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