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!
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!
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
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.
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.
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.
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!
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,” 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.
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.
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
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!
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!
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
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!
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)
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.
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.
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.
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
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.
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 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).
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
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.
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.
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!”
It looks, smells and feels like a party!!! Thanks for your warm welcome home.
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…
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.
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!”
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!!!
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.
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.
I will IY”H update the web with pictures of how Benny celebrated his Pesach. B”H he had a wonderful time.
“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!
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.
Ari, Faigie, Yocheved, Rivka Basya, Yosef Tzvi, Yehoshua, Shmuel and, of course, Benny
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!!!
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.
Picture of the Week: Cleaning for Pesach or is It!
Just a quick update written by Rabbi Eli Gewirtz
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.
Rabbi Eli Gewirtz
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
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.
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.
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!
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.
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.
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.
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:
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.
“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.
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 !
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.
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!!!
ok, so maybe the back up needs a little more practice.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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,
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.
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/)
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.
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).
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!!!
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/)
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.
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!)
Picture of Benny Davening. This is what he did every day.
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!
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.
(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.
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/)
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.
by Rabbi Noah Weinberg Articulate your beliefs out loud, and find out if you really believe what you say.
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
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.
When the media hits you with another message, don’t take it for granted. Analyze and question.
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
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.
Ari and Faigie Brecher and family
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.
To achieve significant results in life, the effort must be constant. Don’t waste a minute.
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!
(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.
(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).
(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).
(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).
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!
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.
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.
We are currently selling tickets for Benny’s live performance IY”H very soon.
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!
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
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.
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)
Yehoshua was mighty brave holding an octopus.
Watch video of pikeplacefishmarket
Have a Good Shabbos! Have Tu’Bshvat
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
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:
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.
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.
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
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.
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!
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.
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.
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!
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!
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.
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.
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.
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?
B”H it was a successful day with good Ruach (good spirit), many smiles and lots of laughter.
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!!!
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!
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!
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.
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!
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!
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!
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
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
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)
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”
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.
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
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!
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).
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.
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.
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.
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:
Benny opening up presents: Video : chanukapresents
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!
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.
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.
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” 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.
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
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.
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!
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!
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!
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 watch : kumzits
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).
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.
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!” 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.
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.
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.
Thank you Auntie Shira for finding some pictures of Zaida Ben O”H playing the Kipa Game
B”H Benny’s counts continue to rise. This morning he reached a number .6. He is now showing signs of producing white blood cells. He has 50 cells as of this morning. He needs 500 for three days or 1000 for 2 to even think about the possibility of going home IY”H. He also needs to be able to drink and eat a little and come off his pain medications.
In the meantime, Benny was able to play for a couple of hours and even smile once or twice. We haven’t seen his teeth in almost one week because he refuses to open his mouth due to the mucositis. Hopefullly, the smile indicates that his mouth is healing.
Watch Benny as he plays the new Zaida Ben O”H, Yalmuka (kipa) Game. If any Genauer cousins has a picture of Zaida playing this game please email them to me. We will do a comparison!
Today was a special day. Benny turned two B”H. We celebrated his birthday with family, friends, doctors, nurses and all of you Team Benny players right in his hospital room.
The party began at 12:45 outside on the children’s playground in the hospital. We ordered 3 dozen latex balloons, added a birthday post card to each balloon with a stamp on the cards and the hospital address. Hopefully when the balloon finds a new home they will return the post card stating where the post card came from. Being that Benny is restricted from leaving his room, he was left to observe the take off of the balloons from the window in his room. His brothers and sisters, grandmothers, cousins and friends, nurses and other staff members, waved from the playground and sang happy birthday before the balloon ceremony. Benny retuned waves and blew kisses to all. He was fascinated in seeing the balloons take off and go way up in the sky.
As the balloons traveled, my cousin said use envisioned these balloons going to the Gates of Heaven to be an advocate for Benny and bring back down his Refuah.
This morning as we received the news that Benny’s counts are beginning to show signs of growth, I thought to myself how appropriate it is to occur on his birthday. Today, Benny begins a new year of his life with the help IY”H of the new cells that his body is beginning to produce today.
One of the birthday videos came thru this morning as I was heading to the rest room to wash up. As you will see for yourself it is truly uplifting and I was quite emotional with tears. When I returned to the room, I played the video for Benny and the most incredible occurrence took place. One small tear in his left eye formed and trickled down his cheek. He was clearly touched as much as I was. Benny is not much of a cryer, but if he does cry, you will not see one tear. I can count on one hand how many times I’ve seen Benny’s tears. Today was one of those days that I was able to count his one tear! I recommend having a tissue nearby before opening the video.
Here are some of the videos that were sent in today. We have plenty more to upload, hopefully by tomorrow IY”H.
Please continue to pray that Benny’s blood counts rise and his fevers subside. Don’t forget to spread the word about Super Storm Benny. I
It is early in the morning and I just got updated from the nurse that Benny’s 3 am labs show that his body is beginning to produce white blood cells. B”H this is encouraging news that he is on his way up and on his way out of here (hopefully within a week or less)! Let us hope he can enjoy his birthday today, fever free IY”H and have a piece of birthday cake.
For all of you who follow the blog, today is the day to respond. We are collecting Birthday wishes today!!! When Benny wakes up I will try and record his Birthday Bracha (blessing) to all of YOU!
PS. a special thanks to our dear friend Yehudis who made this 3 foot poster for Benny’s room !
Tonight Benny completed his 7th day from transplant. We are still at ground zero and eagerly awaiting for his body to begin producing his own cells. Benny had a few happy hours playing with his Daddy and riding on his shoulders. The remainder of the day, Benny spiked a fever that continues to go up and down into the night.
Tomorrow we hope is the day that Benny will begin to produce his own cells. Tomorrow we are in the 8th month since his diagnosis, tomorrow is the 8th day since stem cell transfusion and most importantly, tomorrow is Benny’s 2 Year BIRTHDAY!!! The number 8 and the powers that come with it Malah Min HaTeva will IY”H give Benny the boost that he needs.
We hope to celebrate tomorrow with cake and balloons. You are all invited to see Benny wave from outside his hospital window on Sunset Boulevard or in the hospital playground. We hope to arrange for a bunch of balloons for people to send off up into the air as Benny watches through his window. Lift off should occur around 12:30-45 pm. If you can’t make it tomorrow IY”H we can celebrate his Hebrew birthday together on the 7th day of Kislev.
I was reminiscing earlier with Ari about the past year and how it feels like a life time. One year ago on Benny’s first birthday my mother and I took Benny for professional pictures. Little did we know that those pictures would serve as the poster child for the Hafroshos Challah cards that we made in his Zechus for a Refuah Shlema. This past year has been a year of extraordinary challenges and tremendous growth. Benny is only two K”H, yet he has accomplished more in his two years than many do in a lifetime. I have learned so much from him. Benny has a love of life, Simchas Hachaim, a smile that wins you over, a twinkle in his gorgeous blue eyes, a collection of about 15 words in his vocabulary that when uttered makes your heart melt, the best high fives and fist pumps and contagious laughter. We feel so grateful to Hashem for Blessing us with such a delightful, delicious and wonderful son.
For anyone wanting to wish Benny a happy birthday, please send a video of yourselves via email and we will play it to Benny all day tomorrow.
Day + 6 from stem cell transplant. We’ve been warned by the doctors that this was going to be an intense time. And so it is. What we seem to forget from hospital visit to visit are those small tests. I am not referring to CT’s, MRI’s or others, I am referring to those tests that help fine tune our character traits. On an average day there are between 12-20 different workers, be it doctors, nurses, charge nurse, pain management team, social workers, speech therapists, cleaning crews, dietary, and the list goes on. The one that affects your day/night most is the nurse who is assigned to you for a period of 12 hours to take care of most of your needs.
There are all types of nurses. Most well qualified. However, there is more than medical knowledge that makes a good nurse. Yesterday, for whatever reason we did not mesh well with the one assigned to Benny and it was a countdown until her shift was over. We still aren’t quiet sure why she had an attitude the moment she walked in! Personality, religion, we’ll never know. The good thing is that we were able to request for her to be removed from Benny’s team. Needless to say, it was a long day of working on the Middot (characteristics) of patience and Simchas HaChaim (happiness from within). Waiting for the machines to be turned off after the beeping started, waiting for the pain medication to be given, waiting for clean linens after Benny soaked thru them. The other difficulty is how to interact with by someone that you feel does not like you but that you need.
Throughout the day, I was thinking of those affected by “Sandy” and how their lives have been disrupted. They too will have to meet dozens of new people, whether it be those that help them physically, or thru advice. Then there are the contractors, vendors and all sorts of workers that will be part of their lives over the next several months. There will be a lot of waiting … call backs to set up appointments, surveyors to asses the damage, merchandise to come in, installation etc. All in place to test or fine tune our Middos.
In a previous hospital visit months ago, we came across a similar circumstance with one of the nurses. At the time, emotions were high and instead of all our energy being focused on Benny it was consumed with frustration due to personality conflicts. B”H (Thank G-D) we learned our lesson which enabled us this time around to remain calm and focus all our energy on Benny’s well being.
B”H today, Benny’s pain is better at being under control. He was started on an anti itch medication which seems to be helping him. He is sleeping more peacefully at the moment and we can only hope it will remain thru the night IY”H (G-D Willing).
The Asher Yatzor campaign, Super Storm Benny campaign, Hafrashas Challah, learning for the Siyum and 1000′s of other positive actions being done on Benny’s behalf are working. Thank you! Let us hope that tomorrow we will receive good news and that Benny begins to produce new healthy cells. It will be an early birthday present and maybe just maybe he will get to eat a piece of his birthday cake on Wednesday IY”H.
B”H Benny is finally sleeping. It took most of the day about 10 hours to settle Benny down to a comfortable state. The challenge was the medications the doctors recommended for pain, in the past have caused Benny to be jittery and climb off the walls. Also added to the mix was his respiratory rate fluctuating as a result of the mucous build up and the medication given to help with the pain. Being that every child acts differently to medications there is no one particular drug that the doctors can say will work. It’s about trying something and waiting to see how Benny will respond. Then you have to weigh the pros and cons. Over the course of the day the doctor on call was in the room about 12 + times discussing what we can do next to help Benny get thru the next few days. Bottom line, it is up to Hashem when He decides that Benny will begin to reproduce his white blood cells. Once this happens all these symptoms will go away fairly quickly.
We were warned many times over from our doctors that this was going to be a hard week. They were not wrong, although on this I wish they were. Each morning Benny is woken to have his labs drawn anywhere between 4 and 6 am. We eagerly await for the morning when the nurse reports back that his blood counts have begun to rise. Benny just wants out of here so badly.
Thank you to those that have signed up for the Asher Yatzor and that have actually involved their Talmidim and children. There is no greater Tefillah prayer than that of an innocent child davening for another.
The Super Storm Benny will begin its collections tomorrow. IY”H in that Zechus Benny will have a full recovery. Thank you for all the contributions thus far.
It’s only Sunday morning and oh how I wish it was Shabbos. Once Benny settled Firiday night after a very intense few hours, it was clear that he benefited from the special powers of Shabbos. As Ari mentioned in his previous post, Benny had fallen asleep on my lap as he was ready to make Kiddush. He gently dabbed some grape juice on Benny’s lips for Kos Shel Bracha, in which Benny quickly responded. He woke up and reached out for the rest of the cup and drank it all up. I closed my eyes and prayed that Hashem take away his pain and that the Shabbos should bring him the healing that he needs. I can’t say Friday night was easy, with the machines beeping over 12 times, nurses and doctors coming in to check on Benny, but he wasn’t in pain.
Last night, Benny was in pain. His white blood cells remain at zero and as a result Benny has developed Mucositis. IY”H it goes away once his counts start to climb. In the meantime from the mouth down to his diaper area is raw. There are numerous pain medications to give, but Benny doesn’t seem to respond well to them. Instead of calming him, it causes him to be even more agitated.
We are now at “day +5″ since stem cell infusion. The doctors say it may take anywhere from +8-12 days for his body to begin producing cells. In the meantime I do feel there is something we can all do for Benny over the next few days to help ease the pain. B”H Benny has a huge team supporting him. It should only take a couple minutes out of your day. Since he doesn’t have the healing of Shabbos with him, he needs the healing powers of the Bracha (Blessing) of Asher Yatzor. Please take a moment to sign up to recite at least one Asher Yatzor with proper Kavanah for a Zechus that Benny heals immediately without any pain. Please forward this request to your family and friends. Consider your Bracha to be the one that heals Benny! We need 613 a day. Benny has broken the stem cell collection record here at CHLA, please help him set the new record for his body to begin producing white blood cells today!
IY”H we hope the next post is more uplifting and that we can report Benny’s counts are beginning to climb and that he is pain free.
It has been a rough couple of days so far. This is our 12th day at the hospital. We are on “day plus 3″ since transplant. B”H Benny has so far avoided any infections, however, he continues to still spike a fever, have chills, mouth sores, skin irritations, without being too graphic have many diaper changes while coughing up whatever he drank. He isn’t eating anything. Every time he spikes a fever, blood cultures are drawn to test for infection. This next week he will be monitored very closely. The nursing care here is amazing, as I have said many times before.
Last night it took a long time for Benny to settle down. He was so uncomfortable. His nurse came in and told me I should go out and take and break and she will watch him. I took her up on it, as tears rolled down my face. Plus there are specific hours to use the shower and time was running out!
I hope Shabbos (Sabbath) will bring the Menucha (comfort) he needs. May the Kiddush and Challah be soothing and healing to Benny’s mouth and digestive track. Related to the Parsha (weekly Torah portion) of Chaya Sara, the final test of Akeidas Yitzchok (Isaac), hopefully IY”H this to will be Benny’s final test and Hashem will bring him the complete Refuah Shlema that he needs. May the campaign “Super Storm Benny” be a Zechus (merit) for him and all the cholim (ill) a complete Refuah.
Last night was an “all nighter.” Benny did not react well to some pain medication he was receiving and basically could not be comforted until the medication was stopped and left his system. He settled down around 4:30 am. At one point in the early am, I found myself crying to the nurse and saying “it’s just not fair.” I was out of energy! As I was saying it, I know life is not about being fair, but I was feeling sad for our innocent little Benny. It’s so difficult to watch anyone in pain, let alone a young child.
B”H today, Benny was able to rest most of the day. He doesn’t have much energy as his blood counts are at zero. He was in need of a blood and platelet transfusion which only finished about an hour ago. IY”H these transfusion should give him a boost and the protection he needs during this vulnerable state.
The nursing care in the BMT (bone marrow section) of CHLA is outstanding. The nurses and doctors are extraordinary talented, warm and compassionate. Although this ward is run in a state of ”lock down,” patients are not to leave the room, among many other strict rules we know it is for the protection of the patients.
We were able to move rooms today, to a corner room, with a nice view and more importantly, more room to Benny to play in or ride in his stroller. The move took a couple of hours. It is crazy how much stuff we have already accumulated in just 10 days. We can’t take any chances with the attention span of an almost 2 year old IY”H.
Regarding the Super Storm Benny Campaign.
I know many of you are suffering back east, your cold, hungry, have no gas and have not been able to go home! Just know you are in our thoughts and Tefillos and are going to do what we can to help in this time of need.
I am in constant contact with several organizations in the 5 Towns, Bell Harbor, Long Beach and Bays Water and gathering information as to what their needs are. As soon as I have the necessary information for the drive, I will print flyers for all the schools & shuls and put out an email of where the drop off locations will be. In the meantime, if anyone would like to participate in this drive, please let me know. Thank you!
IY”H in the Zechus of all of us helping one another and the Achdus (togetherness), there will be an end to all the pain and suffering.
Dear Family and Friends -
My apologies for the barrage of emails over the last few days. Today is one of the most important days in Benny’s journey to a Refuah Shelaima Min Hashamayim. The doctors on the Bone Marrow Transplant ward call it “Day Zero”. Today Benny gets his stem cells that were harvested months ago. These stem cells are needed for his body to recover its ability to fight infection after the high dose chemotherapy he received this past week. From here on out, our anticipation builds to when the cells “engraft” and his body can sustain itself.
Benny has learned the art of “anticipation”: Anticipating when he can take his next regular bath, go swimming, sleep uninterrupted, leave his small hospital room, feel ok, play with his brothers and sisters, and many other “small” things that most children his age take for granted. Benny has the great book given to him by his friends Walter and Esthie. The singing book has all sorts of hebrew tefillos that he can play. Last night and this morning, Benny fixated on the song Ani Ma’amin (see the video – Bennys Emunah). The selection couldn’t be more appropriate.
We are asking everyone to take a few minutes sometime between 1130 and 12pm today (PST), to say tehillim for Benny and in the zechus of all of these tefillos we will see Benny recover in record time.
Ari, Faigie, Benny and the Brecher klan
Benny is resting comfortably after a difficult morning of not being able to keep anything down and spiking a fever. in spite of it all Benny still blows kisses, gives high fives and smiles.
I was hoping to rest now as well, but my mind is racing. All I can think about is, of course, Benny. My thoughts are equally pulled to those back east recovering and rebuilding from Superstorm Sandy.
I’ve been following the storm and its aftermath and have found many similarities. One article I read writes aout getting used to the “new normal.” I have to say I never liked that phrase. Fear, pain, anxiety, uncertainty, vulnerability, being on the receiving end are not things that one wants to get used too. Although, these experiences change our lives forever it doesn’t have to be in a negative way.
We have been in our storm for over 7 months now. The doctors’ consider this time, stem cell transplant, the most powerful part of the storm when the winds howl, the rains pelt and you just pray for it all to be over and for no major destruction to be left in its wake.
Benny’s fever B”H has subsided. However, he continues to have difficulty in keeping his food down. We are waiting for the chemo to quickly exit his body without causing any side effects.
Sixteen years ago today, Ari and I were standing under our Chupah (wedding canopy). I remember vividly Davening (praying) at the time for our happiness, good health and mazal for each other and our future offsprings. I pray today that Hashem remembers our Tefillos on that very special and holy day and grants our delicious Binyomin Chaim the complete Refuah Shlema he needs.
Tomorrow, is the day IY”H (G-D Willing) that Benny’s stem cells will be infused into his body. It is not painful B”H, rather similar to a blood transfusion, but he will be closely monitored to make sure his body reacts well. It was the day after Shavuos (the holiday of the harvest) that his cells were harvested – 89 million – a record breaker here at CHLA. That amazing collection was only possible with your Tefillos and Zechusim. Fall is the time that we must plant and seed and prepare for future growth. Tomorrow is when Benny enters into his new phase of rebirth. It is these cells IY”H that will give his body the strength and healing he needs to live a long, long healthy and productive life IY”H.
The month of Cheshvon does not have any holidays in it. It is the 8th month from the counting of Nison. The number 8 stands for L’Maila Min Ha Teva (super natural state). These super natural powers , the same that occur on the day of a Bris Milah (circumcision), the same that occurred last week with “super storm sandy”, we are hopeful that these powers will be the force that destroys any harmful cells (if any Chas Veshalom) and builds the healthy new ones.
One of the ways in cheering Benny up is having a cheerful room. I have hung several posters on the walls that represent happiness. Aside from Pin the Nose on Elmo, we have an Alef Beis (Hebrew Alphabet) poster, Perek Shira (Songs of the Universe) and the one that stands out the most is the Siyum Hashas poster- the gathering of 95+ thousand Yiden (Jews) reciting Tehilllim, lead by Rabbi Yaakov Rechnitz. It was meaningful in that we were personally there to experience everyone united together, saying Tehillim for Binyomin Chaim Ben Faigie Sarah.
Three months later we are now gathering together again but for a different reason. Now it is during a time of need. There are many ways to help out, physical help, financial help, and prayer are among a few ways. The key is to get involved in whatever way you can.
In the Zechus that Binyomin Chaim weather the storm he is currently in, we are setting up a campaign “Super Storm Benny.” If you live in the Los Angeles area, we have arranged a 40 foot truck to drive across country to the areas hit hardest filled with essentials to help our brethren in time of need. We are working with Achiezer Org. in Far Rockaway to distribute the items once they arrive. There will be an email going out with further details of various drop off locations and what items we are collecting. If you happen to be out shopping in the meantime we are collecting housewares; pots, pans, mixers etc., towels, linens, school supplies, and lots of toys (Chanukah is around the corner). All items must be new. If you have connections to new furniture items we will accept those as well.
Let us show Hashem that we can unify together not just in times of joy, but also in despair. In this Zechus let Hashem bring the Geulah Shlema and we will unite once again for the greatest celebration ever. AMEIN!
Dear Family and Friends –
After a beautiful and restful Shabbos spent with his Mommy and Daddy in the hospital, Benny had a difficult night. B”H he received all of the chemotherapy he is intended to get (may it be the last chemo of a long long long healthy life – AMEIN!). However, the effects are definitely starting to kick in. Benny has trouble keeping any food in his system and, last night, he developed a fever. We are davening that it should not be an infection, and if it is (Chas V’shalom) that the antibiotics work quickly to counter it before Benny’s counts drop (expected to happen in the next two to three days).
He needs as many tefillos and zechusim as possible to get through the next few weeks.
Please take a moment to say tehillim for him today (pasted below). Also, please take part in one or both of the campaigns being waged on his behalf.
This is something that everyone (even young children) can participate in.
Please take a moment and join in our Asher Yatzar campaign on behalf of Benny’s complete Refuah! This is a great
way to include your kids, and is a tremendous mitzvah. We would like to collect 613 mitzvos a day – (correlating to the 613 body parts & sinews)-during Benny’s hospital stay.The Chofetz Chaim and other Great Sages write that the reciting of Asher Yatzar with
the proper Kavanah (sincerity, devotion, intent) and from the written text, has the power to help one have a healthy body all of their life. https://docs.google.com/spreadsheet/ccc?key=0AtGzm7uMMGbkdEo2NFRjY25vTy10ZV92Vllta1Z6Nmc (also available on the top right of www.teambenny.net)
Join with hundreds of others in completing Torah, Neviim, Kesuvim, Mishnayos, and Talmud Bavli by next summer (sometime in late June or
July). In the week since this was launched we are well past half way to this ambitious undertaking on behalf Benny and other Cholim who desperately need our help. Please help us toward the goal of having commitments for all limudim in the next two weeks.
(also available on the top right of www.teambenny.net)
Forgive me if your name is Sandy and you take offense for my post tonight. Please do not take it personally.
The past few nights, especially the first when I did not sleep at all, I turned on the weather channel to see and hear the latest about Hurricane/Superstorm Sandy. I have been following it as all of us know someone affected by it. Over and over again we heard and saw how powerful Sandy was.
Last night, I spoke to a dear friend in New York who told me a story about her heroic efforts (in a modest way) in helping out her fellow neighbors in a place where she has a summer home. B”H she was not there during the storm, but went to visit it in its aftermath.
As she surveyed the area, the horror sunk in. Her entire neighborhood was under several feet of mud and devastation. She wasted no time in seeing what she could do to help. Aside from knocking on doors to find out how she can help, she rescued a family from their home and drove them to Brooklyn to be with family and friends. The Chessed (kindness) did not stop there. She then went to the grocery, filled up a cart full of staples, bought a phone – charged it and send it in a car service back to the neighborhood for her neighbors who were without food, and electricity. Then the next morning she once again went with fresh food to feed her neighbors. These neighbors who benefited from this family’s kindness do not share the same religion. It did not matter. It is from acts of kindness like that show who is the true “great one.”
Sandy, you may have been great, strong and powerful. But you were great in destruction! The story above demonstrates the greatness in construction! We have it in every one of us to be great, so much greater than Sandy the Great “Destructionist”. Start with one act of kindness and you will see how great it can become. Chessed (kindness) , Tefillah (prayer), and good deeds are the tools to rebuilding and achieving Greatness! Imagine yourself to have the Koach (strength) of Sandy and channel it for the good. Yes, we have to do something about “Global Warming,” so these acts of mother nature do not continue to occur. But the Global Warming I am referring too is the acts of kindness Bein Adam L’Chavero ( between man/woman and his/her friend).
As I sit here in the hospital and think about the situation we are in, the illness, the destruction of this disease I could easily feel despair if I let myself go there. Instead, I chose to focus on the positive that has come out as a result of this situation. It is thanks to each and everyone of you who have shown incredible acts of Ben Adam L’Chavero, that give us the strength to get thru each and every day.
So sorry Sandy – you are not “The Great.” It is the people whose lives you have effected that are “GREAT” and continue to become Greater!
It has taken a couple of days to settle in. We are on day three in the hospital and Benny is still trying when he gets the chance to escape out of the room. Unfortunately for him, he cannot open the door.
Last night as we began to settle in for the night, there was a loud siren on the floor. It was the siren for “code blue.” There were dozens of doctors and nurses running down the hallway to a patients room. Part of the commotion was a mothers cries heard in the hallway. This went on for about an hour. It was quite frightening to hear and see and brought the reality of the situation home. There are children here really sick. We pray that we Chas Veshalom (G-D Forbid) never encounter that fear and pain and that Benny is safe throughout his course of treatment.
The remainder of the night was a great deal of beeping and more beeping. The machines are very sensitive to air bubbles in the lines in which the medications go thru and constantly set off the alarm sensor. Then there are the vitals that are taken every couple of hours and several others tests throughout the night. I finally downloaded an “app” on my phone that has white noise and turned it on to try and block out the constant noises. Tonight I will try earplugs!
Throughout the day today, Benny had visitors of former nurses from previous hospital visits coming to say hi. They were all dressed up in costume. He even got some kosher candy. After all this is a children’s hospital. Although we don’t celebrate the holiday, it was nice to see the effort that the hospital staff go to to make the children as happy as possible.
(continuing Thursday night)
I wasn’t able to publish this earlier as Benny woke up as I was updating last night and it has been a whirlwind since.
B”H tonight is the first night since we are here that I am able to sit by the window sill, sip a hot tea and write the blog before midnight.
Last night the earplugs worked a little to help drown out the beeping noises. The constant vitals did not change, but there’s no way to get around that.
Today, Benny had a hard time. The hospital pharmacy got delayed in sending Benny’s anti nausea medication and as a result he did not feel good most of the day. I hope IY”H that it will be his first and last episode of nausea. At one point in the day, when his nausea subsided his Bubbie was visiting. The moment Benny saw Bubbie, his eyes lit up, he stood up and reached his hands out to dance with Bubbie. It was the highlight of his day and I think Bubbie’s too!
B”H Benny is sleeping comfortably. We were admitted to the hospital this afternoon. It has been a day of learning about rules and regulations that are in place on the BMT (bone marrow/ stem cell transplant) floor. I would like to to refer to BMT as Benny’s Mitzvos (good deeds) Tefillah (prayer) that he will need to get him thru this difficult journey ahead. The rules are set in place to protect the patients from any germs. Benny can have up the 6 visitors, the same visitors for the duration of his stay, only 2 at a time. Benny is the only one permitted to eat in his room. Parents have to go out of the room to eat and use the restroom. Benny is not allowed to leave his room either. The difficult time is when either I or Ari leave the room and Benny cries for us. Hopefully, this will be the most difficult part of the whole process.
We have begun to unpack our bags and settle in. Tomorrow we will decorate Benny’s room with posters and wall decals.
Tomorrow morning Benny IY”H will begin his treatment. He will receive chemo over the next 96 hours followed by a few idle days, then he will receive his stem cells and then we wait for his body BE”H (G-D Willing) to begin to producing his own cells and build up his immunity.
(5 hours later)
Benny woke up at I was concluded this post. He was not a happy camper. In fact he was frantic! Crying and screaming to get out of the room. I had to call Ari to come back to the hospital, as he went home for the night to be with the other children. Finally about 2 hours later, Benny calmed down and fell back asleep. It has been a long night.
As many of you back east are just waking up, that is if you got any sleep at all, know that I have been up with you through out the night asking Hashem for your safety and well being. You are about to embark on a journey of rebuilding as are we. G-D Willing as the sun rises and you are able to asses the damage, hopefully it will just be mild, and will be able to be repaired. The main thing is that you and your family are all safe and remain safe and healthy. Benny’s road to recovery is somewhat similar, however, the duration is longer. He must first receive his chemo which will destroy his cells (IY”H only ones that need to be), and then begin to rebuild his system with healthy strong cells. This will not be a fast moving storm as you all have experienced, but hopefully will feel that way.
We will continue to Daven for your safety as we ask of you the same for Binyomin Chaim Ben Faigie Sarah. May we all be Zoche to share in only Simchos together and the Geula Shelema very soon.
As many of you who follow Team Benny live back east I thought I would write about the similar feelings we may be sharing at this moment in time. These past few days or more for that matter, you have been warned about this dangerous storm that is about to touch down. All you can do is try and prepare for what may be the worst storm Chas Veshalom (G-D Forbid), either by stocking up with the necessary provisions such as; food, water, batteries, radios etc.. and finding a secure and safe shelter. We have been stocking up as well with snacks that Benny likes, toys, books, music, decorations for his room, pi’s, and more (special thanks to the many friends and family members who helped).
Last week as the storm began to evolve, we attempted to enter our new shelter, however, it was too early. So tomorrow is the day that IY”H if Benny gets clearance, will join you in entering our new shelter, along with all the provisions that we think we will need to get us through this unpredictable storm.
Let us hope and pray that the precautions we took in securing the safety of our loved ones was just that, a precaution. Let the storm pass just as quickly as it arrives and leaves without a trace – no harm done!
What will be? We don’t know. Yes it is scary!!! However, now that we have done our preparations, it is time to wait and more importantly pray. The last several months, one common phrase he heard dozens of times, ”we are storming the Gates of Heaven for Benny’s complete recovery.” If there is any storm at all, channel it to the Heavens Above, storm the Gates of Mercy, the Gates of Refuah (cure), the Gates of Salvation and protect us all from harm below.
With no school, no means of transportation, no work, maybe no electricity, enjoy the next couple of days with your family, play a game, read a book together, learn a Sefer, bake some cookies (Benny loves chocolate chip!), or take a nap. A Shabbos mid week! We will try and do the same over the next month.
Benny enjoying his day, what could be better!
Just like the weather, always changing and so unpredictable so is Benny’s admission in to the hospital. No complaints on our end! As we know, everything has its time and currently the new scheduled time is this Monday IY”H. Hopefully, Benny’s cold will have gone away and he will be well enough to start treatment.
In the meantime, we enjoyed a day at the park on Thursday, taking a train ride, riding in a wagon and sitting on a pony, followed by a refreshing ice cream.
We look forward to resting over Shabbos and enjoying time with our children. Benny is looking forward to dancing and singing at the Shabbos table.
We heard a lot of Challah was baked on Benny’s behalf this Shabbos. Thank you! We sure hope it tastes good. Save Benny a piece, Challah is one of his favorite foods.
We didn’t sleep much last night anticipating today’s departure. The morning went pretty smoothly getting the children off to school and tying up lose ends. We loaded up the car with a month or two full of belongings and went on our way. I had already warned the doctor yesterday that we would be needing a fork lift to bring in all our belongings.
We checked in for our appointment with Benny’s doctor around 2 pm. Benny first needed to be examined before he would be admitted to the hospital. We had a long wait, but managed to keep Benny happy in the hospital playroom. First, Benny’s volunteer friends from Songs of Love performed their usual songs. However, when Benny entered the room they changed song to one of his favorite songs,”Tonights going to be a good night, ” in our version “Benny’s going to have a good day!” An hour later another volunteer arrived who is a song writer for Disney and entertained the young children with additional songs and jokes. Benny was more interested in playing with a toy coffee maker and pouring the water in and out of it.
We finally saw the doctor around 4 pm. After Benny’s examine it was determined that he had a bit of a cold and the doctor felt more comfortable waiting a couple more days before starting treatment. So back in the car we went and home sweet home we are.
All of you who prayed for our quick return home, it worked, maybe just a little too fast!
Today was like preparing for a space shuttle launch. The astronauts are dressed in their gear, the shuttle is loaded, the crowd is anxiously awaiting for take off, the count down begins..10,9,8,7,6,5,4.. and then a light starts flashing. Before you know it the mission is aborted and out of the aircraft the astronauts appear. They aren’t waving either!
So much planning went into today. What are the kids going to eat? Where are they going to sleep? Who will do homework? Then, there were the arrangements made by the hospital especially for Benny; ensuring we had a nice room (with a view of course), kosher food for Benny, and a 3 hour class given by Rabbi Ten of Bikur Cholim educating the nurses about Judiasm (dietary and Shabbos).
Once the “mission” was called off, at first it feels like you can’t go home, you already said your goodbyes. Then you say to yourself, “OK now that we don’t have to go in and everything else at home is in place, where should we get away too?” Well of course the thought disappears just as fast as it arrives.
B”H we are not disappointed. We know everything has its time and place and today wasn’t the time nor the hospital the place. We will have to reevaluate Benny’s cold on Friday to see if Friday will be the day or Sunday IY”H. In the meantime we have more time to collect more Tefillos and Zechusim.
Thank you all who have signed up so far to learn on Benny’s behalf and all of those in need of a Refuah.
Benny looking pretty dapper in his new outfit for the hospital. The doctor and nurses got a good laugh! He’s now out on good behavior.
Now that I have had more than 36 hours to recover from the shot, I am feeling much better to write. Although, the hour is late and I should be sleeping as this will be the last night for many weeks that I will be able to get a decent night sleep, I will take a few minutes to update the blog.
Yesterday afternoon after the flu shot episode, I rewarded the kids by taking them out for pizza and then back to school. Benny on the other hand went with me to the market to pick out some treats and then to the Aquarium Store to look at the hundreds of unusual fish in the tanks. Later in the evening he danced and sang with his brothers and even gave his own solo performance for about 25 minutes using a Karaoke machine. It was a moment to savor. One that I will replay dozens of times this month.
Tomorrow is the big day IY”H. It is a strange feeling. At times it feels like the night before Yom Kippur, have we done enough to prepare? We are going away, only 4 miles from home, yet the planning and the packing seems like we are heading to a 3rd world country. B”H CHLA is a state of the art hospital with doctors expert in their field, so that is not a concern. Our main concern is of course Benny’s health during his next phase of treatment. I have spoken to numerous parents who have gone thru this with their own children to learn as much as possible. Each child is different, but the overall census was that we are in for a very challenging time.
I try my best to make the best out of a situation even though it may not be a good one. So instead of going in tomorrow with an attitude that it is going to be horrible, I am trying to find ways to lighten it up. I spoke with one of the head nurses today, asking her for a fork lift to be ready to cary all our belongings to the room. That is of course after we walk the red carpet that was laid just for Benny! I also got a few posters to decorate the room and some cute T shirts for Benny to wear that should give the nurses and doctors a good laugh. They say, “laughter is the best medicine” – one my Zaida Ben O”H (may he rest in peace) firmly believed, let put it to the test.
Thank you all for helping me get ready for Benny’s next treatment. Whether is was through gifts that we received, ideas of projects sent in via email, phone calls and endless words of chizuk (strength), IY”H all our efforts combined will be the recipe for a safe, quick and successful journey to Benny’s complete Refuah (cure).
Five months ago Benny broke records by having the highest count for a stem cell collection or harvest, through your Tefillos and Zechusim (merits) . Let us do the same for seeding of his cells. Let us pray that the chemo he receives does no harm, let the transplant of his stem cells have a healthy reaction and let his blood counts rise in record time which will enable him to go home with an early departure.
To be continued…
Watch Benny admire the fish: Fishswimming
Dear Family and Friends –
So, here we are. Tomorrow begins the next challenge that Team Benny must overcome. While Faigie and I both wish we were able to pinch hit for Benny for the actual treatments, that part belongs to him. Our part – well that’s to do what we can to ensure that the Great Healer knows just how important Benny is to all of us.
People throughout the world have asked us countless times in the past 6 months for us to call on them when we need help. We promised we would when we knew what we needed. Well, here goes.
Tomorrow, Benny will be admitted to Children’s Hospital Los Angeles for what is known as a “stem cell transplant”. It is actually a very high dosage of chemotherapy designed to completely wipe out any remnants of the disease left over from his already extensive treatments. Unfortunately, the body can not automatically recover and begin to produce the white blood cells that fight off disease naturally. Therefore, Benny is given some of his own stem cells to help regenerate his system. This is the most intense treatment of all the treatments he has had and (hopefully) will have.
Benny will be counting on all of us to pull together and back up his doctors and nurses with our “medicine”.
Many of our friends in Passaic/Clifton will recall an effort we undertook years ago to complete “Kol HaTorah” as a community. As a community, we completed Tanach, Mishna and Shas Bavli (Talmud) in one year. Hundreds participated in the learning and the subsequent Siyum (completion) celebration. It created a city-wide sense of Achdus and coincided with a significant reduction in local and worldwide challenges facing the Jewish people (which was what we focused on). While we obviously can’t comprehend Hashem’s calculations and have no true concept of the impact of our actions, we can’t help but feel that we played a small part on the world stage.
It is time again to do something extraordinary. We have come to know some incredible young children fighting cancer since Benny’s battle began. We would like the worldwide Team Benny community to come together on his behalf, and on behalf of these other amazing children, to complete this monumental undertaking between now and the end of June of 2013. This, please G-D, will coincide with the completion of Benny’s expected treatment plan and our expectation of a great Se’udas Hodaah (Thanksgiving Party) and Siyum celebration.
We are asking all of those who can, sometime in the next two weeks, to commit to some section of learning from the attached spreadsheet. The gemara (Talmud) is split into Artscroll volumes – the rest of the sections are self-explanatory. (Benny’s Siyum Signup – when signing up, please include your name, phone number and email address so we can follow up. If you see a section that you would like to learn is taken, please write your name down anyway and learn in their zechus.)
I hope to send out a list of names on approximately a monthly basis to have in mind while learning.
We pray that the zechus (merit) of the additional Torah learning act as a powerful drug to end the suffering of Benny and all other children afflicted with these terrible illnesses.
In the merit of all you have done, and continue to do, for us, may Hashem grant you and your families nothing but good health, blessing and yiddishe nachas.
Ari, Faigie, Benny and the Brecher klan
This morning I took my kids to the Dr. to get the flu shot. While I was there I asked the Dr. if she would be so kind as to give me one as well. She was happy to oblige. Little did she know what she was getting herself into or for that matter her entire staff. My kids were great and didn’t make a peep. I on the other hand, requested for the smallest needle, squeezed my daughter’s hand tight, had an ice pack handy and a cup of water. Even after all those previsions, once I got the shot I had to lie down on the floor literally as all the nurses and doctors watched in disbelief. My kids were laughing, including Benny who was most surprised of all. I was too faint to be embarrassed . B”H after about 25 minutes of cold compresses, and the nurse fanning a paper at my face I got some color back in my face and was able to leave. It’s a good thing my kids went first, because they sure wouldn’t want to go after me! I hope and pray that today was the worst part of what is to come.
This past Shabbos, Benny enjoyed the company of his Zaida and Bubbie, and cousins, Miriam Tova, Moshe Eli and their adorable children, Binyomin, Shira and baby Shmuel Tuvia. The highlight was after the meal Friday night, Benny wanted to dance to Zaida’s Zemiros. He started dancing with Zaida, and fairly quickly he pointed to one person at a time to come in and join the dance circle. It wasn’t before long that he had us all dancing with him in one big circle. A few times, Bubbie tried to sit down out of exhaustion, but Benny wouldn’t have it. He stopped the dancing and waited patiently with his arm stretched out, until Bubbie got, up took his hand and rejoined the circle. This went on for about 25 minutes!
We couldn’t get over his Simchas Hachaim (love of life). All that he has endured thus far, and yet he is so happy. What a tremendous lesson! It was a moment filled with lots of emotions. Happiness and appreciation as to how well he is doing, B”H (Thank G-D), and yet, sadness, because of what he has to go thru in a few days.
As I begin to pack up for the month, I wonder how prepared we really are. Is there really a way to prepare? We live in Los Angeles, “earthquake country,” occasionally, there is talk of “THE BIG ONE!,” usually after we experienced a smaller one. There are discussions of how to prepare for the big one, but in reality, as much as we prepare, we don’t know the outcome until it hits and we can survey the damage. Let us pray that no matter how “BIG” it is, there is no harm done!
As we approach the most difficult phase in Benny’s treatment, there is worry and fear of the unknown.
Worry – will it be difficult to keep Benny in his room for weeks. The last time he was restricted from leaving his hospital room it was for three days. It felt like 10! I remember we begged to take him for a ride in his stroller while wearing a mask, but that was not allowed. There is no begging this time that is for sure. We know these restrictions are put in place for the safety of Benny and the other children going thru treatment, but it doesn’t make it any easier.
Fear – Will this treatment do more harm than good, Chas Veshalom (G-D Forbid)!. We know this is part of the treatment plan to fight this horrible disease, we just pray that Benny is spared of any complications.
The other fear is my own personal fear of shots. One thing I have to do before we go into the hospital is get a flu shot. I’ve pushed it off for days already. I just don’t know how I am going to do it. It’s crazy! Here, Benny has gone thru who knows what, and I cannot even get a shot! Just the thought of it makes me lightheaded.
Aside from preparing the physical items to take to the hospital, such as toys, books, projects and cards to decorate his room, even more important, is the spiritual preparation. In previous treatments we asked for extra Kavana (concentration) said on the Bracha of Asher Yatzor and other Brochos (Blessings) as a Zechus for Binyomin Chaim Ben Faigie Sarah. We are requesting the same once again, however, we are trying to collect at least 613 per day for the duration of Benny’s hospital stay. We will be adding a link on the website to a spread sheet to sign up too. Feel free to pass the link along to your family and friends in an effort to help in this great Mitzvah of healing Benny. Thank you all! A special thank you to Rachel and Jonathan Gudema who created this spreadsheet.
As we prepare for Benny’s admission into the hospital this week, there are many things to do. During the course of his stay he will most certainly need blood transfusion and platelets.
In past treatments, Benny has been fortunate to be the recipient of direct donor blood thru the amazing help of Bikur Cholim .
It would be a tremendous Mitzvah to sign up for Bikur Cholim’s next blood drive. This will help Benny and the many children from our community who are treated at Children’s Hospital CHLA. Please sign up for the Bikur Cholim Blood Drive at Yeshivat Yavneh on Sunday 10/28/12 at www.bikurcholim.netor www.facebook.com/bikurcholim.losangeles.
Please mention you are on Team Benny to receive extra special care and receive a Team Benny Most Valuable Player certificate.
Thank you and Tizku L’Mitzvos!
As many of you ladies bake each and every week as a Zechus (merit) for Benny, I would like to share a few words of Divrei Torah that I received from a dear friend Aviva, on the significance of 40 women uniting in this Mitzah.Written by Aviva Aberman:Parshas Noach:
What is the significance of forty women baking challah for a refuah for a choleh (sick person)?
In this weeks parsha that the mabul was forty days long! Why forty??? What is it’s significance? I asked my husband and he pointed out that we had to wait forty days to receive the Torah!
Hmmm…investigation was required.
Here is what I found written by Rabbi Yitzchak Ginsburgh (in red letters)The number 40 is of great significance, not only in mysticism, but also in the simple understanding of the Torah. For example, the 40 days that Moses was in heaven to receive the Torah, 40 days of the Flood. In addition, 40 relates to the 40 days from the beginning of pregnancy until the fetus is well formed. This is a very important stage in pregnancy.(our spiritual fetus is being formed!)40 is also the value of the letter mem, which means water. This is why 40 refers both to the Torah, which is water, and also to the Flood. In the future the flood will be a positive concept–the flood of knowledge of G-d. This is the inner soul of the Torah which will fill the earth just as water covers the seabed. Water covering the seabed is the secret of the letter mem and the number 40.In addition, when one becomes 40 years old he receives the deepest measure of understanding, in order to understand the Torah. This is especially in order to understand the deep intention that his teacher had that he was not able to comprehend initially. At the age of 40 one understands his teacher’s inner meaning.So….now we can see why forty is used exclusively for major happenings. It is a major number that brings depth and overflowing knowledge of Hashem (G-D).As we head into the Teiva (ark), I mean hospital this week IY”H, just as Noach entered he did not know how long his voyage would take him, neither do we. I can only say that will be dependent on all of us helping Benny along with Davening and Mitzvos. The Teiva represents a vehicle of protection from outside influences. Benny needs our protection now more than ever. IY”H this should be Benny’s last round of chemotherapy. We pray that the chemo purifies his cells without causing any harm, both short and long term. Taking on one personal thing during this crucial time to protect ourselves from outside influences (whatever they may be) can be a tremendous Zechus for Binyomin Chaim Ben Faigie Sarah and all the Cholem (ill) who desperately need Refuah Shlema.Good Shabbos!
B”H Benny is home recovering from today’s procedure. We hope he will not feel any discomfort. IY”H this will be the last series of tests before he goes in for stem cell next week Wednesday.
We got to the hospital at 5:30 am and had to wait in the waiting room for about an hour while the receptionist entered in the necessary data. Other patients were waiting as well. One of them, I recognized from a previous hospital stay. I remember I learned from this young lady a lesson on “losing eye lashes, ” as a result of chemotherapy. At the time, Benny had his magnificent trade mark, thick, curly, long eyelashes, that had all the nurses giving him extra special attention. This young lady told me that without eye lashes a person forgets to blink and as a result the eyes can become dry. The weight of our eye lashes automatically cause the eyes to blink and keep eyes moist. B”H Benny’s eye lashes have already begun to grow back and are beginning to reach the curling point. The question remains, will they curl?
Being that we are in a children’s hospital, we are only going to see pediatric patients. It’s never easy. Everyone has their own individual and unique journey and yet everyone has so many things in common. One commonality today was no school. Unfortunately, the tests these kids were taking were not Math, Science or English. Well, maybe a little science, but not the kind we can study for. As I sat with these children, I silently prayed that very soon they will be able to sit in a classroom among their peers and be able to take a spelling, math or history test and be done with this chapter in their lives.
Once Benny was taken into the operating room, we were escorted to a different waiting room. Other families were also waiting for their children to come out of surgery. Some were watching the news, others reading magazines, or drinking coffee while talking on the phone. B”H we had our Tehillim with us and the army of Tefillos from all of you. Thank you Auntie Shira for arranging a Tehillim group today. At times, I find it difficult to say the words Binyomin Chaim Ben Faigie Sarah. Not because Benny doesn’t need it, the opposite. I find myself in a state of disbelief that I have to be Davening for my precious baby to be cured and pray that he grows up to be healthy, strong and live to a ripe old age.
Today, B”H we were given an extra Tefillah of Hallel to say in honor of Rosh Chodesh. As I’ve mentioned before, one of Benny’s favorite activities is putting a blanket on his head and shoulders, hold a Siddur in his hands, and sway back and forth, and Daven.. That is exactly what Benny did today when he got home from the hospital. He was accompanying Chazan Helfgot in the background, singing songs to Hashem. It is fascinating to watch Benny conduct his hands according to the rhythm of the music. I look forward to the day when he will one day perform IY”H (with G-D’s help) and what a performance it will be!
As Parsha Noach (Torah Portion Noah) draws nears, so is Benny’s journey of stem cell. I saw a video today from Partner’s in Torah discussing , Hashem telling Noach one of the things he is to include in the Teiva (Ark), a skylight. The video goes into detail about the meaning whether it is an actual window or a precious stone. Each symbolic of light. Light can go in and out of a window. That represents looking out and seeing how you can help another who is going thru a difficult situation. How can you bring light into their life? The stone only can receive light from within. This represents that we must look in and not out. We must make sure not to neglect our own family.
I am trying to prepare, what to take into our Teiva (Ark), who to take, and how to care for those that I cannot take, primarily my other children. Over the last several days, I have received many creative ideas from family and friends, all Team Benny members, that IY”H will be beneficial for Benny’s stay in the hospital.
Benny is sleeping… I must sleep too!
We have to wake up in a few hours so I’ll be brief tonight.
B”H we had another wonderful day outside in the fresh air by the ocean. Benny enjoyed playing with his cousins on the slides, in the sand and on the swings. He also managed to meet a few new dogs and chase the birds away, all with his winner smile.
Tomorrow, we have to be in the hospital bright and early at 5:30 am. I am so exhausted just thinking about it. The fatigue should be the worst of it! Benny has one more procedure to go thru before he is admitted for the stem cell treatment next week IY”H. The procedure will take place IY”H at 7:30 am. If you happen to be up and have time to say a Kapital (chapter) of Tehillim (Psalms) or have extra Kavana (concentration) during your Davening (praying) tomorrow for Binyomin Chaim Ben Faigie Sarah, we are forever grateful. Being that is Rosh Chodesh Chesvon, we are blessed with extra strengths. We just have to tap into those forces by asking the Holy One Above. As we request of you to Daven for our son, I pray to Hashem, that you should never have to ask others to pray for your children. May Hashem grant you all good health and happiness for 120 years. May this month of Chesvon turn into joy and happiness, Refuos and Yeshuos for all.
Please Daven that the Dr.’s are successful in what they need to do and that Benny IY”H will be safe and have good results.
Benny having fun with his cousins in the sand
Benny in his “Superman” pj’s – ready for battle in the OR (operating room) tomorrow!
Watch Benny swinging with his cousin Binyomin : Swinging w Binyomin
Today, Benny enjoyed a special day with his older sister, Yocheved. He helped her celebrate her birthday by wearing her birthday hat and holding her balloons wherever they went. He actually stole the show, luckily Yocheved was okay with that! We were just so happy to celebrate together in person.
Ideas have been streaming in of ways to keep Benny busy in the hospital. Thank you for sharing them with us. I have already begun setting aside things to take with us. It is quite appropriate we go in to the hospital around the time of Parshas Noach. Hopefully it won’t be as long, but in any case we have to prepare. The hospital has very strict guidelines in which we are still learning about. The main points we have learned thus far is that we won’t be able to eat in the room nor use the lavatory in the room. The other major concern is the limited amount of people that can go visit Benny during his hospital stay. We are told we can have 6 people, the same 6 over the course of the month. As time draws near, IY”H sometime next week, we will learn more.
Until then, we are happy to be living as normal life as possible at home B”H.
Watch Video of Benny enjoying Yocheved B-Day Balloons: BenYo Bday
The past couple of days Benny has had a busy social calendar. Late last night we ventured out to see the Space Shuttle Endeavor glide thru the streets of Los Angeles. Benny was fascinated as much as we were. Maybe he felt a connection. Although he’s too young to understand what the giant “plane” stands for he knows it’s BIG. You may ask what they have in common, it is the Journey. The Endeavor went to places we will never go. The Endeavor experienced something we will never experience. However, just seeing it up close, we feel a sense of excitement and try and imagine a piece of the journey. This space shuttle Endeavor has now completed its mission. The Endeavor is now in its next phase. The phase of teaching and giving over all that it has learned.
Benny is our Endeavor, our little giant!. He has reached spheres the average man will never reach and yet B”H thru his journey, we are all given the opportunity to grow to reach our greatest potential, and rise to those spheres . We are blessed with a mission in helping Benny be successful in getting thru his “flight,” thru our Tefillos (prayers) and the continuous acts of G’milus Chessed (kindness) on his behalf.
We look forward to the day when IY”H Benny too, will be riding on a float down the streets, waving and saluting all his “Team Benny” members, in appreciation for all their love and support throughout his challenging journey.
Today, we celebrated the Upshern (3rd birthday, cutting of the hair ceremony) of our adorable cousin, Jared. Mazal Tov! Benny, and all the kids, had a wonderful time jumping on the moon bounce, eating pizza and ice-cream and running around with their cousins. It was so great to see Benny one of the gang and enjoy being at his cousins Simcha (celebration). IY”H may we be Zoche to celebrate Benny’s Upshern next year this time.
We better start making the goody bags – although, I am afraid Benny will eat them all up before we can give them out!
B”H we are home for Shabbos. The Shabbos we begin to read from Sefer Bereshis. New beginnings. IY”H this should signify a new beginning for Binyomin Chaim and the start of many good things to come his way as he B”H continues to respond positively to the treatments he is receiving.
Today Benny enjoyed a day off from his doctor visits and had fun with Scoo B Doo at the Grove. He also enjoyed a ride around town in a cool car! Thanks Joel!
View the video of a coolride
Dear Family and Friends – Thank you so much for your tefillos today. B”H, we received very positive news this afternoon that Benny’s latest scans were negative (no pun intended). This means that Benny can move into his next phase of treatment with his “best foot forward”. We can’t thank each of you enough for all you have done to positively impact Benny’s journey. We only hope that, in addition to the benefits Benny has experienced, your tefillos serve to protect you and your families from anything negative for all time. Please read Faigie’s beautiful post below. The hashgacha pratis (divine providence) in the timing of Benny’s treatment is something that allowed his doctors to eliminate a serious risk to his health from his next treatment. Had we not waited until the end of Yom Tov, his doctors would not have been fully aware of the potential life threatening effect of his experimental regimen. He is the only child, worldwide, to be in this situation and they have been able to devise an alternative regimen that is far safer. He was truly “Saved by Sukkos”! So I add my thanks to Faigie’s (below) and hope we continue to see (and share) the positive in each other’s lives. Ari
B”H Benny is out of sedation and is recovering well at home. Thank you for all your Tefillos. We won’t know results immediately, but with all of our Tefillos combined, we will IY”H (G-d Willing) receive good news. Until then, we have more time to continue Davening for Binyomin Chaim Ben Faigie Sarah.
These past few weeks have overall been a vacation from treatments and the craziness that goes along with them. We truly enjoyed Yom Tov with our family and tried to soak up as much Kedusha (spirituallity) as possible. One of the highlights of my Yom Tov was seeing Benny on his Daddy’s shoulder’s dancing with the Sifrei Torah on Simchas Torah. Benny kissed every Torah that passed him by for all 7 Hakafos. He remained in Shul until after 11 pm at night and was back in Shul the following day for the next round. While on his Daddy’s shoulders Benny held a flag in one hand, a stuffed Sefer Torah in his arm and a lollipop in the other hand, while wearing his very own Tallis. I think he was the only kid that stayed in shul during the entire Hakafos without taking a break! His Daddy is still recovering from aching shoulders, but not complaining one bit.
Yesterday, was our first day back at the hospital preparing for what lies ahead. A Stem Cell Transplant is the next course of treatment for Benny. Originally we were scheduled to be admitted to the hospital the day after Yom Tov, today. The date was then moved to this coming Sunday, however, after yesterday’s meeting it is going to be moved back a couple of weeks.
Over the last few weeks other patients have undergone similar treatment in this study and based on the patients reactions to the therapy, our Dr. along with other Dr.’s around the country want to change the regimen for Benny. The risks are too dangerous. This data only became available the last day of Yom Tov! B”H we our Dr. waited to proceed and was willing to wait until after all our holidays to admit us. We truly feel that it was all the Tefillos during this special time with Hashem that saved Benny from Chas Veshalom going thru any additional hardships during his treatments.
As I am writing this update, we just received a call from our Dr. that B”H the scans Benny underwent today were negative!!! Please continue to Daven as we continue to see the positive results in doing so.
May the closeness with Hashem (G-D) we all experienced these past couple of months stay with us throughout the year.
As we prepare over the next week to go into the hospital, I am collecting ideas on how to keep Benny entertained in the hospital. He will not be allowed to leave his room or be around other individuals for up to a month. If you know of creative projects I can do with him, feel free to share them with us. I am also working on arranging an Asher Yatzor campaign on his behalf during this crucial time. We will keep you posted.
Tonight we welcome the special day of Hoshana Rabbah. A day filled was Tefillos (Prayers).
It has been quite a few days since I wrote on the blog. B”H (Thank G-D) Benny is doing well and enjoying each and every minute of Yom Tov (the holidays). I mentioned to Ari earlier today, how life is beginning to feel normal once again. We know this is only temporary, but we sure are appreciating every moment.
B”H we are blessed with this joyous time to be with our family and friends, and to be able to store up many happy memories for when we go back into the hospital for transplant. Other than the routine Dr. visits and some tests in the hospital it was fairly quiet. There was more commotion in the kitchen or in deciding where to go on Chol Hamoed, Thank G-D!
The calm before the storm. We were told that what lies ahead is one of the most challenging times of this treatment process. The anticipation of the unknown is frightening. It feels like preparing for a big snow storm. The news talks about it for days and days before, warns everyone to stock up on supplies, plan an emergency evacuation just in case, even predicts how many inches. Finally the day arrives and the snow begins to fall, at first it’s just a dusting and then the snow flakes thicken and the pace picks up rapidly. Then the waiting begins to see whether we will be snowed in, school cancelled, how many inches etc…In past snow storms, I usually spend most of the night looking out the window admiring the beautiful snow flakes, while wondering when it will stop.
Benny is about a week away from going into the hospital for a stem cell transplant IY”H. The doctors can only give us an estimate how many days they feel it may take based on previous patients, however, every patient reacts differently and there is no way to know for sure. On average, it is about 1 month, plus or minus days or weeks. We obviously are praying for a speedy recovery without any side effects and the time to be as short as possible away from the family.
During the past few months as Benny has been receiving his treatments there was one thing that was constant and that was Tefillah (Prayer). These Tefillos turned into a mighty great and powerful storm that continues around the clock all over the world. We pray that this storm reaches the Heavens Above and breaks through the Gates of Refuah (healing) and bring Binyomin Chaim Ben Faigie Sarah and all the Cholim (ill) the Refuah that is needed.
Let this Hoshana Rabbah, this great and powerful day of Tefillah be used as a vehicle to reach the Heavens directly and instantaneously . Let the only storm we experience be that of all our Tefillos and not of illness.
After Yom Tov, Benny will be going in for a couple more tests prior to stem cell transplant. We would very much appreciate if you could please take a moment to say some Tehillim today, that the test results are IY”H (G-D Willing) the outcome we have all been davening for, a complete Refuah Shlema.
Good Yom Tov!
Pictures of Benny enjoying Yom Tov!
Peterson Car Museum. Disneyland
With Gratitude to Hashem Yisborach (G-D) we are happy to report we are home with our family for Yom Tov. We wish you all a wonderful, healthy and happy Yom Tov (holiday).
B’H the results we received thus far on the tests Benny took last week were positive. IY”H may his refuah continue in the right direction.
Today we celebrated the Bris of our great nephew, Shmuel Tuvia, named after our beloved grandfather O”H (may he rest in peace).
Good Yom Tov!!!
B”H we all fasted well, but more importantly we pray that all our Tefillos are heard and answered and that we merit to be inscribed in the Book of LIfe, a long healthy, happy life.
Erev Yom Kippur I received a call from a friend explaining to me that her cousins child was undergoing surgery Erev Yom Kippur. This friend prepared Challah dough and asked me if I thought this mother would appreciate or be offended if she brought the dough to the hospital enabling her cousin to make a Bracha on separating the Challah as a segulah for her daughter’s Refuha Shlema. I told her not to hesitate even a second and that it is a remarkable act of Chessed she could do for someone in time of need.
I thought about this act of kindness throughout Yom Kippur. This woman gave this other woman hope and strength through this amazing Mitzvah of Challah. It was by no means an easy day to go visit someone in the hospital Erev Yom Kippur and yet she put her personal life on hold, to take care of someone else’s needs.
Motzei Yom Kippur I received an email from a friend saying that she has designated a Tzedekah box in her house in honor of Benny. She performs that act of charity with her children every morning for the Zechus that Benny’s tests go well and ultimately is healed completely.
Then today in the hospital, as we embark down the long corridor to the CT center, I receive an email from a friend saying that her husband and son are about to get a Bracha from Rav Shteinman and Rav Chaim Kanievsky. By the time we got to the CT center the Brochos (blessings) were given. What Hashgacha Pratis!
B”H Benny cooperated with smiles and high fives at the completion of his scans.
Benny also had the privilege to meet his 4 day old cousin who just arrived from Israel this morning. Mazal Tov to Miriam Tova and Moshe Eli Leiber on their newest addition. We thank you for sharing your Simcha with the family and look forward to meeting Eliyahu Hanavi IY”H by the Bris. IY”H may we and Benny be Zoche to his Brochos of Refuah, and all good things.
IY”H may we hear good news very soon.
A Guten Erev Shabbos,
As we approach the holiest day of the year, I ask myself as I have all week long, what should I ask for.
In the Tefilla (prayer) of Musaf we say in אוחילהן ….לאדם מערכי לב ומה׳ מענה לשון.
“It is for man to arrange his feelings, but eloquent speech is a G-dly gift.
ה׳ שפתי תפתח ופי יגיד תהלתך
My Lord, open my lips, that my mouth may declare Your praise”
I cannot put into words all that we need to ask Hashem for, all I can do is Daven to You Hashem to arrange my inner most feelings and compose them into a tune that is pleasing to You. One that You will hear and listen too. One that will open the gates of Geula (Redemption), Refuah (Healing), Rachamim (Mercy), Bracha (Blessing), Parnassah (Livelihood).
What I can do this Yom Kippur is present to You, Hashem, a Book of Merits, Tefillos (prayers) that were performed on behalf of Benny, Binyomin Chaim Ben Faigie Sarah that we share with all the Cholim (ill) in need of a Refuah Shlema. Look at the Ahavas Yisroel, the cohesiveness of one Nation, the Chessed of being performed around the clock for one another. Mi Keamcha Yisroel!
May Hashem grant us all atonement for any misdoings that we are responsible for.
May the Zechusim for Benny that each and everyone of you are responsible for, be a testimonial before Hashem and grant you first place in the Book of Life.
Daven from your heart and Hashem will form the words.
May we all celebrate this Yom Tov together in Eretz Yisroel Ir Hakodesh!
Watch Benny observe the Kaparos: Click on Link : kaparos
During the first hour of my birthday I received wonderful news that my sweet niece Miriram Tova gave birth to a healthy baby boy! It was the best news I could have gotten before I went to sleep to be crowned “great aunt!”
B”H I woke up this morning on time to join in with all the 1000′s of people to ask Hashem to end the Golus and bring Mashiach. Once again I felt honored that it was on my birthday. Birthday’s bring special Kochos (strength/powers) with them. They are meant to give blessings to one another. My Bracha first and for most is to all the cholim (ill), Hashem please grant a complete Refuah Shlema immediately. Please allow these individuals to serve you with their full potential with all their heart, soul and body. Please give our Binyomin Chaim ben Faigie Sarah the greatest gift of all…life. A long healthy and meaningful life. Please give him the opportunity to serve YOU and to proclaim Your Greatness.
My next Bracha is to all of you who have and continue to be a huge part in Benny’s Refua. May Hashem bless you with only good health and happiness for 120 years.
Over the last several months I have been receiving a daily email on Ahavas Chesed. Below is one I recently received in which I felt a strong connection too.
Ahavas Chessed Day 1128
“Only the Abishter (G-D) can make nissim (miracles). But klal yisroel, by keeping Hashem’s presence before them, can elicit nissim. The way to make Hashem an active presence in one’s life is through acts of cheesed. The Chofetz Chaim relates that cheesed (kindness) is the currency with which the yidden acquired redemption. Chessed was the catalyst for the geulah (redemption) in Mitzrayim, and it will set in motion the process of the Final Geulah as well. In mitzrayim, under harsh circumstances that could easily have stripped the slaves of their humanity, they remained humane and caring toward each other. Chazal relate that “they made a covenant between one another to do chessed with each other.” Even in their state of exhaustion and despair, they would periodically gather to reinforce for each other the legacy of the Avois. They never lost sight of the chiyuv to help each other in any way possible. On the surface, the 10 maakois (plagues) seem to be the driving force behind yetzias mitzrayim. But beneath the surface, chessed was the operating force that set the geulah into motion. In “Az Yashir” it says “nochisa b’chasdichah aam zoo go’altah.” With Hashem’s kindness he guided the nation that he redeemed. His guiding hand was activated not only by His own middah of chessed, but by ours. Through chessed they kept Hashem before them, and therefore, he was there to guide them. This dynamic opened the channels of miracles and wonders for the yidden in mitzrayim and it has remained in force throughout every golus. As chessed strengthens among the yidden, Hashem’s presence strengthens as well. Ultimately, through this means, Hashem will be present in full force once again to guide His nation, fight their battles and lead them to the final geulah.”
This seems like it was written just for Benny. His first symptom of this Maake presented itself during Pesach the holiday representing the 10 Maakos. The holiday representing Klal Yisroel’s togetherness and triumph in getting thru this enormous challenge. The key to the Geulla was the Chessed the Ahavas Yisroel we had amongst each other. I cannot say Benny’s illness is a blessing by any means, but I can say from the bottom of my heart and innermost chambers of my soul that the chessed we have experienced as a result, is and continues to be a true blessing.
Tonight was the annual Los Angeles Bikur Cholim dinner. We have tremendous Hakoros Hatov for helping us through this treacherous journey and seeing to it that all of our needs are met. Meeting dozens of people who stopped to ask how we and Benny are doing, to tell us they are davening for him or asking what they can do to help is, these are the individuals who are going to bring out the Nissim (miracles).
Recently, I spoke with a friend and she told me how inspired she was by Benny’s blog. I responded saying that I wish I was that inspired. She then went on to tell me that we are fighting a war. We are in the front lines and it is very difficult to feel inspired when we are in the most vulnerable and dangerous position. However, that being said, we are not alone. There is an army of support behind us, ready and willing to do whatever it takes to help us win this war.
IY”H this coming year, hopefully in the days ahead we will win this war, through the love we have for one anther, end this Gollus and celebrate together the Geulla Shlema once in for all.
Wishing you all tremendous Bracha, Hatzlocha, Good Health and Mazal this coming year and throughout your life.
video of Benny: bdayballoons
Hey everyone! I dont know if everyone is aware of a world-wide event that is taking place this Sunday, September 23, im’h. People throughout the world will be saying a special tefilla, asking Hashem to bring Mashiach. It will be taking place at 8 a.m. Los Angeles time so if everyone can participate it would be amazing! Think about it, there will be Jews from all over the world storming Shamayim asking for Mashiach. Please forward this to everyone and get the information out!The tefilla in english is:
“Master of the Universe, we, the children of Israel, ask You for Mashiach to redeem us, now and with mercy, from exile and all suffering, to reveal Your Name in the world and to bring peace.”And in Hebrew:ריבונו של עולם, ”
אנו בני ישראל מבקשים שמשיח צדקנו יגאל אותנו עכשיו מהגלות ברחמים, לשים סוף לכל סבל, לגלות את שמך ולהביא שלום לעולם.”
Everyone is requested to give something to tzedakkah and then say the tefilla. Please! Set your clocks and participate!May we all be zoche to our tefillot being answered and to the coming of moshiach this year.
In this week’s parsha,
In this week’s Parsha, Veyelach, Hashem tells Moshe to write down the Torah and a song, which Rashi says is referring to the first 43 pasukim of Haazinu (next weeks Torah portion).Hashem says we should “place this song in our mouths” (31:19). Why? What is this song???
It is a song of Hashem’s vastness and magnificence, what He has done for us and what He will continue to do for us.
(next weeks Torah portion).Hashem says we should “place this song in our mouths” (31:19). Why? What is this song???It is a song of Hashem’s vastness and magnificence, what He has done for us and what He will continue to do for us.Today, Benny and I were fortunate to witness the space shuttle Endeavor fly over the Los Angeles area before it landed for good. The Endeavor and those astronauts that flew with it were fortunate enough to experience Hashem’s vastness in this world and the outside worlds too. How appropriate it is to witness and see first hand the representative thatfirst hand explored worlds that are not available to us to see first hand. It is this Shabbos that Hashem told Moshe to write down the song that represents this greatness.Click on link to watch Benny see the Space Shuttle Fly over :It is said that the times before Moshiach the world will come to recognize the greatness of Hashem and that He is the One and Only One. Let today be a representative that it has arrived. May this coming Yom Kippur be a day of celebration throughout the world.There is a world wide event taking place this coming Sunday (no, I’m not referring to my birthday) to ask Hashem to bring Moshiach, the Refuh, the Yeshua the Geula.Please click on to the link to see further details;Good Shabbos !
We hope you all had an enjoyable and meaningful Yom Tov (holiday). B”H we were able to go to shul and listen to the Shofar and be Zoche to hear Birkas Kohanim in which one day IY”H Benny will be able to perform.
It has been a few days since I have updated the sight, primarily because I’ve been under the weather. Thank G-D Benny is doing well. He had a long day in the clinic yesterday getting a blood transfusion and meeting with his doctor. Thanks to Auntie Shira and Shoshie hot soup, we made it through the day ok.
This past Rosh Hashana was the most emotional one I’ve ever been through. Here I was standing before Hashem (G-D) proclaiming how Great and Mighty and Awesome He is and at the same time pleading before Him to save our precious Binyomin Chaim Ben Faigie Sarah.
One of the darkest days of my life was when my Zaida O”H departed from this world (less than 4 years ago). That light came back into my life the day Binyomin Chaim was born. I Daven to Hashem that the light remain shining bright for at least as long as my Zaida Ben’s ZT”L, 96 years. May Binyomin Chaim be Zoche (merit) to live through 5 generations of his offsprings of at least 120 great grandchildren like his name sake.
There are so many actions we can do to bond together as one in order to create the Yeshua that we so desperately need. Over the past several days I received a few emails regarding the importance of unity that can truly make a difference.
Benny will IY”H be going in next week (out patient), for multiple follow up tests before and after Yom Kippur. It is a crucial time over the next most powerful days of the year, to storm the Gates Above for the best possible outcome we have all been Davening for.
Let us show Hashem together how valuable we perceive our Guf (body) and Neshama (soul) to be, by signing up to be more careful in what we say or hear about one another. In this Zechus may Hashem grant Benny and all those in need, a complete Refuah Shlema
I am adding a link to Machsom Lfi -
Link to sign up for Tehillim in Binyomin Chaim Ben Faigie Sarah’s Refuah: https://docs.google.com/spreadsheet/ccc?key=0AtGzm7uMMGbkdFpGMUtMS2ZpYl9XUUdxQnZoUDdjN0E#gid=0
There is still time to bake Challah this Shabbos of Aseres Y’May Teshuva
www.teambenny.net – Challah Baking
This coming Monday we all have an opportunity in helping Sholom Rubashkin be heard before the Supreme Court. Please help save a life. Just take a few minutes of your time and listen to the link below.
Please send this link out to all your contacts and encourage them to pass it on to their contacts via twitter, email, facebook etc in order to create a buzz about it and get as many views as possible. Our goal is to hit 1 million views! They should also “like” it. With Hashem’s help, this should help bring my father home! Please send a one-line note in your own words telling them to spread it around as much as they can. Here’s the link:
May Hashem bring immediate geulah for Sholom Mordechai halevi ben Rivkah!
We are just a few hours away from the beginning of a New Year 5773. It was only a year ago that we moved to Los Angeles. A year of new beginnings. As we left our dear friends and family backed east we were told, “Mishana Makom Mishana Mazal, (you change your place you change your fortune/luck).” Of course the saying is meant as a blessing.
This past year has brought us challenges that one could never imagine possible. It is true that we do not choose our challenges in life. That is left to the Holy One Above. What we can choose is how we are going to respond to the challenges G-D bestows upon us. Often, it feels like an impossibility. Truth be told, many times I don’t face up to the challenges in the way I probably should. One thing is for certain, we could not face these challenges alone. Ari, my family and I, have tremendous Hakaros Hatov (gratitude) for the outpouring of love, support and dedication you all have shown and continue to demonstrate, throughout this most challenging time of our lives. Although we may not have done our part in accomplishing what we need too, YOU ALL most certainly have!
Please join Benny and all of us in Davening together this Rosh Hashanah to bring the Yeshua, the Refuah, The GEULAH. Let us merit a year of celebrations to come.
(this picture was taken one year ago!)
This was designed and baked by the very talented and well known artist, Julie Esther Kessler. (Benny’s aunt)
It is known that the pomegranate has 613 seeds. representing 613 Mitzvos (Commadments) and also the 613 parts of the body. This Rosh Hashana when you make the Bracha and bite into this delicious fruit, have in mind that the Mitzvos we perform are done exactly as they are supposed to be. Have in mind that our body should function properly in good health.
K’siva V’Chasima Tova!
I recently received one of these emails discussing the following: What if Microsoft wrote the manual for Ford Motor and what if Ford Motor wrote the manual for Microsoft? It went thru various things that could go wrong and who to call in an emergency. For instance, if the your car broke down on a hot summer day, you would call customer service, which is in India. You would be put on hold for more than an hour and then receive instructions (not in a dialect you could understand) on how to reboot your car. It wouldn’t work. Or if your computer froze would you be able to open it up and give it a boost with cables? Obviously not. You must have the right manual and speak to the right customer service centers to meet your needs.
As we approach Rosh Hashana in less than 60 hours who are we going to call on for help? How are we going to get the answers we so desperately need to live? What are we going to do to change? How will we survive these challenging times? Who is going to help us understand the “Manual of Life?”
We must go to the Author who wrote the “Manual of Life.” This Rosh Hashana (New Year) we plead before the Ribono Shel Olam (G-D) the Healer of all healers to cure all those in need of a Refuah (cure), to allow our bodies to run the way they are intended too; the Banker of all banks, to send Parnasah (livelihood) to those who cannot pay their bills; the Father of all fathers, to do whatever it takes to help make His children happy. It is He and only He that can provide all our needs.
When one Davens (pray) for other’s, his/her Tefillos (prayers) will be answered first. We are so grateful to all of you who Daven day in and day out for the full and speedy recovery of our precious, delicious, Bennylicious. This Rosh Hashana we would like to give back. If Chas VeShalom (G-D Forbid) anyone of you have someone that you would like us to Daven for, please send us the name. We will say the names with Benny, Binyomin Chaim Ben Faigie Sarah, who loves to Daven and sing the praises of Hashem. All names will remain confidential.
Wishing you all a Shana Tova!
Faigie and Ari , Benny and Family
The past couple of days I had the privilege of pretending to be back in school, listening to teachers, sitting behind a desk and taking notes, and praying that I won’t be tested on the information at the end of “back to school night!”
There was one recurring theme throughout the two nights and that was teaching our children how to become close to Hakadosh Baruch Ho (G-D). In all three grades, 8th, 4th and 2nd the Tefillah (prayer) class consisted of translating the actual Tefillah (prayer), teaching pronunciation, and most importantly the Kavana (feeling), we should have when reciting the Tefillah. The connection of closeness with Hashem was also discussed in the 8th grade science class. The science teacher said a large part of her class is not only understanding the human anatomy, but appreciating Hashem’s intricate systems and realizing the greatness of Hashem and thru that one can achieve D-vakos (closeness) to Hashem. I wish I could attend any one of these classes.
From the very beginning of Benny’s diagnosis we have reached out to all of you to Daven for Binyomin Chaim Ben Faigie Sarah. To say Brooches properly, whether in Tefillah, before you eat or after the lavatory and Hafroshos Challah. We feel that it has made a significant difference in Benny’s overall treatment and reaction to it and beg of you to continue in your great effort. I personally struggle to pray for our situation. I sometimes feel that asking Hashem for help and the Refuah (cure) validates the severity of Benny’s illness. I would much rather praise Hashem for the amazing wonders of the world or for the beautiful smile and delicious hugs that Benny gives me on a daily basis. His passion for Mitzvos and love for life is amazing to witness.
This coming Rosh Hashanah I pray that we only have to sing the Praises of Hashem (G-D), that we don’t need to request for Refuos and Yeshuos because all illnesses will have been cured, all those looking for their spouse are engaged, all those in need of a livelihood are prosperous, and all those looking to start a family are pregnant. May the shuls be filled with singing, dancing and tears of joy this Rosh Hashanah.
We apologize for not reaching out personally to each and everyone of you who have made a tremendous impact on our lives this past year. We are truly grateful and have tremdous Hakaros Hatov (thankfulness). We can go into this Yom Tov with an army, a Team of thousands of supporters and present Hashem all of your Tefillos and Zechusim that you have performed for Benny’s Zechus and all those in need of a Refuah and Yeshua. IY”H may we all be Zoche to celebrate in the Geula Shlema this coming year.
Good Yom Tov!
Today, we had an unexpected trip to the day hospital. Benny needed a platelet transfusion to help prevent him from bruising too much if he were to fall or bump into something Chas Veshalom (G-D Forbid). Thank you to all those that Davened for Benny that the platelets should be a good match without complications. B”H the transfusion was quick and successful.
Unlike last week at the hospital, where there wasn’t a seat to be had, today was really quiet. We got in right away and received the platelets within the hour. Benny usually likes to hang out in the playroom during his visits to the hospital. He also enjoys pushing the baby doll stroller up and down the hallways. He actually runs and so do I pushing the IV pole not far behind. He definitely gives whomever is watching him or caring for him a total body workout.
As we were in the playroom with less than a handful of other patients, I commented to the staff member how quiet it was and what a change it was from last week. I mentioned how I basically cried the whole day last week after seeing so many new faces. Today, I felt Hashem heard my cries, and collected my tears from last week. The fact that there weren’t many patients was hopeful. I wished the staff members a “boring day.” Basically stating that they should only be busy taking care of healthy newborns and no more sick children.
These next few days are crucial. We are working on our case to present before Hashem this Rosh Hashanah. When Hashem sees the care and compassion we have for one another, how could he not reward us! There are two great Mitzvos that can make a tremendous impact on your life, on Benny’s future life IY”H. If you have not signed up for Tehillim and Hafrashas Challah for this week, please don’t delay.The link is on the left column. As you say the Blessing when you separate the Challah, please have in mind that Benny needs to increase his appetite and food intake, in order to store up for the stem cell transplant that will IY’H take place immediately after Succoth. After all Challah is his favorite food. When Hashem hears your prayers for someone else, Hashem answers what you need first. It’s a win win situation. Benny needs all of our prayers. We need Hashem to eradicate this illness in Benny’s body. Let the energy Benny demonstrates be used to spread the greatness of Hashem thru joy and laughter.
I want to mention a special thank you to Shira Gudema who gave her Bat Mitzvah Ma’aser money to sponsor Yehudis Schoen in the Chai Life Line Marathon in a Zechus for Benny’s Refuah. Thank you Rifky Friedman, Kayla and Daniella Darrison who also gave their Miser money to Chai Life Line in Benny’s Zechus.
Yehudis is almost at the finish line, that is in raising the funds. We so proud. Can’t wait to great you at the race finish line soon.
This morning Benny found a bunch of semi precious stones/rocks on the couch in the family room. They were his brother, Yehoshua’s that he collected from science class when learning about rocks. During that time, I thought about a different kind of stone and a friend who is now recovering from kidney stones. I davened to Hashem to give her a speedy recovery (Refuah Shlema Esther Bas Rivka Devorah). Shortly after Benny’s fascination subsided, he left the room and wandered into the kitchen for a snack. Within a few minutes I was back in the family room with Benny getting him dressed on the couch. In the corner of my eye I spied one more shiny stone on the couch that was clearly separated from the others. It didn’t look like the other’s. That’s because it was the diamond from my engagement ring. I couldn’t believe it! Of course I was shocked that the stone fell out of the setting, but even more, was that Benny was just playing in that exact spot with other stones/rocks a few minutes prior. It was a miracle. If it would have fallen out just a few hours later, during our stroll at the beach, I would not have been that lucky.
So today, Benny not only learned about different types of rocks/stones during his mining expedition, he also participated in the Mitzvah of Hashov Aveida (finding a lost object and returning it to its rightful owner), even before I knew I lost it!
This Sunday, Benny enjoyed a day of bowling with his brothers. He even got a spare without the help of bumpers too! Today he enjoyed a nice breeze at the ocean.
We would like to thank the Gudema Family, Devorah M. Naama Sara and Beth, Faige E., Robert W., Carol B., and Auntie Shira in sponsoring Yehudis Schoen to run in the Chai Life Line Marathon in the Zechus (merit) for a Refuah Shlema for Binyomin Chaim Ben Faigie Sarah.
Here’s a creative way to help in the fundraiser:
Benny enjoyed his day on Thursday in Universal Studios. He liked playing in the area with lots of balls and splashing in the dancing water fountain. He also enjoyed the animal show.
One thing or person he didn’t like was Frankenstein. Do you blame him?!
Wishing you all a wonderful Shabbos! Please let Benny know how your week is going as well. He loves hearing stories.
CLICK ON LINK TO WATCH VIDEO: DONKEY
B”H (Thank G-D), Benny did great during his stem cells treatment yesterday. Basically, the day consisted of 3 hours of hydration before the stem cells and 4 hours after. The actual stem cells infusion took only 5 minutes. As usual, Benny was his cheerful self. He enjoyed a private concert, played with his trains and cars, and was kind enough to take a nap, which enabled his Mommy too as well. Thank you Miriam, Shoshie and Kolev who came to keep us company and bring us a yummy lunch.
Now comes the hard part. The part which causes my fingers to fall heavy onto the key board. Ever since we started this blog we have had many types of responses, from “how inspiriting” to “I can’t read it, it’s too sad.” Yesterday, while standing in the clinic/day hospital waiting for Benny to begin treatment, I related to the phrase I’ve heard many times, “it’s too sad.” Looking around the waiting room, I saw a new crop of kids. Maybe because we don’t usually go on Tuesdays, nevertheless, the whole room was filled with new faces, from very young to mid twenties. It was too overwhelming and tears just began to flow and haven’t stopped since. A teenage boy stood out in the crowd. His head was full of hair. I thought to myself, “is he just beginning his journey, or is he in remission for years now?” I came to the conclusion that it was the later B”H. He looked liked he knew the place all to well and just wanted to get over with his appointment and go on with being a “regular” teenager again. I hope and pray that this kid along with all the others be that “regular” kid and put this all behind them immediately.
Another response to the blog is, “I read your blogs every day to find out what I should pray for next.” The answer is complicated and yet straight forward. Pray that this horrible illness along with all illness in the world is eradicated once and for all. Pray that G-D Sees, Hears and Listens to our Prayers. Pray that Prayers work. Pray that pain and suffering is replaced with joy and happiness. Pray that hospitals are vacant or only filled with healthy newborns waiting to go home.
For those of you who cannot read the blog, I can relate. I can hardly read it myself. A friend recently gave me a book, an autobiography about how a man’s journey through his own horrific illness. It goes thru his challenges and will to survive and success. These books unfortunately,are all to common and are meant to give Chizuk (strength), but at the same time bring sadness. So I apologize if this blog has made any of you sad. Our intention is to get your help in prayer and acts of kindness for Benny’s sake and for all those who may be suffering.
In trying to give Benny a “normal” happy day, I took Benny out for an outing around town. Dressed in his “Team Benny” cap, we were approached by some asking about what Team Benny was all about. By the end of the trip, we managed to collect a few more Team Benny players.
Check out Benny’s trip and his new Team Players:
Click on Video of Benny riding the Trolley : bentrolley
For those of you baking Challah this week as a Zechus for Benny, here is a creative new design, baked by Ilana and Tamar (11 years old).
Benny had a full day today. After his siblings left to school, Benny Davened (prayed) and then had his own learning session with Dena who is helping him increase his vocabulary and other language skills.
We then headed out on a walk around town, and ended up at the turtle/fish pond (which also is used as the Tashlich meeting place on Rosh Hashanah). So we’re a little early! Benny loved counting the turtles, twelve in all.
In the afternoon Benny was joined by his siblings who only had a half day of school. His face lights up when he hears the front door opened and runs to greet his brothers and sisters. The feelings are mutual on both sides B”H. There’s no greater feeling when you come thru that door and Benny runs down the hall with his big blue eyes opened wide, his cheerful smile and pronounced dimple, and extended arms, waiting to be picked up and hugged squeeze tight.
After much debate about what to do, we settled on ice cream and swimming at Zaida and Bubbie’s house. Boy did Benny and the kids have a great time in the pool. Zaida held Benny so that is upper torso didn’t get wet. It wasn’t easy, but we all managed.
Tomorrow, Benny will be going to day hospital – out patient, to receive the first dose of his own stem cells. IY”H Hashem should bless him with a good response and continued success in his treatment. Please keep Benny in your Tefillos tomorrow.
After tomorrow, we hope to be free for the next several weeks, hopefully until the day after Succot when Benny will be admitted into the hospital for the remainder of the stem cell treatment (about 4 weeks). Until then, we hope to keep Benny busy with fun activities and day trips all over southern CA. Again, we are accepting any suggestions you may have.
Benny has been enjoying his days back in LA. He was happy to go to Shul this past Shabbos and enjoy time at home with his grandparents that came for Shabbos and his brothers and sisters. It’s amazing that it was only one week ago that we were in the hospital in Philadelphia.
The times when we are in the hospital the days or weeks don’t seem to have a beginning or an end, it is all just one long, long, long day. Now that we are back we are trying to retrain Benny to sleep in his crib, not my bed and thru the night. We have not been successful at all, especially because we don’t want him to cry it out. Five minutes is our cut off and then we go in and get him. I am confident that he knows he has us wrapped around him soft delicious little fingers, but what is a parent to do!
After Shabbos when my parents were leaving to go home, Benny called after them and said a new word “Bubbie” (Grandma.) It was almost the best word he could have said. Next week we’ll have to work on Zaida (Grandpa), after all it’s Zaida that is going to bring Benny a new toy from his office.
Today Benny went along for the shopping trip to Costco. Benny looked like he was the marshal of a parade sitting in the shopping cart saying “Hi” to everyone he passed in the aisles. He even managed to get as many free samples of Kosher products as he could. Who could refuse him!
The next few weeks Benny will have the opportunity to IY”H be like any 21 month old,except for going to playgroup. I have been researching and asking around for any ideas people might have of day trips to take Benny on. I am open to any suggestions as well.
I must conclude now, as I have been dozing off the past couple of times when entering in a new post and only waking to cries of the baby wanting to eat. Hopefully, tomorrow I can begin the entry a lot earlier in the day.
B”H we are home once again for Shabbos. B”H I had time to prepare for the Shabbos meals as well. It’s been a while since I opened a cook book, and it took more time than expected, but we did it! Now just pray it’s edible. Benny is anxious to welcome in the Shabbos and eat his favorite food, Challah. Thank you to all of you who signed up to bake Challah as a Zechus for Binyomin Chaim Ben Faigie Sarah. It’s no wonder why he loves to eat Challah.
Pictures of the Week:
At the Philadelphia Zoo, On the Plane, At Home Playing with Zaida and Cousin Julia
We would personally like to thank those that have already signed up to sponsor Yehudis Schoen who will be running the Chai Life Line Marathon this Dec.
Thank you Aunt Rochelle. Thank you cousin Esther and Michael. May Hashem grant you and all your loved ones good health and happiness for 120 years.
For those of you who may I tried contributing but were not successful because I left out some details, I have included all the pertinent information this time around!
Yehudis Schoen, Las Vegas ID #58495
We hope to be there to either join Yehudis in the run or at least cheer her on!
Yehudis Schoen Las Vegas 58495
(warning- if you aren’t up for crying – DO NOT READ!)
This morning Benny had his scheduled clinic visit. This was a follow up visit from his treatment in CHOP. There are a few steps prior to seeing our oncologist. The first step is registration. Today, this took about 25 minutes. The second step is Triage, this is where Benny’s vitals are taken, height, weight and blood pressure. Depending on the wait it could take between 5-20 minutes. Today this also took some time. While sitting in the waiting room I met Max and his mom and grandma. We discussed how each others treatments were going and the dreams we have of going somewhere special when our children are finished with therapy IY”H. Max’s mom shared some really good news with me telling me that another patient, Brody was vacationing with his parents this week in Hawaii. Benny had met Max the first week we were admitted into the hospital. I remember how difficult it was for this little boy and his parents. Well today he was free of all foreign materials attached to his body. He was free to swim in the ocean or bath for that matter. It was an emotional moment, I even shed a tear or two from happiness. From triage we went to the playroom and waited for the doctor to call to say when she was ready to see Benny.
While we were waiting, we received most disturbing news. I was notified thru a phone call that a different patient by the name of Jessica passed away Monday evening and that her funeral will take place this Thursday afternoon. This was the Jessica that I mentioned a week an a half ago, the one Ari delivered homemade Challah to Erev Shabbos. The one in which we bought the Sefer Tehillim for. Jessica’s mom loved to say Tehillim (Psalms) every day for her daughter and for many other sick individuals, Benny included. It took a great deal of restrain not to lose it right there in the playroom. I held it together for the sake of Benny and other children in the playroom.
Tomorrow, as I kiss my kids goodbye as they go off to school, I will be thinking of Jessie who won’t begin her first day of high school. Tomorrow represents new beginnings; entering a new grade, meeting new teachers, and writing the first chapter to the beginning of a new year. Tomorrow also represents another year of treatment for Benny IY”H. Yes another full year. It’s hard to imagine that instead of Benny going to playgroup this year, he will be going to the playroom in CHLA (Children’s Hospital of Los Angeles). It’s hard to imagine that the milestones we look forward too are completing stem cell transplant, radiation and imunotherapy IY”H verses classroom performances singing his ABC’s.
Tomorrow I have to decide whether to attend Jessica’s funeral or not. You may ask “what is the question?” I’ll tell you. I am not sure I am strong enough. I’ve been crying all day. Benny and the rest of my kids looked worried as my older kids were able to verbalize their concern and asked why. On the one hand I want to be there to show Jessica’s mom that I care. It was just last week that we brought her Challah Erev Shabbos. However, being that Jessica was diagnosed just a few weeks before Benny (a different kind of cancer) and is no longer fighting this horrible disease, makes the pain so much greater. I feel selfish not to go, on the other hand I don’t know if I have the strength. Hashem please guide me to make the right decision.
Tomorrow as you kiss your child (if they still let you) as they leave to school, pray for those that yearn for the day that Hashem will bless them with children, so they could do th
e same. Pray for Benny so that next year this time IY”H we will be able to kiss him as we drop him off at school. Pray for all the sick children that very soon they will be surrounded by teachers instead of nurses, that the only pole they see is a flag pole and not an IV pole, their backpacks should be used for school supplies and not medical supplies, and that the phrase “time out” should be used for misbehaving in classroom instead of being isolated in a hospital room for fear of germs.
Good night and Good Luck tomorrow!
B”H we just arrived safe and sound from our trip to PA & NY. We wish we could say, “Wow what an amazing vacation we had!” Instead, B”H we are able to say, “Benny made it, we made it!” Five days of intense monitoring, first watching Benny during sedation and then watching him come out of the sedation.
After our brief trip to the zoo, we headed up north to be with our family in Lawrence in which our family was reunited and sharing in our cousin Zachary’s Bar Mitzvah. The GPS 2 hour drive turned into 5 hours because of an accident. It was the first time in months that Benny was able to sit happily in his car seat for at least 3 of the hours. It almost seemed like he forgot how much he dislikes sitting in his car seat. The same for seating in his stroller . I told Ari we should be so lucky that this should be the only side effect from his sedation IY”H.
We arrived at the Bar Mitzvah a couple hours after it started, however, as soon as we got there, Benny was given the most warm greeting with applauds, hugs by his siblings and of course the paparazzi. He was so happy and once again we were able to put the long car drive behind us and enjoy the Simcha (celebration). Deep down inside it felt like a Seudas Hodah (meal of thanks) to Hashem (G-D) for getting us thru one of the most difficult weeks to date.
Monday, was supposed to be departure day back to Los Angeles. Our kids were scheduled on an earlier flight. Thank you so much Ari and Lynda for bringing our kids to New York so we can all be together for this Simcha and bring them back too. You brought such joy to our children, Benny when he saw them, and us too. May Hashem continue to bless your beautiful family with good health and Mazal for eternity. Being that Benny was just coming out of treatment and not feeling himself it would have been safer to fly private verses to being exposed to many germs on a commercial airline. There was a lot of back and forth and a tremendous amount of effort put forth by Sammy and Rabbi L. to make it happen. We changed our flight until Tuesday morning for the possibility of being able to fly private as a medic transport. It was approved and last minute (an hour and ten minutes before our commercial flight) we were told by our insurance company that Benny had to be transported from hospital to hospital in order to be considered as a medic patient.
The plane ride was pretty noisy for the other passengers. Benny was not feeling well and let everyone else know. The flight crew was sympathetic and signed up pretty quickly to Team Benny. For the most part, Benny only felt comfortable if we held him while standing. For some reason that position soothed his aching stomach.
B”H now that we are home, Benny seems to be much happier in his familiar surroundings.
We would like to thank all those involved over the past week in a half, doctors, nurses, Bikur Cholim of Philadelphia, Chai Life Line of LA and Philadelphia, friends and family that came to visit B”H too many to mention, although, I will mention Estee, who came a few times as she was the only one who took the class on how to care for Benny while he was going thru his treatment, Benny’s Bobbie (grandma) that drove in twice from Monsey), all those that sent Benny Get Well cards to the hospital, Ruchelle and Yehudis that took amazing care our children at home, family that brought our children to and from New York, Tammy and Leah who took our kids around for a great time once they got to New York, Dovid that arranged a car and driver from Philadelphia to Lawrence (poor Borris – it was a long day), our Aunt Wendy and Uncle Chaim for hosting our entire family and extended family for Shabbos and beyond, David and Rachel for making everyone feel so welcomed at their simcha (Bar Mitzvah), Shabsi for picking up dinner for us last night, Limor for watching our boys, Julie for getting us to the airport on time this morning, Zaida Elazer for picking us up from the airport, and Bubbie who prepared a hot dinner for us. Most import ant thank you all for davening and all the good deeds you are doing on Benny’s behalf for a speedy recovery. I am sorry if I left anyone out, it is unintentional and due to enormous fatigue.
It’s 4 am. It’s my turn to do the night shift as Ari stood guard the night before. B”H my night was uneventful, other than Benny waking up out of sedation once and being disoriented until the medicine kicked in again, he was calm. The nurses were in every hour or two doing there thing, but for the most part B”H boring. Ari on the other hand had a more frightening experience. Being there was such a significant delay in administering the infusion on Tuesday, the procedure was completed by late evening. After about 9 hours of trying to figure out medications to sedate Benny to get the treatment in a safe manner the doctors and nurses were successful. Then about 2 hours after the infusion was complete, Benny awakened once more. At that point he was radioactive which complicated matters. Ari had no choice but to hold him so that he wouldn’t pull out any of the lines that were hooked up to him. During the briefing that we received about precautions of what to do and what not, holding him was something not to do. However, that being said, the alternative could Chas Veshalom (G-D Forbid) been much worse.
During the training of how to care for Benny, we were told by nuclear medicine specialists that if we were to wear special glasses, we could see a bright light coming out of Benny and around his bed. That brings me to my next thought. Instead of thinking of the light as scary, I envision the light coming from Hashem (G-D). During this month we are told that Hashem comes down from the Heavens to be extra close to us. How appropriate and lucky we are to have this treatment take place during this auspicious time.
The following is an excerpt from Rabbanit Yemima Mizrachi:
Elul – 12times more powerful
Basically, 5772 ‐ תשע”ב ‐has left us drained.
And Elul? It comes to give you strength! The word is made up of the smaller words לו אל –it has power.
Hashem is standing over you and calling to you: בן בתחנונים קרא קום נרדם? לך מה אדם, ‐Human, why are you sleeping? Get up and call out in pleading. 1Get up, Neshama, get up. I’m sending a million powers into you. Wake up you sleepers from your slumber; slumberers, rouse yourselves! This month comes to give you tremendous energy.
(Maybe this is why Benny has so much power to fight the vast amounts of sedation that are constantly given to him. He doesn’t want to sleep and waste a minute. Another truly amazing thing to witness, no matter how draining it is!)
The Brisker Rav says: ה’ בטוב לראות האמנתי לולא‐ Had I not believed I’d see the goodness of Hashem –the first word of the verse is Elul in reverse. The whole month, walk around saying, לראותהאמנתי ה’ בטוב לראות האמנתי ה’. בטוב ‐“I believe I will see Hashem’s goodness. I believe I will see Hashem’s goodness. I believe Hashem is sending only good my way.” 2Say that –and you’ll see and feel yourself filling with power.
Every day of Elul we recite Psalm :27 ‐Hashem is my light and salvation –so whom should I fear? Hashem is the stronghold of my life –of whom shall I be afraid?
Although, we don’t have the goggles to see the physical light permeating out of Benny, it is not difficult to feel it and know that it is BE”H the light of Hashem combined with the light coming from all of you thru your Tefillos (Prayers) and good deeds. We have to believe in goodness and Hashem will send it our way.
I am eagerly awaiting for Patrick from nuclear medicine to come measure the levels of light in the room and break the records today. We are aiming for a level of at least 7, but would love “2″. 2 is Beis, Binyomin starts with Beis, 2 is a partnership. The partnership between Man and G-D. We look forward to caressing Benny once again very soon. Hopefully BE”H today.
Let the light of Hashem, bring the Refuah that Binyomin Chaim Ben Faigie Sarah needs along with all the needs of Klal Yisroel. May we all be Zoche to see the lights of the Holy Bais Hamikdash shine throughout the world during this holy month of Elul.
When you recite Psalm 27 “L Dovid Hashem” today, please remember the power and strength of this Great Light. Benny was Zoche to experience it and so may each and every one of us.
To read more inspiring words of Rebetzin Yemima Mizrachi please click on the link below. I guarantee it will make your day!
oops! Benny is in the PICU 7East
Please help us decorate Benny’s hospital room with Get Well Cards. All you have to do is go to http://www.chop.edu/ecards/ecards.cfm/ fill out a card, the hospital will print it out and we will hang it all over the room. When he wakes up IY”H he will be so happy.
Benny even found how to have fun in the hospital courtesy of Uncle Sruli. Not sure who had more fun!
Click on link to watch best video: bennyridingpole
The infusion began closer to 9 pm. As they were about to start at 7:30 we were encountered with one more hurdle to get thru. B”H it cleared up and we were good to go.
Today and tonight, Benny put up one amazing fight. The doctors were amazed how strong he is B”H. I think they will be sleeping very well tonight as he must have tired out a couple dozen doctors and nurses or so. May he continue to be blessed with such strength and endurance and be zoche to benefit from all of your Tefillos and Zechusim on his behalf. We broke records in LA, we are looking to do the same in Philadelphia. Benny has made a tremendous Kiddush Hashem in just the few long hours he was here today. IY”H he will continue to do so every day of his long healthy life.
The doctors, nurses and staff here in CHOP are extraordinary. They are competent, compassionate and just REAL people who really care about their patients. Although today was very long and emotionally draining, we felt we had an amazing support system and strong Team Benny Players that will do whatever it takes to make this work.
Once again please turn up your K’vana level when reciting Asher Yatzor over the next few days. Envision helping Benny flush all toxins out of his body immediately. I can’t wait to report tomorrow evening Benny’s amazing progress as a result of all your efforts.
Below is a response I received regarding my previous post: The Magic number is 2!
Two. Is the letter beis. This is the letter Hashem begins the Torah with to create the world. May the medication create pure Refuaha for Benny.Binyomin begins with Beis as well!Aviva
Here’s the update… It has been a long day. Beginning at 7 am with a wake up call from the OR waiting for Benny to come down for a procedure. The procedure was bumped up as a result of a cancellation. This procedure was B”H minor and successful. What follows was long and exhausting. Benny was supposed to begin his infusion at noon but got delayed due to Benny fighting the medications that were given to him to sedate him. After 2 plus hours the doctors decided that this treatment will be safer in the ICU. The room that was planned for this treatment had to be fully lined with plastic including the bed and furniture plus 500 lb lead shields. Too make a long story longer…the ICU room had to be lined the same way. So now as I am writing this update 6:40, we are still waiting for this medication to be administered. Time is of the essence as the medication expires at midnight. This medication takes one week to produce!
Once the medication is administered we then wait for the radioactivity to leave his body. The goal is as soon as possible. While we wait, we cannot have much interaction with Benny. No holding him, no kissing, minimal contact. Being that it is a small amount of medication because he is little, there is a good chance it can take a shorter time. The record time is 48 hours. We are looking to break records. The magic number is “2″. Once his levels reach this number he cleared of all radioactivity. B”H we are in the month of Elul when Hashem (G-D) is extra close to us and He will be Benny’s Protector, Healer and Father that will hold his hand on his bedside.
7:15 – The infusion is about to begin. Please join us in Tefilla now for a complete and speedy recovery for Binyomin Chaim Ben Faigie Sarah.
PS. We just would like to give a special thank you for our dear friends that drove in from Passaic/Clifton, Monsey and Lakewood last night and today to help give a supporting hand and a shoulder to lean on. Not too mention the delicious nutrients they brought with them. We were also thrilled to have seen our daughter Rifka Basya who has been in camp for the last 2 months.
The Bikur Cholim of Phili and Chai Life Line have been incredible thus far. Thank you very much. May Hashem bless you all and may you only have to be busy with Cholim that are delivering healthy babies.
The night was quiet short, about a 1 ½ hour nap. Wes kind of prepared for no sleep this week, but we didn’t realize it would start before we got to Philadelphia.
B”H, we were able to get in a nap on Shabbos to store up a little for what lies ahead.
We are so thankful to Zaida for taking us to the airport at 5 am. Benny loves seeing his Zaida every morning and was happy today was no exception; other than Zaida didn’t have any fresh bagels in hand because the bakery was closed.
As I write this update, Benny B”H fell back asleep next me on the plane. He was so excited to look out the window during take off. He loves pointing out all the planes he sees on our walks during the week, now he gets to point down on the strollers below.
While I was rocking him to sleep, he gave me his FIRST hug. It was squeeze tight, around my neck, and it lasted for about 5 full minutes (no exaggeration). It wasn’t out of fright, but out of love. It was the most incredible feeling. I closed my eyes to savor the moment. I said to Ari he is saving up for the week ahead, when I won’t be able to hold him and kiss him.
This coming week’s treatment consists of chemotherapy along with an injection (thru his line, so he B”H won’t feel it) of radioactive material. This radioactive iodine will find any cancer cells that Chas V’shalom might still be left (which don’t show up on any scans) and get rid of them IY”H. Benny will be confined to a hospital bed with lead shields surrounding his bed. The entire room is lined in plastic. I will be able to elaborate once we are admitted on Monday. He will be in this isolation state for as long as it takes for the radioactive materials to leave his body. The actual treatment is a couple of hours but it usually takes days for his body to rid itself of this iodine.
That is where ALL of YOU come in. Just as in earlier treatments, where YOUR Tefillos worked miracles, (remember the stem cell harvest (collection) – Benny broke all records recorded in the hospital). We are looking for more records to be broken. We must work together to Daven hard all week so that this radioactive material goes out of Benny’s adorable little body just as fast as it went in. He has to wear a monitor that keeps track of the level and once the level drops below 7, he’s free to roam. He is free to give us his yummy heart warming hugs and free to go visit other patients on the floor.
We are blessed in that this treatment falls out in the month of Elul. The month that Hashem is closest to us. Being that Benny is going to be isolated for the most part, we must turn to Hashem our Father and ask that He watch over and protect our Benny and provide him comfort, love and a feeling that he is never alone and scared, and the ultimate Refuah Shlema.
If YOU can work on having extra K’Vana, on saying the powerful Bracha of Asher Yatzor (Blessing recited after the lavatory – we’re on the airplane…), have in mind as it says in the Bracha, that all foreign materials that don’t belong in the body should be disposed of, as the healthy substances remain to do their job to keep the body healthy.
Also, whatever Zechusim you take upon yourself this week will go very far in Benny’s road to a complete Refuah Shlema.
Today is a Hachnosas Sefer Torah (completion and dedication of a new Torah Scroll) in Shaarei Torah in Los Angeles. Unfortunately, we will not be there today, but IY”H some of our children will be there dancing and singing as the beautiful parade of people cheer as the Torah is escorted into It’s new magnificent home at Shaarei Torah. IY”H we pray for the day that Benny, Binyomin Chaim Ben Faigie Sarah will have the Zechus and privilege to recite his Torah portion when he is called to the Torah on his Bar Mitzvah day. Yes, it is 11 and a half years ahead, but let the tears we shed now, turn into tears of joy when we hear Benny recite his Bar Mitzvah Parsha IY”H. Until then Benny will enjoy listening to the weekly Torah portions as he heard in shul and followed along in the Chumash this past Shabbos. Mazal Tov to the Rechnitz families and the entire Los Angeles community on this joyous event. May we only share in Simchos (happy occasions).
Wednesday’s are scheduled clinic days. Benny’s Dr. examines him briefly, but most of all discusses with us the next step to his recovery. The appointments usually last about a half a day, a lot of waiting around though! So after we were all done, I wanted to take Benny to the Zoo. I thought he might enjoy it. We met my sister and her kids there as well. It was quite a disappointment I have to say. The only animals we saw were the stuffed ones in the gift shop and maybe a squirrel, bird and flamingo at most. We took the tram around the zoo. It was too hot to walk. At least Benny got to go on a tram ride around the grounds. While on the tram, I received a phone call from Benny’s oncologist saying that based on his lab results earlier in the day, he will need a blood transfusion. This should prevent any delays in CHOP for next weeks treatment. Once again, expect the unexpected and there won’t be disappointment. I can’t say I was happy about going in today, but there’s no choice, so why not make the best of it.
Benny did great this morning B”H at the day hospital. We were in a room with another patient on the other side of the curtain who was having his stem cells collected. The technician that did this procedure, also did it for Benny. He is a loyal Team Benny player and tells me every time we meet how he is praying and speaks about him to all his friends. He told me today, he never met such strong child/baby like Benny. It was nice to hear.
Benny likes to keep himself busy during treatments, whether it is playing with toys in the playroom or moping the hallways of the hospital.
continuing 2:00 am Sunday morning – I had fallen asleep Thursday night and did not have a chance to update the Benny site until now -
I will have to continue at some point tom. We have a 6:30 am flight to Philadelphia. Benny will be having treatment this week in CHOP. Please have him in mind in all your Tefillos this week.
I don’t remember how many summer’s ago it was that I took Accounting 101 in college, but one thing I do remember learning is how to balance a check book. Unfortunately, those balancing skills don’t help me today when trying to balance and juggle 6 children’s lives who are now directly effected by this horrible illness. No matter what we decide, it just doesn’t seem to measure up.
Right now, I sit awake trying to decide what is best for our children. Next week we are IY”H going to Philadelphia with Benny for treatment. Unfortunately, the CHLA (children’s hospital of LA) is not equipped for this treatment. The dilemma we face is not the course of treatment B”H, this is part of the treatment plan. What they (dr.’s) don’t tell you is a plan that will work for the kids left behind. Who should they stay with? For how long? Should we take them with us and make arrangements for them back east? Where will they feel most comfortable? Least homesick? As I am writing this update, my 9 year old son is sleeping next to me because he is worried about us leaving him next week. He told me he rather stay home than go to a friend because he will be less homesick. These are the decisions that bring me to tears. We don’t Chas Veshalom (G-D Forbid) want to do something that may cause them additional stress. On the other hand, is taking them going to be more stressful.
We have been very fortunate to be on the receiving end of such generous offers from people asking how they can help out. Offering to watch our kids here for the week, or take them on the plane and bring them out to us later in the week. We feel fortunate to be in the presence of such special people, but at the same time unfortunate to be in the position to have to accept their generosity.
That brings me to the next struggle we battle with. When to say “yes” and “thank you” or when not to accept. When we do say yes it is with the utmost sincere intentions. We are so very grateful for the invites my boys get to play by friends, knowing that their friends can’t play by our house because of germs. Or when a friend will call and ask what she can pick up from the grocery. Or what can she cook for Shabbos, etc. The list is too long and the hour is too late to name them all.
Life was so much simpler when the decisions of the day was what to make for dinner? When should I schedule the kids to go the the dentist? Who can we invite for a Shabbos meal? If it could just be as straightforward as balancing a check book! But as we all know, Hashem brings us challenges and the solutions are not always black and white. It’s not necessarily about solving the problem, but HOW you go about trying to solve it. WHO are going to be the tools to help? IY”H with the new month of Elul approaching, Hashem will be close by, among all of Klal Yisroel and provide us the clarity we need to get thru the equation!
B”H, Thank G-D we are happy to report to you that Benny and our family have been enjoying being at home over the past couple of weeks. Benny was able to go to shul (synagogue) this past Shabbos (the Sabbath) and shake people’s hands Shalom Aleichem and Good Shabbos. He loves Shabbos and loves to share that feeling with others.
I was also able to once again be blessed with the privilege of being home on Friday and having the ability to bake Challah with a Bracha (blessing) for a Zechus (merit) for Benny and many other Cholim (sick people). We were even lucky to be blessed with Orchim (guests) at the very last minute, who’s flight was cancelled due to bad weather back east. As I’ve mentioned before, not being able to have company has been one of the more difficult side effects. Most Shabbosim have either been after treatments when it is too risky for Benny to be around others’ or we have been in the hospital.
B”H Benny is quite strong, and his strength is quite prominent when we try and and seat him in his stroller or car seat. Neither of which he likes to sit in. He puts up quite a fight, to the point that he actually broke the metal frame to his stroller a few weeks ago. Luckily a dear cousin didn’t need her stroller anymore and found a new home to give it too. Some of the time he will walk, but most of the time he wants to be held. For a few minutes, it’s OK, but when minutes turn into hours, it becomes painful on my feet and back. I am torn hearing him cry and scream or give in and hold him. Holding him in the car while my husband is driving is nothing short of ideal either. What is one to do? We ask ourselves. Hear him cry and squirm like Houdini to try and get out of his car seat! An attempt that he was actually successful at, once. Fascinating to see! or hold him in the back seat on my lap buckled into a seat belt? I just think to myself B”H he is so strong and is just strengthening his muscles every time he puts up a fight. May he continue to fight with Hashem’s (G-D’s) help and overcome any obstacles that may cross his path.
Last week was a bit of an emotional roller coaster. B”H not because of Benny, but emotional none the less. The week began with phone call from a close relative notifying us of an emergency surgery scheduled to remove something foreign in his body. The dr.’s were not sure of the outcome before they went into surgery. B”H a Nes (miracle) took place and this relative was saved from the pains of a long and scary recovery. He already has begun to resume his “normal” daily life. However, after going thru this scare his life will have a new ”normal,” and that is being grateful to Hashem to be alive every minute of every day.
The following day, we received news of a father that was less than fortunate, who’s life was not spared. After a long car trip home from his future son-in- laws Uff Ruf (a celebration for the groom on the Sabbath before his wedding), the father wanted to learn before he went to sleep for the night. Unfortunately, during his learning, this father died of a heart attack on his couch with his Sefer (Holy Book) in his hands. I cannot stop crying and praying for this family, for the bride who is getting married tonight without her father walking her down her aisle, for the mother who is left alone to raise her 8 children. May Hashem bless this family with comfort and may they know of no more sorrow.
Today, as I took Benny out, wearing his “Team Benny” hat, with his 9 year old brother Yehoshua, I was approached by a woman asking me if this is the Benny everyone is praying for. I said yes. At that moment, the pain I’ve been feeling deep inside vanished. Instead, I felt the deep connection we all have with one another. Knowing the pain we have is shared by so many diminishes our pain and replaces it with hope. This hope gives us the ability to wake up each day with a smile, with energy from the fuel of thousands and Tefillos (prayers) and Zechusim (merits) being done on a daily basis.
As I am concluding this evenings blog, I have come to realization, when we feel each other’s pain, the pain diminishes. When we feel each others happiness, it increases. Let us use our energy to put an end to the pain and suffering and fill the world with joy and happiness. A good start is to greet someone with a “good morning,” as Benny likes to say when he passes people in the street “Hi!” It brings a smile and joy to the world.
All days are available at http://www.teambenny.net/tomer-devorah/.
Yesterday, two of my boys each had a tooth fall out. Of course they mentioned before they went to sleep to call the tooth fairy. And so we did. I was in the room this morning when my 7 year old woke up and saw a couple dollar bills on his pillow. I shared that very same smile when I opened my refrigerator when we came home from a doctor’s appointment at the hospital yesterday. A dear friend, who we can nickname the “food fairy,” came to our house when we were at the hospital, took inventory of what we needed and refilled the refrigerator and freezer. When we returned from the appointment the fridge and freezer were fully stocked with all the foods my kids love to eat. The physical nourishment is so important during this time, however, it doesn’t hold a candle to the spiritual nourishment that these acts of kindness provide us.
We are so grateful to all those woman that bake Challah each and every week for Benny’s Refuah Shlema. Just know that it has an immediate impact on Benny. Come Friday afternoon, Benny is eager to bring in Shabbos early, so he can enjoy Kiddush and especially eat his Challah, followed by singing Zemiros (songs).
Yesterday, after Benny’s doctor appointment and platelet transfusion he was given the green light to attend his cousins birthday party. He enjoyed the party as much if not more than the one year old birthday girl, Julia. He jumped on the moon bounce, rode an electric fire truck, rode on a swing and had a delicious homemade cupcake. It was a good day for Bennylicous!
Throughout this entire journey so far we have come across so many different fairies, or I prefer to call them angels of Hashem (G-D). We have been blessed with the following angels in our life: carpool angels, chef angels, babysitting angels, flying angels, entertainment angels, Davening (praying) angels, shopping angels, healing angels, and of course the errand angels. I know I left out a few, especially the angel that keeps track of everything for me! We are true believers and so grateful for all you angels of Hashem. You have made the most painful and difficult period of our lives, this Golus (Exile) filled with Simcha (happiness) and hope. With G-D’s help the redemption and ultimate cure will arrive very shorty. We all just have to BELIEVE!!!
Early this morning I received a phone call from my oldest (not by age, but years we are friends) friends parents. They called from Eretz Yisroel, saying they went to the Kevorim (graves) of our Patriarchs and Matriarchs and davened (prayed) for Benny. Yesterday, I received a similar email from a girlfriend also on a trip to Israel, saying she went to the Rashbi and davened for Benny. Today, I got an email from my cousin saying he davened at my great grandparents Kevarim. There is not a day that goes by without an email, phone call or in person, hearing that they are davening and doing some positive thing in their life as a Zechus for Benny. I have wrote it before and I will write it again, we share all of the Tefillos and Zechusim with all those that need it in the world. A couple days ago, a friend called saying she bakes Challah every week in the Zechus Benny should have a Refuah Shlema. She also went on to mention she gives out some of her Challahs to some families in the neighborhood who may not otherwise have Challah. One Mitzvah leads to another and another. I would also like to mention two young men that were placed here in LA this summer as Hashem’s angels. They spent their time making sure Benny’s older brothers were well taken care of. They literally wined and dined them in a kid fashion, not leaving out any toppings either. They gave my kids a sense of security and happiness that had unfortunately disappeared when this illness struck. There have been exceptional women in the community as well, who make it their business on a daily basis to see to it that each and every need of mine and that of my family are taken care of. Whether it is doing my carpools to and from camp, meals, snacks, playing with Benny or his older brothers, grocery store shopping or dropping clothes off at the cleaners, no errand is a bother. Each act is done with a smile as if it’s her biggest pleasure in life. I am not exaggerating in the least bit either.
I will continue with the lists of Chasodim (acts of kindness) soon. The hour is late and I must store up energy for tomorrow. All I can say is, more than sleep, it is your acts of kindness that give us the energy we need to get thru this very difficult chapter in our lives.
It’s a Beautiful Life is a silent film about a father and son going thru the Holocaust. The father pretends to be taking his son on a trip and tries to make the entire “gruesome” journey into a game. (I have not seen it, so forgive me if my synopsis is inaccurate).
In todays generation we face a new war. According to Rav Matisyahu Soloman, he said that todays cancer is the Holocaust of our time. B”H we are fortunate today to have an army of family, friends, doctors, nurses on our side to fight this war. We are reminded during our visits to the hospital of the Holocaust every time Benny gets a treatment. Before transfusions or chemo are administered, the nurses read the numbers on Benny’s wrist/ankle band to match the medication with the right patient. B”H this band of identification is only on temporary and is able to be removed once he is discharged. B”H these medications (side effects and all) are given to help save a Neshama (soul) not extinguish. Another reminder of the Holocaust is the room without a view. The room actually faces an exhaust pipe the spews smoke or some kind of exhaust . I try not too let my imagination get the worst of me. Instead I try and envision the smoke of a choo choo train as it goes around the train tracks at the park.
Then there are those most incredible times when we outright see the Hand of Hashem reaching out to us, either thru a doctor whose name is “Hashem,” or picture of an eagle about the hospital bed. For some reason it is easier to see the Hand of Hashem in the hospital than outside. Maybe because the distractions outside are too great.
I received an email this evening about the near possibility of a world war. Perhaps Hashem has given us a warning to cry, with all the illnesses and other inexplainable events that are occurring, to later spare us the pain of war. IY”H let our Tefillos be heard and accepted so that we are spared of any pain. Let it be that we have armored ourselves with shields built from Tefillos, Zechusim and tears. Let it be that the enemy surrender even before they wage its war knowing that they don’t have a chance.
May it be all the cries we cried for Benny and all the Cholim we know faced with this horrific plague be felt and heard. May the tears be one of joy and simcha as we celebrate the Geula (Redemption) in our days.
B”H this Erev Shabbos I am writing to you from home. It was been a busy week. Benny, his brother Joey, Ari and I went to NY, PA and NJ in just a few days. Benny IY”H will be going for part of his treatment to CHOP (Children’s Hospital of Philadelphia). The doctors had to meet with us and Benny to go over the treatment plan and show us around the hospital.
B”H we were Zoche (privileged) to fly private by the good graces of some very wonderful individuals, as going on a commercial plane would have been to dangerous for Benny,
being that his counts were very low coming out of chemo.
We landed in JFK around 8 headed straight out to Phili. The drive was a little over two hours. When we got to the hotel there was a treasure chest filled with toys that Benny was able to pick a toy from.
Wednesday we had to be in Chop at 10:30 for our dr.’s appt. While waiting for the appointment Benny was entertained in the playroom. There was an amazing organization Konker Cancer that came in with sewing machines and fabric and allowed the children to make their own pillowcases. Benny loved putting the straight pins into the fabric. His brother Joey loved the sewing. Benny also was greeted by volunteers from Converse and fitted Benny with a brand new pair of red Converse. We are thankful to Aunt Chani and Aunt Hindy and Tante Estee who drove in from NY and NJ to help out. We are also thankful to Chai Life Line for helping with arrangements and food.
B”H the consultation went well. We got a tour of the hospital and most of our questions answered. The meeting was quite emotional. It stirred up feelings that I had in the beginning of this whole ordeal. Like, “I can’t believe this is really happening.”
This next phase of treatment takes place in 3 weeks in Philadelphia for 1 week. After the appointment we drove up to NJ to attend the Siyum Hashas. There are no words to describe being surrounded by close to 100,000 Yidden from all over the world to celebrate the completion of the Siyum Hashas. Davening in unison, saying Tehillim, storming the Heavens for a Refuha Shlema for Benny and all the Cholim was surreal. I was just waiting for the sounds of the shofar to signify that the Geula has arrived. I”YH let us continue to hope and pray that we are all reunited once again very soon.
The following day we headed home, but not before we stopped by our former neighborhood in Clifton/Passaic. It was wonderful to see our close friends and family (for about 20 minutes). It felt that we were back in time, pre-illness.
Although the trip was exhausting, it actually felt like we had escaped from it all and had a break from at least the hospital here.
Wishing you all a wonderful and restful Shabbos.
Dear Faigie and Ari
I took the kids to the Kotel today specifically to daven for Benny. This is Tova(8 years old)
saying פרק קיט. She did all of Benny’s name.
watch video: cohen kotel
It’s an enjoyable sport if you are not the ball. Motzei Shabbos we B”H were discharged from the hospital after a 3 week stay (going home a few days in between). Today was the first day in a long while where Benny was just able to chill and relax. The morning started off by going on a walk with his Zaida. Later he went on another walk with his sister, Mommy and friend. Then he got to go bye bye to Bubbie and Zaida’s house. He loves going to his grandparents. Especially when he can empty out cabinets. It was a day that I looked forward to relaxing too. About 2pm Ari gets a call from the doctor saying that Benny needs to go back to the hospital to get a blood transfusion. The moments of tranquility came to a screeching halt.
Tomorrow (this Tuesday) I”YH we are flying back east for a doctors appointment in CHOP (Childrens Hospital of Philadelphia). The next part of Benny’s treatment will take place there and the dr.’s need to meet with all of us first. Benny’s doctor felt the blood transfusion would help boost Benny’s immune system and make him stronger for the trip.
And so I took him to the hospital. When we got there, the nurses tested his blood to see the levels. After an hour of waiting we were told that his counts remained the same as last Friday, they hadn’t dropped. The nurses then called the doctor to let her know the blood test results. The doctor was in a meeting but got a message relayed a by her assistant. The assistant responded back to our nurse that no transfusion was necessary.
At that point I was both perturbed that we had to come in the first place and relieved that we could go home and not have to spend the next 4 plus hours in the hospital. So I reloaded the stroller in the car, paid for parking and began to drive home. I notified Ari of the events along the way. He immediately emailed the doctor asking why a change of heart. The doctor responded that Benny was supposed to get a blood transfusion and that I should go back .Then she said to wait. Then she said he needs one. There was a great deal of back and forth and back and forth. Just like a ping pong ball!. Not quite sure who the players were at that point.
Back to the hospital we went, waiting once again for the transfusion. At that point, Benny had enough and became fussy. Do you blame him! Ari joined us soon thereafter, and Benny calmed down.
Being that it is the week of the Olympics Benny earned his gold medal for being the fastest ping pong baby today.
I hope and pray that this week go as smooth as possible and that we do not face any additional complication Chas Vesahlom this week.
Please have in mind that Benny be safe and healthy on his journey this week. Thank you!
We never dreamed or even had nightmares that we would ever be able to write our own Kinus.
Well today, we can honestly say that is a thing of the past. Today we write our own Kinus. Our Kinus began the night of April 7. Our “exile” began gradually. From the first sign that something was wrong until the actual diagnosis was 17 days. Throughout that period we were lead to believe Benny was sick with various different illnesses. Some doctors were dismissive and others believed Benny was in grave danger. The ups and downs throughout are too painful to describe with words. Once the diagnosis was defined things began to settle in. There was a plan of action in how to fight this ugly foreign invasion in Benny’s body. The treatment began. It was time to look forward to Benny’s recovery. From the first day we were admitted to the hospital we immediately saw and felt an army of support by our side. Family, friends, doctors, nurses all signed up to Team Benny.
As treatment began, Benny responded immediately, due to all of your tefillos’s (prayers) and Zechusim (merits). Then the bumps in the road began. The three most painful and frightening episodes throughout our journey was (it should be a thing of the past and I”YH not be faced with anymore tests) :
The first being the initial diagnosis.
The second, while Benny receives chemotherapy he is hooked up to get hydration, IV fluids. Many times this takes place during the night. Benny cannot sleep in a bed alone so we share one. It was early Sunday morning, I slept in the hospital alone. Ari was sick with a cold and fever so it wasn’t safe for him to be around. Benny had woken up about 5 am soaking wet. The room was dark, all I could do was feel his pj’s drenched. I called for nurses to come in and help. As we lifted Benny from the bed to change him, we noticed the bed was soaked as well. It was not from his diaper though. It was Benny’s blood, everywhere! The IV line became disconnected from the pump. Instead of liquids going into his body, they were coming out. Terrified is an under statement! I immediately begged Hashem to take Benny’s blood as a sacrifice, but not Benny. B”H we weathered thru that storm, although left with nightmares.
The third took place as a result from an infection that took place in the spot he had an epidural. We had just received incredible news that cancer was no longer visible on any scans, we were ecstatic. Within days we were back in the ER with yet another battle for Benny’s life, unrelated to the cancer. It was too much to bare and let Hashem know just that! ENOUGH!!!
B”H Benny finished 5 rounds of chemo. As I am sharing my feelings of Benny’s accomplishments with a nurse this past Shabbos, she begins to tell me the most difficult part is yet to come. I”YH she will be proven wrong and all the doctors and nurses will continue to be amazed at Benny’s strong will and endurance to beat anything that is thrown his way.
As we fast, daven, cry and listen to words of wisdom from our great Rabbi’s throughout this very sad day, I think of another line of speakers that are not heard.
Can you imagine going to hear a line up of the following speakers:
A mother of many children fighting for her life. The pain of her having to leave her children temporarily to go for treatment in a foreign country. Her love and will to live for 120 years to enjoy all the joys a mother and grandmother were meant to experience.
A teenager lying in the hospital talking about her summer plans that didn’t happen.
A mother talking about the pain of seeing her child going thru the pain of treatments. Feeling her child’s hair fall out as he lay next to her in bed at night. Not being able to squeeze his chunky legs because of all the weight he has lost.
I will stop. Yes this is our current exile. We need to get out of it. We need the Refuah the Geula.
We are in the right direction. We have experienced it first hand. The tremendous and endless outpour of Chesed. There is no act too little. No Tefillah unheard. We all feel each other’s pain.
As I’ve heard from Rebetzin Yemima Mizrachi “the destruction must happen before the construction.” Let it be that the destruction is a thing of the past and now we should only be Zoche (merit) to live in the times of construction and completion of the third and final Bais Hamikdash (Holy Temple).
This past Shabbos we spent in the hospital. I have to say, it was an unbelievable experience. We were privileged to have our Shabbos meals with Brocha Sara Chaya Bas Ronit Nava Tehilla and her mother and sister. We sang, said Divrei Torah and laughed. My sister Shira joined us and took care of keeping us all entertained with stories and happy thoughts. In the afternoon we had a Brochos (blessings) party. Provided by Binah J. (A Brochos party consist of foods in different categories. Each category has it’s own blessing that correspond to the goodness in ones life). We invited another patient Max and his mother and grandpa to attend. They too were away from their family for Shabbos. They were hesitant at first to come, but B”H (thank G-D) did. Max was suffering from mouth sores as a result from treatments and hadn’t eaten or drank in days. As we went around the room saying Brochos on the different foods, Max became more fussy. Just as Max’s mom wanted to leave, I asked her to stay for just one more round -the Brocha of Ha’Adoma (blessing on foods that grows from the ground). This Bracha corresponds to Refuah Shlema (healing). They stayed to answer the Amen’s and recite the Brocha as well (repeating each word as it was said to them). Then they left and took Max who was clearly in pain back to his room. As soon as he got to his room he began to eat and drink. It was a miracle! One that his mother, grandpa and all those at the brochos party will never forget. I gave her a book “The Power of Just One Word – Amen!” and told her we will have to rewrite the book and add the story about Max.
There are only a few more hours left to the fast. These hours are precious and can bring the Geula speedily in our days.
Surgery for Brocha Sara Chaya Bas Ronit Nava Tehilla, a very sweet 14 year old girl in need of a big Refuah Shlema was postponed. Unfortunately, she had to fast hours and hours before she was told it was postponed. The good news is she is given more time to collect more prayers and zechusim. We will IY”H be able to spend Shabbos together and rejoice with Zemiros and the Brochos party tomorrow.
My dear friend Aviva wrote me the following Divrei Torah
Shabbos Chazon (vision):The vision of destruction can turn into the vision of the Bais Hamikdash rebuilt…How?Parshas Devarim: Through the use of your words (dibur), your tefilos, prayers, can change everything.(based on Rabbi Moshe Weinberger’s lectures: Davening during the three weeks)May we greet each other next at the rebuilt Bais Hamikdash.
I just had to share a few amazing things that allow us to go into Shabbos with great SImcha.
After my midnight post, about wanting to make a Brochos party in the hospital this Shabbos, I received a text from Binah asking if she could help. Within just a few hours the entire Brochos party including paper goods was dropped off at the hospital. Grape Juice, cookies, dried fruit (limited with refrigeration) candy etc. Truly remarkable.
The Chesed continued throughout the day. Bikur Cholim and Chai Life Line providing food throughout the day and Shabbos. Then we had wonderful friends visiting and bringing Benny treats to make him and us more comfortable for Shabbos.
One thing I wanted to do was visit a special woman before Shabbos Chaya Zisa Elka Bas Bluma. Please daven for this woman of valor. She is a mother, wife, grandmother, daughter and so much more in need of a Refuah Shlema. Unfortunately, I didn’t get over to her house today, but the story I am about to tell just lets you know how connected we are with one another.
Our 11 year old son called us not long ago crying “saying his medicine was stuck in his throat.” We told him to drink and drink. He said he did but it didn’t help. He said the only thing that would help is a slurppie. That was not an option being that we are in the hospital. About five minutes later we got a call from our older daughter telling us someone just dropped off 5 slurppies for all the kids. That someone was the daughter of Chaya Zisa Elka Bas Bluma. It was truly remarkable. Our children cry out and Hashem deliver…within minutes. Chilling !!! no pun intended. May Hashem hear our cries, see our pain and deliver the salvation we need just as fast as the slurppie came and as fast as they disappear.
We are honored to have Auntie Shira join us this Shabbos. We are sending Ari home to be with the other children. Good Shabbos Klal Yisroel!
Picture of Brochos Party – You are all invited to attend
I wanted to share with you a magnificent Dvar Torah we received on this weeks Shabbos Chazon.
(written Wed. July 25
Reb Ari and Faigie,
Besuros Tovos, Refuos, VeYeshuous in this holy month of Menachem Av. Today is the Yartzeit of the Holy Arizal – which should hopefully shower upon Benny and the entire family great refuos, hatzlacha, simcha, and bracha.
I have not been in contact with you since Benny took ill, but I have been following the updates especially with my sister reminding me. Your blogs are truly inspirational – and a great lesson to all of us. Your emunah, bitachon, and overall outlook as portrayed by your comments are extremely powerful and touching. May Hashem see your efforts and repay them by turning days of sorrow into simcha, days of anguish into celebration – and the days of klal yisrael’s mourning into a yom tov – speedily in our days.
I wanted to point you to the last piece in the sefer Aish Kodesh, by the Holy Piacezna Rebbe, HYD – who wrote this entire work while in the Gehinnom called the Warsaw Ghetto. It is on this week’s Parsha – Shabbos Chazon. It is a small but very powerful piece – and one that I believe you can open up the gates of heaven with – if you beseech Hashem with his comments in mind.
It is Kdai to see inside – and I am happy to scan it and send it to you – but briefly the Rebbe asks why do we call this Shabbos: Shabbos Chazon? Yes its the name of the Haftorah – but we don’t call every Shabbos a name by the first word of the Haftorah. (Its not like Shabbos Nachamu or Shuva – that have a meaning – comfort or repentance). What message does the word Chazon impart? Chazon just means a vision – a prophecy.
He explains based on a medrash in Shir HaShirim that Chazon is the most poignant of prophecy – the most vivid and real experience of a futuristic prophecy. To actually visualize the happenings in the future carry with it the highest degree of prophecy. Other prophecies were related to prophets by hearing voices/words – this prophecy – the one of the destruction of the Temple – was not merely told to Yeshaya HaNavi but shown to him – in all of its tragic detail.
He then explains how different it is – to hear or read about suffering from actually seeing or experiencing it. In prewar times – he recalls mourning over the destruction of the Temple, and at times crying about the suffering and pain he read about in Eicha and the Kinos. In fact, he writes even in the beginning of the war – when he heard about others suffering he “empathized” with them. But now (in 1942) when he saw and experienced the suffering himself, he realized how his imagination was not even an iota of seeing it in real life.
But there is hope.
He explains a pasuk in Shmos in a truly powerful way. The pasuk says that Hashem saw the suffering of the Jewish people, and decided to redeem us because he knew our pain. He asks why does the pasuk say that Hashem knew our pain? Of course – if he saw our suffering – he knew our pain.
He explains with a parable – While a parent might understand that a surgical procedure is for the good of their child – it is inhumane for them to see the child being cut. For at the time of incision – the parent can only focus on what they see – their child being hurt… at that time – there isn’t any feelings of well its for the good of the child – there is only pain.
When G-d in heaven – our parent – saw the suffering – then even though he knew it was somehow for the good of the Jewish people – all he can focus on was our pain. He couldn’t bear to watch anymore and commanded Moshe to go take the Jews out of Egypt – and then began the path to redemption!
Shabbos Chazon is a time where we beg Hashem – please look at our suffering – see what we are going through. Even though, You in heaven know that it is all for our good… focus your eyes on the pain – and realize that even You should not be able to bear this anymore. This is why it is called Shabbos Chazon.
The Haftara ends with ultimate redemption – and we too pray that in the month of Menachem Av – that the ultimate Father in heaven be comforted with the eradication of all sickness, of all tears.
May it be His will that your Binyamin Chayim grow up to be the talmid chacham and tzadik that will illuminate the world with his kochos and may you only see simcha from your entire mishpacha.
With a broken heart,
BeEzras Hashem Yisborech in three days we are going home from the hospital. Being that it is the saddest day of the year of the Jewish people, it is ironic that we are looking forward to it. We are counting down the hours of going home. We have been uprooted from our normal life. We have been here so long. We feel homeless. We feel we don’t belong. We feel the Golus (Exile). Thank G-D we have food and shelter, but we miss being part of a community on a daily basis. We miss the comfort and security of our home. We miss serving Hashem (G-D) without restrictions.
In three days we hope to celebrate, kissing the Mezuza on the front door (which Benny loves to do), seeing the hummingbirds in the backyard, watching the magnificent sunset from my daughter’s room, sleeping in something other than a hospital bed and most of all QUIET (no machines going off all night long, no nurses waking us up 100 times a night).
It somehow seems appropriate to be going home this Sunday. This is the day we all yearn to go HOME. End of our oppression. End of our pain and suffering. Heal our loved ones. Find ones soulmate. Promised Land here we come.
This Shabbos Benny will not be alone. There are 4 other Jewish families R”L on the floor. I hope to be able to arrange a Brochos party as a Segula for a Refuah for all the sick children here.
We are unfortunately joined by Brocha Sara Chaya Bas Ronit Nava Tehilla. A delicious 14 year old girl who loves to do all those things a teenager does. Being in the hospital is not one of them. We are in need of your Tefillos tonight, and tomorrow as she goes into surgery. Please Hashem grant this beautiful yidasha neshama a long and healthy and happy life 120 years. May she be zoche to grow up, get married and build everlasting generations.
You may ask why we choose to share Benny’s life with all of you. The most personal feelings. The deepest of pains and greatest of joys. It is to bring to you the unimaginable , imaginable. We are all in Golus too long. We no longer feel the unimaginable pain Yerushalayim feels. We are too comfortable. Going thru this experience with Benny gives us the ability to wake up. Feel the pain, take action. Do something. Make a change and see that it works.
IY”H in three days, with all of our continuous Davening, Zechusim and hard work we will turn the tears of pain into tears of joy and be Zoche to bring the Geula Shlema.
I’m not much of a roller coaster rider. I’ve been on them, a select few, but I cannot stomach the 100 feet + drops or high speeds. It leaves me dizzy for hours.
These past few days we seem to be on roller coaster that has malfunctioned and won’t let us OFF! As I mentioned in yesterdays update the situation regarding Benny’s infection in the epidural site. B”H the infection is superficial, and not deep, however, the infection needs to drain. Without getting into details of how it is drained, yesterday a doctor from anesthesia drained it in our room. What we were told at the time, it was a common procedure and helps accelerate the healing process.
This morning we were abruptly woken by about 11 doctors from the surgical team coming in the room at once to examine Benny. They were pleased with the way Benny’s wound was healing. About an hour later the infectious disease doctor came in to examine Benny too. He was not pleased with what he called an “angry wound.” Then came the oncology group, I think I counted 4 doctors. Then the resident came to check in , followed by the pain management team. Our primary oncologist came to discuss this new bump in the road or you can call it a roller coaster dive. Finally the doctor that performed Benny’s surgery came to look at the site. This surgeon was not happy with the wound either and said he is booking an OR within an hour to further drain and clean the site. So back to the OR we went. Just as we were leaving the original doctor who administered to epidural showed up as well. Luckily Benny hadn’t eaten anything (not for lack of trying) or we would have had to wait for hours for his stomach to empty out.
As we waited in the prep room, we were greeted by many familiar doctors and nurses all showing disbelief on their faces of what transpired. One after the other said they have never seen this occur. It was not comforting in the least. True everything is from Hashem (G-D) and everything happens for a reason, it is difficult when possibly dealing with human error. B”H the surgeon did what he needed to do in a short time, even though no time is short when their child is in an operating room.
…And so, here we are here in the hospital for the time being, no sense yet of when the roller coaster will be over. Once the infection heals with the help of G-D very soon, we start round 5 of chemo (generally 4 days).
I will end with a short video clip of Benny winning over the hearts of all the nurses as he is carried into the OR. His smile and laughter were contagious throughout the OR. Oddly enough it was the first time we were smiling all day!
Click on video: IMG_2574
What does it mean?
I have never really thought of the what the full extent of Refuah Shlema means until now – the past three months . Yes, I have always wished people Refuah Shlema and really felt their pain. However, aside from physical pain, I never really thought about the other pain that goes along with an illness. The pain of the lack of normalcy that is taken away. As I sit up late writing this, waiting for Benny’s last antibiotics to go in him I think of the pain. Pain is not being able to kiss all my children and tuck them into their covers at night while we are in the hospital. Pain is not seeing their smiling faces when they come home after camp and hearing about their fun day. Pain is not seeing them run around in the backyard or playing a card game with them or sitting down to dinner with them. Pain is the phone call I receive from my children asking when Benny and I are coming home from the hospital. Pain is no longer waving to my neighbors in the morning. These are just a few examples. There are too many to list. How do we as parents be in two places at once? Benny needs us. Our children at home need us.
So I have learned to become more sensitive to the term Get Well. There is a much deeper meaning than just the actual illness. Walking thru the hospital almost on a daily basis seeing all kinds of illness, I begin to say to myself I wish this kid can WALK again, kick a ball in the park, or I wish this kid can FEED himself and hold their own ice cream cone. I wish that child can HEAR the birds chirp outside or his name being called. I wish the next child can SEE the beautiful world Hashem (G-D) created or his own face in the mirror.
Refuah Shlema means get well, get home, and get back to the “normalcy” of every day life.
It is a blessing to the Choleh (the sick one) and to the entire family and community that are involved. It is a blessing that affects generations upon generations.
My bracha to all those in need of a Refuah receive one to the utmost fullest in every area of your life and the lives around you.
There is so much to write about. Not sure if I’ll get to it all. The hour is late!
Fridays post, Erev Shabbos we were thrilled to update all of you that we were able to go home and be with our family for Shabbos. We had a wonderful Shabbos dinner and Shabbos lunch with the kids. We even got in a Shabbos afternoon nap B”H.
It wasn’t until we woke up, did we find that Benny was running a fever and noticed an infection at the site of his epidural (administered during his surgery last Wednesday). 22 hours after we came home we headed back to the ER. We spent the rest of Shabbos and all of Motzei Shabbos (Saturday night) in the ER.
Just when we thought we could cry no more… we were inconsolable or at least I was! It was just a few days prior we received encouraging news from the surgeon that Benny made great progress on his road to recovery. We were on a high. Then Saturday night, those feelings came crashing down. Now we were faced with an infection by the epidural site. The doctor that administered the epidural could not give us any answers. He out right said, he never saw an infection at an epidural site before. Well that didn’t make us feel very good nor confident in the doctors care. We didn’t know, nor did the doctor, how much time we had to find out if the infection was superficial right under the skin or deep near the spine. After hours of pleading (with the hierarchy) to move for an emergency MRI to see where the infection was, we were booked for a 1:30 am MRI. The MRI team had to be called in from home. It was eerie being the only patient in and around the MRI department. Not a soul could be seen other than a security guard and the MRI team. The MRI lasted a long and painful hour. An hour full of tears, pleas to all we could reach to daven (pray), and utter despair. How could this be happening? Benny was doing so well B”H, and then we were once again challenged with this. The feelings of fright do not justify the long stressful hours we endured.
About 3 am we were given a preliminary report that B”H the infection was contained to the surface of the skin. Needles to say, it was another “all nighter”.
So today, as I reflect back on the last 36 hours, I think of the light that we worked so hard to reach these past few months, only to have it temporary dimmed over the last 36 hours. B”H it was a very painfully short time period that we had to endure. I began to think about the light in the world, the daylight and nightlight. The sun is bright as can be. It lights up the sky, and our homes. But so is the moon. It is just a different light. It may not fill all our rooms with full light, but it is never completely dark either. And so even in what may seem the darkest of times, there is always a light somewhere to be found. B”H with the help of all your Tefillos and continued Zechusim we are able once again to find the light.
We just got discharged from the hospital. Benny will IY”H be able to continue his recovery at home over Shabbos. A Gutten Chodesh!, a Gutten Shabbos!
click on video: benny wishes you a good shabbos
Today Benny was feeling a little better B”H (Thank G-D). He sat up for some time in his bed. He read a few books, blew bubbles, and had some special visitors. His grandparents, grandma from NY, auntie Shira, friend from the valley, Harry and Lori and Riley. Harry (from Glee) and Lori played games with Benny and helped him exercise without him realizing it (part of dance/art therapy). Though we have never met Harry and Lori, they were so kind and generous of their time to visit and make Benny happy. Riley is a 4 year old Golden Retriever. Benny communicated his “ruff ruff” and smiled while his Zaida did his famous “donald duck” voice. Riley took an instant liking to Zaida and felt right at home on Benny’s bed.
We hope tomorrow Benny will be allowed to eat solids and begin to get his strength back. His siblings are eager for his return home. Unless Benny shows great signs of improvement by tomorrow afternoon, we will once again spend Shabbos in the hospital. At least we are in a room with a view and a mural of an eagle above Benny’s bed, which represent the Kanfei Hashechina (wings of Hashem).
This morning my sister Shira had a gathering of over 40 + women reciting Tehillim (Psalms) for Benny, his friend Yaakov Ben Inbal, and other Cholim in the community. The power of these Tefillos along with the Achdus (togetherness) of these women from all over should bring the Refuah that is needed.
Yesterday, as Inbal was reciting Tehillim next to me while Benny was in surgery, we discussed the unique and special woman that Shira is. She has the biggest heart of anyone I know. She is beautiful, inside and out! She is unique in that she knows how to make everyone she meets feel special and her best friend. She is always doing for everyone else. So now it’s my turn, our turn to do for her. She is a loyal daughter, sister, aunt, niece, and friend. The two nouns missing are wife and mother. Inbal said to me “how can we find that someone for Shira? What can we do?” So this blog is dedicated to “Auntie Shira.” Although, many of you know how special Shira is, there are other’s that have never met her. Just maybe through Benny’s situation he will be Zoche (merit) in helping find his “uncle.” Everyone is deserving of their own personal Geula (redemption), but, we need each other to facilitate it. Those of you who are reading this, may have a brother, son, uncle or grandson who is also waiting to find his match in life. Criteria for Benny’s uncle is as follows; Bal Chesed (kind), sensitive, sense of humor, generous, loves Yidishkeit, intelligent, enjoys traveling, must love family (we have a big one! our 3rd cousins are considered 1st), between 45-55 years old. For more information or to send your information please email me firstname.lastname@example.org.
Below is an email I received earlier – it just validates the power of togetherness.
Tonight, erev Rosh Chodesh Av 5772 there will be a women’s tefilla at the Kosel at 20:00, with an emphasis placed on achdus yisrael (togetherness). Organizers explain that with rosh chodesh being the yahrzeit of Aaron HaCohen, who was known for his peace-making efforts, it is a most appropriate time to be mispallel (daven) at the Kosel for his ever so important cause, that we should get along and respect one another.
The effort is being organized by the Am Echad im Lev Achad organization, which sponsors the annual event in the hope of bring Jews closer together. A number of prominent rebitzens are planning to attend but prefer that their names are not published for reasons of tznius. They women will be reciting tefilos and tehillim, including prakim 119 and 133, which contain the letters of the Hebrew words ‘achdus yisrael’.
The goal according to the women is to increase achdus and ahavas yisrael, and they are hopeful in the merit of the effort, the unity of their tefilos, the message will be heard. There will be simultaneous tefilos in Eretz Yisrael at kivrei tzaddikim as well as in cities, town and settlements throughout Eretz Yisrael, and also worldwide. Those women and girls who are outside of Eretz Yisrael are asked to join in these prayers at the same time, if possible, or whenever they are able.
B”H Benny is out of surgery. We are grateful to Dr. Stein and his team for their expertise, care and compassion in helping Benny reach his full recovery.
As he sleeps on the bed next to me, I just stare and think to myself what this little baby of 20 months has gone thru in the last 3 months. It is really unimaginable to think about it. What has me more in awe is his Simchas Hachaim (love of life). Just yesterday he was enjoying the breeze at the ocean, shoveling sand over his toes, a piece of chocolate and best of all dancing with his Zaida and auntie Shira during dinner. He actually wore his Zaida out, but insisted he keep dancing and so his Zaida did. On the way into the operating room he was giggling. It caused me to cry more. His love for Hashem (G-D), for life shows no boundaries. As Benny was in surgery I recited Perek Shira (the Songs of the Universe). The song concludes with song of the dog. The last song is given to the dog. The dog represents his devotion to his master. The dog will do anything for his master, “his best friend.” One of Benny’s very few words is “ruff ruff.” Yes he loves dogs, maybe because they share the same Middah (characteristic) of “Loyalty” to his Master. No matter what is thrown at him, he picks himself up, with a smile and even has the ability to make others around him smile and serve Hashem (G-D). He goes to sleep with a smile, sleeps with a smile and wakes up with a smile.
While sitting in the waiting room davening (praying) we were privileged with a very special visitor. A woman of valor, Yaakov’s mother. Yaakov (17 months) is Benny’s friend who is also fighting a childhood cancer, and is being treated in this hospital. They were diagnosed a week apart and have been praying and playing with each other. Yaakov’s mother, Inbal had spent the whole day here just yesterday with her Yaakov. She has a small baby at home and 8 other children to care for. So when she walked in with her Tehillim (Psalms) spiritual nourishment, in one hand and danishes in the other, a tremendous burden was lifted. We discussed the significance of our two families merging. We come from Ashkenazik descent and they from Sefard. The power of these two sects uniting together as one, feeling each other’s pain is immeasurable. May Hashem (G-D) bless Inbal and her family with strength, courage only good health. Let us all unite under the Kanfei Hashchina (wings of G-D) in peace and prayer to bring the final Geula Shlema (final Redemption).
We are sitting and waiting for Benny’s doctors to complete what we are sure will be a successful surgery.
We sit here with our tehillims pouring our hearts out to the true healer praying that His messengers accomplish their appointed tasks with His hand guiding theirs.
Yesterday, I was able to spend a few precious moments with a true Tzaddik ben Tzaddik, R’ Aharon Holland from Ramat Beit Shemesh (the son of Rabbi Shlomo Holland SHLITA). He shared an amazing thought that was made even more potent this morning.
What is the power of tefillah (prayer)? If a person has zechusim (merits) he will have a salvation… If one doesn’t, why should prayer help?
R’ Holland shared that the power of tefillah comes from the closeness that it creates between a person and Hashem. As we daven, pour our souls out to Him, we create a closeness and that closeness transcends the merits we may or may not have.
R’ Holland then asked, if that’s the case, why do my prayers for someone else have any impact at all? The fact that I get close to Hashem shouldn’t logically have an impact on someone else…
He explained that the pain of the person who is the “recipient” of the prayer has caused someone to come closer to Hashem and that sizable merit is given to the recipient.
This morning we had a visitor. A mother of 9 (k”eh) who’s young son Yaakov was diagnosed at about the same time as Benny. We have spent time together in the hospital (see Faigie’s post about Yaakov ben Inbal to learn more about the incredible connection between Benny and Yaakov) including an amazing Shabbos kumzitz with Yaakov and his father.
We have been davening for Yaakov and they have been davening for Benny. She dropped everything to come and daven with us this morning in our time of pain. She added the following thought… (While not literal – the concept is amazing…) When someone in the hospital has lot’s of visitors coming and going it creates a perception on the part of the medical staff that the person is loved dearly. This causes the staff to be even more attentive to the needs of that patient.
The same is true with Hashem (not literally, of course). When He sees hundreds of “visitors” praying for an ill person, he notices and feels “compelled” to heal that person.
We want to thank the literally thousands of people who have been davening for Benny. PLEASE keep it up and add Yaakov ben Inbal to your tefillos (if you haven’t already).
With great love.
Ari, Faigie, Benny and Family
The night is short so I will be brief. Tomorrow IY”H (G-D Willing) Benny will be going in for surgery bright and early 7:30. We have to be at the hospital at 5:30 for pre-op. No food after midnight, no drinks 3 hours prior to surgery and no whining please! Explain that to a 20 month old. Surgery is expected to last around 2 1/2 hours. We appreciate your Tefillos and Brochos and Zechusim at that time for Benny’s complete Refuah Shlema Min Hashamayim. May the doctor be guided by Hashem to remove only that which is unhealthy and dangerous to Benny and keep the healthy parts in place.
Today, we enjoyed a beautiful day at a park by the beach. The air was refreshing and the temperature was perfect. Benny laughed and giggled the whole time. It was quite emotional seeing him walk or wobble on the sand knowing that tomorrow he will be too weak to get out of bed. While he was walking over the small mounds of sand and falling every so often, he immediately picked himself up and continued on his walk as if nothing happened. We are hoping for the same outcome tomorrow G-D Willing. No matter what transpires, Benny will pick himself up as if nothing can stop him and keep persevering and remain strong, upbeat and extraordinary happy.
Today, as Benny ran after a seagull, I thought of the amazing Mitzvah of Shiluach Hakan and the power of the Mitzvah in blessing someone that performs it with a long healthy life. Although, he has not yet performed this Mitzvah personally himself, others have on his behalf.
Watch Benny enjoy life I am having technical difficulty at the moment – I will try and work on uploading the video tom)
Today was an off day. An off day is when we don’t have to drive 4 miles east of our home and enter a building that we don’t leave until days later. Today, Benny did not have to take that drive, instead his older brother Shmuel Tuvia did to have his cast removed B”H (Thank G-D). He is once again free to swim, bathe and sleep without a weights on his arm.
Knowing we only have three days out of the hospital this week, every minute is precious. The difficulty is deciding what to do. Do we try and live a normal life, get an oil change and car wash (which my car so desperately needs), go to the grocery store (which my refrigerator needs), or just go to the swings at the park, or for a stroll by the ocean or get a milkshake? Should we be going to sleep early, knowing we are not going to get much after Wednesday’s surgery?
Every time before we go into the hospital it feels like it’s Erev Pesach (the Eve of Passover). Trying to get done all the errands, doing the things around the house that never seem to get done, hang pictures on the walls, change light bulbs, sort the toys, sort through the clothes that are too small on my kids, make sure the kids have supplies for school. I know it’s early but we don’t know our schedule one day to the next and before you know it, school it starting and the kids are not prepared!
Most likely I will get an oil change and car wash. We need to be prepared at all times in case of emergencies (G-D Forbid). I hope to get in some relaxing time as well and try not to miss out on the opportunities that come my way.
If tomorrow brings you the opportunity to ; read a book to your kids, take a walk or a nap, relax in the sun and meditate, Daven with a Minyan (pray in the synagogue), go to a shiur (lecture) GRAB IT, ENJOY IT and be GRATEFUL the opportunity came your way. Don’t look at it as a burden or something you are forced to do, look at it as a Chesed (kindness) from Hashem (G-D) that He is giving you that opportunity.
Dear Ari, Faigie, and of course the precious Binyomin Chaim ben Faigie Sarah,
Someone sent us a link to your website last week and we have shed many tears with the terrible pain that you have gone through, and we hope and have been Davening that you should only be able to share to the entire world Besurot Tovot about your family, and that your precious son Binyomin Chaim ben Faigie Sarah should have a complete Refua Shelimah from Hashem AMEN. We wanted to let you know that we have taken a Kabbolah on ourselves as a Zechut for a Refua Shelimah for your son and Bli Neder we hope to daven daily for his speedy and complete recovery.
Although we never met you we are inspired at your special Emunah and Bitachon in Hashem as we read your “Devarim Hayotzim Min HaLev.” We can do nothing but marvel at the amazing Zechyot you have accrued by Hashem, and your unflinching belief in the Refuos that Hashem can provide, and may it be a Melitz Yosher for a Refuah Shelimah for Benny. We don’t know if it is helpful or comforting to you but we truly feel your pain so strongly and we will continue Davening together with you.
Eleven years ago we published a Sefer on the Mitzvah of Shiluach Hakan (Shaleach Tishalach and in English A Practical Guide to The Mitzvah of Shiluach Hakan). Being that Shiluach Hakan is a Mitzvah that the Torah ascribes “Arichut Yamim” it would be a Zechut for us to take Benny to do the Mitzvah of Shiluach Hakan. Being that we work in North Jersey we can do our best to look for a nest near Passaic where we saw you reside. The Mitzvah is somewhat easy to complete Benny can bang with a stick near the nest with your assistance and you would retrieve the eggs of the nest and give it to him. Has he done the Mitzvah yet?? If not is it something that you would be interested in doing?? If yes we will try to find a nest in North Jersey but if we aren’t successful in finding one would you consider coming to Lakewood where we reside to complete the Mitzvah??
May Hashem Bless you and Binyomin Chaim ben Faigie Sarah with all the Berachos, and we eagerly await good tidings.
The Aruch Hashulchan writes that we say in Shemonah Esreh “Rifaenu Hashem Vnerafieh”, he explains that when Hashem provides a Refuah to a person they never go into remission and suffer from that illness again. That is why we say Rifaenu Hashem Vnerafieh, if you Hashem heal us, not through an angel or an intermediary, Vnerafieh then the person will be healed from the illness forever. It is our Berachah to you that Binyomin Chaim ben Faigie Sarah be healed from Hash