BH we got home Monday evening from a amazing weekend in Miami and the kids were back in school Tuesday morning. Eli relaxed at home the next few days and Thursday we were back at CHLA for a scheduled DR appt as well as a scheduled once a month medication by inhaler. Once there Elis blood counts were very low so he needed and BH got both a blood and platelet transfusion and it seems to of given him a physical boost.
Elis Zaidy and Bubby from Lakewood are here for Shabos for the mid winter break and we look forward to spending family time over the weekend with them.
There is nothing other then waiting for Elis counts to IYH climb on the schedule. They will draw labs a few times a week and see how things are going and based on the results see what and when Elis is eligible for.
Please continue having Elimelech Ben Basya and all cholim in your tefilos. A GUT SHABOS
Thursday morning we headed to LAX for a exciting flight to Miami which was a smooth and good flight. After the kids woke up late we were met and surprised by a close group of friends from Lakewood who came in special to spend the weekend with us.
Eli and our other kids along with the many other children that were there were the center of attention and they loved every second of it. From dancing on chairs and just shmoozing with the amazing counselors and volunteers was beautiful to see them all having such an enjoyable Shabos.
Sunday morning after only a few minutes of sleep we had to wake Eli to head to the bus for the start of the 6AM marathon. At 4:30AM the bus was rolling to the start line and unlike last year it was extremely cold which was good for the runners but to cold for Eli. We wrapped him well and they finished the half marathon 13.1 miles in under 1:50. Thank you so much to the many people that made this event happen for us and Eli for doing all the many arrangements and logistics and BH they all worked perfect and it was a truly memorable weekend. Thanks to Yossi Cohn for once again pushing Eli and giving him a most memorable run.
Sunday evening we took the 30 minute drive to Joe Dimaggio Hospital in Hollywood Fl to make sure Eli was safe to fly. Unfortunately once again Elis platelets were extremely low and is getting a transfusion here so that it will be somewhat safe to fly. We spent many hours in the hospital but being they don’t know Eli or have his chart that was expected.
IYH Monday morning it will be time to say good bye and get back to reality in LA. There is nothing under then appointments and transfusions on the schedule for now as they wait until Elis blood levels allow for further treatments.
Please as always continue having Elimelech Ben Basya in all your tefilos.
We spent a very long beezrat hashem productive day at CHLA. We were there at 9AM and started hydration for 4 hours before Eli was finally ready and approved for stem cell transplant. The actual giving of the stem cells takes a few short minutes and its done by IV thru his line. Prior to the transplant Eli received a platelet transfusion. The hope is that this will help jump start Elis immune system and platelet count so that his body will be ready for the next phase of treatment in a somewhat timely manner.
Late this evening Eli received a guest singer Benny Friedman who helped lift Elis mood up after the very long day at the hospital. It wasn’t until after 5PM that we finally got home and by 6:45 Benny was entertaining Eli.
Another very special surprise came in the mail today from people Eli never knew or met. A class in Staten Island NY sent Eli a full box of prizes and a beautiful poster board full of well wishes. There are some very truly special people out there that really know how to hit the spot and this was truly appreciated and special. THANK YOU
IYH Thursday midday we are off to Miami and we are looking forward to a relaxed weekend that we can all use. There will be a staff of nurses and DRs there and we hope not to need them.
Please as always keep Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
We had a really nice Shabos with Eli entertaining once again until very late at night. Eli has changed his schedule and sleeps from about midnight until whenever he wakes up and if he’s happy with it then so are we. On Sunday Rabbi Weiner and his son visited Eli at home and as always Eli really appreciated and enjoyed it.
BAH we received very good news today that after this mornings lab draws both the blood and platelets were in very decent standing and no transfusions are needed however Eli remains neutropenic but that is expected. We hope to recheck the blood counts on Wed morning and if anything is needed to get it done right away so that Beezrat Hashem we will be cleared to go to Miami on Thursday.
Please continue as always having Elimelech Ben Basya bsoch shaar choley yisroel.
BAH the week went by pretty well. Aside from being weak and neutropenic Eli felt very good and was in a good mood. On Monday they drew Elis labs and he needed blood which BH he got “yidishe” blood as always arranged by Bikur Cholim. Once again they drew Elis labs on Thursday and today on Friday Eli is receiving both blood and platelets.
This is all very expected for right after chemo and we hope that sooner then later Elis blood counts will climb again and will recover as quickly as possible so that we can continue to move ahead with further needed treatments.
IYH if all goes well this coming Thursday thru Monday we beezrat hashem plan on being in Miami for Chai Lifeline marathon. Once again there is a large group of people that have raised a significant amount of money to help support Chai Lifeline continue to help.
Please as always continue having Elimelech Ben Basya in all your tefilos. Unfortunately once again there is an additional name to add to our list Gittel Bas Shoshana Rochel bsoch shaar choley yisroel. A GUT SHABOS
Eli woke up very late today after enjoying a late night Avrohom Fried concert. We were able to get Eli up on the stage and he enjoyed all the attention and BH felt strong enough to be dancing. Thanks to all involved in getting us there and getting Eli involved in the dancing and up on the stage it was a very special event.
This morning the home health nurse came to draw Elis labs and not surprising all his counts have significantly dropped as a result of the chemo and Tuesday is back at the infusion center for transfusions. The DR did give us heads up that its likely that Eli will need multiple transfusions the next few weeks.
Elimelech Ben Basya bsoch shaar choley yisroel lrefua shelayma.
Friday was the final day of this past round of chemo. We needed to get an early start to make sure we are home for shabos and BH that all worked out. Eli actually BAH felt a lot better on Friday then he did on Thursday.
Friday night Eli felt up to getting out so he joined me as we went to a few Shalom Zachors. Shabos day Eli entertained our guests and he did the same for our Friday night guests.
Motzei shabos Eli felt up to joining us at a beautiful RCCS fund raiser which was done bzchus lrefua shelayma for Eli. A very large turnout for a most choshuv organization that has helped us and so many families. Tizku lmitzvos to all involved.
There is nothing on the schedule as of now other then lab draws and probably transfusions this coming week. The DR is predicting that Eli will need many blood and platelet transfusions in the near future.
Please as always continue having Elimelech Ben Basya in all your tefilos. A GUT VOCH
Eli woke up not feeling as good as he has lately and in some pain and nauseous. BH a pain pill and nausea medication helped a lot in making Eli comfortable. We were back in CHLA early afternoon for day 3 of this 4 day chemo cycle.
During chemo the DR called that he wouldn’t be able to come down to give us the bone marrow results in person rather he did so over the phone. The results were not what we wished for at all. Elis marrow has a large amount of disease in it which is what was predicted and is the reason its taken Eli along time to recover from this past round. Although based on the last few scans knowing Eli had further relapsed hearing it over again wasn’t fun.
With all this in mind we will continue doing whats best for Eli and we will continue to push ahead and go ahead with any and all treatments available that Eli is eligible for.
Please as always continue having Elimelech Ben Basya in all your tefilos.
Today once again went very smooth and we were in and out in about 3.5 hours.
Other then that there isn’t much to update as Eli BH continues to feel ok. We hope to meet the DR during chemo on Thursday for the results of Mondays bone marrow testing.
Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
Elis regular oncologist is on vacation and the DR we are meeting to get results of yesterdays bone marrow procedure only sees patients on Thursday so we will have to wait until then for the results.
Today Eli once again started a 4 day round of chemo and since its relatively short they are allowing us to come at noon instead of rushing Eli out of the house early in the morning to get it done. Today took about 3.5 hours which is about as quick as it can possibly done in.
Please continue to daven that there should be no side effects and it should only have its intended effect. As always please continue having Elimelech Ben Basya in all your tefilos. Here are names of children that are also suffering from the same or similar machlas and are in need of our tefilos
Chaya Mushka Bas Haddasa Shayna
Golda Bas Miriam
Yonasan Rafael Ben Baila
Avrohom Ben Leah
Malka Braindel Bas Shaina Shifra
Hillel Sholom Shachneh Ben Rivka