

Frank – Yes! I’m pumped. Here I am at 60 yrs old and I’m pumped! I just wish that kids in their 20s would know about this so they could make better life decisions.

Caitlin – I’m very happy for you. Please make sure tell others about our program.

Frank – Oh I will! Your organization is great. Here you are helping me get Tefillin and matching me with a great mentor.

Caitlin – Thank you. And you are a great guy too. Happy Passover and thanks for calling.

Whether a prominent NY lawyer, a humble 60-year old Texan or a 2-year old baby, we are one. We come in all shapes and stripes, Democrat or Republican, Sephardic or Ashkenazik, Jewishly knowledgeable or less so, affiliated, marginally unaffiliated,  or completely unaffiliated, we’re all one. And when we behave and pray as such, Hashem listens.

 

In early February, the doctors had no idea if Yoel Feder would make it out of the hospital alive. If he would, the head trauma along with hundreds of fractures in his skull made the likelihood of severe brain damage quite strong. What the doctors didn’t realize is that Yoel is part of klal Yisrael. They didn’t understand the power of thousands of people stepping up their commitment to one mitzvah, nor the power of earnest prayer. Even intense prayer doesn’t always achieve the hoped-for outcome. Hashem has His own plans. But sometimes Hashem is just waiting for klal Yisrael to get it together. Here’s the latest from Yoel’s parents:

Yoel is talking and learning how to walk again. He was transferred to specialized children’s rehab hospital and doing very well baruch Hashem (thank G-d). He’s talking all the time and, as far as we can tell, remembers almost everything. He is in very good spirits and is always smiling and interacting with everyone. The most pressing physical issue we’re dealing with is a large swelling on the right side of his head right above the eye. The swelling is caused by a leak of cerebrospinal fluid which the doctors are hoping will resolve itself without intervention could get complicated and dangerous. So glad to be able to share this news with you and hope everyone will continue to daven. Thank you for all your tefillos (prayers) and may Hashem should continue to answer all your prayers.

 

While it is too early to know what the long term effects of his injuries, if any, will be, the progress so far is nothing short of miraculous. In addition to likely playing a major role in Yoel’s healing, the prayers and the mitzvos done in his merit have, from the beginning, offered his parents’ hope and tremendous support. They vividly see that they are not alone. We should as well – without needing another tragedy to bring it to the surface.

 

As we sit down at the Seder table to celebrate our miraculous redemption from slavery,  let’s realize the power we have to achieve national healing and our final redemption. It starts with appreciating all the gifts we have – the Ira’s in our life – and then with getting Ira’s message. We are one.

 

Happy Passover.

 

Rabbi Eli Gewirtz

A day full of laughs…B”H

 

“what have I done?”

With less than one week away to Pesach, we have begun our preparations. The hour is late, and it just so happens I just fell asleep for the past hour while writing this post.  This is a quick update, to let you know that Benny is B”H gaining his strength back and is in a much better mood.  He woke up laughing and hasn’t stopped today B”H.

Tomorrow I will write more. Good Night

When will the Cleaning Stop?

The past two weeks I was unable to physically prepare for Pesach. However, I did spend a lot of time during the long days and even longer nights at the hospital thinking about this coming week.

What can possibly be left to clean? We have just spent the last 11 months cleaning. Cleaning with every ammonia agent out on the market, and other’s still in trial, over and over and over again.  We’ve been cleaning with chemicals we have never heard of, using gloves, booties, goggles and lead shields as protective measures. Some of these cleaning agents cause rashes, fevers, sores, nausea and pain.  We’ve met dozens of cleaning crews through out the year, each with a different title and cleaning specialty.

Although, cleaning for Pesach is no easy task, I don’t think I could stress out about it any longer. We aren’t cleaning to save our lives, but to only enhance them.  “Think good and it will be good.”  This is my plan of action for the week ahead.  Do what can be done!  and breathe, breathe, breathe.

We hope and pray that when we do B’dikas (searching) and B’iur (burning) of the Chometz this year, signifies, a home free of Chometz, and a life free of illness and the Geula in our time.

Last Sunday night before we checked into the hospital we enjoyed a beautiful Bat Mitzvah. This Sunday evening we enjoyed a gorgeous Bar Mitzvah. Each signifying Simcha, happiness and Kedush, holiness. I consider each Simcha (occasion) as a book end to a most challenging week.  The first Simcha, carried us through the difficult challenges with Kedusha.  Benny actually ‘Davened (prayed)’ with the Tehillim (Psalms) that were given out. Tonight’s Simcha took away the painful memories of what transpired through the joy and laughter throughout the evening.

May we all be Zoche (worthy) to enjoy only Simchos throughout our lives.

Benny’s been enjoying his time at home with his family. He is still pretty weak and wants to be held all the time, but that is expected and we are happy to give him whatever he needs.

Shabbos morning I woke up by a kiss and smile from Benny. It was his way of reassuring me that everything is going to be alright.

One new challenge we face daily is what will Benny wear that day or night.  He has acquired a very specific look. He only wants to wear button down shirts (like his Daddy) and dress pants with pockets and his Yalmukah (if he’s not going out in the sun).  This becomes problematic when getting him ready for bed and so we’ve given in to his demand in letting him sleep in his clothes. At least I was able to manage have him take his shoes off. I said it was a rule I have if he wants to sleep in my bed and so far it’s working.

We are looking forward to enjoying the next few weeks with our family at home and hope to continue to update you with only good news to come IY”H.

 

Good Shabbos – and THANK YOU!!!

Dear Family and Friends –

We want to wish each and every one of a you a Good Shabbos and a huge thank you. Baruch Hashem, we are all home for Shabbos!

As you read in my previous email, Tuesday and Wednesday were very tough days for Benny with 104 plus fever and other serious issues throughout. The serious breathing issues and fevers began within minutes of the start of treatment on each of those days and lasted through the night.

On Thursday morning, as we began treatments, I sent an email requesting your tefillos. Amazingly, despite receiving the same treatment as the other days, Benny’s fever never got above 102 and he stayed fever free for much of the day. His breathing issues were managed far more easily than on the previous days as well. We were able to finish the treatment in the shortest amount of time and begin his recovery process late last night.

So thank you from the depths of our hearts. You all clearly made a difference.

Baruch Hashem, we are home and hope that Benny will recover his strength very quickly!!!

This Shabbos is the 4th Yahrzeit of Benny’s namesake – Zaida Ben Genauer (Binyomin Chaim Ben Moshe Z”L). To learn more about this incredible tzaddik (whose traits Benny has clearly inherited) please visit the following links.

http://www.teambenny.net/sample-page/bennys-bris-remarks/
http://www.teambenny.net/2013/03/15/binyomin-chaim-zaida-bens-4th-yartzeit-shabbos/
http://www.teambenny.net/2013/01/25/winter-break-in-seattle/
http://www.teambenny.net/2012/11/27/what-is-the-prognosis/
http://www.teambenny.net/2012/09/21/saving-a-life/
http://www.teambenny.net/2012/06/17/the-journey-began/

 

Binyomin Chaim – Zaida Ben’s 4th Yartzeit Shabbos

IY”H if all goes well the next couple of minutes  we will be going home for Shabbos.  HOORAY!

This email is a tribute to my beloved Zaida Ben O”H (may he rest in peace), Binyomin Chaim Ben Esther. This Shabbos will be his 4th Yartzeit (departure from this word). There is not a day that goes by that my Zaida is not on my mind, on my lips and in my heart.  The day my Zaida departed, a part of me did too. It wasn’t until Nov. 14 2010, when that part returned, Benny was born.

Each and every day and night, as I look at Benny, play with him, kiss him, I am reminded of Zaida Ben O”H. Their mannerism are almost identical. Benny played the Kipa game before he could talk. He loves ice cream and chocolate too. One of the most amazing qualities that these Benny’s have in common is their infectious smile and their ability to win over all walks of life through their personality.

Last Motzei Shabbos (Saturday night), Chai Life Line hosted a concert with “8th Day” performing. I have to say, I have never been to a concert before with so much Simcha (happiness).  Volunteers were flown in from NY to fill the room with laughter, cheer and loads of electrifying energy.  As I glanced around the room, all I saw were smiles and smiles and smiles. Any aches or pains were checked in by the door and for two hours we all experienced this unbelievable joy.   This concert was about a” Celebration of Life.” It touched the inner most chambers of my heart and soul.

This level of Simcha (happiness), is what my Zaida O”H, achieved each and every day of his life. He mastered this amazing quality thru is endless devotion in learning Torah and telling over 1000′s of stories  - he was a Magid (fascinating story teller).

As I sit here, in CHLA,  in the final hours of what has been an extremely long two weeks, I am reading through a diary of stories written about my Zaida O”H during the week of Shiva (mourning).   I would like to share a few of the thoughts shared by 100′s of people throughout the week.

“a man who though of others and had so much pride in each member of his family.” Miriam Freilich

“pleasant to talk to,he was a wise man. may he be a Sheliach for all of us” Rivka Weiss (lived across the hall in the Tamir)

“his generosity… he said when I first came to Seattle ‘do me a favor, we have so many raincoats, please take a few off my hands. ‘” Sheldon Schloff

“one of the most positive people. the greatest mensch” Doctor at the Tamir

“Zaida was a little man but a GIANT”  Shevi Cohen

“a Talmid Chachum and one who always had a Dvar Torah on his lips” Judy and Marvin Pachino

“he was a cute person, you want to attach yourself to him. We though he would be around when Moshiach came”  P Schiller

“for years I’d see Mrs Genauer in the Tamir – he was always running to learn, daven or babysit. His smile and warm personality endeared him to everyone here. ” Mrs. Tova Lewis

“the best childhood memories are in the Genauer home” Shelly Offman

” We have very fond memories of Ben Genauer who had a love for Limud Torah that radiated from him with tremendous warmth and light” Nissn Wolpin

“it is impossible to forget B.G. who was a model of dedication to learning Torah and making it possible for others to do so.” Mendel Weinbach

“B.G. was a specail person who never seamed to ‘grow up.’ He was young at heart, and beloved not only by his unbelievable family, but by everyone who came in contact with. . We were lucky to cross his path”  Penina and Anshel Rosenbaum

“a role model for his family and an inspiration for his generation. teaching by example to love his fellow man and the Borai Olem (G-D). The over 100 descendants who were fortunate enough to be touched by his warm and genuine personally will certainly live richer lives having a zayde like Benyomin Chaim ” Jerry Abraham

“a great man, who showers in every aspect of his life, and in every action of his day, that Torah was priority, he influenced an entire city!” Harry & Perl Brown

“B.G. and the Feder family from Denver CO seemed to me to have been inseparable. The Genauer home in Seattle was always open to us like our own. There are not enough words to describe a simple human being . suffice it to say B.G. was a walking, talking Kiddush Hashem”  Gedalia Feder

It is no wonder why generations later our families reconnected in Passaic/Clifton NJ where we lived directly across from Michelle and Avi Feder (practically shared homes), the parents of Rafeal Yoel Ozer ben Chaya Malka. 

“when I was in seminary I was sick for a week. Zaida took such good care of me. Imagine! a 92 year old man taking care of his great granddaughter. Young at heart, yet accomplished so much” Miriam Tova Kessler Leiber

“he was a shining light in this world. He will always be a Great Light in Shamayim. In his Zechus (merit) may we be Mekabel Pnei Hashchina U Moshiach Tzkkeinu B’Rachamim. (accept the face of Hashem and Moshiach in our life time)”

And so his legacy continues through all those lives he has touched during his lifetime and after.  May Binyomin Chaim Ben Moshe Yehuda’s Neshama have an Aliya and may he be a Me’litz Yosher for all of us down here. May we be Zoche to reunite together with Moshiach coming IY”H very soon.

FYI, Zaida, loved singing Zemiros on Shabbos, especially Ko Ribbon Olam and Kol M’Kadesh Shvei.  Let us remember this special and holy man for generations to come.

Please share any memories you have of Zaida. It would enhance the lives of all who read it.  Thank you!

Good Shabbos!

INSANE!!!

I have one word to describe the he past two days, INSANE.  In fact at 3 am this morning I asked the nurse where the psych floor is in the hospital. She said there wasn’t one!  Probably because they wouldn’t have enough space for all of us. There’s not even a running track or punching bag any where to be found.

This therapy called Imuno Therapy is like no other. B”H we are thankful that these treatments are available, as intense as they are. These treatments IY”H should increase the chance of no reoccurrence, G-D Forbid, by a sizable percentage.  This treatment is generally given over a 10 hour transfusion, with the maximum time of 20 hours. Because of Benny’s reactions and difficulty breathing, the transfusion was extended to 20 hours. It ended at 7 am this morning. Just enough time to give him a rest before starting up again at 10.

That meant another sleepless night; Tyelonal every 4 hours by mouth to treat fevers over 104; breathing treatments every 3 hours; pulse, blood pressure and temperature every hour. Then extra fluids and medications that caused Benny to need multiple diaper and bed sheet changes.  Oh! and did I mention the BEEEEEEEEEEPING!!!!! If only my hand could reach the silence button from the bed every time the machine went off..

B”H, Ari (who unfortunately, had to be out of town for 2 days) is back.   Benny definitely feels the difference when one of us are absent.

As I check my emails here, I am flooded with emails on preparing for Pesach.  IY”H we hope to be home before Shabbos and then we’ll have one week to get ready. Those emails were discussing the spiritual preparation. Benny is undergoing a treatment that effects every nerve, muscle, capillary and vein. A physical comprehensive cleaning of every part of his body, but at the same time, it has a spiritual component connected to it.  The physical is elevated to the spiritual level thru our Tefillos and our good deeds.

The truth is, I am not stressing out this year (so far) about the cleaning process, IY”H it will get done. If you have in mind while you are cleaning your cabinets that OUR Neshamos (souls) are the one’s going thru this cleansing process to get ready for the event we are all waiting for, the Geulah,  it can feel more like Yom Kippur cleansing.  Turn the stress into excitement.

As I watch Benny, unfortunately, in great discomfort all I can do is pray. Pray that the medications are working, pray for no side effects and pray for the clock to turn 10 pm, when this medication will be turned off, IY”H. (There will still be several other medications running thru tomorrow, but,  they are not painful).

Sitting in a hospital room day after day, you lose track of time.  Sometimes I’ll have to glance at the milk carton that comes with Benny’s breakfast to look at the expiration date, and then I’ll at least have a close idea of the date.  It also feels like, we’ve disappeared from everyone and everything.  I’m just  hoping that it won’t be too much longer where I’ll end up seeing our faces on the back of the milk carton (Missing).

I hope to update before Shabbos from the comfort of our home IY”H.

Power of the month of Nisson

Last night was rough. Unfortunately, Benny spiked a fever which was up and down throughout the night. As the fever rose, so did his heart rate.  What was most concerning was his low blood pressure.  Different medications had to be administered throughout the night to keep Benny safe and out of the ICU, G-D Forbid.

I didn’t get much rest.  It’s almost impossible to sleep through all the alarms, not just because I am a light sleeper, I am concerned and have to check the monitors to make sure Benny is not in distress Chas Veshalom.  Seeing the nurses and doctors concern as well, adds to the stress level.

Today, Benny had a super special visitor who spent 10 hours with him. His bother Joey.  They have a special bond with one another.  He was a tremendous help as well.  Every time the alarm beeped, he went out to call the nurse.  I don’t think the nurse was too excited about the visitor… too bad!

We also were pleasantly surprised with a visit from Benny’s Great Aunt Wendy and Great Uncle Chaim from New York, his Aunt Julie from New York and Bubbie. Unfortunately, with his fevers and high doses of pain medication, Benny couldn’t enjoy the visits the way he normally would.

B”H Benny did have the energy to answer Amen to Brochos (daily blessings) today.   Listen and watch: davening

Tonight, Benny’s fever spiked once again to 104.6.   I am praying that the night remain quiet and Benny remain safe.

Quick update:

Elimelech Ben Basya was admitted today (down the hall from Benny) for round 5 of chemo. We hope and pray for Eli to have a full and speedy Refuah Shlema.

Refael Yoel Ozer Ben Chaya Malka continues to make progress each day B”H. The recovery is long. B”H he is talking. He has to learn to walk, eat, and breath without a tracheotomy.  There is also continuous spinal fluid leaking.  We must pray and do whatever we can to help Refael Yoel Ozer recover 100 %. Please daven for Chaya Malka bas Leah Frumit (yoel’s mommy). She is not feeling well herself and must go for scans. Please Daven that she receive a good report and gain the strength she needs to care for her children.

This month of Nisson represents the beginning of all beginnings. Each day of the month of Nisson, represent a different month. It is the month we celebrate our departure out of Exile. Let’s do whatever we can these next couple of weeks to prepare ourselves, so that we too can be worthy of experiencing our long awaited Redemption.

As we clean out our homes, and search for crumbs in hiding places, use that opportunity to help one another. Have those Cholim in mind that need a Refuah, that their bodies be rid of any “crumbs” that may be hiding. Perhaps, this tedious and strenuous task may be bring a sense of fulfillment and actual pleasure knowing your actions can bring with it a Refuah.

 

 

The Symphony

Amazing news received just before Shabbos.

It’s hard to believe one could be excited and even Thank Hashem for news that surgery is scheduled for one’s child, but that is what we felt Erev Shabbos.   We received the email stating Benny’s on the schedule for surgery at 7:30 am.

It was this past Thursday, that I mentioned to Ari in passing that I would like to invite Dr. Stein to our Pesach seder.  This past year,  Dr. Stein, one of the top surgeons in Los Angeles performed surgery on Benny to remove his tumor and then a procedure to heal his epidural infection.

As many of you read about the Orchestra recital Benny attended in the hospital on Friday, what I didn’t tell you is who I saw on the way out.  As we were leaving the hospital “lounge” where the recital was, we bumped into Dr. Stein. He wasn’t at the recital, but just happened to walk into the room . As soon as I saw him, I waited until he was finished with his phone call and asked him if he would join us for the Pesach Seder. He said he was already invited out and then I said “there are two! please join us for the second night.”  He said he would check with his wife and we said goodbye.

Within an hour of this encounter the whole episode of Benny’s line falling off took place. We (the hospital staff) were faced with the challenge of finding a surgeon that would squeeze Benny into his schedule to put in a new line and still make the deadline for the medications that he needed to be connected before noon today.   Emails went out to all the doctors performing surgery on Monday requesting an “add on.”

About a half hour before Shabbos we got an email confirming Benny scheduled for surgery on Monday, at 7:30, with non other than “Dr. Stein.”  The email stated that Dr. Stein moved his schedule around to take the case. We were shocked. Implanting a “line” is definitely not a as exciting or complicated as separating conjoined twins (a specialty of Dr. Stein), yet he signed up.

The only explanation… Pesach Matza Maror.  The words we recite at the seder after we welcome and invite our guests that don’t have a place to eat.  What if I had not bumped into Dr. Stein an hour earlier and invited him and his wife to our Seder?   We don’t go by “what ifs’.” Instead we have tremendous Hakaros Hatov to Hakodesh Baruch Ho for sending us these special angels down here in Olam Hazeh (this world).

One other mention, this all took place in the room of the Orchestra performance. And what an Orchestra Hashem (G-D) conducted that day!!!  (Aunt Tiki, there was  good reason why you bought that orchestra toy for Benny two days prior to this amazing symphony).

After surgery today, when Dr. Stein met with us we thanked him profusely and presented him with a plaque for his office. It was a prayer for doctors from the Rambam (Maimonides).   We also told him how appropriate the timing of this all is, Erev  Chodesh Nissan… the story of Yosef being sold to a spice merchant, (representing Hashem is with us in Exile), and that we consider Dr. Stein as our B’somim (sweet smelling spice) during this most challenging time of our life.   I also asked him why he was in the recital room,” to hear the orchestra.” He said no and just so happened to be on his way to a meeting and stepped out of the hallway into this room to take a phone call.

So when I mentioned before I was excited before Shabbos about the surgery.  I truly was and only because of how it all came together.

B”H Benny’s surgery was successful and he is so far doing well on this new round of medications.  We hope and pray that he continues to weather thru the night and days ahead with clear skies.

PS. There was a 5.2 earthquake at 10 am, about an hour after surgery. B”H it wasn’t during surgery, however, I did receive an email later from a friend that Heaven and Earth was moved thru their students’ Davening (prayers) for Benny.

Meet Dr. Stein:

 

 

Erev Shabbos Update

Still waiting for discharge. About an 1 1/2 ago we came across a bump in the road.  A pretty scary one if I may add. As Benny was getting the last hour of his medication, out of the blue, Benny’s central line just fell out.  We are not sure when or where or how it was pulled, but, there went blood streaming out all over the place. It was one of those terrifying moments. B”H, Ari had just walked in seconds before this happened to pick us up to go home and noticed the line (port) completely out! He was on my lap too! B”H after I applied pressure on the opening to the vein, the bleeding stopped.  Unfortunately, this line has to be replaced on Monday. Which means an unexpected surgery.

We are scheduled to come back to the hospital this Sunday evening to begin the next round of treatment.  This treatment can only take place once the new central line is inserted.  The actual treatment was going to last thru Friday, which now may get delayed into Shabbos.   All depends on how early we can get squeezed in on Monday for surgery.

To think just an hour earlier Benny listened to a magnificent Orchestra that came to CHLA from NY to play music. By the time we arrived at the concert, it was over, but after seeing Benny they took out their instruments and played a couple more songs for him. Listen for yourself!

Video: Salome’ Chamber Orchestra: orchestra

B”H we are home for Shabbos. Walking into the house, smelling the aromas of Shabbos is just what we needed to lift our spirits. Thank you Aunt Sussie who flew in with Uncle Benjy just for Shabbos to help out and put Shabbos together. Perfect timing!

The flip side to this whole ordeal is that Benny will be able to take a bath in 24 hours, filled to the top with water and bubbles and play for hours. We can’t wait.  Maybe this is a sign, that we are finished with treatment, Benny is all better IY”H and Moshiach is arriving any minute. Are you ready? Start packing…

To update you on Rafeal Yoel Ozer :

B”H, he is getting used to therapy. The staff is wonderful to him. He is beginning to talk a lot . He is trying to stand up with help.  Unfortunately, the cerebral spinal fluid is still leaking which complicates the plan for surgeries needed.  Michelle and Avi thank everyone who is Davening and IY”H the Davening should continue to work on healing him completely very soon.

If you have time to bring in Shabbos early this week, please have Binyomin Chaim Ben Faigie Sarah and Rafael Yoel Ozer Ben Chaya Malka, in mind as you light your candles, that this week ahead goes smooth and easy.

Good Shabbos!

Caramel Apples

“Think good and it will be good.”  We have all heard this quote in some fashion or another. A couple of days ago I took a 20 minute break and walked across the street to the grocery store. It’s the only place around here that I would feel comfortable going too. I basically walked around looking for kosher products, similar to what you would do if you were out of town on a vacation and are looking for something to eat.

So there they were, these two caramel apples in the bakery department.  It’s a good thing they were not kosher, otherwise I would no longer be dreaming of them, but would have already eaten them.   I mentioned this story to my friend “Auntie” Tamar and the following day I received this picture from her and a message asking me when I would like it delivered.  She also mentioned, if I waited too long, it may not last because her kids may get to it first.  I told her to write on the box it is for Benny – no one would dare eat it , right?!

Last night, in between vitals, tylenol, and trying to settle Benny, we thought of the lonely apple on the kitchen counter. Benny was excited when I told him he will have it when we get out of here!  ”Think good and it will be good!” And that’s what we did all night.

The latest I heard, the apple made it thru the night and hopefully we’ll be able to enjoy it for Shabbos Party tomorrow IY”H.

Back tracking to Wednesday night.  It was the first time in 11 months of hospital visits, that I switched night shift with Ari and slept at home. I was experiencing total exhaustion and burn out. B”H I got 6 hours of sleep without interruptions. I just felt sorry leaving Benny behind. I did enjoy being able to read to my other children before bed and kissing them goodnight.

Yesterday, Benny had quite a few visitors.  ”Aunt” Meira, “Aunt” Riki, “Aunt” Yehudis, and “Aunt” Alti.  Meira and Riki danced with Benny. Yehudis came with an Elmo backpack filled with toys, candies and lots of goodies. Alti entertained Benny in the playroom.  Benny also had a surprise doggie visit.

 

Watch Video of Benny playing with the dog: doggie doggie1

Early evening, Benny had two special visitors from New York, Daniel and Albert, volunteers from Chai Life Line. Benny took to them immediately and enjoyed playing PlayDoh  and shmoozing with them. He was sad to see them go!  Hopefully, they will come again soon.

Watch Benny fence: unguard

B”H Bubbie and Zaida came too, with Benny’s favorite Bubbie’s homemade chocolate chip cookies and Zaida light up sword. Beware, Benny’s been practicing his fencing and is becoming the real expert!

Last night, was the usual, checking for fever every few hours, with a few less vitals B”H!  Benny did spike a fever over 103.  This medication can cause fevers and hopefully, BEH (with the Help of G-D), will go away when he gets disconnected later on today.

We are aiming for a 3 pm discharge. Please have Benny in mind today that he will be well enough to be discharged and home for Shabbos.

We have about 48 hours at home, before we have to come back for next weeks treatment.

Thank you all for helping us get thru this week. Davening,  good deeds, visits to the hospital, watching our children at home, delivering food, phone calls and emails, Challah baking,  all contributed immensely to Benny’s Refuah IY”H.  A special thanks to our son, Shmuel Tuvia’s teacher who took him and Yehoshua out for Pizza after school.  It was a real treat. Also, a special thank you to Avigdor, who took Joey out for the day. You lifted his spirits!

A Special Happy Birthday to Zaida Elazer!  We look forward to celebrating together this Shabbos. Wishing you good health and happiness for 120 years.

Wishing you all a wonderful Shabbos !

 

 

 

What defines us?

It’s try and sleep or update the blog.  Last night I opted to try and sleep.  The days have been long trying to keep Benny happy and most of all comfortable.

This week is supposed to be a quiet, boring week. “Supposed to” isn’t working out.  B”H we are grateful in the lack of fear that this week’s medications bring. Until this morning, Benny did not show any signs of weakness. This morning he spiked a fever and some red blotchiness on his cheeks, along with some dryness in his eyes.  He’s been a bit irritable throughout the day as well, making the day go by much longer than usual.

Yesterday, Benny spent a couple of hours in the morning with his Daddy before he had to go to work. Benny’s been waking up before 7 and asking for his Daddy every few minutes until he arrives.  Late morning,  his friend Tamar came to visit for a couple of hours. Unfortunately, he wouldn’t let me out of his sight, so I did not have a chance to update the blog or more importantly rest.

Most of the afternoon we hung out in the playroom. There, we were entertained by a group of artists from Dreamworks production, that draw animation. They came to spend a few hours drawing for the patients. Can you guess Benny’s request?  Yes, it was Elmo.

After he got his Elmo drawing, he had one more surprise visitor, Gerard Butler. I have to admit, I would not have known who he was if the staff wasn’t a little excited when he came into the playroom.  Benny was thrilled to have someone (other than me!)  get down on the floor and play with him.  I am not sure who was the one star struck. I think Gerard was star struck over Benny… do you blame him! He actually got a kick out of Benny, especially after he pointed to his shirt buttons being opened and motioned to him to button up. Gerard was a good sport and even buttoned the top (choking) button. When that didn’t look right to Benny, we waved his hands “no” and let Gerard unbutton the top one. It was pretty entertaining to watch.

As I had a chance to reflect on the day, I thought about how this group of professionals, and housewife (Tamar) too, that took time off from their busy schedules,  just to “hang out” with the kids in the hospital and try and bring some happiness in their lives.

It is true that Mr. Butler is a well known name in his field of work. By profession, he is a talented individual and quiet successful, however, his profession does not define him as a person.  It is what he does outside of his profession that defines him as a person. Visiting patients and playing with kids in the hospital defines his character.  Maybe there should be a separate category in the award ceremonies to nominate these individuals in the category of best character “off the screen.”

This applies to all professions. A job doesn’t define a person’s character for the most part. A person’s character is defined by his actions on and off the set! As some of you may heard in the news this week, there was an elderly woman who fell unconscious in an assisted living facility.  A nurse who was with her called 911 and was told to administer CPR in order to attempt to save her life.  The nurse refused.  Whatever legal reasons she had, clearly she acted without any moral character. And to think she is in the medical profession!!!

We are all actor’s in some fashion, trying to win over people’s approval, get good ratings, etc. The question we have to ask ourselves each and every day, are we acting as an impostor or are we genuine and real in our role?

Not sure if this guy was an imposter or the real thing!

This morning, Benny had a special visit from his friend Shoshie ( the most genuine and real person you will ever meet).  We spent the morning hours in the playroom and a few in the afternoon.  It is easier to keep him entertained there with all the toys and arts and crafts projects . The problem is, it is not open 24/7, sometimes only 4 hours a day.   This past week and the last hospital stay, I was faced with the  challenge of getting help with Benny.  Just some relief  for an hour here and there, with someone he is familiar with, other than his father (who has to work),  so I can catch up on some sleep.

You would think 11 month’s into this journey, we would be used to not sleeping and then play kindergarten teacher ALL day . B”H, as Benny, grows older by the day, he also becomes more curious, more active and of course more irresistibly adorable.  Hopefully, Hashem will send the right messengers we need to get thru the next few months.

Today, I am happy to report that I had the most amazing phone call.  I spoke to my friend Michelle and she told me how she is settling in the rehab facility with Refael Yoel Ozer, meeting the staff, learning the rules etc.  IY”H therapy should start tomorrow and we hope and pray that he will have a speedy and full recovery.  A few minutes into the conversation, Michelle put Refael Yoel Ozer on the phone to say hi.  He said “Hi!”, then he said “hi Faigie, I love you” ( he copied his mother), but that didn’t matter. He was speaking!!! I heard him very clearly say my name and the rest of it. It was truly an amazing, goose bumps and tears sobbing moment.  All of our Tefillos and Zechusim and 1000′s of mitzvos done on his behalf are working.   I know many of you have never met Refael Yoel Ozer or Binyomin Chaim, but have developed a deep connection with these two strong and special little boys.  The feelings are MUTUAL!!!  We can’t thank you enough!

IY”H I hope to continue to only give good news.

Watch video of bennydavening  in the hospital.

 

 

Check in – single occupancy please!

Quick blog… Benny is finally sleeping and I finally have given in to sleep when he does, at least 1/20 times. Plus I have an incentive, a friend of mine told me she would play with Benny ALL day tomorrow so I can “blog” adequately and sleep tonight.

As we were getting ready to go to the hospital this morning, we had a special visitor from the valley, “auntie” Yehudis.  She not only came with a loads of energy and good laughs which Benny loves, she supplied us with new Elmo toys for the hospital. It put Benny in a great mood.

We arrived at the hospital around 10:30 this morning.  Upon every admittance to the hospital you have to go thru admitting, insurance info etc.   Today, took unusually long because our insurance has changed and everything had to be put into the system. I won’t bore you with the details.   We were quite anxious to get upstairs to the 4th floor already, because we knew the hour that Benny is “hooked up” is the hour we will be discharged on Friday IY”H.

We made it to the 4th floor around 11:10.  Unfortunately, the check in or the hospital room did not go as one would hope when checking into a hotel. When we got up to our room, we found out we were bed “B” and there was a patient in bed “A.”  This patient was a young adult, with interesting taste in TV shows (blasting across the room behind the curtain).  We were told it would only be temporary as a single room would become available in a few hours. So we waited. Not so patiently though.  Benny was given Benadryl before his infusion and that really set him off. He spent the next hour crying and crying. Maybe it was a combination of the meds and the loud noise from behind the “neighbor’s” curtain.

We ran into one other complication and that was getting blood drawn through his line. His line was clogged and needed a special medication called TPA that unclogs the line. It usually takes about an hour for the medication to work. This all resolved itself and the infusion was ready to begin by 2:30.  When Benny saw the pole with the medication being wheeled in, he quickly motioned a “no” with his hand and said “no.”   He also tried unscrewing his line as well. I hope my worrying about it yesterday, did not actually bring it on today.

A few hours later, a private room opened up. The only catch was, it was in the nosiest location on the floor. I knew we would not get any sleep there, so I decide to hold out for a different room.

B”H we were fortunate to get our favorite room.  You must all know by now which one it is. The “eagle” room. We settled in around 7:30 pm.  Better late than never and B”H much, much quieter.  The view is my favorite one from all the rooms.

Zaida and Bubbie and brother, Yosef Tzvi (Joey) came to visit this evening. Benny loved dancing and singing with his Zaida and Bubbie. Please come again soon!  Hopefully, Benny will sleep through the night and maybe we’ll be lucky enough, that the nurses will too!!!

Thought you might like to see Benny rehearsing for his concert : trailer and trailer2

ok, so maybe the back up needs a little more practice.

Thank you Aunt Tiki and Uncle Simmy for the special new symphony toy . It’s perfect! 

Tomorrow Refael Yoel Ozer ben Chaya Malka will be moving to a rehab facility.  I heard from Michelle earlier that B”H he started to speak a little on Shabbos and a little more today.  These are good signs B”H. They are signs that all of our tefillos and extra zechusim being done are working.  Keep up the amazing work you all our doing on behalf of our boys. We cannot carry this load alone!  IY”H the transition should go safely and swiftly.

 

 

 

“I just want to stay home!”

Tomorrow IY”H we are scheduled to go back into the hospital for the second treatment of imuno therapy. Benny will be receiving medications for 96 hours straight.   These medications B”H are not painful, and are used to boost next weeks medications (which unfortunately are painful, but IY”H will be managed with pain medications).

Benny is getting older and wiser by the day.  He is verbalizing more and more his likes and dislikes. I know it doesn’t help to worry, but I do anyways. I am concerned he will finally just say “no!” and refuse to get out of the car and walk into the hospital.  I am just waiting any moment for the day to come.  What will I tell him? Will I lose his trust?

Benny’s friend Refael Yoel Ozer, IY”H should be leaving the hospital this week to go to a rehab facility. He will have to learn to walk, talk, and eat again to name a few .  Please continue to have him in your tefillos for a full and speedy recovery.

This morning we officially began our Penimim groups as a Zechus for the Cholim in the community and beyond. We may not be able to control the events from happening in the world, but just maybe we can control the outcome, thru our good deeds and prayers.

Benny had an enjoyable evening at a Chai Life Line event at Color Me Mine. He painted his own mug. I will send a picture when it’s ready.

S’mon Tov U Mazal Tov

Today, B”H we had two Uf Ruff’s (generally the Shabbos before the groom gets married, he is called to the Torah to get an Aliya  (recite a blessing)  to go to.  My son Shmuel Tuvia, was appointed the important job of handing out the candies as the ladies came to shul. (it’s a tradition to throw candies at the groom after he recites a blessing).  Benny on the other hand, appointed himself as the designated taster, making sure the candies were good enough to eat. He had to go thru a  number of candy bags to make certain that they were not only good, but great.

After the candy was thrown and Mazal Tov’s were wished, the Bubbe (grandmother) of the Chosen (groom), turned to me in Shul and said the most beautiful thing ever. She said she will IY”H be at Benny’s Uf Ruff throwing candies too. She meant it too!  Throughout the day, I am approached by people telling me they are davening for Benny multiple times a day.  It is a remarkable feeling knowing we are not in this alone. It is even more remarkable as someone who is caught up in the excitement of their own SImcha, to think of other’s and  wish the same for them. It reminds me of a Kallah (bride) who called me on the day of her wedding, last month,  in the midst of all her preparations, to give Benny a Bracha. You are all so special. It is good deeds like that, that make Hashem proud.

While we are not in the midst of our own SImcha at the moment, I too would like to give a Bracha to these young adults who are about to embark on the most important journey of their lives, together with their soul mate. I would like to bless you with true Simchas Hachaim  (happiness), good health always, good Mazal (fortune),  and Menuchas Hanefesh (peace in your soul). This inner peace should always give you the ability to conquer the challenges of life in a manageable, calm fashion and even bring happiness.

Wishing you all a safe and wonderful week ahead!

Picture of Benny at the park on Friday, courtesy of his favorite baby-sitter Alti.

 

 

A Day trip to the Zoo

Yesterday, Benny had a fabulous day at the Santa Barbara Zoo with his great Aunt Tiki, great Uncle Simmy and cousin’s William and Jared. Benny didn’t mind to the two hour ride each way, as he was entertained sitting next to his cousins, speaking gibberish.

Benny was so cute imitating the animals; in sound, like a lion roaring and in motion, like the flamingos standing on one leg.  He’s been roaring and standing on one leg ever since. When I ask him about the Gorilla, he puts his finger to his lips and says, “SH SH!”  The gorilla was napping for a while.

gorilla

parrot

 

I have been trying to store up good memories for when we go into the hospital next week for two weeks. Benny loves watching the videos of all the trips we’ve taken and it really puts him in a good mood.  I am hoping it will help pass the time next week.

Today, we went for a stroll at the Grove with Bubbie. Benny met a new 4 legged friend there  by the name of Sunny Ray. Sunny Ray is a trick dog that wears really cool sunglasses. Benny thought it was pretty silly, but enjoyed watching him perform some tricks.

His favorite store at the Grove is the candy store.

 

B”H Benny’s hair is growing more and more every day. It’s pretty amazing how he always wants to keep his head covered, either with a cap or a yalmuka. He even wants to wear a head covering to sleep.

 

 

 

 

 

Simchas Purim

The Purim Spirit began this past Monday. Chai Life Line hosted a fabulous Purim party with the theme of “CandyLand.”  Every kids dream!  Benny and his siblings and many other families had a wonderful time and were truly happy.

Video from purim event: 18eventpurim

The festivities continued on Thursday night after the fast, when Bnos Devorah students dressed up as Umpa Lumpa’s, performed for Benny, his siblings and another family. They then invited us on a “Woody Bus” (a remodeled school bus with couches and wood paneling inside and out), to take us on a trip to Munchies. The kids were treated to ice cream and candy.

Friday, was carnival day at school. Benny even played a part in deciding which costumes his brother’s should wear. Check out the one he chose!

 

Purim night Benny wanted to join us in listening to the Megillah reading in Shul. He was amazing and only made noise when Haman was said. I was so grateful that he allowed me to hear every word.

Our theme this year was Simcha, Ada Lo Yoda.  What better way to achieve that level is with a little help from  some alcohol. So beer it was. From a family that doesn’t drink it was a stretch. But, B”H we all managed to be happy inside and out.

Purim day was filled with activity from morning until almost midnight. Benny was kept busy jumping on moon bounces, dancing with Yeshiva boys that came collecting for their Yeshivos, delivering Shaloch Manos and most importantly, getting his hands on as much candy as possible.  You should have seen him stuff his pockets!  His pockets were out of space for the Purim gelt he collected too!

Video of Benny dancing: dancingpurim

The day turned to evening fairly quickly.  We enjoyed a magnificent Purim feast hosted by our  friends, and later attended a community wide Purim Concert, hosted by the Rechnitz Family. They went out of their way to make sure Benny and I had a comfortable seat, front row.  Thank you! It was so beautiful to watch Benny clap his hands and wave them to the music. He really felt the spirit of Purim and was truly happy.  His favorite performers were the Kinderlach from Israel. Sorry, MBD, he liked you too, but they were closer to his size.

Video: kinderlach1 and kinder2

All day long today, I said, “can you imagine Purim lasting 8 days!”  Someone replied, it lasted for months in Shushan.  The thought of it gave me a hangover!

Now comes the fun part, dividing up the candy among my children and telling them which candies they are not allowed to eat.  My 7 year old asked me tonight, “why isn’t Purim at the beginning of the year?  Then I could have an entire year to eat it!”  Excellent question, indeed.

We are so grateful that we were home for Purim, however, there was not a minute that went by that we did not think of our dear baby, Refael Yoel Ozer Ben Chaya Malka  and dear parent’s, who are still in the hospital. Purim is Michelle’s favorite holiday.

Throughout the day, we received messages from all over the world of people Davening for Benny’s Refuah on this Holy day. The night of Purim our dear siblings Chani and Allan, sponsored a night of learning of more than 200 young individuals who learned as a Zechus for Benny’s refuah Shlema. Thank you!

IY”H may all our Tefillos be heard and fulfilled in the coming of days.

 

Beautiful Purim Poem

This poem was sent to us by our friends Meir and Yocheved K. of Passaic. It speaks for itself!

This year instead of a cute & funny poem about our theme
we will try to help a Passaic mother fulfill her dream.

A little boy is in the hospital, a tragedy occurred
a family is broken, with so many tears, their vision is blurred.

Although the future is unclear, there is something we can do
daven & learn with him in mind, & don’t forget Tehillim too.

But one thing more, a special request straight from a mother’s heart
to make a commitment to be better or a new mitzva in his merit, to start.

So on this day of Purim we can help turn sadness into joy
to be mispallel for V’nahpuch Huh, a complete refuah for this boy.

Let us add for them some extra simcha, as Purim is almost done
I am sure they will feel it because k’ish echod b’laiv echad, Klal Yisroel is One!

We wish Refael Yoel Ozer Ben Chaya Malka a quick and complete refuah shelaima!

 

 

The Game of “Life”

DId you ever play the game of “Life?”  It was one of my favorites as a child.   Not sure why I liked it so much. It was a road map of what life would be like.  Each player is given a car in the beginning of the game and basically goes on the journey of life. Start off with a job by spinning a number and landing on whatever number the wheel takes you too.  Then you are off to get married and add a spouse to your car, followed by kids and so on. Throughout the journey, you receive bonuses at work, have additional children, pay fines, move, take iill, etc. Sound familiar?

Purim is just a few short days away. It is one of the Holiest days, if not THE Holiest day of our year.  This holiness is achieved thru Simcha, happiness.

From the moment we are born, we are lead on the journey of life. In the beginning we are  a passenger in the back seat. Then we grow up a little and graduate to the front passenger seat., until finally we are old enough to get behind the wheel and drive ourselves.

There are many, many roads, some traveled more than others. There are smooth roads, roads with pot holes, unpaved roads, and then there is, the “Golden Road.”

There is the road that leads you to the right Yeshiva or Seminary. The road that leads you to  your Zivug (soul mate) in life. The road of Parnasa (livelihood). The road to parenthood. The road to good health.

Wouldn’t it be amazing if we could download an app on our phone or enter in Google maps the roads I listed above and follow the directions given.  There wouldn’t be such a struggle anymore. We wouldn’t be driving around for hours lost. We would not only be given the destination, but an exact time (with traffic) of the time we would arrive.  That map actually does exist, it is called “Torah,” but it requires a labor of commitment to learn and study the directions.

I have always been a competitive sports player. I like to win the game! However, over the years, I have learned that it’s not s about winning the game, but, how to enjoy playing the game, especially, with the players around you.

The same is true in real life. We cannot live it alone. We all need each other to survive, to unite and to help each other travel on this journey we call “life.”

Let us try and relive the days of Mordechai and Esther this Purim, by uniting with one another in prayer, peace and happiness.  Let us work together to help one another get thru some of the most difficult roads and let us rejoice with one another in the happiest of times.

Ari, the kids and I, are so grateful thus far, for all the love and support we have received from all over the world, from close ones and from strangers.  This Purim we will be celebrating the Simcha (happiness) you have all brought into our lives during THE most treacherous journey of what we call the “game” of LIFE.

 

Up’s and Down’s

B”H while it is good to be home with Benny and the family, my heart aches for our dear friend’s, the Feder’s.  Tomorrow, will be two weeks that they have been without a “normal” night of sleep.   While B”H I was able to share encouraging news with you on Friday, Shabbos brought it’s challenges and fears. I would like to share with you an email I received this evening that sums up Refael Yoel Ozer’s condition and ideas of what is being done on his behalf.

Written by Rabbi Eli Gewirtz Partners In Torah

10 days ago, I sent an email to family and friends of Partners in Torah about 2-year-old Yoel Feder. The response to that email – over 70 emails to date – was simply overwhelming. People from all walks of Jewish life committed not only to praying for Yoel but personally committed to a mitzvah in Yoel’s merit, as Yoel’s mom requested. Some spelled out the specific mitzvah they took on (to name a few… going to Western Wall to pray, not speaking lashon harah, giving tzedakah, studying more consistently with their Torah partner, praying on a regular basis, baking and separating). Others were less specific. One woman wrote “I did a mitzvah this evening that was very difficult for me as a merit for little Yoel”. Several people offered financial assistance, one person sponsored 10 pairs of Tefillin! Virtually everyone asked for an update on Yoel’s condition. My apologies for not responding to those requests until now. There simply wasn’t anything new, nor anything encouraging to report. Seeing him again in the hospital, hooked up to the most sophisticated life-sustaining equipment, was a painful sight, one which I was reluctant to detail.

 

 

While Yoel has had ups and downs in the past couple of days, the doctors are hopeful but have stressed that he has a long road ahead of him. He has one eye open but cannot yet see. Please G-d, he will be seeing perfectly sometime soon. They took out the shunt in his brain, a truly encouraging sign, but he has multiple skull and facial fractures and will require several surgeries. The doctors are talking about 6-12 months in a special pediatric rehab hospital.  

 

Yoel’s parents are extremely grateful to each and every one of you for your prayers, mitzvot, and good wishes. They have made two requests: that everyone keep praying and doing mitzvot, keeping in mind the name for Refoel Yoel Ozer ben Chaya Malka. They also wrote the following: “There is a tzedaka that is near and dear to our family. If anyone would like to give tzedaka for Refoel Yoel Ozer to have a full refuah (recovery), we would be soooo happy. The Special Children’s Center, 1400 Prospect St.,

Lakewood NJ  08701. This tzedaka helps thousands of Jewish children with severe disabilities: Please put on memo of check for refuah for Refoel Yoel Ozer.   Thank you so much, everyone!!!!!  We are taking it one hour at a time.” Donations can be made at www.thecenternj.org/donate    

 

May I suggest that those of you studying through Partners in Torah mention Yoel’s full Hebrew name before commencing your study. May I also suggest that those who do not currently have a Torah Partner sign up today in Yoel’s merit.  

 

All emails describing what people have done in Yoel’s merit have been forwarded, and will continue to be forwarded to his parents. They’ve expressed the following several times: “it’s keeping us going”. Please accept my apologies for being unable to respond to individual requests for updates. Rest assured that your prayers and mitzvot are still needed. As mentioned already, this is going to be a long haul. Please G-d, I’ll haveextraordinary good news to share real soon.     

With Purim, the holiday of hidden miracles, just around the corner, please join me in praying that the Feder family experience a complete transition from darkness to light, and from sadness to rejoicing.

 

Wishing you and your family a joyous Purim,

 

Eli Gewirtz

  

P.S. Many of you forwarded my original email to your own lists, generating a large number of additional requests for updates. Please be so kind as to pass this message along to your caring friends.

 
I have been thinking day and night what I can do to make a difference .  One way I look at it is to look at the situation and see what needs to be “fixed.”  Today, after speaking with Avi Feder and hearing his concerns in Refael Yoel Ozer’s eye sight, I thought about if we were to work on Shmiras Eynayim (guarding our eyes) from seeing impurities as  Zechus.  It could be a big step, like choosing not to go to a movie or a smaller step and not flipping thru the tabloids as you stand in line at the grocery. Unfortunately, there are no shortages in today’s world of finding something to protect our eyes from.    The next few days are extremely important. Refael Yoel Ozer, will be meeting with specialist and eye surgeons to try and determine the severity of the injury.  I truly believe we have the ability to help this precious baby boy.
Today, we spent most of the day at clinic.  Some hospital out patient days are just as long as being in patient.  Today, was one of those days.   Today, Benny decided he wanted to make his debut in wearing a Yalmuka and took off his hat.  He is fully aware that his hair is growing in and I guess he’s proud of it and wants to show it off. It’s fascinating how he knows the difference. 
We are now in a month, Adar that represents Simcha (happiness).  We are so ready to welcome that Simcha into our home and invite it to stay for good.  We also wish it upon all those reading this, in your home. 

48 Ways to Wisdom #7 – for Refoel Yoel Ozer ben Chaya Malka

As a merit for a complete recovery for Refoel Yoel Ozer ben Chaya Malka – a precious 2 year old fighting for his life after being hit by a reckless driver.

(If you need any of the previous Ways to Wisdom posts, please visit http://www.teambenny.net/48-ways-to-wisdom/)

Way #7: The True Charisma

Way #7: The True Charisma

by Rabbi Noah Weinberg Humility is not an inferiority complex. It’s doing the right thing and not being dependent on the opinion of others.

Shift Change

A lot has happened since yesterday’s post and I am so grateful to report ,IY”H encouraging news from this day forward.

It is about 2 hours before Shabbos, I am pleased to inform you that I am finally resting in my bed. We were told that this week would be intense, but I don’t think it’s possible to prepare for no sleep, 5 nights in a row.

Last night Benny’s infusion ended around 11:30. Tshere were several more medications he needed that lasted until 3 am.  In between infusion, as part of the clinical trial he is in, he was scheduled to get an EKG. This was set to take place bedside. At around 11:45 the charge nurse, along with our night nurse came in to put leeds on Benny, 6 across the chest, one on each wrist and one on each ankle.   Benny was somewhat sleeping, but when the nurse began to connect the cables, Benny became hysterical.  He immediately pulled off the stickers on his wrist and managed to pull a few more.  After 10 minutes of crying, the charge nurse called off the test and said he will have to “abort” the test.   I was very concerned because since this is a clinical trial,  the only way to receive the medication is thru this trial and if we don’t follow protocol than Chas Veshalom (G-D Forbid) we may no longer be eligible.  We were unable to reach our doctor. at midnight to answer our concerns.  The nurse said that Benny was uncooperative because he didn’t know them. She went so far as to say, he didn’t know them because we would refuse care (vitals) for him in the middle of the night, going back 8 months.  Maybe 3 or 4 times, we asked the nurses if they could push off vitals in the middle of the night to a more reasonable hour so he can rest a bit.  I couldn’t believe what she was saying. She was hung up on 8 months ago and says Benny is uncooperative. I said to her, he’s been up since 5 am with 105 and fever off and on, the remainder of the day. He finally fell asleep at around 10, and now he is woken up. Of course he is going to cry and scream.  Unfortunately, I couldn’t sleep the remainder of the night, wondering why this nurse has it out for us.  After speaking with Ari on the phone, trying to work out what we could do next to calm Benny, I said, it’s obviously what Hashem wants. If he’s out of the trial its Gam Ze LeTova and if it turns out ok, then B”H we will continue treatment.

Last night, I prayed the time would pass fast and prayed for a “shift change,” which occurs at 7 am.  At about 5 am, I asked the nurse if there was something I did to offend her.   She began to tell me how frustrated she was with Benny, how she’s only trying to do her job and he’s not letting her. Then she went on to tell me that some nurses connect with some families that others don’t.  Basically, we were the family that she didn’t connect with.  How horrible is that!  One thing for certain I am going to do my best to keep her away from Benny again. She is not going to have the privilege of being part of his Refuah process.   It was the only time he really screamed all week. No pulling wool over his eyes!  He picked up on her feelings  or resentment even in his sleep.

The “shift change” occurred, and in walked Cara, the nurse from yesterday. She wasn’t supposed to come in, but got a call at 7:10 this morning asking if she was coming. She said she wasn’t planning on it, it wasn’t on her schedule. B”H she worked it into her schedule, just in time to be able to get Benny ready for discharge.  I was so grateful that Hashem sent us the B’samim at the very end of our long week.

It’s strange how when you are experiencing something pretty difficult to begin with, and then you come across additional bumps in the road, their is still is hope and good and B”H this weeks outcome turned out on a positive note.

As we were told Benny would be going home, we received a text and shortly after an emotional call from Michelle, telling me her baby called out, “Mommy” and responded to her voice.  This special nurse Cara, was in the room at the time, and joined in, as we all cried.

May we all continue to cry from B’soros Tovos (good news).

Good Shabbos!

 

 

 

Nissim… The Miracles of Chodesh Adar

This just in… update of baby Refael Yoel Ozer ben Chaya Malka, by Michelle

Dr knocked on my door in hospital and told me that yo is saying daddy !!!!! He is moving his feet a little.  This is the first day of progress we saw!!! This is all bc of everyone’s Tefilloss and tzdaka !!! Please keep davening for him. We have a long road ahead but Avi and I are just holding his hand. He is squeezing my hand!!!

to add,  just hung up with Michelle,   Refael Yoel Ozer just said “Mommy.”

I can’t even begin to count all the emails of changes that people are making around the world for our little boys.  It is truly a miracle and incredible to witness and be a part of. IY”H it should just continue for all those in need of their miracle.

B”H Benny’s fever just went down and we are in the process of getting discharged.  Just in time for Shabbos with time to spare!  Thank you all for your continuos and tireless efforts.  You are all TREMENDOUS!!!

 

 

 

 

 

48 Ways to Wisdom #6 – for Refoel Yoel Ozer ben Chaya Malka

As a merit for a complete recovery for Refoel Yoel Ozer ben Chaya Malka – a precious 2 year old fighting for his life after being hit by a reckless driver.

(If you need any of the previous Ways to Wisdom posts, please visit http://www.teambenny.net/48-ways-to-wisdom/)

Way #6: Mastering Fear

Way #6: Mastering Fear

by Rabbi Noah Weinberg Roller coasters and horror movies… we pay good money to be scared out of our wits. Harness the energy of “fear” for positive purposes.

Prayer Reduces Fever

This morning started at about 4 am with fevers hitting 103 and by 5 Benny hit temperatures of 105.4.   As orders were put into the pharmacy for a cooling blanket, Ari sent out an email asking for extra prayers and having Benny in mind during davening. Within a half an hour, Benny’s fever drastically went down and that was all due to your Tefillos (the cooling blanket hadn’t even arrived).

It’s about 8:30 pm, we have 2 more hours to go of this treatment.   It’s been a very long and tiring and at times unnerving week.  We hope with Hashem’s help, Benny’s fevers will go away and we will be able to go home for Shabbos. I miss my kids, Benny misses his siblings. We just want to be home already. If I had a pair of Red Ruby slippers on my feet now, I would rub them and wish I were home sitting at our Shabbos table.

Quick update of Refael Yoel Ozer: He remains stable. The doctor’s are trying to remove the shunt which helped relieve pressure to the brain.  They believe the pressure has gone down, but have to monitor it closely. A tracheotomy is scheduled for Shabbos day. He is still in an induced coma, which give us more time to cry and pray for the best possible outcome. Please continue to have Refail Yoel Ozer in all your Tefillos.  His parents too want to be home for Shabbos.  For those of you baking Challah this Shabbos, please don’t forget to sign up. Thank you!  If you would like a special Challah card with the bracha to say, please email me and I can send you one (with Benny’s picture on it too!)

Good Shabbos!

Picture of Benny Davening. This is what he did every day.

A Revolution Taking Place around the World

One week ago Monday night there was a wonderful gathering of women from the community who came out to say Tehillim and hear words of inspiration and enjoy the voices of some very talented women in the community.

After the keynote speaker, Chavi Bauman spoke, sparks began to fly in my head and haven’t stopped. Whatever it was that possessed me at the time, caused me to get up in front of 100′s of women and ask for their help.   Mrs. Bauman’s speech primarily addressed the topic of dressing modestly and realizing that we are the princesses of Hashem. She relayed countless stories of how one inch, one small baby step can make huge differences in the world and even save lives. Mrs. Bauman talked about taking action and leaving our comfort zone.   I publicly said, I am far from the level of Mrs. Bauman, but I am willing to take the first step and try.  As a designer, I wanted to offer my services in helping redesign wardrobes in a fun and creative way. I wanted to help take the fear out of making a change, and replace the fear with excitement.

That night I couldn’t sleep. I told my husband that I need to find out where Mrs. Bauman will be speaking the next day and how I wanted to take my 13 year old daughter to hear her. (My 15 year old already heard her speak earlier in the day in her school.)

The next morning around 9 am, I received a call from a young woman who helped coordinate the event from the previous night.  She notified me that Mrs. Bauman will be speaking to the junior high girls from several schools and would like me to make the introduction. I was quite speechless and was not sure how to respond. Within a few minutes (after I couldn’t take much more arm twisting), I agreed.  I was so happy that my daughter was one of those  students who would benefit so greatly from Mrs. Bauman’s speech.

Literally, moments after I hung up the phone and agreed to speak, my husband walked into the kitchen, looking pale, and said he just got an email from Passaic, requesting everyone to Daven (pray) for Refael Yoel Ozer Ben Chaya Malka (Refael was added a day later).

Two hours later, I was standing before 100′s of students, reciting Tehillim together and  introducing Mrs. Bauman. After Mrs. Bauman spoke, I once more got up to speak to the girls and told them I will help in any way I can to make dressing modestly fun. I invited them to all join me in becoming fashion designers and told them about the workshops I envision opening in LA very soon.  I pulled out 2 skirts from my bag. One skirt was made out of two skirts and the other skirt I let down the hem right before their eyes.  I then removed a scissors from the bag.  I handed it to Mrs. Bauman and asked her to cut 1″ off my Sheitel (wig). We used this most powerful Eis Ratzon (time of Divine assistance) to cry out to Hashem and ask that he save the life of Refael Yoel Ozer and bring him the complete Refuah Shlema that he so desperately needs.  There was not a dry eye in the room.

A few hours later, I was asked to say another few words to a number of schools across town.  This time, I brought Benny and my daughter with me.  It was too early for me to take another inch off my wig, but my daughter was ready to cut an inch off her beautiful long blond hair.  By the time I was finished speaking, a few girls approached me asking me to cut their hair or help with lengthening their skirts. At first, I  declined in the cutting ceremony. I am by no means a hair stylist. plus I wanted them to ask their mothers.  They said they were old enough to decide for themselves. It truly brought me to tears and to a place I’ve never been. These girls listened to a really powerful and inspirational speech by Mrs. Bauman, internalized it and  and put it into action.  The hair was mostly symbolic of wanting to take that leap and begin to make a change.

At the time, I was pumped with an adrenaline rush. I was in a frame of mind that I will do whatever it takes to help bring the Refuah that this baby needs. I continue to be in that frame of mind, one week later and that is why I am writing this post.  We are in the time known as, “Ikvasa D’Mshicha” – the birth pangs of Moshiach – and it is up to us to just take one baby step at a time, to bring Moshiach in our times.

After the speeches, I received countless emails, calls and hand written notes of people from all walks of life, and all ages, taking action to make improvements. One baby step at a time.

The next morning, Ari and I headed to NY/NJ to be with our dear friends the Feder’s and offer any support we could possibly give.  I packed an overnight suitcase filled with inches of hair that were trimmed in her son’s Zechus for a Refuah Shlema.

Later that evening, Wednesday, there was a community wide gathering in Passaic to recite Tehillim (Psalms) for Refael Yoel Ozer Ben Chaya Malka. I asked Michelle if I should remain with her in the hospital or go. She encouraged me to go and give over a message. Michellle’s goal in life is to make Hashem proud.  All I can say is, Hashem was proud to see this gathering of 100′s of women.  I also mentioned the commitment of the young girls in LA who took upon themselves to make a change for the Zechus of a compete Refuah Shlema.

The following morning, I received a phone call to speak to the high school girls in Passaic. Once again, I declined. I was only in NJ for a day, leaving that evening. I wanted to be in the hospital to entire day.  Well as the saying goes,  man plans and G-D laughs.  Within an hour, I was standing before the high school seniors.  What they don’t know is, they think I was inspiring them, in truth, they were inspiring me.  In the days that followed, I heard many girls cut their hair an inch or pulled out some shorter skirts from their closet and bid farewell.  The concept goes so much further beyond the “one inch.”  It’s about taking action, even when there is fear, and jumping in to make a difference.

It is one week later,  the calls, emails, texts and letters  continue to flow in. I am deeply inspired and at the same time excited. I feel as if we are on  the front lines of a war and we are empowered to liberate our long, long Golus.  We can call it the Tzinius Revolution.  My Zaida Ben Z”TL used to say, when we see our children fall or go thru a difficult time, we should try and change the mindset of that person.  What if we apply that same tactic to dressing modestly. The more we protect our bodies and neshamos the more beautiful we are on the inside and out.

Unfortunately, we are all connected to someone, somewhere, who is in the midst of their own battle, whether it be illness, single hood, childless, unhappy relationship etc.  What if you were told the “magic potion”, to bring the Refuah/Geula,  will not cost a penny and is in your very own closet?  All you have to do is make one change (at a time) by going out of your comfort zone and taking action to bring more Kedusha (holiness) to the tumultuous world we live in.   Adar is a month that brings Simcha (happiness), giving us a boost to get started to reach that closer connection to Hashem.

We will be adding a spreadsheet on the site of actions being taken around the world on a daily basis to bring Kedusha to the world.  Please share your’s today!

Holding Hands

Trying to get caught up on the blog…not an easy task.  Benny has been running a fever off and on since late yesterday afternoon, throughout the night and into today.   He doesn’t like taking his medicine, but B”H cooperates for the most part. Aside from Tyelonal and pain medication, we have tried ice packs to help bring the fever down. Being that he doesn’t like the ice packs, we mostly just have to sit beside him and keep him calm and relaxed.

There was a moment last night that my eyes just swelled up.  It was when Benny took hold of my hand and squeezed it and didn’t let go. He maintained this position for over an hour.  It was the first time he held my hand without being prompted by me.  It was such an amazing feeling.  I cried.  I cried because all I can think of is the picture of my friend Michelle, holding her baby Yoel’s hand, squeezing his hand tight and praying for a response in return.  It is not by coincidence that we are in the hospital at opposite ends of the country at the same time with our son’s that are of the same age.  I know that the big picture is beyond our scope, but I feel compelled that I must take action.

I have showed Benny the beautiful picture of baby Yoel and the not so pretty picture of him now. Benny knows to look sad and even make sounds of trying to cry when he see’s him hooked up to machines. We then daven together.  Benny insists on holding his own Tehillim and moves his lips as he turns the pages. I can’t imagine a more meaningful davening then one two year old in need of his own refuah  praying for another.

Refael Yoel Ozer is in need of all of our prayers. Speaking with Michelle earlier brings back  feelings I never want to relive. The week that Benny was diagnosed but had not yet begun treatment was grueling.  If only he would be able to start his healing process, I would be able to even think about breathing again.   Baby Yoel is currently in a critical state. The doctors were hoping by now to be able to begin the removal of certain machines. They made several attempts to clamp the shunt, but the pressure builds in his head and it is too dangerous for the brain.  The doctors don’t want to leave the shunt in too long either because they are worried about an infection Chas Veshalom.  The same goes with the ventilator. The doctors will most likely put in a tracheotomy because having him on a ventilator for a long period of time is not good either.  Michellle and Avi know and are trying to mentally prepare to battle this thru this long journey ahead of them, but they need to be able to start the journey of Refuah already.  This in limbo is excruciating!

This past week I have done things that I never thought were in me to do. I feel like I am at the scene of this horrific car accident and Hashem has given me the strength to lift the car off this child, to help save his life. It has been almost 10 days and I am still holding up the car.  My hands and arms are weary and I am running out of strength.  I need help!  We all need to reach out and hold up this car together. It is not enough for three, four, five or six, we need thousands and millions of people to help.

It became clear to me this week why Benny was given this specific cancer to battle and win. The cancer that Benny “had” IY”H, affected his sympathetic nervous system.  Which ultimately controls a person’s adrenaline.  B”H Benny’s adrenaline has not been affected in the negative, not for one moment. It actually had the opposite affect. Not only is Benny active and vivacious, thru his Zechus, family, friends and complete strangers have become active.  There is a surge of adrenaline that has overtaken communities world wide.

Last week, when I got the news about baby Yoel  and details began to unfold, I realized that we had to use press down full throttle to do everything in our power to help.  Baby Yoel has suffered a severe head trauma, and it is a true miracle that he is alive.  The head/brain represent the wisdom of a person. It controls the body’s functions.   There are two babies on opposite ends of the country each representing  parts of us that require action.  We know with our minds what we have to do, we have to act with our adrenaline to put it into action.

I would like to share with you what has transpired this past week.  I will post it as it’s own post though. It is lengthy and continues to change day by day.

 

 

 

Former Patients Now Visitors B”H

(This post was written last night, however, the computer froze in the middle and I fell dozed off, so now I will rewrite some of what I can remember).

This morning Benny was set free for a couple of hours. He enjoyed play time in the music/art room with musical instruments and stringing beads.  At about 11 am he was reconnected to begin today’s infusion.  B”H he was able to tolerate the medication most of the day without side effects. As the afternoon progressed, Benny spiked a fever. It has been up and down now for several hours.  Fevers are expected as one of the side effects during this treatment (we were hoping that this wouldn’t happen).

I thought I would share with you the B’samim (spices) that Hashem sent throughout the day. Of course the visit from his Bubbie, Zaida and great aunt Ayala and auntie Shira were the highlight of Benny’s day.  We also had visitors from Chai Life Line and Bikur Cholim.  There were dozens of other’s wanting to come, however, I told them Benny really up to visitors at this time. The most important thing is to keep Benny relaxed and not agitated.

Earlier in the morning Benny and I had a chance to stroll the hallways. It was then that we bumped into an “old buddy, Brody.”  They had just come up the 4th floor to visit the nurses.  Brody is just turning 2. He was one of the first kids we met during our very first hospital stay. At the time, his parents did not know his outcome. He had been in the hospital for months.  Yesterday, he came in for an outpatient visit to go over his 6 month scans.   They were “great” scans Thank G-D.  Then about 15 minutes later out of the elevators comes Kate. A beautiful 14 year old, also a patient in the hospital during our first hospital stay.  She had a rare tumor at the time. Yesterday, with a head full of thick gorgeous hair, she was reviewing her 9 month “clean” scans.  I truly believe that Hashem orchestrated these visitors, as we begin our final phase of treatments, as a sign that IY”H Benny too, will be coming back as a “visitor” and not as a patient.

48 Ways to Wisdom #4 – for Refoel Yoel Ozer ben Chaya Malka

As a merit for a complete recovery for Refoel Yoel Ozer ben Chaya Malka – a precious 2 year old fighting for his life after being hit by a reckless driver.

(If you need any of the previous Ways to Wisdom posts, please visit http://www.teambenny.net/48-ways-to-wisdom/)

Way #4: Introduce Yourself to Yourself

Way #4: Introduce Yourself to Yourself

by Rabbi Noah Weinberg Don’t go through life making assumptions about who you are. Take time now before a crisis comes along and forces the issue.

48 Ways to Wisdom #3 – for Refoel Yoel Ozer ben Chaya Malka

As a merit for a complete recovery for Refoel Yoel Ozer ben Chaya Malka – a precious 2 year old fighting for his life after being hit by a reckless driver.

(If you need any of the previous Ways to Wisdom posts, please visit http://www.teambenny.net/48-ways-to-wisdom/)

Way #3: Say It Out Loud

Way #3: Say It Out Loud

by Rabbi Noah Weinberg Articulate your beliefs out loud, and find out if you really believe what you say.

Rosh Chodesh Adar

B”H we had the force of Rosh Chodesh Adar to help us thru the beginning of this intense treatment.   Our doctor and countless nurses tried to prepare us over the last several weeks, of what might occur. I have found it very difficult to prepare for the possibility that Benny could have intense pain. A pain like no other. B”H we are grateful to report as of 8 hours into the treatment, Benny is comfortable. He was in good spirits throughout the day and is now resting.  We pray that all of our’s/your’s Tefillos and merits continue to work to help Benny get thru what he needs to do, without any side effects.

To update you on Refael Yoel Ozer on the east coast:  Yoel remains stable B”H.  The CT he took earlier shows multiple (many, many)  fractures in his skull and face.  The details are too graphic to share, but know, they are serious.  The doctors are saying he will most likely remain in the intensive care unit for the next month and if he is well enough after that, be moved to a rehab facility to continue with the healing process.  This could take anywhere between 6-12 months. Then the doctors are talking about multiple surgeries down the line.  The doctor’s are going to try and gradually take Yoel out of his induced coma, and only then, can they see if Chas Veshalom Yoel has suffered damage to his brain.   I can’t beg you enough on behalf of Michelle and Avi and all the family to do what you can to help make baby Yoel the miracle baby that comes out of this coma without “a scratch.”  If Chas Veshalom they are faced to travel on a long hall ahead of them, that they are given strength, support and the endurance to make the trip.

It is hard to fully focus on Benny, when all I can think of is Yoel, Michelle, Avi and family.  So instead of excluding Benny, I periodically, show him pictures of Yoel, the pretty and not so pretty. When he see’s the one of him in the hospital lying in the intensive care unit, you can clearly see on his face, the pain Benny feels for him. He even blew Yoel a kiss.   If Benny can feel for him, how much more so, we can.

Chodesh Adar, is a month representing Simcha, happiness. Please take a moment out of your day to do something to add Simcha to the world. “Don’t worry Be Happy!”  Thru your Simcha the Refuah will come.

The Crossing Guard

The Crossing Guard

I have a newfound respect for the crossing guard.  After another sleepless night, this time thinking about my friend’s baby, for some  strange reason a crossing guard enters my thoughts.

Although, this horrific accident could not have been prevented by a crossing guard, it got me thinking to how many of our children on a daily basis are shielded and protected by these individuals.   They put their lives on the line every single day, day after day, year after year, and some decade after decade. They not only stand on a corner holding a STOP sign, they enter into the middle of the intersection, holding a STOP sign, or their hand up as our precious children cross the street, going to or from school. They are not doctors or nurses, but if you think about it, the end goal is the same, protecting our children and helping save lives. WOW!

Some of these crossing guards have worked decades. Showing up early every morning, standing in the rain, snow and100 degree weather. To top it off, they are wearing a SMILE. Maybe they know they understand the true meaning of life. They understand that being a crossing guard is not a career, but it is who they are as a person. It defines them as a sincere, selfless, caring person who receives great satisfaction when doing for other’s. What is more rewarding than seeing the smiles of these magnificent children day in and day out, especially after the bell rings and class is dismissed for the day!

There is one guard in particular at my children’s school who loves Benny and always cheers, “Team Benny.”  He’s not even a student there, YET!   When we were collecting for Super Storm Benny to benefit Hurricane Sandy victims, this guard was the one who loaded the boxes into the truck.  WOW!

I salute you and all the guards around the world.

I beseech of YOU, Hakadosh Baruch Hu to be the Ultimate Guard and watch over all of us day and night from any harm.

48 Ways to Wisdom #2 – for Refoel Yoel Ozer ben Chaya Malka

As a merit for a complete recovery for Refoel Yoel Ozer ben Chaya Malka – a precious 2 year old fighting for his life after being hit by a reckless driver.

(If you need any of the previous Ways to Wisdom posts, please visit http://www.teambenny.net/48-ways-to-wisdom/)

Way #2: Listen Effectively

Way #2: Listen Effectively

by Rabbi Noah Weinberg

When the media hits you with another message, don’t take it for granted. Analyze and question.

Symbolic gestures

We crossed over the threshold and into the hospital room.  Benny was so cute. He wanted to wheel his suitcase down the hallways of the hospital, but when it came time to get out of the elevator on the 4th floor, he didn’t want too. ( I don’t know how he knew what was down the hall and thru the doors.) He’s smart and picked up that neither did we!

It’s been a long while since we are back in this part of the hospital. Hashem orchestrated His magic and sprinkled His B’samim ) spices already early on this visit.  We were assigned the first room that we ever had when Benny was first diagnosed.  If you religious blog followers remember it is the room with the “Eagle” above the bed.  This time we noticed one extra bonus, there was a misplaced sticker put of the on the tv monitor. The sticker is a “locust.” (you will have to go back to the beginning to find the significance) .  It was at that moment that my husband and I looked at each other and felt Hashem is with us every step of the way and IY”H Benny will be just fine.   We also got one extra bonus, a room with a view, a gorgeous view of the skyline of downtown LA.   Thank you Hashem for the small but huge symbolic gestures.

Benny is a few minutes away (12:30 am) from receiving a blood transfusion.  This should help prepare his body for the intense treatments that will begin around 10 am IY”H.   Please Daven that this blood be a good match. Please Daven that tomorrow’s treatments and the next few days go smoothly, without complications and do what they are intended to do. Heal Benny 100 % IY”H.

Benny : checking in

Video of Benny enjoying the view accompanied by Elmo in the background : enjoying the view

 

The next phase begins…

Dear Family and Friends,

Today, on the first day of the auspicious month of Adar, Benny begins what we hope will be the final phase of his arduous journey to a complete recovery. Over the next 5+ months, Benny will receive 6 cycles of immunotherapy designed to target any remaining cancer cells and eradicate the disease for good. While these treatments come with risks, and are unfortunately known to be quite painful, they are, BE”H without long term side effects.

As we move into this next phase, we ask each of you to redouble your efforts on Benny’s behalf – to ask Hashem to allow Benny to have the strength to endure these treatments, tolerate them well and with the least amount of pain possible. Most importantly, please have in mind in your tefillos that these therapies should be effective and rid Benny of this illness for the rest of his life.

As Faigie and I have mentioned in the past, we can’t thank you enough for all you have done for our family to date. We once again ask for your help in this time of need.

With love,

Ari and Faigie Brecher and family

48 Ways to Wisdom #1 – for Refoel Yoel Ozer ben Chaya Malka

Dear Family and Friends -

Many of you have read the posts about our dear friends’ child, Refoel Yoel Ozer ben Chaya Malka who is in a coma after being hit by a reckless driver while coming out of his playgroup. The doctors are waiting for the swelling on his face and head to go down before they can assess the level of brain injury they may be dealing with. As a zechus for his refuah, we are asking people to take on learning the 48 Ways to Wisdom (based on a mishna in Avos) written by Rabbi Noah Weinberg (ZT”L). 48 is the numerical value of MOACH – in hebrew – the brain. May this learning be a zechus for a complete refuah for this precious little boy.

We will send out one of these links each day.

Please, please, please have in mind that it should be a merit for a complete refuah for Refoel Yoel Ozer ben Chaya Malka.

 

Way #1: Be Aware of Every Moment

Way #1: Be Aware of Every Moment

To achieve significant results in life, the effort must be constant. Don’t waste a minute.

by Rabbi Noah Weinberg

Erev Rosh Chodesh Adar

B”H this Shabbos was restful. Not only did we have to recover from this past weeks events, we need to store up for the week ahead. Benny took a 4 hours nap. I hope he’ll sleep tonight!

Refael Yoel Ozer remains stable. He made a few movements in his feet, produced one tear and even tried coughing.  Dr.’s aren’t sure what those movements were and will know more IY”H when they begin to ween him off his sedation medication. IY”H we pray that these movements are positive signs only. Please continue to pray hard during this Eis Ratzon for a complete Refuah Shlema Min Hashamayim.   I can honestly say, from the dozens of emails I have received of people being m’kabel something he will IY”H have the refuah he needs. 

We spent about 3 hours on Friday in the hospital going over the plan for next week, getting blood work done and a routine exam.  B”H Benny was given the green light to begin.  We are in this now 10 months and still frightened with each new phase of treatment we enter.

We have been to the hospital too many times to count (good thing my insurance company is keeping track).   We are scheduled to check in tomorrow evening IY”H.  I am not sure how to prepare, other than packing a suitcase of “stuff.” How am I going to cross the threshold into the hospital room?  Although, it is only for 5 days, if all goes well, we were told that it won’t be a restful period.  Benny will be examined, vitals etc. for sure, every hour during the day and night and possibly every 15 minutes.  The goal is to keep him out of intense of care IY”H.

In today’s day and age there are quite a few game shows out there.  Some of the themes are;  a race around the world,  losing weight, finding a your mate; surviving in the dessert or some other crazy place.   With each of these shows the contestants go thru numerous challenges; gory, strenuous, and tempting. All these shows share one thing in common, the end goal, to WIN.

Benny has been thru so many challenges already, all difficult and for what, you may ask? To win. To win what, you may ask? The answer is simple, LIFE!

We hope and pray that with this final phase of treatments, Benny will no longer have to fight to live. We pray he will live a long and healthy life with the “normal” challenges that life brings.  Let his challenges be in, figuring out the answer to a question in the Gemara (learning) or how to score a home run when the game is tie.

What we as outsiders are challenged with is what are we going to do to help? How are we going to take action on his behalf and all the cholim that are in need of our help?

I am working on having a column on the website for daily ACTIONS being done as a zechus for all cholim in Klal Yisroel.

A Good Rosh Chodesh to all!

 

 

 

B’Somim Spices

(this post is written over two days)

It’s Feb 7th, 10 pm and we are on the plane going home. At this point not only my fingers are numb, so are my feet, bones and most of all my emotions.  I am not quite sure that I will be able to finish this post in such a short time (5 plus hours), but I will give it a try.

There is no way to adequately give over what the Feder family is going thru, what the entire community of Passaic/Clifton are experiencing, and what my family is enduring.  The shock is real, but at the same time not to be believed.

I’ll start off by giving an update.  Refael Yoel Ozer is critical but stable condition.  The pressure in his head has decreased slightly B”H and his blood pressure is going down as well. There is still significant swelling and continuous drainage.  We won’t know much more until he is taken out of his induced coma, which can only occur when the swelling dramatically goes down.

Last night I finished the post well after 3 am and could not fall asleep until closer to 4.  Way too much to process!

This morning I received a phone call to speak in the local girls high school.  I declined multiple times. I was only here for a precious few hours and I wanted to spend every moment at the hospital.  But for some reason an hour later I was addressing the seniors about our situation today and the power we have to help.

As of 3 days ago, I never just got up and addressed of hundreds of people speaking about change.  I am still playing back to how it all happened and what possessed me to get up without even being asked.

Tuesday night, I heard an amazing lecture  by a woman, Mrs. Chavie Bauman. She was basically saying that change is uncomfortable.  It’s uncomfortable to change outside of your comfort zone.

Feb. 8,  11 am  Erev Shabbos

Unfortunately, the my computer ran out of power after only 45 minutes.   It turned into a very long flight.   I couldn’t sleep, and had no interest in doing all those things you do on planes, read magazines or watch movies. Instead I just cried and cried and cried some more.

Then after about an hour I see a tall man in his early 30’s standing by the lavatories doing the most interesting stretches.   Being that I was so tense myself and felt pains all over, I began to study the exercises.  At that point I just had to get up, go over to him and ask him if those were Yoga exercises.  He told me no, and that he was in a car accident (not even sure how long ago) and this Chinese acupuncturist gave him these exercises to help with the pain in his shoulders and back.   I thanked him. He asked me if everything was ok.   I think he may be sorry he asked that question, because the flight just got an hour longer for him, but shorter for me!  I answered no!

I told him all about the last 48 hours….having now two children on opposite ends of the country fighting to live…He asked me my son’s name.  Another mistake on his part (added additional time)….I told him all about Benny and his namesake (that took about 30 minutes alone.  He said he would pray for Benny and Yoel.  Then I asked him his name.  He said Efraim.  I froze for a moment!  Then continued the conversation asked if he was coming to visit family.  He said he was coming to celebrate his friend’s birthday, his friend’s name, is “Benny.”  Again, I froze.   I then asked if it was a big birthday. He said “32.” I said “a party for 32? Not like 25, 30 or 40, 32 a party. Interesting!.”  He then said, “32 is Lev (heart)”.   Once again, I froze.

I apologized for chewing off his ear and thanked him for being so kind to listen to my many stories. He in turn thanked me and told me that he was really moved and got him thinking. I gave him Benny’s website address if he wants to follow and become a Team member. I hope he does.  The END.   Although, who knows, it may be just the beginning.

A few weeks ago we went to the Torah M’sora convention. One of the speakers spoke about the B’samim (spices) in our lives.  When Yosef was sold he was sold to a spice merchant.  It was Hashem’s way of saying that even though things are difficult, Hashem is going to be with you every step of the way.

Life is filled with difficult challenges, but they are also filled with spices. We have to do our best to look for them and smell them along the way.  The smells of the spices, especially B’Samim can revive the Nefesh & body simultaneously.

This past week has been one of the most frightening rollercoasters rides ever built. But at the same time, Hashem sent the B’Somim.  Bumping into Rabbi Feder before we even got to the hospital, and ending the trip with meeting Efraim on the plane who is going to pray for Benny and Yoel.

I wish you all a Good Shabbos and when you make a Bracha on the B’somim this Motzei Shabbos, have in mind that Hashem should continue to send B’Somim your way and that you are able to see it when it arrives.

Please have in mind baby Yoel as you learn, daven and do all those activities that are required by the brain.  Those same activities that IY”H Yoel will be able to do when he comes out of the coma IY”H. May Hashem give him a complete Refuah Shlema Min Hashomayim without any side effects.

This coming Sunday evening we head back to the hospital to begin Benny’s final phase of treatments IY”H.   This next phase, if all goes well is a 5 month plan. I will go into further detail next week. Please continue to have him in your Tefillos, that this next phase is successful IY”H without any side effects.

Good Shabbos!

Life’s Mission – Make Hashem Proud!

(this is a revised post – Proud in addition to happy!)

It is 1:43 am as I finally am able to sit down and update.

I was told a while back that people saying Tehillim for a Choleh should be updated daily as to his/her condition.  Good news brings encouragement and hope that their Tefillos are working and IY”H will continue forward.  The good news I have to report tonight is that IY”H our Tefillos our Zechusim our tears are being gathered in Shemayim (in Heaven). Refael Yoel Ozer Ben Chaya Malka has remained about the same since yesterday, which is good in that it did not get worse.

We landed this afternoon at JFK, rented a car drove straight to the hospital with one detour. We stopped in Teaneck to get some food for Michelle (Chaya Malka), (who has zero appetite, unfortunately, we know that all too well), and for ourselves.  The reason I am telling you this is, as we parked and began walking into the cafe, there is Rabbi Avi Feder. He also went to pick up food for his wife, not knowing we were there. NY/NJ is big, very big.  What are the chances bumping into someone from a different neighborhood. What are the chances Rabbi A. Feder being the first person we see? You tell me!!!

That is Rabbi Feder, in the midst of the most excruciating challenge of his life, he is fulfilling Hachnosis Orchim, and making sure his wife has food to eat, in case she wants too.  Makes sense, being that his name is Avrohom.  I said to my husband today on the plane, if you look into the Feder names Avrohom Elimelech and Chaya Malka, both second names represent royalty. They truly are a KING and QUEEN.  We must all unite together to do what we can for their precious child, the son of royalty, Yoel Ozer Ben Chaya Malka and the entire family.  He is our child too.

It was a Bracha seeing Rabbi A. Feder outside of the hospital first. An hour later we made it to the hospital and then the shock that was felt yesterday became all too real.

NO PARENT and I REPEAT, NO PARENT should ever have to see or experience his/her child in crisis, in trauma, in a hospital bed fighting to live.   When we say the Bracha Pokeach Ivrim, we should have in mind that our eyes be blessed by seeing only sweetness in this world. Let parents, grandparents only see Nachas, good health and Simcha in their children’s lives. Please Daven that Chaya Malka and Avrohom Elimelech wake up in a few hours to see their beautiful baby with the Simcha that they are so worthy of.

I had no idea what I would say to Michelle when I saw her. After crying for a while we sat down and I shared with her what the Los Angeles community has done and continues to do for her son.  I told her of the many other cities as well. It brought her tremendous comfort and I hope, HOPE!

This evening there was a Tehillim gathering for the entire Clifton/Passaic community for Refael Yoel Ozer Ben Chaya Malka. Hundreds and hundreds of women came out late into the evening with their Tehillim and tears to do what they can, Daven (IY”H I will share this too in a few hours).  I was torn what to do, leave the hospital to attend this gathering or stay at the hospital. I went for one reason only, to deliver a message from Chaya Malka.  Her message was, “her mission in life”. Her mission in life, is to make Hashem proud. To raise her children so that Hashem will be proud.

How could Hashem not be proud after an evening like tonight? How could Hashem not be happy with the incredible changes people are doing around the world as a Zechus for Refael Yoel Ozer Ben Chaya Malka, speedy and full recovery.  Mi She Nichnas Adar Marbim BeSimcha, is around the corner. Please help bring joy back into the Feder family today! Please Hashem make it Your Mission, make Chaya Malka Bas Leah Frumit happy.

It was extremely difficult walking into this gathering tonight. I have been yearning to return “home” for so many months now to see my dear friends, whom I consider family. And now I had the opportunity to see everyone, but under these circumstances. Definitely, bitter sweet.

B”H, H,ashem eased the difficult pain of this journey by allowing Benny to be happy with the arrangements that we set in place. I have never left him for even one night since last April. When I called home tonight, they said he was having a ball. I hope and pray he will be OK IY”H tonight as well ( I am not there to sleep by his side).

 

Heading Back East…

(written a few hours ago…we’ve landed safely B”H and on our way to the hospital)

Ari and I, are on the plane now heading to NY/NJ to be M’Vaker Choleh (visit the ill), Refael Yoel Ozer Ben Chaya Malka and his parent’s.  I want to believe with all my heart and soul that Yoel (as we call him) will have a complete Refuah Shlema without any side effects.   I want this to happen even before this plane touches ground.  I want to be going in today to celebrate the “good news.”  While I try and work on to have Emunah (belief), at the same time I am so frightened

After communicating with our friend, Rabbi Feder late last night, he wrote to me, “it doesn’t look good”.    He went on to say, that the Dr.’s say there may be damage to the brain Chas Veshalom (G-D Forbid).   I think back daily to the time when Benny was first diagnosed and what the doctors had to say.  I was given the most valuable advice at the time from a dear friend, “When you hear good news… Thank the Ribono Shel Olom (G-D), When you hear news you don’t want to hear… they are not the Ribono Shel Olom (G-D).”

For the past two hours I am sitting here on the plane thinking what I can possibly do to help out in this situation. What I should say or when to remain silent, when to cry or when to laugh, it all boils down to what are we going to do to make things LOOK GOOD.

These next few days are critical. Yoel is in an induced coma to allow the swelling in his head/brain to go down. These next few days are a Bracha in that the diagnosis is unknown.  It is well known that learning Torah sharpens the mind.  If at any point throughout the day you learn or your children are learning please have in mind Refael Yoel Ozer Ben Chaya Malka, that IY”H he too will be able to learn everything that you are learning. He too will be able to walk and talk, dance and sing.

I am not an author, nor in the position to write about this special, holy family. It is a story, one long, long, long story of battles and triumphs that can fill up the entire New York Library, but if you knew (probably wouldn’t believe),  you would do what you can to make things “LOOK GOOD.”

Hashem Please Have Mercy on Refael Yoel Ozer Ben Chaya Malka, his mother Chaya Malka Bas Leah Frumit (also in need of a complete Refuah Shlema ) and his father Avrohom Elielech Ben Nechama Esther (survivor from cancer as well B”H).

Refael Yoel Ozer Ben Chaya Malka

(Please read second post first….below “Chloe & Cleo”)

 

My hands tremble once more, (B”H is has been a long while and I hope to never tremble like this again).

This morning I woke up to an email that was sent from my community across country, Pasaic/Clifton, to please daven for Yoel Ozer. Refael was just added a few hours ago!

Shocked is not the word. My best friend’s two year old child was hit by a car. Baby Yoel is just a few weeks apart from Benny, his buddy. (I write my best friend, because she is and so is everyone else that meets her). My best friend, Chaya Malka Bas Leah Frumit is in need of her own refuah as she is battling cancer for the past 20 years. She just got out of the hospital less than 2 weeks ago from getting over pneumonia.  Refaell Yoel Ozer Ben Chaya Malka is in critical condition with a severe head trauma. We need to do everything in our power to bring this precious child back to his parents. I don’t have the answers to what is going on in the world, I just know we have the power to stop it.  Big or Little, Enormous or Tiny, make a change and it will make a difference. I don’t know how, but I know it WILL!

Please take time in your day today to daven for Rafael Yoel Ozer Ben Chaya Malka and Chaya Malka Bas Leah Frumit. This family needs us now more than ever.

Below is a picture taken 2 + years ago when five of us friends living within one block of each other had babies within 6 weeks of each other. Baby Yoel is on the right. Benny is center. Ruthie (who was at the scene of the accident at the time was B”H not injured Chasdei Hashem).

 

Chloe’ and Cleo

 

I have two very different posts this late evening. I always try and share something good about Benny if I can. B”H yesterday and today, Benny felt really good.  He had two special doggie visits as a form of play therapy back to back, yesterday and today. The magnificent white poodle that came over yesterday for a play date is Chloe’.  The larger adorable poodle this evening is Cleo.  You had to hear Benny call her name. It was the cutest thing ever.

watch the video’s below:  Looks like dog therapy is the way to go! Ruff Ruff!

Chloe

Cleo1

Cleo

I have a great deal more to add, but that will have to wait until tomorrow IY”H when I am on the plane (I have to wake up in a few hours for a 6:30 am flight!) We are going to visit Refael Yoel Ozer Ben Chaya Malka IY”H

The second post this evening is extremely difficult to write and probably read, so therefore I decided to split them in two.

 

 

Musician, Singer, Dancer, Conductor – Take you Pick!

B”H, Benny continues to enjoy his time at home or on trips around the neighborhood. I think his favorite outing is going to Shul and one of his favorite indoor activities is listening and dancing to music.

Last night we were once again privileged to hear a live performance in our home from the very talented and well known vocal artist, Efraim Mendelson from Israel.  I am not sure why he was in town, but he should just know that after his concert last night for Benny, he was successful in his journey to America.  He brought so much joy and happiness to Benny that even after he left, Benny stayed up dancing for another 40 minutes until 11:40 pm. I could have watched him all night long.

singers1

singers2

bennydancing1

bennydancing2

playing the keyboard

conductor

We are currently selling tickets for Benny’s live performance IY”H very soon.

The 5 Second Rule!

B”H this did not break in my kitchen, nor did I drop it. It happened in the supermarket Thursday night.   While I felt bad for the employee who was stocking the Gefilte fish, I did feel better knowing I was not the only one dropping or making a mess of things that night.    It was just an hour earlier that the bread machine went flying and so did the flour, sugar, eggs and oil. I was multi tasking at the time, and instead of saving time, it cost me!  In the past if something falls on a “clean” floor, the 5 second rule applies (pick it up, see if it’s clean, maybe even blow off dirt -ewh! and continue).  When Benny was diagnosed, one of the first things we were told is the 5 second rule no longer applies.   Don’t think I really needed to be told, we never used this rule anyway, unless perhaps it was the last piece of some delicious chocolate that was imported from Belgium and fell on the floor!

So, there I was in the grocery store, late Thursday night buying some more ingredients for Shabbos.  Fortunate for the company on Shabbos, all the food was very fresh and clean :) . As I began to load the groceries into the car, I noticed a long sharp nail on the ground near one of my tires. B”H, Hashem opened my eyes and allowed me to spot the nail before it pierced my tire.  At that point, it hit me…the Five Second Rule!  If I had not looked around my surroundings for a quick 5 seconds, then it would have cost me, not only monetary but time.

The Five Second Rule, goes way beyond the food falling on the floor. It can apply to just about anything in our lives.  For example, wait 5 seconds after the light turns green to make sure the intersection is clear before you proceed.  When the doctor said the rule no longer applies to foods going inside the mouth, I thought about applying the same rule to what comes out of the mouth.  I am not referring to food though!  What about applying the Five Second Rule to speech. It can

be 5 extra seconds to take before reciting Tehillim (Psalms) or Davening (prayers) to think about what you are about to say. Those 5 extra seconds can also be applied to our conversations. Is what about to come out of our mouths clean? Or can it Chas Veshalom (G-D Forbid) cause harm, to ourselves and to other’s?  Five Seconds is not a great deal of time. It is something we can all handle and yet it can save many, many lives.

As a Zechus for Binyomin Chaim Ben Faigie Sarah and many other Cholim, please try and find something positive in your life to apply this rule too!

To all our Team Benny members, please feel free to share your Five Second tips and stories with us all.  Thank you!

 

 

Genauer Country

Spending Shabbos with my own children is Seattle was quite moving. Seeing my boys Daven in the place where their great-grandfather, great uncles, and Zaida sat brought back many childhood memories. Even memories of getting candy from Mr. Frand (Rabbi Frand’s  father O”H), the candy man. And oh how my Zaida would have loved to hear Ari Davening Musaf for the Kehilla (congregation).  After davening, I had a chance to sit in the place where Zaida Ben O”H davened and tap into Zechus Avos.  What greater access point to plead our case, then where my Zaida spent years, decades, davening to Hashem.

IY”H may the Tefillos of all our ancestors be a Zechus for a completer Refua Shlema for Binyomin Chaim ben Faigie Sarah.

Last night in Seattle, we had a special Melave Malka hosted by cousin Esther and Michel Friend, for all the Genauer cousins in Seattle ( in town).  When many Genauer cousins get together, we refer to it as Genauer Heaven and just so happens it was in Genauer Country. Benny and siblings had the privilege of meeting their great great Aunt Ruthie and listening to old time stories.

 

Today we spent the day touring the sights of Seattle which included the famous Space Needle, the Science Center which included the butterfly exhibit, and the Chihuly Glass Museum

While viewing the butterfly exhibit, as soon as we entered the room a butterfly flew directly on to Benny’s cap and rested there for several minutes. The butterfly was drawn to Benny and Benny did not seem to mind. This brought back great memories of Benny holding the butterfly months ago. It also reinforced what a butterfly stands for and that is regrowth, renewal, rebirth…life.  Quite appropriate being that we just celebrated Tu Bshvat (the birthday of the trees….nature).

Benny at the Sceince Center

Chihuly Glass Museum

Space Neeedle

watch video of butterfly resting on Team Benny Cap: butterfly

Benny looking for butterfly under sign : butterfly1

The all time favorite for Benny and for Zaida O”H is/was “The Porch.”  A place that allows for direct access to Hakodesh Barucho,  just my opening your eyes and seeing the magnificent glory of Hashem’s world.

 

Winter Break in Seattle

I cannot begin to describe the feeling of being in Seattle, staying in the home where my grandparents used to live.  Thanks to cousin Etzion and Marlene, the house remains in the family. They have done an incredible job preserving the house just like my grandparents kept it.  Unfortunately, Bubbie’s rice krispy treats have disappeared.

Although, the wonderful memories are very much alive of my childhood, being here with my children and creating new memories are equally gratifying.

Outside of my Zaida Ben’s O”H study where he learned countless of hours, and gave Shiurim to hundreds, his second favorite place was his porch.  The porch was a place where my Zaida paced back and forth with a toothpick in hand, thinking, concentrating, enjoying the beauty Mt. Rainer, and most of all connecting with Hashem.   (Refer back to my blog of climbing a mountain.  I once attempted to climb Mt. Rainer, but was not very successful. The altitude affected by breathing, so I left.)

My Zaida O”H had incredible insight and wisdom. He knew what to say, when to say it and how to say. No question was too big, too little or unimportant for him to answer. He validated all of our concerns and always answered with a loving smile.

Seeing Benny walk and run in the footsteps of my Zaida (his namesake) made this trip worth it.  Benny even found a toothpick.  He wasn’t quite sure what to do with it and I had to take it away when he started to place it up his nose. ouch!

My Zaida was the best tour guide in Seattle.  I am doing my best to show my children what I remember Zaida Ben O”H showing me. Enjoy the collage of pictures.  And yes, we were fortunate to see the mountain!

Benny flies the plane

Seattle Museum of Flight

At the Seattle Aquarium   WATCH VIDEO OF THE SEA OTTOR FEED: Aquarium

Riding through the Seattle Locks (my Zaida’s favorite place)

Benny drives the Bus – He even hummed the “Wheels of the Bus” the wipers of the bus go swish swish swish…

Pike Place Market

Yehoshua was mighty brave holding an octopus.

Watch video of pikeplacefishmarket

Have a Good Shabbos!  Have Tu’Bshvat

 

Complain about what?

This past Shabbos we were privileged to have attended the Torah Umesorah convention in Los Angeles. We were Zoche to be among 100′s of very special individuals who spend hours and hours a day, weeks and years with our children.  The atmosphere was truly inspirational as a result of the holy men/women that were there and the incredible speeches and words of Chizuk (inspiration) spoken.   I hope I have elaborate soon on the speeches.

Today, Benny enjoyed the morning with a visit from his cousins and later attended his brother’s science fair at school. Benny loves going to school, he seems to be the most popular kid in school and never spent a day there. Even the security guard is on a first name basis with Benny.

Tomorrow, is a big day IY”H.  I wish I could say it’s all going to be fun. The morning starts off pretty early with a 5:30 arrival at the hospital (in less than 5 hours). Benny will be undergoing a bone marrow aspiration test.  We pray with Hashem’s help that Benny passes this test 100 % with a ZERO!  (Zero, bad anything, if you get what I mean!)

Tomorrow afternoon, is when the excitement begins IY”H. We will be going on our first family vacation since our new journey began last April.  We are taking the kids to Seattle, WA. For those of you who don’t know, Seattle is where I was born and partially raised. My great grandfather Zaida Moshe, settled in Seattle in 1907.  My Zaida Ben O”H (whom Benny is named after) was born there in 1913.   I am so excited to show my kids around and introduce them to my great Aunt Ruthie, and visit with Uncle Melech & Aunt Chanie, and many cousins; stay in Zaida and Bubbie’s house O”H (thanks to cousin Etzion and Marlene); and possibly meet Sus (the famous horse). “Sus, was Zaida’s (imaginary) horse that lived in the garage. Every time we went down to see him and he wasn’t there,  Zaida said,” he must be swimming in the lake!” I look forward to relating and hearing many, many family stories from the family.

The part I don’t like and sometimes complain about is the packing. Deciding what to bring:  warm clothes, cool clothes, too much! too little!  I wish I could just go somewhere and have everything I need there, without having to bring it.   Benny did his best to help out a little.

I used to think, ” why am I  complaining at all? There are many less fortunate that are not going away and would love to have such problems as deciding what to pack etc.”  But then I thought to myself, that it should be the greatest Bracha and that this should be the worst thing Hashem gives me to complain about.   I guess the ultimate test is not to complain at all, but if you happen to be the recipient of a test in life, I’d rather have it be what to decide to pack then have a test that requires anesthesia. Even in the test of packing, one can be thankful to Hashem for giving you the ability to pack, having what to pack, packing under the weight restrictions and even giving you space in your suitcase to bring back souvenirs that you don’t need!  THANK YOU HASHEM! Thank You! Thank You!

Watch the video of going to seattle

4 hours until I have to get up…. good night!  Please have extra K’vana in your Davening tomorrow. Binyomin Chaim Ben Faigie Sarah

 

 

 

B”H the Scans look Good!

Today, was a day of incredible emotions. I have thought for hours how I can write about them and in fact asked Ari to write tonight’s post, but he declined.

This morning we were scheduled to be in the hospital at 7:30 am for a test called MIBG. It basically is a two hour scan of the body that can detect and light up cells that we don’t want to see exist  in the body. Benny, got up by 6 am wanting to be fed, but I had to tell him, “I am so sorry, not now, after the hospital.”  Benny had to be under sedation for this test, and as you know NPO – nothing by mouth, for at least 4 hours prior to sedation.  Just when we thought those days were behind us…. hopefully not too many more of those, although, he is scheduled for one more next week!

During the two hour scan we were given the opportunity to be M’Vaker Choleh Elimelech Ben Basya who was hospitalized last night for a fever. ( I would not post this information unless it was already posted on his website, www.eligradon.com).  Please have him in mind in your Tefillos for a full recovery, and that in the meantime he will be able to go home and be with his family for Shabbos.   Shabbos is so much better at home!

As we continued to wait, we received an email from our Dr.’s office asking us to meet her after the scans.  We knew she had the results from yesterday’s CT, but figured since we didn’t hear anything, “no news is good news.”

After Benny woke up from anesthesia we proceeded to go to the clinic (outpatient hospital care for oncology patients).  After about an hour of waiting, the doctor entered the room with two head nurses (the social worker was on the floor too).  B”H our level of nerves subsided within minutes after the doctor uttered the words, “the scans look good!”  BARUCH HASHEM! (THANK G-D!)

The remainder of the day continued to be filled with Simcha (happiness) and inspiration.  In Benny’s Zechus we were privileged and blessed with a visit from an incredibly holy Tzadik (righteous man), Rav Aaron Margolit.  Rav Margolit graced us with his presence in our home for more than two hours. His eloquent words of inspiration remain to keep our spirits soaring high.

At the end of every calendar year, the news runs a special feature on the most fascinating people in the world of that year.   Rav Aaron Margolit is by far the most fascinating person I have ever met, not just this year, but in all my years. This holy Tzadik  literally beat the Malach HaMaves (angel of death) more than 4 times in his life. Instead of pitying himself having gone through these immeasurable challenges, he used them to strengthen his belief in Hashem and use his experiences to bring others close to Hashem as well.   He told us he told Hashem, if he keeps him around, he will be an Ambassadar of Hashem and bring Hashem’s children close to Him.  He spends his days and nights visiting those in need, working on projects to bring Shalom (peace) among each other and learning Torah.  He is a Dayan (judge) on a group he has set up to answer questions and work out disagreements Bein Adam L’Chavero (between man and his friend). There is a 24/6 hour/day hotline used for this purpose only. How remarkable is that!  Earn a Mitzah while going for counseling (over the phone and anonymous) and be blessed with clarity, sometimes within minutes. It’s a win win situation.

 

Each and every person was created and empowered with their unique mission in life. Some are musical, artistic, creative, scholarly, social, there are too many to list. However, everyone has something that he/she are good at, either from birth or learned over the years.  It sometimes take close to a life time to figure out what our purpose is, but when we do, it becomes so clear, the puzzle has been solved.

Sometimes the only way we can find and reach our potential is thru the challenges we face. The challenges we face become easier, more manageable, when are able to discover our own capabilities.

If you still have not read, “As Long As I Live” by Rav Aaron Margolit I strongly urge you too! You may discover talents you never knew you had.

Hashem should bless each and everyone of you that you find your purpose in this world thru Simcha (happiness) and not Tzar (pain).

These past two days I have been surrounded by individuals who have been stricken by this terrible disease and use it as a means to help other’s going thru their own challenge.  I have also met many individuals, including last night at the Chai Life Line dinner who thank G-D don’t have this illness, but so desperately want to do whatever they can to help. Both groups share a commonality, giving of themselves to bring joy to other’s.

After our incredible visit with Rabbi Margolit we were treated to a special visit from our cousins Yehuda and Yocheved from Conn.  They are here for the Torah Mesorah Convention. Anyways, having been thru a similar journey with a child as the one we are currently on, they gave of themselves, put their feelings on the line, to give us Chizuk and validate what we are doing and feeling.  Thank you for taking the time out of your very short trip to the west coast (vacation from the kids)  and spending a couple of hours together. Yocheved, you not only bought a special new board game, you shlepped it across country and sat down to teach my kids how to play. That is cheesed!

There is plenty more to write, but it will have to wait.  B”H I hope to be sleeping soon and more importantly Benny sleep throughout the night with sweet dreams. Thank you Hashem for giving us wonderful results so far, B’ Ezras Hashem Yisboroch. Veiter! (it should continue). Thank you Klal Yisroel for all your Tefillos and Gmilus Chasodim (good deeds) . They are making an impact. and that is caring and doing for other’s .

Watch as Benny trains in a new Team Benny player:

catchwRabbi Margot

 

Waiting patiently… up to a point!

We had an early start at the hospital this morning with a 7:30 check in time for a CT. Before the actual test, Benny had to drink about 2 cups of liquid containing contrast mixed with juice or soda and then wait an additional 1 1/2 before the test could be done.  The waiting, waiting and more waiting becomes tiring and challenging as Benny becomes restless as expected.  He was quite creative today in finding new hiding places and at one point he just laid down in the middle of the hallway and began to sing and kick his feet.

Video of Benny cleaning the floor : imbrued (luckily it was moped right before)

Picture of CT machine – decorated with all kinds of cheerful stickers

Looks like a doughnut.  The best part is the filling inside the hole – Benny!

After the CT we had about an hour break, so we went home for about 1/2 hour before we had to return to the hospital for a second contrast injection (via port) for tomorrow’s scan IY”H.  Tomorrow, we will again have to be at the hospital at 7:30. Benny will have to be under sedation for this test because he cannot move during the test. The test is about an 1 1/2.   IY”H we pray that all goes well without any complications.

This evening we attended the Chai Life Line dinner. It was an incredible evening filled with inspiration, warmth and a celebration of “life.” I will elaborate in a later post. We have to get up early.

 

 

Long time no Speak!

Today, I received an email from a friend I haven’t heard from in a very long time. This friend   corrected my post saying that polio is highly contagious (only through contaminated food and water though!). I did correct it the post, however, I was referring to the stage that no longer posed a threat.

The friend went on to write why she hasn’t been in touch, basically saying that she had a hard time understanding why were going thru this, but has been following the blog.

I can totally understand what she is feeling and I am not upset in the slightest. If Chas Veshalom the situation was reversed, I would be beside myself, sick to my stomach as well, and wouldn’t know how to respond.

Trust me when I say, I am not at all OK that my child has to go thru this. I don’t begin to understand. Especially, when I lie awake at night staring at his beautiful head (B”H his hair is slowly starting to sprout!), and kissing his most delicious fingers as they are wrapped around mine.  One thing I have learned is not to question or try to understand, but think what can I do to make the most of this challenge. I do believe it was for a reason and try and make it as positive as possible.  I share my thoughts with you, not because it’s good therapy. I invite you into our world because in truth we need each and everyone of you to guide us and support us throughout our challenging journey.   We so appreciate and are uplifted by your kind words.  We are moved that you take such a special interest in Benny as if he were your own. If we appear to be strong, all the credit is given to each and every one of you, child, parent, grandparent, boy and girl.

The Tefillos (prayers), the Chasadim (good deeds) and the learning done on Benny’s behalf for his complete Refuah Shlema takes the pain out of the illness.

Tomorrow morning IY”H, we start getting ready for the next and IY”H final phase of treatment. Benny will be going in for scans over the next two days. Please have extra Kavana (concentration) in your Davening (prayers) that he remains to be in the clear and ready to move forward IY”H.

Tomorrow evening, is the Chail Life Line dinner (west coast). This organization has done everything in their power and beyond to help us cope and manage day to day life with Simcha (happiness).  I guarantee that any contribution made will surely put smiles on a child’s face and in fact take away the pain from his/her illness.

May we be Zoche to continue spoiling Benny and all those going through these challenges for 120 years.

 

 

 

“As Long As I Live”

We are continuing to enjoy the days at home, far away from any hospital visits B”H. The past few days we kept busy with shopping, morning walks, speech therapy sessions and a few other activities.

The highlight of my day yesterday was going to a lecture given by Rabbi Aron Margalit. A special thank you to Ladies Bikur Cholim and Duvi and Anat Blonder for sponsoring the event, with translation too!  If you were not able to make it there are still two more speaking engagements. If you have not yet read his book “As Long As I Live,” you can hear all about it in person.

I would like to share some important points he mentioned:

  • “The Power of the Tongue”  At the age of 3 he was struck with polio. At the time, there were false rumors going around that the illness was contagious airborne. In truth polio is contagious in the beginning stages but through food and water that was contaminated.  As a result, he among the 90 other children were placed in a special facility and were denied any visitors. All because of one rumor!  He lied in a bed alone staring at the ceiling for five years.
  • “Belief”  His mother believed whole heartedly that he would walk again and convinced  him to believe as well until he actually did!
  • “Two ways to approach an illness”         Fee ill or feel healthy with an illness. Truthfully, very early on, once Benny began his journey to a Refuah Shlema, I never saw him as sick B”H. He acted like and continues to act like an active baby/toddler. He too doesn’t see himself as ill B”H.
  • “Prepare for Challenges” It’s the little challenges that prepare us for the larger ones. If we don’t work hard on preparing then there is less of a chance at succeeding.  He says, there is no situation in life when one cannot help themselves. Think how you will get out of the situation.  Be cautious of your emotions, because that can cause one to fall.
  • “Stop and think Constructively”  We have a choice. The brain can control the heart.  Think of how your routine dally activities can be done more efficiently, and constructively and you won’t fall. Focus on what can be done, you will find it and Hashem with help you.

The last several weeks I have been thinking how we can prepare ourselves for the treatment that lies ahead.  I am trying to put the actual treatment out of my head, because I cannot bear to think of Benny in any pain Chas Veshalom.   What I am concentrating on is what the treatment is symbolic of. This next treatment goes directly into the nerve tissue.

The expression, “you hit a nerve,” refers to the innermost being of a person.  During the 7 weeks of Shovivim (the Torah portions we read from the Exodus to the receiving of the Torah), it is a time that we connect and delve into our innermost being, our Neshama (soul).

A few people asked me what it is that they can do as a Zechus for Benny to help him get through his next treatment.   This IY”H will be the final phase of his treatments. In essence this is what we have been preparing for all along.  Up and till this point we have been treating the external (although internal in the body), now is the time when we go into the nerves.  Now is the time to find anything hiding, in any crevice.   Now is the time, we must concentrate on the details of our actions, of the Mitzvos we perform and find that deep connection with our Neshama (soul) .  We need to really feel in our hearts and more importantly our souls the power and strength these Mitzvos can perform.

As we get closer to the time of the next phase, I will continue to elaborate on this thought.  However, until then, it is good to start the preparation so that IY”H we will succeed.

Benny helped his brother’s pick out shoes (they didn’t go for the high heels though!)

 

This Morning Benny walked his sister to school while pushing his toy stroller (borrowed from a friend)

Video : bennywalkstoschool

 

Bringing in Shabbos Early!

B”H Shabbos was amazing.  The groceries were delivered early Friday morning and we were able to get all the cooking done on time. We even had time to deliver the birthday cake Benny baked. The birthday “girl” was so happy to see Benny and gave him a very special Bracha (blessing). To receive a Bracha from someone celebrating their birthday is a huge honor and brings many merits.

We were told early on in the week that there is tremendous reward, power, etc. if we bring in the Shabbos earlier then when it actually starts.  When the groceries were not delivered Thursday night, all I was worried about was that I won’t have the opportunity to bring Shabbos in early.  B”H I was able to light 10 minutes early and had the opportunity to Daven for all the Cholim that need a Refuah, those that need a Zivug (soulmate,) and other’s to be blessed with children. IY”H all of our Tefillos (prayers) should be answered in this coming week. We also waited to make Havdala, as we weren’t so anxious to have it come to an end!

Benny doesn’t always like to get dressed in the morning, however, on Shabbos all I have to   ask him is “do you want to go to shul?”  He practically dresses himself!  Today, we celebrated Rosh Chodesh Shevat (beginning the month of Shevat)  ”SHIN”  ”BET” “TET”, “Shem, Brochos Tov.”  May it continue to be a month of good things to come IY”H.

Erev Shabbos, I received an email from a dear friend in Dallas, TX stating that Team Benny is still going strong there and part of the Dallas Team now lives in Israel and is wearing his “Team Benny” cap down the streets of Yerushalyim where many people stop and ask about it.

Tonight, I received an incredible text message from the east coast. It was from a dear friend (my first friend) who’s teenage daughter, Malky and her friend Aviva were making a Siyum (celebration) in completing the Sefer (book) written by the Chofetz Chaim on Hilchos Loshon Hora (laws against speaking slander).  These girls took it upon themselves to learn as a merit for Benny to have a complete Refuah Shlema. They will begin relearning these laws again tom/today. We have tremendous Hakaros Hatov (appreciation) for all your time and effort and hard work in following in the footsteps of the Chofetz Chaim as  Zechus (merit) for Benny’s Refuah. May Hashem repay you with a life full of Simcha (happiness), Bracha (good blessings) and good health.

This evening, as I watched my 7 year old son play a game on the computer I saw something I had never seen before. The game is about building an amusement park with a safari as well. The object is to try and build rides and attractions that would attract the most people and therefore score the most points. Each attraction has parameters and have to be built with high standards in safety. If the lion gets out of his cage because the wrong one was put in place, your in trouble and lose not only customers but points too!  As I watched, I thought to myself , I know our life is recorded and will be played back after 120 years, but what if there was a video game where you could actually see what your Mitzvos, Tefillos (prayers) and Good Deeds are building second by second. How one small act can save a life! What if we could see immediately if we did something harmful, what would happen. It was an amazing concept.  As we receive emails daily from around the world, or meet people in person, telling us of different things being done as a Zechus for Benny’s compete Refuah Shlema and Tefillos (prayers) being said, I imagine strong foundations being laid that will allow him to grow up and live for 120 years IY”H. I imagine a fortified life filled with happiness and good heath for 120.

This Sunday evening, in Los Angeles, we are privileged to have in our community the Tzadik, Aron Margolit, the author of “As Long as I Live.”  A few month’s ago a close friend of mine sent me his book, and ever since then I am huge fan. He is speaking Sun., Mon., Tues. and Wed.  If I tell you, you must go… you must go!  He is one of the most inspiring individuals I have ever read about and can hardly wait to meet him and hear him speak in person. He is speaking at Sharei Torah, Sunday at 8pm and various other locations. You can email if you would like more details. There will be an English translator only at this location.

 

 

Reaching your Potential

B”H we have not been in the hospital/clinic all week. Instead we have been going on many walks and for the most spending time at home. What happens on the walks,  Benny usually starts off sitting in the stroller and about half way point, Benny wants out. He will walk usually the opposite way we need to go and then when he decided he had enough, he wants to be held the whole way home. Sometimes it is a 25 minute walk back home!   It’s no wonder my elbow is beginning to hurt. Holding him most of the day doesn’t help much either!

During this time off, I thought I would be able to accomplish all the things that were neglected, but that doesn’t seem to be in Benny’s plan. One of the things I must take care of is making sure I am not in contempt of court for not appearing for Jury Duty.  I only found the summons in a pile of mail this week!!!

Last night we had a special visitor Brad Schachter (arranged thru Chai Life Line),  play the keyboard for Benny and his brothers.  What we soon found out after Brad came over is that he is the brother/brother in law of our dearest friends in Passaic.  The boys got into the music pretty quickly and then were given the opportunity to play their own music. Brad was kind and brave enough to leave his keyboards for the kids to break – I mean play with for the week.  So far so good Brad!

musicwithbrad

 

Hear Benny compose a song: bennythemusician

Today, we started off the day with Auntie Shira’s Rosh Chodesh Tehillim gathering at the Coffee Bean. B”H there was a very nice turnout of many women coming together to say Tehillim  and hear words of Divrei Torah from Rabbi Eihnhorn, for the Cholim of our community and other’s.  May all our Tefillos be answered this coming month IY”H.

Later in the day, Benny baked his first cake for a dear friend who is celebrating her birthday tomorrow. He even checked the eggs for blood spots, I am not sure about the shells though!  We also made Challah and were able to recite the Bracha as a zechus for complete Refuah Shlema for many Cholim.

watch video of Benny baking :cake

This coming  Shabbos we read about the Ten Plagues. I remember the week Benny had his first symptom of this illness (the second night of Pesach), we were running from doctor to doctor, on the car door where Benny sits there was a grasshopper. Only later did I find out the meaning of the grasshopper. In Perek Shira (the Songs of the Universe) it discusses how a certain grasshopper had medicinal qualities and the ability to cure illnesses.  That was a good sign of hope.  Just a few days ago, we saw another grasshopper in our backyard.  We hope and pray that is another sign that Benny is cured IY”H.

In learning about the Makos (the Ten Plagues), particularly the frog, we have so much to learn from them. They did as they were commanded, they went everywhere, even into hot burning ovens.  Their loyalty, their dedication to their Master did not get in their way of fear. They gave of themselves 100 + %.  During the weeks of Shovavim it is the time for us to look deep into ourselves and connect with our Neshama (soul). Once that connection is made, one achieves a certain Koach (strength) that gives them the ability to put themselves out there without fear.

Tonight, I returned from the Shloshim (30 days since the Petira (passing) of Nechama Bas Kolev .   Nechama Bas Kolev lived her life each and every day with that Koach. She made it look so easy, so natural too.    Her fulfillment in life was seeing to other people’s needs, not her own. Our needs became hers and she didn’t stop until they were fulfilled. No task was beneath her, no distance was too far.   In one of the hespedim (eulogies) said over this evening by Shimson Beinstock (son in law), the word “Chaim” (life) was mentioned. Why is Chaim, Life written in plural?   It is because a persons life is made up by many relationships they have with people, if not for these relationships one lives alone, which is no life!  Nechama Bas Kovel lived a life of Chaim and her legacy will continue to live for generations to come, until the coming of Mosiach IY”H.

B”H Benny is finally sleeping. I better start cooking for Shabbos. We are IY”H having guests, something unfortunately, we have not been able to do for months and months.

PS.  I was so excited earlier today when I placed my first food delivery order by email (around noon). I was planning on cooking tonight when Benny is sleeping. It is a lot easier to cook without  him in my arm.   At around 4:30 I called to see when it will be delivered and I was told at around 5:30 -6. So I waited. Then I had to leave. I left a check on the kitchen counter for my kids to give, but unfortunately, no one ever showed!  By the time I got home, the store was closed.  So I guess I’ll be going to sleep and I’ll cook fresh in the morning. I hope there will be enough time.

Good Shabbos!

 

 

 

 

 

Catch Up!

B”H we have been enjoying the past few days away from doctors, nurses, hospitals and anything medical. It is hard to believe that just 5 days ago we were dealing with anesthesia, no eating or drinking etc. B”H radiation is a thing of the past IY”H!!!

Benny has been getting back into his morning routine, eating breakfast with his brother’s and his Zaida. Then he enjoys learning  and playing with Morah Dena and Claudia.  Today, we heard Benny say his colors, yellow, orange, white, red, and green.  He also sang his first song, “Ani Ma’Amin” (I Believe…)   This is a song that I have sung to him countless times especially during the most trying and challenging treatments. He sings it with all his heart and soul, with his fist clenched and his arm lifting up and down.  I hope to get a recording very soon.

Over the past few days we are trying to get Benny used to being comfortable outside of my arms 24/7. It is easier if I disappear than if I remain in the room with him. I would say the most difficult part is preparing Shabbos or dinner and not being able to put him down, especially near the stove.  We are also trying to get him used to sleeping in his crib and not  my bed.

Last night, as Benny lay beside me in my bed, his arm was spread out over my neck while his hand reached for my hand. He only felt relaxed if I held his hand all night. I can’t say I minded, even though, I couldn’t sleep like that. At that moment it hit me, the meaning of his name “BenYomin,” The son on my Right… my right hand man!

Sunday afternoon we took the boys to an exhibit by the Queen Mary called, “The Chill.”  It was an ice exhibit sculptured by artisans from the China. The kids really enjoyed it, even though it was arctic like temperatures. They got to climb around The Queen Mary sculptured out of ice and slide down an ice slide.  The best part of it all was walking out of the arena into a nice cozy warm room!

Over the next several weeks, we will be using the time to play catch up on life. Go thru the mail, send out thank you cards,  stock up the fridge & food pantry, clean out clothes the kids have outgrown, maybe even get to bake, and dozens of other things.  It may be wishful thinking on my end, because I am not too sure Benny will want to play that kind of “catch!”

Please continue to keep up your Tefillos (prayers) and any special good deeds in a Zechus (merit) for a complete Refuah Shlema for Binyomin Chaim Ben Faigie Sarah and Elimelech Ben Basya (who is currently undergoing his second round of chemo this week), and Bracha Sarah Chaya Bas Ronit Nava Tehilla and all the cholim.

 

 

 

 

No More, Never, Never…..IY”H

I am overcome with many emotions as I write this email.  I am not sure of the direction as so many thoughts are racing in my head.   First and for most we have tremendous gratitude to Hakodosh Baruchu (G-D) for helping us reach this point in our journey thus far. Although, there is more to come, we are truly filled with joy as we close another challenging and exhausting chapter of the Refuah (healing) treatment. “No More, Never, Never..uh uh uh” was a song we used to sing in school. This song now has new meaning and refers to all the treatments that Benny and all the Cholim (ill) have completed and IY”H will never, ever have to again.

Today, we completed 12 sessions of radiation. I say “we” because it was a group effort. Other than Benny laying on the table by himself for the actual treatment, he was never alone. He had tremendous support from his loving family and friends (some that we know personally and other’s that have enrolled as a Team Benny Members, whom we have not yet met).

When I think of the 12 treatments and how it relates to us today, I reflect on last weeks Parsha. It discusses the greatness of the Twelve Tribes, their qualities, attributes, and greatness. Suppose each time Benny was getting a treatment he was being infused with these characteristics of our great Shevatim (12 Tribes,) one treatment per Shevet?!   We also completed the Sefer Bereshis with Chazak Chazak (strength, strength).  This is what Benny and frankly his parents needed to get thru the final stretch.

This coming week we begin Sefer Shemos. We begin with the birth of Moshe and conclude with Hashem telling Moshe that the Geula is near.

Having completed 5 rounds of Chemotherapy, MIBG, Stem Cell Transplant and now Radiation, we now enter the final phase of this very lengthy treatment called Immunotherapy.

(Immunotherapy uses the body’s own immune system to fight cancer and to reduce treatment-related side effects.

The therapy is used to:

  • Halt or suppress the processes that allow cancer growth
  • Help the immune system identify cancer cells
  • Promote the body’s natural ability to repair or replace cells that have been damaged by cancer treatments.

This therapy is given over a 6 day hospital stay, once a month, every 4 weeks for 5 months. Confusing right?!)

Four treatments K’neged (corresponding) to the four exiles we have gone thru as a nation.  B”H now we are in the final phase in preparing for the Refuah/Geula (Recovery/Redemption). Rav Avrohom Schorr says (retold by Meira S.), the four exiles, Rome, Bavel, Yovin, Ma’dai, when you take the first Hebrew letter from each word you spell “Rabbim.(many)”  When we as a nation act in Rabbim (many) we are in exile. When we unite together as Yochid (one), the Geula will come. Immunotherapy is the body working together as one, to rid the bad and make room for the complete Refuah Shlema to dwell permanently IY”H (G-D Willing).

So how does one celebrate up to this point?  Well, we started off by bringing in doughnuts for the staff at UCLA.  They in turn presented Benny with a gold medal (rightfully earned), a stuffed super hero Grover and an award certificate.   As we headed out and walked to our car in the parking lot, we sort of shouted hooray! yippee! wohoo!  Is was too difficult to hold in the excitement. Benny and our son Shmuel Tuvia laughed and thought we were silly. I have to say, it felt great!!!

Grover tried taking Benny’s spot for radiation today!

As I drove out of the parking lot, as I had 11 times prior I hadn’t noticed the building across the street until today. It looked so familiar (check out for yourself below)

When I looked closer I saw the words “Chabad House!”  I never knew that it existed at that location. It was so appropriate to discover it on our way out. When I think of the Chabad, I think of unity and all their the extraordinary effort they go to in spreading the greatness of Hashem, in order to bring the Geula Shlema (Final Redemption).  I hope it was a sign that the Refuah and Geula are on its way!

We had a couple of hours at home before we had to head out to CHLA to meet with Benny’s oncologist. B”H I was able to prepare dinner and run to the local grocery. While shopping for Shabbos I bumped into the holy Rebbetzin L. who was filled with excitement that Benny finished treatment. Reb. L was actually buying ingredients for a cake that she plans to bake for Benny for Shabbos in honor of his completion of radiation.

The celebration continued later in the day at CHLA with danishes that we brought for our Dr. and hospital staff. We had a lengthy discussion about the next step in the process.  Well, that really didn’t count as a celebration!  The doctor mentioned maybe we should open a bottle of champagne.  And that is exactly what we will do, tomorrow night IY”H by Kiddush.  Shabbos can’t come soon enough!

Later this evening I received a couple of emails from special friends stating that they will be  dropping off more homemade treats for Benny and our family. A way of showing their happiness and genuine feelings that they are in our journey with us all the way!  The pumpkin muffins were delicious Judy P. Thank you!

The emails, the calls, the unbelievable tasty treats honestly take the pain and suffering out of the mix and replace it with true joy and tremendous strength to keep going.

The hour is late. My eyes are closing. No radiation in the AM – hooray!

Good Shabbos!

 

 

 

 

 

Anticipation

IY”H tomorrow is the last and final day (no, I am not referring to a big sale) of radiation. Tomorrow, completes the 12 days of radiation.  Maybe this constitutes a count down, this is the time that you want to count down to zero – to void out this horrible disease as if it never existed or will in the future.  For some reason this treatment seemed to go on and on and on.  Do you remember we began on the 5th day of Chanukah?!E”H (with the help of Hashem) we hope never to have to step foot in that treatment room again.

I would have loved to take Benny somewhere special after treatment tomorrow, but unfortunately we have to meet his oncologist at the hospital to review the next part of the treatment plan.

Time to go to sleep…tomorrow is going to be a long day!

 

How do you count?

Did you ever stop to think why there are times when we count down 10,9,8,7,….3,2,1 blast off and other times we count up , the first night of the Omer…49th day of the Omer (the period of counting from Pesach to Shavout counting up to the days when we receive the Torah)?

It is a NY tradition in Times Square to count down to the New Year as a crystal ball is lowered down.  Shouldn’t the reverse be done?  The ball should go up towards the Heavens above,  after all aren’t we aspiring to elevate ourselves, to make a change for the better.

Shouldn’t we count the full 365 days in a positive way and not bring it down to zero at the end. Instead, we can take everything we learned from the previous year, transfer it to the New Year, and build from there.  Reseting the clock does spark new energy which is important in making changes, but it doesn’t have to erase the past and start from zero.

This afternoon, we were privileged to a wonderful concert in our home performed by very talented musicians from Eretz Yisroel (Israel). Thank you Reb. Doron for arranging it.  Benny was mesmerized and truly enjoyed the musical instruments and singing as well. As these kind hearted musicians departed our home, they wished Benny a Refuah Shlema. I told them we will IY”H see them in Israel at Benny’s Seudos Hoda (celebration of thanks to Hashem ). In which they answered Amein.

Click on videos to view the concert: singing1     dancing1       dancing2    dancing3  dancing4

Today, there was another celebration taking place across the country in Baltimore. There was a siyum for a group of 18 yeshiva students that have been learning every Shabbos in Shul (outside of school) for the past two months straight as a Zechus (merit) for Benny’s Refuah Shlema.  Benny has never met these extraordinary young men yet, however, he does feel super connected with each and everyone of them.  IY”H he does look forward to the day when he can thank them and bless them in person (after all he is a Kohen!).

Tomorrow, is IY”H day 11/12 of radiation. (Notice how I didn’t say 2 more days left.) The more days behind him, the stronger and healthier he will become. We pray for a smooth and speedy session.

Benny’s late night treat !  He’s saluting to building a better and stronger life IY”H.

 

 

2013 A Year of Change

Fifteen years ago when we first moved to Passaic NJ , we spent our first Shabbos davening at Tiferes Israel.  I’ll never forget walking into Shul holding Yocheved (5 months old) in my arms and standing in the ladies section. I probably stood no less than a minute before a woman around the age of 75 got up from the bench to make room for me to sit next to her. From that moment on we became life long friends.  This special woman, who many of you know as Millie celebrated her 90th birthday today!  Happy Birthday Millie!!! Over the years Millie has knitted baby blankets for each of my babies. One of our favorite outings my kids enjoyed in Passaic was bringing Challah and visiting Millie almost every Erev Shabbos. Millie always had a bowl full of assorted candies for the kids and she would say, “fill up your pockets kids!” They were good listeners too!   Today, we had to celebrate Millie’s birthday over the phone, but Millie was so appreciative of the call.  We got to talking and all Millie could say is how grateful she is for our friendship and marveled at the fact that it came from a simple, uncomplicated act of kindness. Although, Millie never had children of her own, she always says how G-D blessed her with children, ours and dozens of other’s from the community. There is so much to learn from this great lady, so for all those who live in her neighborhood, it’s worth making the connection.  For those of you who don’t live nearby, IY”H she is planning on attending Yosef Tzvi’s (Joey’s) Bar Mitzvah next year, so you’ll have an opportunity then.

This morning Benny had back to back lessons of speech therapy.  B”H he understands everything and has now added a new word to his vocabulary “zaida,” among other words. In the afternoon we went on a walk, first to the school to sign up for PTA (yay, can hardly wait!). While at the school we met the crossing guard who recognized Benny from across the street and called out Benny’s name. It was so cute. He doesn’t even go to school and yet the guard treated him like he was an important dignitary.

On the way home we made a detour to the ice cream store. After Benny enjoyed a few bites of soft vanilla ice cream, he decided he wanted a cone. He pointed to the one in the refrigerator section. The only problem was that these mini ice cream cones were sold by the dozen. When I asked if I could buy one, the man behind the counter said “no” (this was the same man who said “no” to me last month when I asked him for an additional cup, so I can split the milkshake I got for Benny).   However, seconds after he said “no,” he said Benny can have it for free for being a loyal customer. Right then and there, I learned a valuable lesson, never to give up on human nature. After last months episode, I was so turned off and never wanted to walk into the store again, but I did. Today, this man made a complete turn around and displayed excellent customer service.  Could it have been because it was on the eve of New Year’s?  It doesn’t matter. What does matter is, he made a change for the better. Through this one small act of kindness, I no longer will hesitate to go in and buy ice cream. One never knows what one small act of kindness towards other’s will bring in return – but what you can be sure of is, the investment will have a good return.

Tonight, brings in the beginning of a new calendar year 2013. Although, this is not our High Holiday, it is never too early or too late to make a change and a difference in the world.  May the year of 2013 be filled with good health, good Mazal, Bracha, and happiness for all.

The next 7 weeks is referred to as Shovvim, it is the time period in the Torah, Parshas Shmos through Mishpatim, when we become the Jewish nation.  It signifies a time of togetherness.  Let us try to do what we can during this special time to make a difference in one another’s lives.

 

 

 

 

 

 

 

A Day of Amusement!

Thank G-D for Shabbos. The radiology department is not open on weekends and therefore we are enjoying a nice break.  Due to the weather this past Shabbos, we were content with staying indoors and catching up on much needed rest.   We also had a wonderful time with our children singing Shabbos Zemiros and admiring Benny as he danced around the Shabbos table.

Friday morning we were scheduled to be at the hospital at 7 am.  This was the second appointment of the day. The first slot is for a patient that unfortunately has treatment twice a day ( I can’t imagine that, nor do I want to think about it!).  B”H the treatment went smooth and we were home by 9. Unfortunately, our other children had already left to school so we were not able to wish them a good day in person and kiss them good bye (I’m their mother so I can!). I so look forward to this coming Friday when I can be home and give my children the send off they deserve. It makes such a difference in your child’s day when they are given that extra bit of love and attention before the start of a long school day.

watch the Radiation Parade – Can you find the Parade Master?  radiationparade

This past Shabbos, we were treated to so many special homemade Shabbos treats; potato kugels, liver & coleslaw, challah, chocolate cake, Elmo and Cookie Monster cupcakes, compote, courtesy of our close friends and Bubby’s chicken soup (Benny’s favorite).

There have been so many attempts at baking Challah for Shabbos,  from buying the ingredients to placing the mixer on the counter ready to start the process, and then Benny decides he wants to be held, anywhere, but the kitchen. So another Friday goes by and the mixer remains empty.  I am envious of all of you woman who are Zoche (merit) each week to be able to fulfill this special Mitzvah of Challah.  We are also grateful that you include Benny in your Tefillos as you recite the Bracha each week. It is clearly evident each and every week as he eats his Challah that he is benefiting from your Mitzvah.  I so look forward to the day very soon IY”H, when our Friday’s, are just the average Erev Shabbos commotion as in every household.

Motzei Shabbos, Benny’s older brother Yosef Tzvi tried out his new cotton candy machine (Happy Birthday!) and with much perseverance he managed to make the entire family their very own cotton candy treat.  Benny liked holding the cone more than getting his hands sticky when trying to eat it.

Today, we tried something new as a family, Miniature Golf. It was Benny’s first time on the putting green.  I wanted to see if he inherited the same skills that my Zaida Ben O”H (may he rest in peace) had.  He definitely shared Zaida’s O”H enthusiasm when he scored par.  I remember my Zaida telling me, what he enjoyed most about playing golf, was not the actual sport, but the time he spent with his brother’s while playing.   Benny and his siblings also enjoyed playing arcade and collecting tickets to redeem for prizes at the end.  It’s quite fascinating to watch children play to win. The sheer excitement and drive they have to win.   What if we could all feel that same excitement when we perform Mitzvos?  Isn’t the prize, the reward after all so much greater than a trinket that breaks after an hour?

watch Benny Golf: bennygolf and skiball

B”H it was a successful day with good Ruach (good spirit), many smiles and lots of laughter.

 

Forever

B”H this morning went a lot smoother than yesterday. Today we had to be at the hospital at 9 am and returned home around noon.  Our concerns from yesterdays episode was addressed and two new anesthesiologists were on call today. Benny was put under in about 10 seconds and came back to the recovery room still asleep and woke up peacefully with his parent’s by his side B”H.

Later in the afternoon I took Benny and Yehoshua to see the Space Shuttle Endeavor in it’s new home at the California Science Center.  I think Benny recognized it when he saw it because of how excited he was.   It wasn’t too long ago that we went out on a Motzei Shabbos to see the Endeavor travel down the streets of Los Angeles to get to it’s final destination.

This stage of treatment feels like forever, both for Benny and his parent’s.  We hope and pray that IY”H all these treatments are behind us very soon and that it will feel like forever ago!!!

 

8th Day

I am not referring to the band, although I wish I were.  I am referring to the rounds of radiation Benny completed. Four more days to go IY”H.   I wish I could say it is getting easier, it is not. This is one treatment that is hard to get used too.  Trying to explain to a two year old he cannot eat or drink, doesn’t seem to work too well.

Today, our appointment was at 7am. The anesthesiologist did not show up until 8:15. It was more than a little frustrating.  Today’s doctor was new to us and did not seem to pleased to be working today for some reason.  Maybe she didn’t get a holiday bonus!  The whole experience was a bit strange. Benny did not fall asleep as quickly as he usually does. The doctor administered the anesthesia in a different way that Benny had been getting it up until today.  After the treatment, Benny usually comes back to the recovery room still asleep on a bed; today, he was brought back into the room crying in the nurses arm. To top it off, he got a mysterious cut on the top of his head, and no one seemed to know how it happened.

We informed our radiologist of what happened and notified him we will have to refuse treatment tomorrow if there is not another anesthesiologist to administer anesthesia tomorrow. We don’t feel comfortable if she were to treat Benny again.

The nurse apologized about the delay and then said, it is only a little while longer that he has to come in.  I responded that even one more day of delays is too many. It is not fair to Benny! We are all at the point that we have had enough and are completely exhausted from this round of treatment.

We have learned quite a bit about hospitals, doctors, nurses and procedures over the last 8 months.  Doctors are humans and can make errors. it is unpleasant when it occurs, but  It is our job as Benny’s parents to look out, speak out and protect him with the best of our ability.

As a follow up to yesterday’s post, be careful what you wish for – it may come true.  I wrote a trip to the bakery is all one needs to find Simchas Ha Chaim. Well, lo and behold when we got home from treatment today, there was a bag at our door step filled with my favorite pie from My Most Favorite Dessert Co. in NY.  I am still not sure how it got to me, but I thank whoever did deliver it and I thank my dear friend Elisheva for buying it!  It really did bring Simcha (happiness) to my day.    The happiness continued later as well, when another friend dropped off smiley face cookies for all the kids.

I hope and pray that tomorrow will go smoothly.  Maybe I will go to the bakery first to buy some Simchas Ha’Chaim for the doctors and nurses. Although, I am not sure if the smell of the delicious pastries will make Benny hungrier than he already is!

Rise and Shine

The break was nice while it lasted. We start radiation again tomorrow IY”H bright and early 7AM.  Five more days to go.  How come the 8 days of Chanukah seemed to go by so much faster?  As the saying goes,” time flies when you’re having fun”.   Radiation isn’t fun and it seems to be going on forever.   I am not looking forward to telling Benny he can’t eat breakfast or drink his bottle in the morning.  I hope and pray there won’t be any delays in the morning and everything runs smoothly.

Today, Benny enjoyed breakfast with his Zaida and then a nice walk around the neighborhood. He stopped off at the bakery and was treated to an assortment of cookies from the nice lady behind the counter.

Later on, I took him on another walk. The streets were fairly quiet except for the interesting individual we passed along the way. There was a man singing and dancing in the middle of the side walk, with one shoe on and the other off. He kept on spinning in circles, first with the foot that had the shoe, then with his bare foot.  I passed him fairly quickly, trying not to make it too obvious I was uncomfortable around him. A half block later, all of a sudden, Benny took off his left boot and sock and began to move his foot in a circular motion (luckily he was strapped into his stroller). He was mimicking what he just saw.   What was is that Benny saw?  A man who was out of his mind? or a man as happy as can be with what he has – his own two feet!  It must have been the happy man because he too wanted to dance!

I sometimes find it fascinating to study the mannerisms of these people.  They don’t have a place to live, other than the pavement on the ground, they don’t have a plate to eat off, nor a chair to sit in, and yet, they sing and dance all day long.  So what is it that gives them SImchas Ha’Chaim (happiness from within)?  What is it that gives us Simchas Ha’Chaim?

Many of you write in that you are inspired etc., so am I. Not only by all of you, but, from Benny.  It is he who inspires me and gives me a Simchas Ha’Chaim that I want to share with you.    It is the same SImchas Ha’Chaim I was privileged too, when I spent time with my  Zaida Ben O”H.   The truth is, I always wanted to write a book about my dear Zaida Ben O”H, who was my mentor and best friend. Many of my posts may be written about Benny, but in truth, it is about his great namesake “Zaida Ben” O”H, whom Benny is named after and takes after in every way.

Sometimes it only takes a trip to the bakery to reach your Simchas Ha’Chaim for the day!

Peace and Quiet

If it was only Shabbos tonight and tomorrow. I love going out and not seeing any cars on the road, stores closed and just “listening” to the quiet. It reminds me of Shabbos in Israel. A sense of calm and serenity both in and outside of the home.   We are especially grateful to have two days off from radiation too.  It was the first time in two weeks that I was able to enjoy a nice breakfast with Benny and my father (who usually visits every morning with bagels for breakfast).

Benny loves spending time with his brother’s. He cries when they leave in the morning and waits by the door around the time they come home from school.   His eyes light up when they walk thru the door and basically I don’t see Benny for the next hour or two.  Benny has a unique bond with his brother Yosef Tzvi (Joey), which Benny calls “Yaya.”   Thinking back to last weeks Parsha and the special bond that Yosef and Binyomin had with each other, I see many similarities.  Yosef Tzvi, loves taking care of Benny, making him laugh, getting him to take his medicine by acting silly, or giving him rides around the house on his shoulders, are just a few examples. Overall, Benny feels protected by his siblings and trusts them explicitly. IY”H may they continue to strengthen their bond for 120 years.

 

 

Are you Connected?

Today was the fast day, “Asara B’Tevet” (10th of Tevet).  Earlier today, I went to a video presentation of Rebbetzin Yemima Mizrachi sponsored by Mrs. Rikki Hager and Mrs. Hager, as a Zechus for a Refuah Shlema for Elimelech Ben Basya and Binyomin Chaim Ben Faigie Sarah.  The message was powerful. (paraphrased below)

Today, the siege was laid around Yerushalyim.  How do we cry today?  How do we feel one another’s pain? The translation of “tear” in Hebrew means “involved.” The meaning of “Churban” is “dry.”   We used to be able to cry as mother’s much more freely. Why is it so difficult to shed a tear?  We are like sand, so great, so strong but we need the liquid component of tears to be able to rebuild. Without the liquid sand has no ability to change it’s form and rebuild.

So it is with our Tzara today. We need a collection of tears to arm ourselves with and fight the battle we are facing day by day, minute by minute.

Today, my 7 year old had a birthday party to go to. I decided I wanted to do the pick up since we were home (from the hospital) and didn’t have to rely on friends to do this run, as we did in the past.  On the way home from the party we discussed the special surprise visitor that came to the party. It was none other than Elimelech Ben Basya. As I mentioned, Eli is in my son’s class and is currently undergoing treatment. This was Eli’s first appearance before his class since he began his new journey.  One of the boy’s in the car ride home said to me, ” I know how Eli was able to go to the party.”  I then asked him “how?”  He then responded, “this boy by the name of so and so, said over and almost completed the entire Sefer of Tehillim (Book of Psalms) for Eli, and see it worked – it made him feel better so he was able to come to the party.”

It was such an incredible lesson to be learned. This 7 year old truly believed with all his heart that as a result his friend’s Tefillos (prayers), Eli began to feel better. The truth of the matter is, it is true. This 7 year old is able to feel and recognize a direct connection to Hashem.   Let us learn from this seven year old and adopt his belief’s that all of our Tefillos and good deeds are directly making a difference in the lives of our children Elimelech and Binyomin Chaim.   We all have the ability to connect!

Through our tears, our Tefillos (prayers) , our good deeds we can lift the siege that was laid thousands of years ago. We can fight  this disease, and we can bring the salvation that we all personally and collectively need.

Enjoy this short clip of Benny helping his sister, brother and friends bake delicious treats for after the fast.  It makes you want to cry!

bennythebaker

 

 

 

 

Half Way Mark

Today, B”H we have finally reached the half way mark in the radiation treatment.  Six more days to go IY”H.  This treatment was supposed to be the easiest of all and yet Benny and us are having a really hard time with the schedule.

The fact that he starts his day off fasting from the moment he wakes up until several hours later, makes this challenge all the more difficult. Hopefully, Hashem will count these fasting periods as an atonement for the world at large and facilitate the Geula (Salvation) before the completion of the treatment.

Before Benny is put under sedation, we walk thru a corridor which leads into the room with this larger than life machine. As Benny passes numerous doctors along the way, he sticks out his arm and shapes his hand into a fist bump and waits for the doctor to punch back. It doesn’t matter how many doctors are in the room, Benny will bump them all. He then gives us his famous squeeze tight hug, kisses us and the Tehillim (Book of Psalms), and closes his eyes as he rests his head on his Daddy’s shoulder.  He then gets transferred to a bean bag that has been specially molded in the shape of his body so that he is in the small position daily. The actual treatment is less than 4 minutes, but the before and after prep time add up to two plus hours.

As you eat your breakfast tomorrow, and I hope you do. It’s the most important meal of the day, if your mother hasn’t already told you a thousand times before, have Benny in mind when you say your Brochos (blessings).  Have in mind that he shouldn’t be hungry until it is safe for him to eat.

B”H treatment does not take place over weekends, nor the beginning of next week for a holiday break.  Although, we really would like to get this over with, maybe a break will be good to get our strength back to complete the rest.

Also, if you have not yet signed up to bake Challah for this week, please do so. It only takes a quick minute to fill in the spreadsheet. The spreadsheet is on the right side of the website.      https://docs.google.com/spreadsheet/ccc?key=0AtGzm7uMMGbkdENFYUg4dS1iOWJ4aVRXUzRGQVcybmc#gid=1

Good Erev Shabbos!

Climbing Mt. Everest

The second we are born we begin our journey of climbing a mountain, many mountains in fact. Some have more peaks and valleys than others, but all mountains. Along the way we are challenged with treacherous conditions, sometimes with no visibility. Worries and fears consume our thoughts fairly quickly. Then, there are paths that have magnificent views, too beautiful for words, and can only be seen once you conquered the difficult slope. Many times these views are only visible if you embark on the most difficult path of all.

Mt. Everest, peaks at 29,002 ft. If climbed on its standard route, it does not pose too many technical challenges, however, it does pose dangers with altitude sickness, weather and wind.  Why the fascination with this mountain or any other famous mountain that we hear about? The fascination is about the journey and the map leading to the top.

There are many mountains we climb throughout our life time. The mountain of school, climbing up the ladder of grades. The mountain of finding ones soul mate, quite a few peaks and unfortunately valleys too, along the way.  The mountain of Parnassah (livelihood), which is definitely bumpy and frightening at times. Then, there is Mt. Everest, which I pray from the bottom of my heart that no one should ever have to climb, the mountain of illness.

Standing before Mt. Everest, looking towards the top, the peak extends beyond what the eye can see. You have a map in your hands that lists the equipment and provisions you will need to climb to the top. The map also gives an estimate to the amount of time it will take to reach your destination, broken down by stops along the way.  On the back of the map, there is a list of organizations that can help you along the way, whether it be in the food department, emotional support, moral support and sometimes physical support.  And last, the map has tips on how to breathe and take one step at a time.

8 months ago our family was picked up and placed on the bottom of Mt. Everest. There was no advance warning or preparation. We basically had the shirts on our backs and a map of the mountain. At first,  it took a few days to even open the map. Once we did, it took another few days to understand the language of the map (still being interpreted). Some of the directions were in a different language.  Once we mustered up the courage to survey the area we found several tour guides available and willing to lead us on the journey up.

The road we are on, is not new B”H. Fortunately, or unfortunately it has been traveled before. Unfortunately, it is a very difficult road, but fortunately, there is a map. Unfortunately, there are many steep peaks and deep valleys to cross, but fortunately, there are the most incredible and breath taking views along the way. We just have to be brave enough to open our eyes to see them (not easy if you have a fear of heights!).

We B”H are more than half way to the top. It’s hard to believe!  I will never forget the first hour, the first day, the first week, the first month. Actually, you lose track of time, in a way there is no sense of time at all. Most people look forward to holidays and vacations. Our world is centered around completing rounds of treatments and moving on to the next.

Throughout our journey thus far, we have encountered incredible tour guides, and have been Zoche to witness indescribable views of Chessed (kindness).

Last week as we embarked on our new journey of radiation, we received a SOS call from the bottom of the mountain. It was adorable little Elimelech Ben Basya calling for a map and tour guide of Mt. Everest.   It is up to all of us, to once again to do our part in helping Elimelech climb the mountain and reach the top with as few bumps in the road as possible.

Just think of it, as any act of Chessed done, is removing the rocks from the path, enabling a smooth and safe and easy journey to the peak. Remember no act is too small!

 

Introducing Happiness one day at a time!

B”H we have completed four days of radiation so far, eight more to go.  Today, we changed the time of radiation to late morning.  This way Benny could have a drink in the morning and then 4 hours later have the procedure done. It did not go over to well. Benny wasn’t too happy with just a quick drink. He was more interested in having a full breakfast and spent the next 4 hours unhappy.  We will go back to the early morning slot tomorrow and hopefully it will be a little easier. As I mentioned in prior updates, Benny is too young to stay still on his own during radiation, so he has to be sedated each time.  The rules for sedation is no food from the night before and no liquids four hours prior. The actual radiation is quick, it’s the set up and recovery that take time.

Yesterday, I took Benny’s older brother Joey with me for help with Benny. As Benny was about to go under sedation I asked him if he would like to go to Disneyland when he wakes up. Sure enough he said yes. His brother Joey looked at me and said “really?”   I said “really” and off we went. The night before, I received an email from Atara J. offering me two tickets to Disney that were going to expire by this Wednesday.  I knew today was going to rain and tomorrow we have a clinic appointment, so yesterday was the only day.

Part of why I pushed myself to go was to kick off my own personal campaign of bringing Simcha, Happiness back into our life.   What better way, then to go to Disney (where all your dreams come true!) Well, not exactly, but Benny and Joey and I for that matter, did have a happy time.

The truth is, it’s not only not realistic to go to Disney every day, it’s not happiness that is ever lasting. True happiness is achieved when you feel a sense of fulfillment. When you do for others. So as I was driving to the hospital this morning, there were several times I let drivers cut in front of me or allow  a car in the opposite direction make a left turn causing me to have to wait an additional few seconds. After that occurred the driver waived thank you and went on her way.

The happiness will come in the in the small actions like holding the door open for someone, wishing them a good day, drawing a smiley face on your child’s lunch bag. The list can go on and on. The point is, it’s easy but we have to make the effort.

One thing for sure, I need to feel rested to be able to experience happiness and so I bid farewell for now.

Pictures of our happy day!

Video : Dontwakethebaby

Keeping the Flame Ignited

As we begin to put our Menorah’s away I ask myself how do we keep our flames lit?  We still need miracles in our lives, in our children’s lives, we are not ready to extinguish the special light of the Menorah.

There are a number of ways to experience that extra ordinary light in our lives. The easiest is thru the Menorah. Since we are not able to increase the days of Chanukah :( we have to find another way.

Another way to experience this extra ordinary light, is thru darkness. “The light at the end of a dark tunnel.” These past 8 months, I don’t wish upon anyone one, not even my worst enemy, there were times of darkness that were so great, similar to the Makeh (Plague) of Choshech (Darkness).  The darkness was so heavy that it did not allow movement. It took and continues to take a great amount of work to replace the darkness with light.  It’s not just any light, it is a light which brings with it super natural strength. A strength that is needed to survive this battle.

This light is very difficult to achieve alone. It is only possible when you are given the support  of a community, (in our case B”H many communities) behind you to see and experience the power and energy of the light.

Over the last week our community has been hit hard. We lost a great Tzadekes, Nechama Bas Kolev, Mrs. Erica Klein O”H (may she rest in peace). I am not worthy to sing Mrs. Klein’s praises, but going almost daily to learn more about this righteous woman, I am in awe. If I could sit there all day I would, so as not to miss out on one of life’s most valuable lessons. The lesson of life. Mrs. Klein lived to do for other’s. Starting with her family first and then the community.  My family was Zoche (merited)  to be a recipient of her tremendous Chessed and we are forever grateful. I learned this week that there were so many more families that were recipients of her delicious delicacies, and acts of kindness. Whenever, I saw Mrs. Klein she always looked beautiful. Her outer beauty was a reflection of what was inside.  As her husband said tonight, she never asked for anything for herself, she only wanted to do for other’s.   She loved life. She loved going to Simchos (happy occasions). She never complained about it being late, or she was too tired to go. She saw the beauty of the world, of G-D’s handiwork.

The third way to reach this extra ordinary light is through Simcha (happiness).  The way Mrs. Klien O”H reached.  Unlike, in times of Tzara (hardship), one has no choice but to turn to Hashem for salvation, finding the light in happiness may be harder to reach.   How many of us would complain or say they are too tired to go to a Simcha, but never once Chas Veshalom say they are too tired to go to a funeral? It just would never happen that one would say they’ll go to the next Levaya!

Tonight,  a gathering of over 50 women came together to say Tehillim for yet another innocent, beautiful child in our community, Elimelech Ben Basya, that needs all of our Tefillos.   Not one woman there tonight hesitated to come B”H.

Todays, current events around us are not natural. I don’t know the meaning of them, however, being a mother of a magnificent little boy, Binyomin Chaim Ben Faigie Sarah, who is in great need of a Refuah Shlema Min Hashamayim, I will do anything I can, to find that Refuah. I will do anything I can to help eliminate the pain of one more child, one more family to go thru what we have endured. I do believe you would and will too!

There is no such thing as coincidence. Let us learn from our very own Nechama Bas Kolev O”H, how to live a true Torah life through Simcha.  I would like to propose we all work on finding that super natural light thru Simcha and not Tzar (pain). That super natural light will bring us closer to Hashem which will cause Hashem, Simcha (happiness).  IY”H that Simcha will bring the Refuah (cure) and the Geula (Redemption) which we so desperately need.

May the happiness you experience today be a Zechus for a complete Refuah Shlema for Binyomin Chaim Ben Faigie Sarah, Elimelech Ben Basya, Bracha Sarah Chaya Bas Ronit Nava Tehilla and all the Cholim in Klal Yisroel. Here are a few pictures that I would like to share that have brought Simcha to my life and that of my family this Chanukah.

Benny getting his face painted at a Chanukah party! (thank you Yocheved D. for a great party!)

Below are a few ways Mrs.Klein O”H, brought Simcha into her family’s home during Chanukah.

 

Below is a video I received that took place recently on the front lines of battle our soldiers just fought in Israel.  Let this be the last time they will have to dance in times of Tzar.  Ivdu Es Hashem BeSimcha

http://lazerbrody.typepad.com/lazer_beams/2012/12/ministers-of-morale.html#comments

 

8th Day of Chanukah

The power of 8!  Looking at the Chanukah lights last night, many thoughts and prayers came to mind. Below are a few findings that I have come across that I would like to share with you before the day slips away. I will elaborate later in the day after today’s Chanukah events that my children are waiting to go to.

Zos Chanukah (moshiachiscoming.com)

Below are a few musings about the eighth and final day of Chanukah.

Why is the eighth, and last, day of Chanukah called “Zos Chanukah” and what is it significance?

The eighth day of Chanukah contains the Torah reading including the sum total (Numbers 7:84) of all the tribes’ leaders’ dedication offerings. So the phrase used is “zos chanukas hamizbeach”, this was the dedication/inauguration, and the eighth day of Chanukah is then known as “zos chanukah” or “this is chanukah.” It has the longest Torah reading of all 8 days.

In Hassidic thought it has significance because it’s the wrap-up of the holiday, as if to say “this represents how our chanukah went this year”; in some schools of Hassidic thought it’s also seen as an extra-last-last chance for final judgment from the High Holidays (something like “the verdict is written on Rosh HaShanah and sealed on Yom Kippur … but the book isn’t closed until Hoshanah Rabba, and isn’t put back on the shelf until Zos Chanukah”
http://judaism.stackexchange.com/questions/4530/why-is-it-called-zos-chanukah

The day is mesugal for one to daven for; barren women to have children, for a Refuah Sheleimah, and for one to be blessed with increased Parnassah.
http://www.theyeshivaworld.com/coffeeroom/topic/zos-chanukah-segulos

It is said in the name of the holy Rebbe, Rav Yisroel Rhiziner zechuso yagen aleinu that “what the tzaddikim of the generation accomplish through their lofty Neilah prayers on Yom Kippur, a simple Jew can ask and accomplish with his prayers on Zos Chanukah, the eighth day of Chanukah”. http://www.tehilimhotline.org/online_newsletter.asp?ProductID=212

Good Erev Shabbos Erev 7th Night of Chanukah

B”H we just completed day two of radiation.  It was a rocky start this morning. We had to be in UCLA at 7 am for a 7:30 start time. Well, we ended up only getting treated at 10:45. The machine used for radiation was down and several technicians had to be called to trouble shoot.   Quite frustrating being that Benny couldn’t eat or drink anything all morning. Not something a two year old understands easily. We ended up taking Benny outside to site see the area – not much to look at either!  We did find ball to buy at a UCLA college store and played catch on the grass.

B’H we are now home getting ready for Shabbos and hopefully will catch up on some sleep.

Benny’s “new buddy,” Eli also had a major delay in starting his surgery this morning.  I believe he just started moments ago. Please Daven for Elimelech Ben Basya for a complete Refuah Shlema MIn Hashamayim without having to under go any additional treatments.   We love you Eli and are rooting loud and hard!!!

Happy Chanukah!  Please have in mind all the Cholim as your light your Chanukah candles and Shabbos candles. As you look at each candle, envision them all coming together and the great strength they have as they are joined together.  The force is so much more powerful all in unison.  The candles represent each and every one of us.  We each have our individual strengths, but as a team we can achieve levels that are supernatural.  Let’s reach that level this Chanukah!

Good Shabbos!

PS.  Just got this email as I finished this post

written by Ette Schoor -organizer for Achiezer – Hurricane Sandy relief program:

I just got a call from the head of warehouse! He said that out of all the trucks we got yours was by far the BEST!!!!!!!!!!!!!! He said it was truly wrapped with “love” filled to the very top!! With amazing stuff!!!!! Our committees are so excited to give to the needy families!! May Benny have a big refuah shelama in the zechus of all you have done for our community!!! Gut Shabos and Happy Chanukah!!!

We don’t’ take any credit – it’s wonderful to be part of such an amazing community. Thank you Los Angeles community for your outstanding effort and tremendous act of Chessed (kindness).

 

6th Night of Chanukah

We desperately need the light and miracles of Chanukah to shine down on us.

On the way to radiation this morning, I took a detour to attend the Levaya of our dear friend Mrs. Erika Klein. There were no Hespedim (eulogies) said over because of Chanukah, however, a few key points were given over. Erika’s last actions and words were shared by her son Kolev, with the gathering of 100′s and 100′s of people. Erika davened (prayed) every chance she had, she was able to say Viduy and ask for forgiveness (not that Chas Veshallom she did any harm), she gave Tzedaka (charity) and said it should be a zechus for the Cholim (ill) in the community, and last she said there should be no Machlokes (fighting).   A very powerful message indeed.

What is the opposite of Machlokes? Achdos (togetherness)!  We so desperately need to come together as a community and as a nation to help each other.

B’H Benny’s first day of radiation went well. We got home close to 1 in the afternoon and shortly after had to head to CHLA for a scheduled blood transfusion. On the way, Benny had vomited so we turned the car around to go home and clean him up. We got to the hospital around an 45 later. The transfusion took about 2 1/2 hours and we finally got home around 6.30.

During our visit to day hospital today, we saw our least favorite site, a “new face.”  This wasn’t just any new face, it’s one of the cutest, most delicious and adorable face that I have seen many times before….in my home! This was the face of our close friend’s son.  A face that my second grader goes to school with.

I am sharing this information (which I received permission from the family) for one reason only and that is to ask for your help. Tomorrow, IY”H Elimelech Ben Basya will undergo a biopsy at 10:30 am Friday morning.   Please poor out your heart and Daven for his complete Refuah Shlema. Let this all just be a bad dream.

I received an email this morning saying that Rav Fishel Schechter said today, that one is not allowed to ask for a miracle. However, on Chanukah we are allowed to ask for a miracle.  We must take the holy words of Mrs. Erika Klein O”H, stand united as one, Daven, cry, beg Hashem for a great miracle, the Refuah (cure)!

Tonight, is the 11th Yartzheit of Ari’s father, Yehoshua Elyokim Hakohen – aka Jerry Brecher. May his neshama have an aliyah. May we be Zoche to be speedily reunited with him in our days.

I”YH I hope to have good news to report before we we reach the 7th night of Chanukah. By then I want to ask for a new miracle, the Geulah!

The  hour is late, we have to be in the hospital for day two of radiate n at 6:45 am.  I think I may be in trouble.

Please take a good look at the picture below. Study these faces so that you have them in your head and in your mind, in your prayers and throughout the course of your day.

Benny’s “new” friend in the hospital.  Refuah Shlema Elimelech Ben Basya. May Hashem bless the family with strength to get thru this most difficult hardship.

5th Night of Chanukah

I dedicate tonight’s post to our beloved friend,  Mrs. Erika Klein O”H.  It is with great pain and sorrow that we mourn the passing of this Holy Woman, Nechama Bas Kolev.

I have been crying now for days… I just heard less than a week ago to Daven for Nechama Bas Kolev. How could it be?!  We need the light of the Menorah tonight to guide us through this most difficult time,  as the world just lost a very special light.

Mrs. Klein, had a radiance about her that was indescribable. She was a Tzenuah (modest) woman. There was not a week that went by since Benny was diagnosed that Erika (that is what she insisted I call her as I got older and we became closer friends) did not come by on Erev Shabbos, with either with a bouquet of flowers, picked from her garden and beautifully arranged in an elegant glass vase, or homemade chopped liver and coleslaw and sometimes a delicious dessert.   This Shabbos treat was much more to me than the flowers or the food. I so looked forward to her visit every Erev Shabbos when she would drop off the flowers and food. It brought me tremendous support and comfort.  Erika would say how much Chizuk she got from “the blog,” but I would say the reverse. I was the one getting the Chizuk from her. The last visit before we went into transplant I remember loading her trunk with all the vases that she had brought flowers in. She was going to refill them! Now I have only tears to fill them with.

I have known Mrs. Klein since I am a little girl. Every Friday night for years and years we would visit. When my parent’s had to go out of town, I stayed at the Klein’s house. Not only because she was the absolute best cook, she was so kind and I just enjoyed being in her company. I was never homesick there, because she made me feel at home. Oh how I miss those happy days!

I will IY”H write more later. The hour is late and the Levaya is in a few hours. It is at the same time that we are supposed to be heading to the hospital for Benny’s first day of Radiation IY”H.

Earlier today, we met with the radiologist Dr. Wong, to go over the treatment plan for radiation. It took a little more time in planning for a good reason B”H. The original site that was infected showed no signs of disease or scar tissue (which they normally radiate). Without getting into too much detail, not relevant,  Dr. Wong showed us the diagram of the radiation. It was in the shape of a “wishbone.”  Oh! how I loved making a wish with those when I was younger. Now, I will wish again and again, everyday as Benny undergoes his treatment. I wish Hashem, please bring a happy end to all the pain and suffering we are experiencing. I wish for the Geula, the Refuah this Chanukah IY”H.

I wish that we never have to say the words, Hamokem Yanachem Eschem B’soch Shaar Avlei Tzion M Yerushalayim, ever again.

 

 

4th Night of Chanukah

Today, we ventured out to find the ultimate Chanukah gift and I think we found it!

A Luxurious Menorah!

Tonight we celebrated the 4th night of Chanuka first at a Shul party with a live animal show and then at a family friends home with a face painter. Benny was fascinated by the animals, mostly lizards and then by the paint on his siblings faces.

We have one more day to explore for some more unusual Menorahs as radiation is now pushed off to this Thursday IY”H. B”H the delay is a result of scheduling and not Benny’s health.

 

Happy Chanukah!

We have been busy enjoying the past couple days of Chanukah to the fullest B”H.

The treatment of radiation is now scheduled to begin this Wednesday.  The doctors anticipates Benny  to have a decrease in appetite once radiation begins. So our job over the next few days is to fatten Benny up.  It couldn’t be at a better time, with plenty of doughnuts to chose from, latkes and chocolate gelt, Bubbie’s mac n cheese,  not to mention Zaida’s homemade milkshakes and ice cream cake.

We continue to pray each and every day of Chanukah that the light of Chanukah be a protection for Benny and act as a shield against any harmful rays. May the light of Chanukah bring only joy and happiness to all of our lives.

Enjoy the photos and Videos of Chanukah so far:

 

1st Night of Chanukah

Benny opening up presents: Video : chanukapresents

DR. Benny

Benny enjoying his cousin William’s Birthday Cake  (click video) eatingbdaycake

Best Seat in the house : Bestseatinthehouse

Click on Video: performancebeforeconcert

Singing with Zaida this morning:  Click on Video Ani MaaminZaida  “I Believe…”

Zaida and Bubbie’s Chanukah Party

Opening more presents Click on Video openingpresents

Eating Doughnuts – Benny had to try the chocolate, jelly and custard

Benny checking out his Chanukah Gelt!

Wishing you all Good Shabbos!

Thank you Aunt Tiki for this wonderful Chanukah Cheer
The Benny Chanukah Cheer!
B-Is for Brave Maccabee soldier
E- is forEight candles of light illuminating the world
N- is for Nais gadol  each and every day
N-is for  Ner Israel shining brightly
Y- is to say You are a  Yeled Tov
Love, AT
As we approach our very special holiday of Chanukah, we are uplifted and hopeful that the miracles of Chanukah will bring Benny and all the Cholim we know and love and those that we don’t know the miracle of a complete Refuah Shlema.
I have read many times how powerful it is the not do anything after we light the candles, but to look at the flames and think of the great miracles that occurred. The time of Tefilla is so powerful at this time as well.
Wishing you all a Good Shabbos and a very Happy Chanukah!

Life’s a Marathon! How do we train for it?

As I mentioned last night, today would be a busy day and it was. I wasn’t anticipating Benny being up a good part of the night as well, so getting up this morning and making it thru the day was quite challenging.

B”H the scan went ok and Benny came out of sedation with only minor irritability. On an interesting note, I mentioned to the doctor that I took Benny to the marathon on Sunday and described the spot where we stood to cheer the runners on. Across the distance there was a spot where a couple could get married, it was called a run thru wedding. After the 5 minute ceremony the couple continued their race in the marathon. It was fun to watch and a thought to ponder as to who would do such a thing.  Today, that thought came to fruition.  After telling our story, the Radiologist told us  a number of years ago he ran the marathon with his future wife and got married along the way too!  Would you call that Hashgacha Pratis! LOL  Once again, Hashem brought humor into an intense environment this morning and took the edge off.

The later part of the day, we had a clinic appointment with Benny’s primary oncologist to go over the next plan of treatments. While in clinic we saw many of the same patients as well as some new ones. One particular patient stuck out in my mind, it was a  Jewish young man around 15 years old.  He had a head full of hair, so hopefully it was just a follow up appointment that occurs once a child is in remission and not a new admission.

On other occasions if I were to see another Yid in a place where I least expect it, my eyes light up. What usually transpires in about 5 minutes of Jewish geography is you find someone in common that you both know. In clinic/hospital, this activity is not the case. Although, many times I am tempted to get the patients Hebrew name so I can Daven for he or she, I remain quiet out of respect for the patients privacy.  I try and recite a chapter of Tehillim (Psalms) and quietly ask Hashem to send the Refuah that the patient needs and those around.

We will know in the next couple of days if Radiation will IY”H begin next Monday or Tuesday.

Most of the time, I only post pictures of Benny filled with happiness, today I am attaching a picture of the CT machine. Why you may ask? To remind all of us that this is real, this is why we are Davening and making the effort to change the way we recite Brochos (Blessings), to go the “extra mile”, marathon and all!  May your Tefillos and Zechusim be a source of Refuah for Benny and a protection for all of you, so that you may never witness one of these machines first hand.

There is so much to learn from observing a marathon. The training that goes into running, the drive, the perseverance, the determination to make it to the finish line. The sense of accomplishment one feels at the finish line. Life is one big marathon. It’s about how we run the course and handle the bumps in the road or avoid the pot holes during the journey. It’s also about enjoying the places we pass along the way.  One difference I see though, in a marathon the longer you run the harder it is on the body. In life, the more one works on his/her Middos (character traits) the easier it is to do good and the strength you get to move forward.

 

Gearing up for next Phase of Treatment

Today, B”H Benny was feeling up to spending most of his day outdoors.  He enjoyed a nice long walk in his stroller to the Grove (an outdoor shopping center), got a new pair of Shabbos shoes, and slurped a mocha ice blend on the way home.  I figured I give him a good time today, because tomorrow may be a bit on the difficult side.

Tomorrow morning at 7 am, Benny enters into his next phase of treatment IY”H.  He is going  in for a cat scan which requires him to be put under sedation for about 2 hours. This scan is to prepare for the upcoming radiation within the next few days.  The radiation he will be receiving is a very low dose that takes just a few minutes over the course of 12 days.  Being that Benny is just 2, he will have to be sedated each day to ensure that he does not move in the slightest, while the treatment is administered. The sedation is what may be the difficult part of this next treatment. Benny is not allowed to eat or drink for many hours (4-6) before anesthesia.  The treatment center is about 45 minutes from our home, so it could get tricky trying to keep Benny happy without giving him a drink when he wakes up. The other difficult part is once Benny comes out of sedation IY”H, waiting for the anesthesia to wear off. This usually causes irritability for up to an hour or so.  The doctor expects the whole process to be about 3-4 hours a day outpatient.

Most likely, the radiation will be taking place throughout Chanukah. What could be a better time?!  Benny will IY”H have the miracle of Chanukah on his side.  The “light” that he will receive IY”H should only be filled with Refuos and Yeshuos. Something to please have in mind as you light your Menorah!

Please have extra Kavana in your Davening (prayers) tomorrow morning as Benny will be under anesthesia for a couple of hours.

Below are some more videos of the Marathon and other activities that hopefully will cheer him up as I remind him during his treatment.

run run

boat ride

Venice

Marathon Winners!!!

Congratulations to all the Chai Life Line runners  (70 total) who ran in yesterday’s Rock N Roll Marathon in support of Chai Life Line. Thank you Yehudis, Dena, Helena, Riki, Alyssa, Alison, Michel, Avi, Kalmen, Bayla,  who ran as members of Team Benny and raised large contributions for Chai Life LIne as a Zechus for Benny’s Refuah.

Words cannot describe how moving it was for Benny & I to cheer you on as you passed mile marker 3. While we were in the hospital last month for close to a month, I would tell Benny that if we get out of here early, I would love to take him to see the marathon in person.  I even wanted to run while pushing Benny in the stroller. Being that I wasn’t able to train, and I didn’t know what Benny’s health status would be, we were left to watch from the side lines, and boy was it exciting.  There were times that we did join in running with other runners, (there were too many people to take notice we did not belong). In total, we ran and walked for about 5 miles out of 13. That doesn’t include the 3 or 4 miles we walked to get to the marathon.

The past 48 hours was the first time in 8 months that we didn’t have to deal with doctor appointments or even think about it. I bet (not that I gamble) we could have ran/walked the 13 miles from just the high of freedom we were on.

I would like to thank our friends J & D who help facilitate our ability to get to the marathon safely without compromising Benny’s health. Your level of Hachnosis Orchim is truly remarkable. Benny felt like a VIP all the way!

 

 

One week of “Normalcy”

One week of “normalcy” B”H. What we call normal is not being in the hospital. Other than having to go in for a check up appointment, Hashem blessed our family to be together for one full week at home.   Sure life has it’s every day challenges, getting homework done, kids over sleeping in the morning (the mom too!) and a possible ear infection for Benny, but those are challenges gladly accepted.

Lately, Benny has not enjoyed taking a bath, I am not sure why. Maybe they were not that exciting in the hospital and it is one more thing we have to retrain him in. But, today I asked him “would you like to take a bath?” He said “no.” Then I said it’s for “Shabbos”. Before I had a chance to turn around, he had pulled down his pants and removed his diaper ready to go in the tub.  As a bonus he let me wash him all up and he even enjoyed playing with his toys.  Thank you Zaida for giving Benny a new bath toy this week.

Have a wonderful Shabbos!  I will be thinking of the inspirational story that Eli told over this week.  We look forward to hearing more this coming week.

 

Family Unity

This morning we prepared for a very special guest, cousin Eli Genauer who was flying in from “the Shtetle” Seattle, for just a few hours to visit with us, especially Benny, and give us words of Chizuk (inspiration).  (Eli’s father, Uncle Koupel O”H and my Zaida Ben O”H were brothers.)

Before Eli arrived, I fed Benny his breakfast. I thought I would act of some advice I received on livening up Benny’s food. Along side his bowl of Cocoa Krispies, I laid out a happy face made out of fruit. Unfortunately, I only got some strange stares from Benny and no takes on the food. Maybe he just didn’t like way the happy face looked!

Since breakfast didn’t go over to well, we headed to the ice cream parlor with Yehudis.  Yehudis is preparing for the Chai Life Line Marathon this Sunday and like Benny, needs calories.   B”H Benny seemed to like the ice cream a little more than the bananas I offered him earlier.

After the ice cream parlor, we went to get some household supplies and groceries. As we were strolling up and down the aisles, I saw something that warmed my heart. It was the biggest bag of popcorn I’d ever seen. It right away triggered my all time favorite made up stories by Zaida Ben O”H, of a little girl Sarale who went shopping with her mother and ended up falling in to the big bag of popcorn…  The popcorn that Benny was holding was not Kosher so we didn’t buy it, but I just had to take a picture of him holding it. It was bigger than him. So now I am thinking that maybe the Sarale story is true after all. LOL!

A short while later after we got home, Eli arrived with my father and my mother soon after. We reminisced about our ancestors which brought smiles to all our faces.  Eli has been going to the Keverim (cemetery) of our great grandparents on a weekly basis Davening for Benny for the past eight months.   Benny as well as all of us have benefitted greatly. Thank you!

Eli then went on to tell us how his life has changed since Benny’s diagnosis. (Please forgive me for sharing this publicly,  I just wanted to give over the inspiration you gave us today!).

Every Shabbos during Leining (reading of the weekly Torah portion),  Eli took it upon himself not to talk in Shul unless it is Divrei Torah on the Parsha.  He began preparing 8, two minute Dvor Torahs to say during each Aliya. This commitment spread to his son, Ezra,who sits next to him, and to his 8 year old grandson who also sits in the row. Three generations now learn during the week to prepare for the Divrei Torah they want to share in shul.  All as a Zechus for a Refuah Shlema for Binyomin Chaim.  After hearing the story, I felt like crying, but managed to get out one word,  ”WOW”.

Ari and I find it incredible when people tell us how inspired they are by Benny’s story, when in fact we are the ones feeling the inspiration from all of your acts of Chessed (kindness).

Eli, I think we are first cousins once removed,  well let me tell you, you are far from “removed.”    You wrote a brief email tonight after you returned home, “Faigie wrote the other day about people asking her “what is the prognosis?”  It is impossible for anyone to know what the future will bring. But I predict a continued feeling of caring and affection between the members of our family and that is a most extraordinary thing.”  I second the motion. We find the closeness of all our family and friends truly remarkable. The sense of unity has given us the extraordinary strength we need to get thru this difficult journey.  You have all taken upon yourselves to look for the cure in a spiritual way and that is in essence the most effective treatment of all.

IY”H we should always continue to feel that way about one another through only Simchos (happy occasions).

Watch video of Benny dancing. It was Zaida who got tired of singing, not Benny who got tired of dancing.  click link : dancing

Which bagel is it going to be?

This morning Benny enjoyed a nice walk in the stroller with his Zaida, his number one fan. He was even treated to a mocha ice blend from Coffee Bean.  As I mentioned yesterday, it is hard to eat alone, luckily Zaida joined Benny in a shake too!

My cousin Ahuva sent me this picture (photographed by Auntie Shira)  of Zaida Ben O”H enjoying one of his favorite treats. Can you see the resemblance?  Ok, so maybe the straws are a different color and Zaida has a few more hairs, but otherwise!

The rest of the day, Benny went on a trip downtown with his Mommy and close friend.  One of the stores I walked into, the store owner recognized me from a month earlier (prior to going into the hospital) and asked me how Benny is.  At the time, I mentioned Benny and gave him his name to daven for him. He then told me he has been davening for Benny since he met me last month. He also mentioned that the grandson of the Baba Sali was in town to give out Brochos (Blessings).  I told him that my husband had just met with the Rabbi an hour earlier.  Amazing timing!  I went to go get Benny who was with my friend outside to introduce Benny to this man and thank him for his Tefillos. Benny was polite, but showed a little more interest in the vintage cash register. The nice man even offered Benny to take the register if he wanted it.  I was truly amazed that this store owner whom I had only met once before, was praying for Benny throughout stem cell and today I was able to introduce him to Benny and say thank you! Although, I don’t see Benny as sick B”H, and have even begun to enjoy brushing my lips against the top of his hairless head (he has the softest head imaginable), I do find it necessary whenever possible to ask people to daven for his Refuah. I know Hashem loves to hear our prayers and if there is someone out there willing to ask Hashem on Benny’s behalf for his Refuah, why not sign them up to the task!  We are forever grateful as well.

When I got home I began to prepare dinner. The first dinner since I have been home.  B”H we have been very blessed with close family and friends who have done an incredible job in caring for my family this past month and feeding us delicious and nutritious meals.  I was up for the challenge today and B”H succeeded in cooking.  It was only vegetable soup and baked zitti, but they kids were happy.  The difficulty in making dinners is being able to put Benny down while I am preparing the food. He has been attached at the hip for many weeks now and won’t even sit unless he’s on my lap.  Today, I got lucky with 20 minutes of his sitting and watching me as I prepared dinner. As I prepared the soup and sliced the onions, Benny began whining for a piece. I gave in to him and watched as he took a bite. It didn’t take long before his face showed signs of dislike and quickly spit it out.  Then he pointed to the zucchini I was slicing and asked for that too.  I kept telling him it was not a cucumber, but he wanted it, and sure enough he ate two pieces. It wasn’t the calories I was looking to get into him, but he was at least willing to try. He also ate a few bites of a bagel with peanut butter in the center and then a few bites of a second bagel with the peanut butter on the top, and finally a third bagel flavored with chocolate chips. He liked that one warmed up. In total, he probably ate a 1/4 of a bagel, but I had to buy time and distract him as I prepared dinner without having to hold him. Unfortunately, he didn’t take a bite of dinner!  Tomorrow is another day IY”H (G-D Willing).   Thank you for sharing some creative food ideas and techniques to interest Benny. I will try and incorporate them soon.

Calories

The current challenge we face is trying to get Benny to eat at least 1000 calories a day. Many foods that he used to like, he no longer shows an interest for the time being. Today, I thought I would try with ice cream. In the stroller and off to the ice cream store we went. Upon entering the ice cream store I asked the gentleman behind the counter to direct me to the ice cream with the most calories. He looked at me and said, “lucky you!”  I replied that it wasn’t for me, but for Benny.  B”H I did get lucky in choosing the right flavor. Benny enjoyed almost a full kiddie scoop of vanilla ice cream with peanut butter and chocolate mixed in. I also ordered a coffee milk shake for the freezer.  We also stopped by the local grocery to stock up in fruit by the foot.  He really seems to like that.

The other challenge I face is getting Benny to eat without me eating with him.  I am not the one the doctor is concerned about!

We are open to creative ways in getting Benny to eat, feel free to share!

What is the Prognosis?

Today, was the first day since we left the hospital that Benny had enough strength to pick out which shoes he wanted to wear for the day, put them on and head outside for a walk down the block. He chose his Shabbos shoes. I didn’t protest. Just maybe that was his way of celebrating he was finally feeling better and wanted to put his best foot forward.

It reminds me of a story of my beloved Zaida Ben ZT”L. I remember going shopping with my Zaida for shoes.  He needed dressy shoes for his grandchildren’s and great grandchildren’s weddings. He always took such pride in the way he looked, not in a showy way, but as a Tzelem Elokim. He would shine his shoes every Erev Shabbos and before weddings.  When he wore his shoes, even after five years, he would feel as if they were brand new and remind me if I was around that I picked them out for him. He had a way of making me feel so special.  This morning, as I watched Benny take his Shabbos shoes out of his closet, he had that very same twinkle in his eye of his great name sake O”H.  IY”H may he also be Zoche to wear his shiny shoes to his great grandchildren’s weddings.

 

Benny spent a good portion of the late morning either walking or riding in the stroller around the neighborhood.  We were told by the doctors we cannot go to any crowded indoor places and to avoid contact with children for fear of germs.  We took a detour to three different locations. One stop being the bakery where Benny chose a cookie out of the cookie case.  As Zaida Ben ZT”L would say, ” I dare you to eat one!” Well, Benny past the test and picked one cookie, the extra large one too!

While visiting the other two stores on our “outing,” I struck a friendly conversation with the store owners and was surprised by the one question both store owners asked me, “what is Benny’s prognosis?”  A bit surprised and not quite sure how to answer that,  I said ,”It’s up to Hakodosh Baruch Ho (G-D), but IY”H (G-D Willing) it will be good.” How is one to know the answer to one’s future? We can only Daven and hope that we all live a long and healthy and productive life.  It wasn’t until later this evening in two separate instances that Hashem validated my answer, and boy was it clear!

Earlier this evening Ari mentioned to me that the Baba Sali’s grandson is in Los Angeles this week and thought about going to him for a Bracha (blessing). I did not think too much into it until I got up to a page in a book that I have been reading (tonight) called, “As Long as I Live,” by Aharon Margalit.  Basically, this holy man is faced with a medical crisis that will affect the rest of his life. Lo and behold, Mr. Margalit goes on a long journey to Nahariya (northern Israel), to get a Bracha from the holy Rav David Chai Abuchatzeira, shlita, grandson of the Baba Sali and son of the Bab Meir, ZY”A.  Please read an excerpt of the book of the Rabbi’s Bracha;

After reading this page, I quickly called Ari and told him to please set up an appointment to meet with the grandson of the Baba Sali for a Bracha. After I showed Ari the book,  he told me it is not the same grandson, but will set up an appointment regardless.  This Bracha really struck a cord as well, being that Benny just underwent a Stem Cell Transplant. Giving Benny a brand “new and healthy” Binyomin Chaim Ben Faigie Sarah IY”H.

The second “coincidence” (no such thing!) was an email I received tonight from my sister.  It was a video of Yaakov Shewky singing “Cry no More.” I guess she hadn’t seen it when it came out last February 2012. The message in this video is so much greater than the first time I saw it in February. Not only because of the war that just took place in Eretz Yisroel, but if you look closely, you will see a sick child without any hair on his head. At the end of the video this young child walks to greet his father by the Kotel with a head full of hair!  How remarkable is that!  When I first viewed this video in February, it was a couple months before Benny was diagnosed.   Now after seeing it again tonight, the message hit home.   Listen and see for yourself.  It’s truly inspirational and quite emotional!

http://www.youtube.com/watch?v=C7ruAmWfb4A&sns=em

The next time someone were to ask me “what is Benny’s prognosis?”   I will answer, “‘LIFE’ which leads to ‘HOPE’ which leads to ‘PRAYER’ and ultimately a long and healthy ‘LIFE’, with the help of HASHEM.”

B”H the afternoon appointment at the hospital went well.  Benny’s cells have become engrafted, which means they are beginning to produce on their own and he did not need any transfusions today.

After we got home, we enjoyed a delicious dinner cooked by Racheli. Thank you! It was really special to sit down to dinner with all of our children and hear stories about their day in and out of school. Benny sat on a “big person” chair and babbled a few questions of his own that he had for his siblings. Yehoshua even managed to get Benny to eat a few bites! We look forward to making many new memories as a family once again IY”H!

 

 

 

Programming a Two Year Old!

The past few days since we have been home from the hospital has been an adjustment. Although, Benny B”H just turned two, it feels like we are caring for a new born baby.  The only difference is Benny is able to call “mommy” & “daddy” all hours of the night from his room. What usually happens is, by the third time he ends up in our room for the night.  Then the fun begins. Benny starts pointing in all directions of where he wants to go, downstairs in the stroller, then back upstairs, then downstairs. This can go on for most of the night. The daytime has not been much calmer. Benny only wants to be held which wouldn’t be so bad if he allowed us to sit once in a while.

We keep reminding ourselves of what Benny has just been through and the tremendous toll it must have taken on his body.  Aside, from the irregular sleeping patterns, he has to be slowly coerced into eating and drinking as well as taking small steps down the hallway. So far the best therapy has been his siblings. Whether it be eating dinner as a family, reading books, playing games, or finding his brother’s goody bag from a friends birthday and eating all the nosh up.

On a happy note, Benny’s counts were B”H good on Friday and even though we had to go to the hospital for an appointment, he did not need a platelet transfusion. We have another appointment tomorrow IY”H.

We had a wonderful Shabbos together with our family, singing Zemiros and catching up on the month’s activities. We also enjoyed delicious homemade food courtesy of Nechama, Devorah and Tamar. Thank you for enhancing our Shabbos table. We hope and pray that we will be Zoche to enjoy all future Shabbosim at home together with our precious children IY”H.

On Motzei Shabbos (Saturday night), Rabbi Ten from Bikur Cholim, along with several other men came to our home for a Kumzits (singing get together). The boys really enjoyed singing and dancing.

Click on Video to watchkumzits

This week we will preparing for the next stage of treatment, Radiation which should begin in one to two weeks for 12 days (excluding weekends).

 

 

 

 

 

 

Seudos Hoda

As many celebrated today across the globe including  Eretz Yisroel (Israel), we celebrated Benny’s home coming B”H. Today we had a mini rehearsal dinner for Benny’s Seudos Hodah (a meal of thanks) hosted by our close relatives the Buckman’s. Thank you Ari & Linda and family for throwing Benny a surprise birthday party with all the “carvings” and extra gravy.  Although, our journey continues with several more treatments over the next 5 months, we are so thankful to Hashem and all of “you” for helping us this far.

We would like to acknowledge our dear cousins in Israel (may they continue to remain safe) who went daily (while we were in the hospital) to pray at the Kever (grave) of our beloved Zaida Ben ZT”L (remember the righteous for blessing). They requested of our Zaida ZT”L to be an advocate for Benny before the Kisey Hakovod (the Holy Throne). We are forever grateful and look forward to celebrating Benny’s Seudos Hodah in Eretz Yisroel this coming year IY”H.

Benny wanted to spend most of the day outside. We all took turns taking him on walks in his stroller. He still does not have much of an appetite. We were told by his doctors that his sense of taste is altered, temporarily.  As his body continues to heal and rebuild itself so will his taste buds IY”H. Hopefully, very soon, especially because so many of you are adding extra Kavana (concentration) to your Brochos.

Since we are home from the hospital all we want to do is rest. It feels like we just got back from a trip around the world. We’ve never been around the world, but we can only imagine and now feel the jet lag! The duffles are still full of “stuff” from the hospital, they will have to wait for now.

IY”H Tomorrow, we are headed back to the hospital for an outpatient clinic appointment. We pray for it to go smooth and that if Benny needs a transfusion of platelets it should be a good match.

Home Sweet Home

It was a long morning. Benny woke up before the crack of dawn – 5 am pointing to the door calling “Daddy, Daddy.”  Benny was ready to go home. It took about 6 1/2  hours later for the doctor to come in and sign the discharge papers. We tried every trick in the book to try and get out earlier but all failed. I even said I was going to eat a big breakfast in the room (a big no no on BMT), but they didn’t buy it!  So we waited and waited until finally we played the “Get out of Jail Free” card and sure enough the doctor signed off. As we crossed over the BMT ‘line’ I took my surgical booties off, tossed them in the air and bid farewell to all the nurses waving goodbye!  It was definitely a moment non of us will forget!

Reflecting back to the first night we were admitted, hearing the sirens of a Code Blue brought fright and reality to the danger we now faced. B”H it was the only time we heard the sirens during our stay.  I do believe they were a message that first night to awaken us to pour out our hearts in prayer and do the best we can to make a Kiddush Hashem during our hospital stay.

B”H we all accomplished in safely returning Benny home while making a Kiddush Hashem. Most of the staff were eager to help us keep Shabbos by opening electric doors etc, they were amazed at the daily food drop off’s by volunteers, and overall the support of  our incredible community. I think it was the chocolate rugelach treats, challah and Bubbie’s meatballs that won them over.  We hope BE”H never to spend another Shabbos away from our family and in the hospital.

Benny enjoyed the rest of his Hebrew Birthday outdoors going on several walks in his stroller, while watching a clever video his cousins in Israel made for his birthday.  The video was a trip to the Biblical Zoo in Yerushalayim (Jerusalem) and all the animals wishing Benny a Happy Birthday. He was equally delighted seeing and playing with his siblings when they got home from school. Then we came home to a wonderful aroma in the kitchen. A home cooked gourmet dinner by Avigayil R. was dropped off and gobbled up in minutes. It was an amazing feeling to sit around the kitchen table and enjoy a delicious home cooked meal with my family. It literally felt like that first meal you eat after coming home from a long summer at sleep away camp. Not only is the food amazing, you crave the closeness of a family united all together once again.

He hope and pray that Benny will continue to regain his strength, appetite and bounce back to his himself shortly.

 

Get me out of here!

“Get me out of here!” is a famous phrase known in our family that has been said over  thousand’s of times by our beloved Zaida Ben ZT”L. It’s from one of Zaida’s favorite made up stories about a little girl Sarala who falls into an enormous bag of popcorn while grocery shopping with her mother and can’t get out. Sarala is finally heard yelling “get me out of here” by the garbage men who safely return Sarala to who mother.  B”H Benny didn’t have to fall into any popcorn to get out, although, he did consider it!

Tonight/Tomorrow we celebrate Benny’s Hebrew Birthday IY”H. And boy what a celebration it is. Today we received news that tomorrow is the day Benny is going to be discharged.  We’re going home IY”H.  Benny’s counts are B”H great, however, he does need to regain his appetite.  We were able to convince the doctors that he would eat and drink better at home. I pray to Hashem we are right.  We don’t want to come back due to dehydration G-D forbid.

Just one week ago we celebrated Benny’s English birthday and the sprouting of his new cells coming to life. Tomorrow, we will IY”H celebrate life outside of these four walls – (Daled Amos).

It has been a long three weeks, 24 days. It almost feels like sleep away boot camp. The kind that you sleep out in the wilderness, with ‘out houses’, inedible food, no visitors and no privacy, and many drills at all hours of night.  In the course of these three weeks, as in camp you meet a lot of people. While some you may only meet once or twice, there are those individuals who you really get to know and develop a relationship with. In fact, as I am writing this post I just received a call from the security officer downstairs who heard we were leaving tomorrow and she wanted to say goodbye and exchange numbers.

We are forever grateful for the exceptional care Benny received on the BMT floor from an amazing team of doctors, nurses, child life specialists and all those in between like the hospital administrators, security guards, parking attendants, and housekeepers.   We are also so appreciative of those that were able to visit Benny & play with him, or just drop off things for him to play with. Zaida, who came every morning with breakfast, Bubbie, Babi & Auntie Shira, Aunt Devorah, Aunt Nechama, Shoshie, Yehudis, & Miriam who entertained Benny during the day and of course Benny’s brothers and sisters whom he loves so much.  We couldn’t have made it without the incredible support of Bikur Cholim and Chai Life Line.  A special thank you to those that helped run our home while we were away, doing homework with the children, babysitting, preparing dinners, grocery shopping, errands and taking the kids places. Most importantly, thank you to all of you who participated in getting Benny through transplant safely through your Tefillos and all the extra acts of Chessed you took upon yourself as a Zechus for Benny’s safe journey. Big thank you’s to those that contributed to Super Storm Benny, and to those that helped in the process; my father, Avigayil, Tamar, Aliza, Dena, Avigayil, Lauren and Raizy.

Three weeks of vulnerability is a long time. However it did give us the opportunity to reflect, day and night about the meaning of life, about the wonders of Hashem (G-D), about the amazing acts of Klal Yisroel (mankind).  I pray that we can continue to have these feelings of closeness with Hashem and Klal Yisroel without having to endure any more pain.

May the Achdus (togetherness) of Klal Yisroel be a shield and the protection our brethren need in Israel and may we all merit to live thru the Remdemption in our time.

Benny is Back!

B”H Benny woke up this morning fully charged. Over the past several days his ANC/white blood counts has been rising. The beginning of his new counts began Wednesday,  his birthday, but not enough to chart. Thursday was the first day that made it to the charts at 50. Followed by Friday at 310 and then Shabbos morning at 1150. Sunday morning measured 4300 and this morning B”H 8900. These are amazing numbers and are a result of your endless Tefillos.

B”H now that Benny’s counts are where they need to be, the doctors are able to wean him off his medications.  The only things preventing us from going home is his ability to hold on to his platelets (which B”H he did today) and his ability to eat and drink.

This past Shabbos during Kiddush Benny showed his first signs of interest in drinking. He drank about 2 oz of grape juice and some chocolate milk. Shabbos morning also brought back his winner smile and playful personality.

Ari and I were discussing the idea of “new beginnings.”  When a baby is born the gratification is enormous from a baby’s first smile to the first time a baby drinks his mothers milk.  Although, Benny B”H just celebrated his 2 year old birthday, we re-experienced these first stages this past week post transplant. Days and weeks went by as we waited anxiously for Benny’s cells to start reproducing on their own. The feeling of a great miracle taking place when you hold your new born is the same feeling we shared for the second time with Benny this past week. It also was an incredible lesson in realizing that this feeling should exist each and every day of our lives.

Unfortunately, we cannot celebrate Shabbos every day and since then Benny refuses to eat or drink. Now that the Bracha of Asher Yatzor clearly impacted Benny’s counts rising, maybe we can channel some new energy into having extra Kavana (concentration) in our Brochos over food and drink. It has been three weeks today that we are here in the hospital and Benny wants OUT!!!  Unless you have a tall ladder that reaches his hospital window or have the ability to give doctors orders to discharge him, please help participate in Benny’s Brochos campaign in getting his appetite back.

I hope to report later today by dinner time that Benny had something to eat or at least drink.

Also, there is still a couple more days to contribute to Super Storm Benny. Please do your part in helping fill up the truck!!!

Benny chilling with his best Zaida this morning.

 

 

 

Day +10

Benny’s white blood cells continue to build. He went up yesterday from 50 to 310 and B”H he did not spike any fevers overnight. He played with his new Shabbos play set this morning and is now happily splashing in the bath getting all clean for Shabbos.

Last night around 5:55 I was getting ready to leave the hospital to attend the Bar Mitzvah of a very close friend. It was then that the head nurse informed us that they needed Benny’s room for a different patient and that we will have to move rooms in a couple of hours. I couldn’t believe this was happening. We finally were settled and comfortable in the hospital, but no it wasn’t meant to last. We not only were moved out of the most private and spacious room on the floor, we were moved into a room 1/4 of the size and a noisy location.  I was allowed to leave to the Bar Mitzvah, but unfortunately they hadn’t changed their minds when I returned. It took until about 12:30 when I finished putting up the last decorations in the room and toys in the right place. Being that we had to downsize, we send a lot home. Hopefully, it is an indication that we are going home soon. It’s also an indication that we can never get too comfortable where we are at, we are in Galus (Exile) ,  we have to always strive to grow and grow until we achieve the Geula (Redemption).

It’s interesting to note, when we first came in for stem cell transplant, it was the same day of Super Storm Sandy.  Then last night was around the same time of Operation” Pillar of Israel.”  Being that we were moved into a much smaller room I call it our “bunker,” and hearing many more machines beep or “sirens” going off, I thought of our loved ones in Israel and prayed for their safety throughout the night.

Let the Super Storm Sandy and Benny’s Super Storm transplant be the only storm that we have to endure and through the Achdus (togetherness)  that we continue to demonstrate be a Zechus for our brothers/sisters in Israel to ride through this new storm without any harm.  It can be done, we just have to continue our Tefillos (prayer), Tedekah (charity), and Chessed (kindness) and remain strong.

This Shabbos we should see the Refuah, the Yeshua and the Geula that we all daven (pray) for.  Please have Benny in mind during Kiddush and Challah that Benny should regain his appetite and be able to eat this Shabbos.

Good Shabbos.

Thank you Auntie Shira for finding some pictures of Zaida Ben O”H playing the Kipa Game