There hasn’t been much to update and that’s the reason there hasn’t been an update. Eli BH has been at home since getting back from NY and like we were told by the DRs in NY that the MIBG therapy would hit as time goes on it seems like its doing just that. Eli hasn’t been physically able to do much and is pretty weak but BH in a good mood. We did get out a few times to try going together as a family for an outing but it didn’t last very long but enjoyed the little time we had.
Elis blood that was drawn on Thursday had low hemoglobin and therefore we were in CHLA today for a blood transfusion. Its a long slow 4-6 hour process but beezrat hashem it will do what its meant to do.
Other then that we are trying to get the schedule from MSKCC which as it stands now has us in NY from 7/15-27 for scans which we daven daily will show a good change so that they can repeat the MIBG therapy after the scans. Scans are scheduled for 7/16,17,18 and in patient IYH 7/21-25 and then back to LA on 7/27 in a perfect world.
Please continue as always having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos. A GUT SHABOS
We got back from NY Wed evening and enjoyed a quiet relaxed night at home. This morning it was back to CHLA to check Elis blood/platelet counts which we were warned would probably drop significantly over the next month or so. Both were very low and Eli received a blood transfusion. They didn’t give a platelet transfusion as they will let it drop a little more before doing that. BH once Eli was home late this afternoon you can see that he regained some color and strength as a result of the transfusion.
There is nothing on the schedule other then keeping a close eye on Elis counts until we return to NY on 7/15 for scans and then beezrat hashem followed again by MIBG therapy.
Anyone who can donate blood on behalf of Eli should please call Bikur Cholim at 323-852-1900 to coordinate. Tizku lmitzvos
Please as always continue having Elimelech Ben Basya in all your tefilos
We are looking forward to leaving NY on Wed and head back home and try to get back to a little normalcy as a family. Its been a long and draining 11+ days but BH we accomplished what we came here for. Today’s was especially draining as Elis blood and platelet counts have already begun to drop pretty significantly. We had a 10 minute MIBG scan this AM and were about to leave MSKCC when the nurse told us to wait for a few minutes because the DR needed to see Eli. Well that few minutes turned into literally over 3 boring hours of waiting for a 5 minute consult where we were told nothing but per the protocol the DR needed to see Eli.
The good news is that Eli is excited and looking forward to get home and even more so because thru this amazing organization called Corporate Angels they have arranged to fly us home on a private jet to Van Nuys airport. YAY!! Thursday it is back to CHLA for most probably a platelet and or blood transfusions which they think he may need weekly for the next month or so and even also possibly stem cells to keep his blood counts above zero as a result of this MIBG therapy he just got.
Eli got to see all of our immediate family, cousins, uncles, aunts and many friends over this trip and he and we really appreciated every ones going out of their way for us and for making Eli feel special. Once again a huge thank you to our home away from home Ruvy and Rivkeleh and family for the most amazing hospitality. Also to my brother and sister in law in Lakewood. To zaidy and bubby Ribiat in Lakewood and to all our siblings in Lakewood, Monsey and Brooklyn who arranged so much to make sure everyone got to see Eli. It was very special and very much appreciated. IYH looking forward the next time to see everyone only for Simchas.
Please as always continue to have Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
We spent the day in Lakewood and slowly as the day progressed so did Elis strength bli ayin hora. It always takes a few days after leaving the hospital and we weren’t expecting anything different. We stayed at my brothers house with amazing accommodations which we really enjoyed and very much appreciated. Because of Elis radiation status we couldn’t stay together with Bassy and the kids. This evening we made it back to NYC in preparation for Monday AM appointment.
At 11AM Eli will be having a short MIBG scan in MSKCC to check the status of the radiation. It isn’t a full 2 hour scan it is a short 10-20 minute deal. He will have the same IYH done on Tuesday and we look forward to getting the OK to fly home on Wed afternoon.
Please continue having Elimelech Ben Basya in all your tefilos. Also please have Hillel Sholom Shachne ben Rivka in mind especially the next few days and weeks who is in England and is going thru stem cell transplant now.
Early this morning the radiation safety team came and determined that BH Elis radiation levels were low enough that he can be discharged. Soon after that one of 3 scans that needs to be done over 3 days was done. Once back in our room the DR came to see Eli and signed the discharge papers.
Being that Eli was in a room that the nurses and DRs tried for the most part to avoid because of the radiation and being that they couldn’t do regular blood draws to monitor Eli he didn’t receive TPN since being admitted and therefore has lost a few pounds. BH tonight he is back on TPN and hopefully on the road to gaining back much needed weight and strength. He is also a little more weak then we have seen him lately mostly because he literally didn’t and couldn’t get out of bed for 4 days. So the next few days and weeks we IYH have our work cut out for us to once again help Eli regain what he has lost.
Please as always continue to daven for Elimelech Ben Basya. A GUT VOCH
BH Eli is doing ok and the radiation numbers continue to drop and we are looking forward to leaving the hospital the minute they allow us to. The fact that Eli can’t leave his bed area because of the catheter and the lead partitions hasn’t been easy on him or us and we look forward to getting him some much needed fresh air.
We were very lucky that a few very special people took the big shlep to come visit us and it was extremely appreciated by both myself and Eli. The amount of food we got, and more the love and chizuk we got was unreal.
Shabos hee melizuk urefua krova lavo leElimelech Ben Basya bsoch Shaar choley Yisroel. A GUT SHABOS
BH no real news. Just waiting and hoping that the radiation numbers in Eli become less and less and the sooner the better so we can leave the hospital.
Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
At 9AM Eli was wheeled into the OR for a check on his bone marrow and to insert a catheter. At MSKCC they do the bone marrow at 4 different sites 2 in front and 2 in back where as opposed to CHLA they only do 2 in the front. That combined with the catheter had Eli in a lot of pain right after the procedure but BH for the pain killers he fell asleep and woke up a few hours later in a much better mood. At 2:30PM the DRs walked in with the MIBG therapy treatment locked in very secure cases and 20 minutes later it was all done.
Now is just a waiting game and it will take time for the extremely high volumes of radiation to leave Elis body so that he can legally leave the hospital. Late in the day after all was done I knew Eli was feeling a lot better when he asked for a steak and ate most of it. Late this evening I was informed by the hospital that they will enforcing their rule for the 9th floor of no visitors to arrive after 8:30PM.
We now have 6 long weeks to daven that the MIBG therapy results will be good for Elimelech Ben Basya as that’s when they will be able to get a good idea of how he responded to it. If beezrat hashem he responded well then at that point they will repeat this again. They can only do this treatment twice as that’s all a human body can handle.
Bli ayin hora today was completely the opposite of yesterday. We had a very good night sleep and didn’t have to rush to be at MSKCC. We got there for our 1PM appointment suitcases in tow and got checked in and met with a few different DRs and were told the rules and regulations of the MIBG therapy room. Once we got to the room we were told there was anything for Eli to be there for until 11PM. So we went for a 2 hour walk around Manhattan which Eli really enjoyed and then were joined by Bassys parents for dinner which was very nice. We were then visited by the pregnant family members who won’t be able to visit once there treatment is done beezrat hashem on Wednesday.
The schedule for now is that Eli can’t eat or drink as of midnight due to the fact that early in the morning they will have a procedure done to check the bone marrow and to insert a catheter. The reason for the catheter is because it constantly drains all urine and since it will be full of radiation they want it out of his body as quickly as possible and into special lead containers so that no one and nothing gets contaminated. Somewhere between 2-3PM they will IYH do the MIBG therapy and from then it will be 2-4 days until it has subsided to a level that is low enough to discharge us from the hospital. We will more then very likely be spending Shabos at MSKCC and if Eli is very lucky we can leave right after Shabos but if not on Shabos then it won’t be until Monday as the DR that needs to see Eli in order to be discharged doesn’t work on Sunday. No I’m not kidding.
Once discharged we will need to return daily for 3 consecutive days of MIBG scans but BH not the full 2 hour scan just a 20 minute scan to make sure the radiation is where they want it to be. So in a perfect world we can possibly leave NY on Wednesday 6/18.
The room is a private room which for MSKCC isn’t typical and they have a few lead partitions around the bed so that the rays of the radiation effect the people in the room a lot less. I will also will only be able to have very minimal physical contact with Eli to avoid the radiation. I also need to wear something that constantly monitors my radiation levels and if they are to high I to need to leave the room for a period of time. Visitors are ok to come to the room area but not into the room. No pregnant women or children are allowed at all.
This treatment IYH will be a big part of Elimelech Ben Basya refua plan and it falls out on the yartzeit of my fathers father Reb Yakov Ben Boruch whose 12th yartzeit is Wednesday Yud Gimmel Sivan. Please say an extra kapitel or do something bzchus Eli and my Zaideh that all should go with the best possible results.
The morning didn’t get off to a good start. At 6AM Eli woke me that he feels wet so after checking what was going on I noticed that his line completely separated itself from his body and he was mildly bleeding as a result. So off to the ER at MSKCC where after consulting for a few hours with DRs and surgeons they decided he needs a new line. A new line requires general anesthesia and a wait until they had space in the OR. Finally at 12:30 they wheeled Eli in and it was all done less then 20 minutes later. They then sent us downstairs to have an X-Ray done to make sure the line was placed in the correct place which BH it was.
Our 9:30AM appointment obviously didn’t happen with all this going on but they told me the DR would be seeing us and so we waited from 1-4PM only then to be told the DR has an emergency and won’t see us until Tuesday. So for now we are scheduled for 1PM on Tuesday to see the DR and to check the many lab and urine results that were taken today to make sure Elis body is ready for the MIBG treatment. My understanding is that he will have another procedure on Tuesday to check his bone marrow and to put a catheter so that they can continue monitoring Elis urine levels during the MIBG treatment to check the radiation levels in his body. The actual MIBG treatment will take place a day after this is done so if Tuesday goes as planned we will be admitted and then the actual MIBG therapy will take place on Wednesday and then from there 2-4 days later based on the radiation levels is when beezrat hashem he will be able to leave the hospital.
Leaving the hospital isn’t a ticket home his radiation levels will still be to high to fly and they will continue monitoring it for a few days after until we IYH get the all clear to fly back to LA.
The good news is after going back to our 5 STAR accommodations at our cousins house which has become our home away from home and resting after today’s long day Eli decided that its time to eat steak at a nice steak house so that’s where we headed and now BH Eli is back to himself for the most part and we hope he gets a much needed good night sleep.
Please continue having Elimelech Ben Basya in all your tefilos and we are hoping for a much less drama filled day on Tuesday and for the treatment to go ahead as planned and more so whenever it does take place to do what we hope for and to give Eli what he deserves a refua shelayma BKAROV.