We were at CHLA at 9AM today to start drinking contrast for the CT scan but Eli wasn’t up to drinking it and it’s horrible taste. At 10 they wheeled him to the scan room and he was overly exhausted and slept the whole time which is great because usually he is very agitated being literally tied down and not able to move. The scan was finally done at 12 and we were on our way home.
Finally at 4PM the call came from the DR with unofficial results (they need to wait for Radiologist to read and write) but from what they can see its considered BAH VERY GOOD NEWS. Meaning we were expecting based on how he looks and has been feeling that things may of gotten out of control but BH the scans showed either a drop better then last scan or the same but definitely not worse which is amazing great news.
They did see something in his colon like possibly a virus which they are going to send in a stool sample to see what it is and that maybe causing the excess vomiting and diahrea. We look forward IYH to a stress free Shabos and thank everyone for their support and tefilos. We still have a long way to go but we are far from complaining.
Please as always continue having Elimelech Ben Basya in all your tefilos. A GUT SHABOS
Eli has had better weeks. He simply wasn’t himself and his stomach didn’t agree with anything he ate this week as it all came out each time he tried eating. Eli’s weight is now once again a serious issue and it’s possible if this doesn’t get better over the weekend that he will need to get back on TPN as he has no ounces he can possibly lose anymore.
Eli got a blood transfusion on Tuesday which gave him more energy but that didn’t last very long as Wed he was pretty weak again. BH todays labs were ok and his counts are stable. Today we were in CHLA for a few minutes to get the MIBG injection. Friday morning IYH we will be back at CHLA for a CT and MIBG scan. These scans on Friday are extremely important as it will give us a better idea of what’s going on and what treatments Eli should get next. It’s a long 2 hour scan that Eli needs to not move so that they can get clear pictures. We hope to have results on Friday but not for sure.
Please keep Elimelech Ben Basya and all cholim in your tefilos.
Eli did ok over Shabos and YT but wasn’t quite himself as he was nauseous and pretty weak a good portion of the time which is all somewhat expected right after chemo. On Monday afternoon Eli really wasn’t himself so we took him to the ER at CHLA but BH after being evaluated they didn’t feel he needed to be admitted but IYH on Tuesday we will be back to get some necessary transfusions.
Please continue having Elimelech Ben Basya in all your tefilos.
Eli is currently in middle of the final chemo of this round which until today went very well. For some reason their schedule was off and it’s taking hours to get nothing done. It’s taking on average about 2 hours from start to finish but today after 2 hours they have finally just started.
Anyway for the most part Eli has been feeling well and doing ok aside from some slight weight loss this week. In the beginning of the week they drew Eli’s platelets were very low which was expected to go even lower with chemo but BH they were up a decent amount by weeks end so Eli didn’t need any transfusions.
For the last many months we haven’t done any other treatments or scans and the reason was because they were happy with the chemo he was getting which was the same type each round. That chemo won’t be effective forever and most children become immune to it anywhere between 6-18 months. So in preparation for that we are trying to be proactive and have something else lined up. Therefore at the end of next week they will be IYH doing MIBG and CT scans and possibly followed by a bone marrow check. Based on those results they can decide what treatment best fits as the next step.
Wishing everyone a GUT SHABOS GUT YOM TOV and asking everyone to have Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos.
We spent Thursday in CHLA checking Eli’s blood and for a scheduled DR appt. BH Eli did not need blood or platelets but once again his potassium was low so he got another potassium transfusion. They are unsure as to why lately it’s been low but it’s not concerning to the DR. After the infusion we went to see the DR who cleared Eli for chemo starting Monday-Friday as an outpatient chemo.
Eli held on Sunday a small sale which we all enjoyed selling cotton candy and soda, thanks to all who were able to make it. Other then that we are hoping for a uneventful chemo week with beezrat hashem little to no side effects. They will be keeping an eye on Eli’s blood and if any transfusions are needed he will get them.
Please as always continue having Elimelech Ben Basya and all cholim in your tefilos.
For the most part Eli has been feeling pretty well lately and all has been status quo. Last week Eli needed a platelet transfusion as it was extremely low. Once he got it he looked and felt a lot better. As a family we escaped for the weekend to Palm Springs and it was great to see Eli so happy and being able to enjoy himself like the rest of the kids were. Last week Eli was given a great wetsuit by one of “the uncles”and boy did it come in handy as it kept Eli feeling warm all the time he swam.
Sunday evening Eli wasn’t feeling or looking great and it was most probably because he didn’t sleep well this weekend. When he woke up after the home health nurse came to the house this morning he was still not feeling great we decided to take him directly to the Infusion center and he definitely needed a blood transfusion which BH he’s currently getting with as always direct donor yidisheh blood. In the past Eli has had low pottasium but today was extremely low so after the blood transfusion he will also get a pottasium IV to help boost those numbers as well.
Other then that we will be back IYH in CHLA Thursday for a DR appt as well as possible transfusions again in preparation for another round of chemo scheduled to start again on Monday in a week from today.
Please as always have Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos.
Eli has been doing BH very well since the chemo and has gotten around all Shabos to shul and as always kept everyone laughing all Shabos. This week the home health nurse will check Eli’s labs and if anything is needed we will be in CHLA for transfusions. Other then that it’s time to recuperate.
On a terribly sad note Chaya Mushka Spalter 11 years old the daughter of Rabbi Mendy and Haddasa Spalter was niftar this afternoon after fighting the machla for 3 years. Never have a I felt a piece of me ripped out of me the way I do today. Our children were diagnosed about the same time and we became very close. Chaya fought tooth and nail and won so many times. There was never anything that was able to get in her way. She had more life to her then any other 11 year old. Chaya always had a beautiful smile that was contagious and she also never had a worry in her life. She was always surrounded by her parents, grandparents and family that made it that way and that all was and will be good.
Chaya was the girl everyone wanted to be friends with as she was always the most happening, fun yet caring girl. No matter how weak she was or how much apin she was in she always was ready to go. Just on Chol Hamoed she was biking on the beach. I had the zchus of walking with her on Friday 10 days ago when she was still so full of life. She was texting, laughing yet occasionally you were able to see how much pain she was in doing all that.
This is completely heartbreaking and devastating yet we know Chaya in a few hours will be in Gan Eden as she is accompanied on her final trip to Eretz Yisroel with her parents and family. She will no longer be suffering, in pain yet she will leave us all wondering how and why such a tragedy could happen. Chaya will be a mailitz yosher for her family, klal yisroel and of course all the many sick children who are fighting this terrible machla.
Chayas levaya will take place Sunday night at 8:45 at Yeshivas Ohr Elchonon in Los Angeles and the Aron will depart from LAX-TLV Monday morning and the kevura will be Tuesday afternoon.
Please continue as always davening for Elimelech Ben Basya as well as for Menucha Rochel Bas Gila Elka who is in desperate need of our tefilos bsoch shaar choley yisroel.
The week BAH went by very well so far and Friday will be the last chemo session of this round. Eli had labs drawn today and BH his blood counts are holding pretty well and he doesn’t need any transfusions before the weekend. Monday morning IYH the home health nurse will come and draw labs again and we will see from there.
We look forward once again to helping Eli recuperate from this round and getting back to himself and hopefully aside from possible transfusions and a DR visit there is nothing else in the near future scheduled.
Elimelech Ben Basya lrefua shelayma
I forgot last night to add a new tehilim name
Menucha Rochel Bas Gila Elka.
Bsoch shaar choley yisroel