Not sure where to begin but BH all of the scheduled in patient treatments are finally done. To say that this year + has been a challenge would be a under statement but as a resut of this year our lives have been permanently changed for the better.
There is a endless amount of people that we owe hakaras hatov for helping us get thru this year but today we started that and its going to take a very long time to get to each person but we will try. We thanked all the nurses, doctors, front desk people, valet people in CHLA with a good bye lunch/dinner/snack/drink party this afternoon and evening and we thanked them for being true shlichim. 98% of the staff has been extremely nice and helpful and we felt it was the least we can do to show our appreciation.
Late this evening all of the nurses on Elis floor came into the room with a very special gift from CHLA to Eli. A big banner saying “way to go Eli” with a large lego set of an airplane. They all wished Eli well and we in turn wished to never see them again in this building.
BH aside from one of the days this week it was a relatively easy week as far as pain goes and as usual the champ KING ELI didn’t complain even when it wasn’t easy. The endless amount of pain, fear and sleepless nights that have been part of Elis life we can start to IYH put behind us. Eli is a real trooper and has as a result gotten smarter, matured and learned more this year then any child should ever grow in a year.
I don’t know the exact count of nights that we spent in patient but its well over 100 and our main tefila is that Elimelech Ben Basya should be zoche to spend for every night he spent in the hospital 1 year out of the hospital and hopefully that number is 112 nights so that will correspond for Eli to have that many more gezunt years to 120. AMEN
Looking forward to beezrat hashem never looking back. Final treatment of the final round is Thursday and we hope to have an easy day like bli ayin hora we had today. Eli had a few visitors today which he and we always appreciate and BH the IV ran exactly the amount of 10 hours that it was scheduled for.
Elimelech Ben Basya lrefua shelayma bkarov
Please daven that Elimelech Ben Basya should get another day like today on Wednsday.
BH day 1 of 4 is finally over. While it wasn’t terrible it could of been better. They needed to pause the IV a few times because of some strong side effects but once they gave some extra medication it seemed to do the trick. Instead of the IV finishing at about 8PM it finished closer to 11PM. The good news is that after last nights blood transfusion which of course was direct-donor for Eli arranged always by Bikur Cholim Eli looks and feels a lot stronger.
The side effects today were all very typical side effects and we were told that with every passing round they are easier to happen. Eli experienced nausea, vomiting, hives and trouble breathing but BH each one after the machine was paused and extra medication given all went away pretty quickly. Of course the good news is that when Eli wasnt having these side effects which was most of the time he was in a very good and happy mood.
I forgot to note that on Sunday Elis morah and assistant from his class came to the house and brought Eli many prizes and presents and a special present with a picture of each of his classmates he really enjoyed and appreciated it and we look forward to beezrat hashem as soon as he is up to it to having Eli back in his classroom.
Please as always daven that the final 3 days of the treatment plan for Elimelech Ben Basya goes pain and side effect free.
We had a very nice and quiet shabos for the most part. Eli has been a little more weak then we have seen him lately but we are hoping that he just a little short on blood and hopefully a blood transfusion will do the trick. He got out quite a bit over Shabos but was easily agitated and was a lot more emotional then he’s been. Friday night also started the dreaded shots which I hate to give and he obviously hates to get but was very brave and did the first 2 already.
Sunday night IYH is check in for round 7 of immunotherapy which is the last in patient treatment on the long list of treatments Eli has gotten. The plan is to be in CHLA from Sunday night to Friday morning. The immunotherapy can be very painful but we are hoping that Eli will be lucky and will be zoche to a pain free week.
My understanding from the DR is that after this round they will hopefully begin weaning Eli of the TPN which he has been on every night for many months now and hopefully he will be able to handle and hold down solid foods. He also has one more round of the strong accutane which are pills he takes twice a day for 2 weeks after this in patient week is done. This will be followed by another full round of scans and IYH when that is done the official treatments will all be done.
Being in NY for one day this week and. seeing many old friends and rabeim and hearing from each of them what they have done and continue to do bzchus Elimelech Ben Basya and along with many local friends and many people around the world has and continues to be very heart warming and beezrat hashem we look forward to finishing all the treatments and reaching the goal of a refua shelayama.
I was not home today as I’m in NY for a simcha but from speaking to Bassy and Eli BH it seems that Elimelech Ben Basya had a good day and we look forward to a relaxed Shabos before its time to check in on Sunday night for what beezrat hashem will be the last in patient check in “biz a hundred un tzvuntseg”. A GUT SHABOS
BH alll continues to go well for Elimelech Ben Basya and we daven that it should stay that way always.
Another BH very good day for Eli. After going to his scheduled DR appt and getting the go ahead to IYH start the final round of immunotherapy Sunday night Eli spent the day relaxing and playing at home. Later in the evening after taking a nice walk Eli felt up to riding his new bike that he got from Chai Lifeline on Chanukah and he did pretty well for riding for the first time in months.
All we can say is halevay vayter and please continue to daven for Elimelech Ben Basya that all should continue to stay well.
Bli ayin hora another very good day and slowly but surely Eli seems to be getting somewhat back to the strength he was before the flu.
Tuesday Eli will see his DR and beezrat Hashem get the go ahead to check in on Sunday night for round 7 of 7 of immunotherapy.
We daven that all should continue to go as planned for Elimelech Ben Basya.
BH the good news continues and will beezrat Hashem always be good and only good. Eli got out quite a bit the last few days and week and bli ayin hora continues to show strong daily improvements.
On Tuesday Eli has a DR appt to make sure he is ready to begin the final round of immunotherapy which is scheduled for 1/12. Other then that we are looking to gain momentum and strength and help Eli get as strong physically, and emotionally before he goes inpatient hopefully for the last time in his life to 120.
Elimelech Ben Basya lrefuah shelayma BKAROV