Not sure when today will end but to put it mildly its been a VERY VERY long one. It started in middle of the night when the nurse he had who for whatever reason felt it necessary to wake both me and Eli literally every 30-60 minutes for stupidity. Then BH at 7AM her shift was over and the new nurse came in and let Eli sleep in a little. That was followed by very good news that Elis blood counts shot up a lot overnight a lot more then they had expected. As the day progressed and after a scheduled echocardiogram the DRs realized there was no reason for Eli to be there and they let us know Eli would be going home today.

Finally at 5:30PM after getting another blood transfusion and his IV antibiotics they said Eli can go as long as I agreed to continue giving Eli IV at home 3X a day for a few days to make sure that there was/is no infection and if CV there was/is one its being treated for which I happily agreed to. After finally getting home and right away having to clean up a few messes Eli got into bed only to wake up screaming in pain at 10:30PM that his central line was hurting him. We tried calming him and it wasn’t going to happen and his DR ordered us to unhook his TPN and head back to the ER ASAP. So as I write now we are in the ER and praying that it is a small blockage in his line that can be easily unclogged and that Beezrat hashem we will be able to go home shortly as the alternative isn’t a good one.

Eli needs a break from this building and a good night sleep and he deserves one to. Hopefully that will happen I guess not tonight but IYH tmrw night. Its been a rough couple days and weeks. Because Elis counts went as high as they went today the DR also cleared Eli to go on Sunday to NY which we are hoping won’t be postponed.

Please daven for Elimelech Ben Basya that tonight should be a small and easy fix and that we won’t need to be here long or admitted.

For the most part Eli was in a very good and happy mood today BH and when he’s happy we all are. The day started very early today when Eli woke with an out of control nose bleed that wouldn’t clot so they gave him some much needed platelets which BH did the trick. Eli’s blood counts are still at zero and unless that drastically changes in the next day or so we will have to postpone the NY trip until he is physically up to it. Late this afternoon Eli had a MRI which the DR in NY ordered to be done here and IYH we will have the good results in a day or so.

Not much else is doing other hen keeping busy here at CHLA and hoping and helping Eli builds his blood counts so that he can be discharged. Bli Aydin hora the cultures remain negative and they have stopped most of he antibiotics.

We look forward to only continued besuros tovos for Elimelech Ben Basya and the never ending growing list of “Soch Shar choley yisroel”

BH the cultures are still negative but because of yesterday’s scare Eli is still on all the antibiotics to make sure that if CV there is one that they are ahead of the game and already treating it. With each antibiotic there is usually pre meds which makes Eli tired and drowsy. They hope with each passing day or even sooner to wean him off of the antibiotics.

The plan now is to have Eli stay in CHLA until he is out of the neutropenic stage and that he gets back his blood counts so that his body can IYH fend for itself. There is no telling as to when that will happen but beezrat Hashem sooner then later so we can go home and pretend to have some normalcy. Eli has used a lot of donated blood and platelets and possibly will need more in the future and once again anyone that is healthy and has time should please donate on his behalf. Bikur Cholim had been arranging it and it’s literally been a lifesaver please call them to schedule 323-852-1900. Tizku lmitzvos

Elimelech Ben Basya lrefua shelayma bsoch shaar choley Yisroel

Friday night was a very eventful one and not the way we hoped for it to be. At 2AM Eli woke up and felt very hot and not surprisingly given his very low blood counts he has 102.5 fever. So off to CHLA to the ER a few minutes later. As the night progressed in the ER Eli’s heart rate began rising very high and his blood pressure went dangerously low. The DR decided Eli needed to be in ICU but they had no beds available there so the ICU team came to the ER and treated Eli there. He received for the low BP dopemein and 4 different antibiotics for the fever and what they felt wad a bad infection. They also gave Eli more blood and platelets and thanks once again and always to Bikur Cholim for always having direct donor blood/platelets available for Eli.

BH as the day would go they eventually after a few tense hours finally stabilized the heart rate and BP. Once they observed that without the BP meds Eli was able to hold his own they moved us from a tiny cramped ER room to a regular room on the oncology floor at 6PM. We had a few special visitors who took the extremely long walk to come and visit us late Shabos afternoon and that always is appreciated.

Eli will remain in CHLA for a few days until his blood counts rise out of the low neutropenic levels that they are at now. The good news which beezrat Hashem will stay that way is that the cultures for infection have all been negative so far. IYH this will not effect the planned trip to NY on Sunday 5/18 for further treatment.

Please as always keep Elimelech Ben Basya bsoch shaar choley Yisroel n all your tefilos that this should just be another small bump in the road along the way to reaching the ultimate refua shelayma goal BKAROV. A GUT VOCH

The last few days haven’t been the best for Eli as he has been neutropenic and in turn extremely weak. For the Most part all he has been doing was resting in a quiet bed and enjoying very long walks. Today Eli was in CHLA for both a blood and platelet transfusion and BH we were home by 4:30. The plan for now is to get Eli’s blood counts out of the dangerously low levels they are currently at so that he can start looking and feeling a lot better then he does right now.

We finally have a small update from NY as to the next phase in the treatment which as of now calls for us to be in NY at MSKCC on Monday 5/19 and 5/20 for scans that the DR specifically wants done there. At MSKCC the DR isn’t sure he agrees with the plan of treatment that the DRs at CHLA plan and he may have other possible treatments once he reviews these scans. Once the scans are reviewed he will decide also as to when the treatments he has in mind will begin. We will therefore only plan on being in NY for that short period of scans and then come back IYH at the time they plan on doing treatment.

Please continue as always having Elimelech Ben Basya in your tefilos that all should go well and that Eli should get back to his full strength BKAROV.

On a side note a very young not even 2 year old girl the granddaughter of our Rov was diagnosed with a similar machla that is also requiring her to undergo chemo therapy and we wish her, her parents, her choshuveh grandparents and all their family to have the kochos to help her fight and win this battle. Her name is Golda Bas Miriam. Besuros tovos.

A GUT SHABOS

All I can say is bli ayin hora and halevay vayter.

Elimelech Ben Basya lrefua shelayma bsoch shaar choley Yisroel

Today was a rather long day but IYH successful. It started with a 9AM check in at CHLA and then with a few check ups, blood and urine tests etc. and then finally with stem cell transplant at 11:45AM which only actually takes a few minutes but needs to be followed by 4 hours of hydration. When that was done Eli needed a blood transfusion and that takes a few hours so by the time we left CHLA it was after 6PM. Eli rightfully so came home drained and exhausted but BH we got done what will beezrat Hashem jump start the blood counts.

Every few days the nurse will come to our house to draw blood to see if or what Eli may need as we help him regain his strength. The next scheduled visit isnt exactly scheduled but it is a MRI and a MIBG scan hopefully in about 10 days or 2 weeks. Based on those results the DR will decide when and if we should go to NY for further treatment.

Please continue as always having Elimelech Ben Basya in all your tefilos.

Eli is extremely weak and very nauseous which while we have seen this many times after each of the many rounds of chemo it doesn’t get easier seeing it. He has no strength and isn’t happy and just wants to feel normal. To top it off I had to give him the dreaded shot which he always gets the day after a chemo session is done. Hopefully Eli will wake up feeling a lot better and stronger

On Monday morning Eli has to be back at CHLA for a Clinic appointment to receive more of his own stem cells which the goal for that beezrat Hashem is to help boost his extremely low blood counts. That in turn should give him more strength and coloring back do that he can start feling normal again. We as always are taking one day at a time and hoping that from today and on things only get easier and better for Eli.

Eli had a choshuveh visitor Reb Malkiel Kotler from Lakewood who came to visit Eli bedside and although Eli wasn’t up to talking or getting up he knew, heard and was very happy with the Brocha the RY gave him.

Please continue to daven for Elimelech Ben Basya that Mondays stem cell transplant should go well and do what it’s meant to do and every day from here on should only get easier and better.

Friday night in CHLA we had a very nice and relaxed Seuda with “Uncle” Yoely at which we shmoozed, ate and sang and laughed all together. At 11:30AM today Eli was finally discharged after a long week in CHLA. He was very happy to finally be home and back in his bed and not be bothered every few minutes by the nurses and DRs. As always the last day or 2 of chemo and the few days after that are pretty rough in terms of how he feels and the nausea that comes with it and today was no exception. We did manage to get out finally late Shabos afternoon for a long walk so that Eli can have much needed fresh air.

The plan is to slowly help Eli regain his strength and his blood counts which are at very low levels due to the very high dose chemo he got this week. The DR hopes that on Monday they will infuse some of Elis stem cells and that will give the blood counts a much needed boost. Other then that we hope that there will be no other side effects and that every day IYH will see improvement.

Elimelech Ben Basya is extremely weak right now and can really use some extra tefilos and we hope that’s what this week and this chodesh bring. A GUT VOCH

Eli had another ok day. Tonight is the final chemo session of this round.

Shabos Hee Melizuk Urefua Krovaa Lavo. Elimelech Ben Basya Lrefua shelayama. A GUT SHABOS from CHLA