Sorry once again for the lack of updates. But as always no news is good news. BH there hasn’t been much to update as Eli has been at home for a pretty long break. This past Wed morning for the first time in over a year Eli went to school for about 2 hours and was warmly welcomed by everyone. Unfortunately that night he came down with fever and ended up testing positive for a infection which landed us in the hospital until Shabos morning.
Eli was supposed to start chemo/immunotherapy on Sunday but it got pushed off a day as a result of the infection and antibiotics. Eli is now checked into CHLA until either Shabos or Sunday and we hope and daven that all goes easy and smooth for the rest of the week.
This past Friday we had a truly touching and amazing story. On my way back to the hospital I dropped off at Rabbi and Mrs Shlomo Einhorn a Bar mitzva present in honor of their sons Bar mitzva at about 4:00pm. They said they were so excited that Eli was home and will be at the kidush. I told them unfortunately Eli is actually in the hospital and probably will be out in the morning but not for sure. It clearly bothered them that this was going on during their simcha. Anyway I wished them Gut Shabos and Mazal Tov. At 5:25pm (33 minutes before shkia) Rabbi Einhorn and his son the Bar Mitzva boy who for sure had nothing better to do at that time marched into our room at CHLA to wish Eli and I Gut Shabos with a big tray of cookies. Truly inspiring and touching and most appreciated. (BH Eli was able to repay the visit and made it to the Kidush)
Currently in MSKCC Hillel Sholom Shachne Ben Rivka is receiving treatment for the same machla as Eli and due to the fact that they are from the UK many of the costs are currently not covered by insurance. Anyone that can financially help them they have setup a gofundme account and it will be a real Chesed for anyone that can help. https://www.gofundme.com/urr8nsv9
Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
About 2 weeks ago Elis port site started to undo and was showing signs of a possible infection. They scheduled us for the next day to remove his port so that it doesn’t cause any blood infections. Since then Eli has been using the Picc line for blood drawns and nightly TPN. We are currently in CHLA for a scheduled procedure to put in a new line in Elis chest. It will have what’s called a double lumen so that 2 different medications that can’t be mixed in the same cocktail can happen simulataeously. The procedure is meant to last about 60-90 minutes to install and remove the Picc line.
On Sunday Eli is once again scheduled to be inpatient for the week for the next round of chemo and immunotherapy. That will be followed Beezrat Hashem by a week of lab draws and transfusions and that once again will be followed by scans.
Please keep Elimelech Ben Basya in all your tefilos today and always. Also Hillel Sholom Shachneh Ben Rivka is IYH about to begin high dose chemo and will need our tefilos. Please have all Cholim in your tefilos.
After a week that for some reason felt like it would never end even though BAH Eli did well and was pretty much a pain free week we are finally home. As always it will take a while for Eli to get his strength and his good mood back but that’s all part of the deal.
We are looking forward to being home and beezrat hashem other then some basic labs and transfusions nothing else for now is on the schedule.
Please as always have Elimelech Ben Basya in all your tefilos. A GUT SHABOS
Eli checked in Sunday at 2pm for scheduled chemo with immunotherapy once again and will IYH be here until Friday morning. They did on Sunday chemo and will do that each day. Immunotherapy starts Monday at 11am and runs for 4 days at a pace beezrat hashem that will be tolerable.
Please as always have Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
Sorry for not updating anything lately. Last week on WED Eli had a MIBG scan and on Monday he had a bone marrow biopsy. Today we met the DR for the results and to plan the future treatments. The DR is satisfied with the results and feels it’s the right path to continue doing the same treatment and IYH that’s the plan once again this Sunday. It will be another Sunday- Friday in CHLA and beezrat hashem a pain free week.
Other then that Eli has been feeling BAH pretty well and getting out as often as he feels he’s up to doing that. It’s been twice a week lab checks which lately result in about once a week needing a blood transfusion.
Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos.
Eli is BH slowly recuperating from last week’s inpatient stay at the hospital. On Tuesday we got lucky when Eli went for a lab check and he didn’t need a transfusion. Today as expected Eli is getting a unit of direct donor blood.
I write this because this Sunday Bikur Cholim is having a blood drive to benefit Children’s Hospital ay Yavneh. This blood will help to save so many children, including those who we know from our community. It is VERY important that Bikur Cholim along with the frum community for whom CHLA does a lot to accommodate, show the hospital that we care and will help with this blood shortage for their patients. Bikur Cholim has in CHLA kosher meals, a fridge in every room that a jewish patient is in, direct donor blood program, shabos candles, extensive medical referrals, and a very long list of other services. As I have mentioned many times, the help Bikur Cholim has done and continues to do for Eli and our family on a daily basis and we have and owe them a tremendous amount of Hakaras Hatov, please if you have time this Sunday to donate blood at Yavneh call the Bikur Cholim office at 323-852-1900. Tizku Lmitzvos!
Eli IYH next week will have scans on WED to see what the latest status of the disease is and to determine the next best course of action.
Please as always have Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
Eli just got home after being in the hospital since Sunday afternoon. After not a very good day on Monday they finally found a semi comfortable level to run the Immunotherapy level at and balance a normal amount of pain meds. So BAH from Tuesday until Friday for the most part it went ok.
Because Eli was on so many meds and monitors it wasn’t possible to leave his bed so it will take a good few days to get him back on his feet. We are happy to IYH be home for the final 3 nights of Chanuka after missing the first 5 and look forward to getting back to semi normal life.
In a few weeks they will do scans again to see what this treatment did and to decide the best course of treatment after that.
Please as always keep Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos. A GUT SHABOS. A FRELICHEN CHANUKA. A GUT CHODESH
Eli checked into CHLA Sunday early afternoon in hopes that beezrat hashem all goes well we should be able to be home for Shabos. On Sunday they started chemo which Eli will get daily. They also started on Friday already a medication to hopefully help ease the pain of the immunotherapy which is scheduled to begin Monday at 11:00AM and run daily over about 16 hours for 4 days.
Please keep Elimelech Ben Basya in your davening that he should have a pain free week of treatment and that the treatment should have its full effect.
We just landed back in LA from a unforgettable amazing trip to Orlando FL. We left Sat night and landed back WED night after 4 days of non stop fun and action. This was all arranged by a organization called Ohr Meir (which has a website and a instagram page @ohrmeir). They annually take children fighting cancer from across America to Orlando on a all expense paid trip. They have an amazing medical staff, amazing counselors most of them Eli knew from Camp Simcha along with amazing food. This is all arranged by the Friedman family in memory of their son Meir who fought 7 hard years and was niftar in 1994. The happiness they bring which is clearly written on every one of the kids faces is a sight you won’t see anywhere. The caring counselors and staff combined with the entire Friedman family makes this trip not possible to duplicate.
Generally this is only for kids but Eli’s physical situation and need for medical attention I had to join to physically help him along the way. Eli enjoyed Sea World, Universal Studios, Disney Magic Kingdom, a shopping spree at Toys R Us and the list goes on. Ari Dembitzer, Nurse Brocha, Dr Steinhartz, Hachusen Yakov Jeidel and of course Eli’s most caring counselor Eliyahu Katz along with the entire staff made Eli enjoy this trip and all we can say is THANK YOU THANK YOU.
BAH Eli has been feeling ok and Thursday morning it’s back to CHLA for a procedure to put in a picc line as a added IV site so that for the next round of treatment they won’t have to scare Eli with the IV pricks. This is all in preparation to begin the next round of chemo/immunotherapy together again begining IYH on Sunday or Monday depending when a bed becomes available. It will go the entire week until Friday/Shabos. BH this time they are starting Eli prior to this painful treatment on a few different pain meds to hopefully make it a lot easier beezrat hashem.
Once this treatment round is over we will then schedule scans to see what this treatment did for Eli and once again decide from there the best approach to further treatment. Other then that for the most part Eli has been relatively quiet and as always when there is no post it’s because no news is good news.
Another child from the UK whose parents we have been in contact with and who did very well during treatment unfortunately has relapsed and we are davening that his parents are given clear direction on the best treatment for Hillel Sholom Shachneh Ben Rivka and that he should be zoche to a refua shelayma bkarov.
These young children are also fighting and having them in mind would be appreciated and IYH will be a zchus
Menucha Rochel Bas Gila Elka
Golda Bas Miriam
Gittel Bas Shoshana Rochel
Yonasan Refoel Ben Baila
Avrohom Ben Leah
Malka Braindel Bas Shayna Shifra
And of course Elimelech Ben Basya bsoch shaar choley yisroel AMEN
A brutal 5+ days of treatment is finally over. This week consisted of 2 different chemos every day and that was followed by Immunotherapy which is extremely painful and it runs in a perfect world for 10 hours but we finally found a level that Eli was able to handle somewhat which takes about 16 hours. He got this treatment 4 days this week so a total of over 60 hours of torture. To top all this off with every hour of treatment they need to check vital signs and drive you more crazy. Eli went thru 2 separate Operating room procedures as the first one didn’t work and they could place the new line. On Wed morning they succeeded and put in the 2nd line.
Also this month the hospital started using a bar code system so every time a new IV or oral medication is given which this week was 15+ times every day they need to undo Eli’s blanket and find the bracelet and scan it. I sent an email to every person in CHLA to demand they find a solution to end this even though it is for the patients safety as an alarm would go off if the wrong medicine is by mistake trying to be given. It can be attached to the wall or the bed post or add a longer bracelet so they don’t have to disturb him so often.
BH we are now home and hopefully have a few weeks while we pray that CV Eli doesn’t get a fever which is a possibility from the chemo and let Eli get some much needed rest. We beezrat hashem will repeat this treatment in a few weeks.
Please continue as always having Elimelech Ben Basya in all your tefilos. A GUT SHABOS