We were headed to CHLA at 7:30 this morning for bone marrow procedure. That procedure was quick and Eli woke up very soon after and we headed down at 10:45 after the procedure for chemo. BH all went as scheduled and we were done and home from chemo at about 1PM. 
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Late this afternoon we got word from the DR that the initial part of the procedure which for the last few times was positive today was negative. This is definitely good news ahead of the main results which should come by the end of the week. Also Eli noticeably BAH gained a few pounds since starting TPN. So all in all we are not complaining and hoping this is the start of only good news. ‎

Please continue having Elimelech Ben Basya in all your tefilos.

BH we had a very nice and enjoyable Shabos where Eli was up to getting out for all tefilos and hanging around for the entire seuda. TPN has been running for 12 hours a night and we hope to see the results on the scale on Monday. 

IYH Monday early morning we will be back in CHLA for a scan we haven’t done in many many months the bone marrow check where Eli gets general anesthesia and they will see hopefully some improvement in how much disease is in the marrow. It’s a very short procedure but takes a few days for results. That will be followed by outpatient chemo which will be happening daily all week. 

Please daven that Elimelech Ben Basya should get good results from this scan and that the chemo this week should have no negative side effects.

As of Thursday night Eli is back on TPN for 12 hours a night to hopefully jump start him gaining weight. We hope it’s a temporary thing but will IYH keep at it until he has some flesh on his skinny bones. ‎On Friday we were in CHLA for a scheduled DR appt where BH Eli was cleared to begin chemo on Monday. 

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

Eli had a complete good turn around over Shabos. Once home from the scan Friday afternoon he was more in the mood of eating and the main news was that he was able to hold it down and BAH that continues. Friday night he sat all the meal and made it to a few Shalom Zachors as well as going to shul over Shabos. Sunday was a nice outing at a Chai Lifeline picnic/BBQ. 
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Monday morning was back at CHLA for what was meant to be a lab check as well as a platelet transfusion. For some reason the lab was backed up and instead of the normal 40-60 minutes wait for results it took 2.5 hours to find out that BH his blood and platelets were fine but once again his potasium this time was dangerously low. So after getting the potasium transfusion which runs over a 2 hour IV they sent us down to get an X-Ray to make sure there’s nothing obvious in Eli’s belly causing it. Then it was back to the Infusion center to recheck the potasium levels which definitely did rise but isn’t where they want it to be. So instead of what should of been a 2-3 hour visit was a 7+ hour ordeal.  IYH Tuesday morning we will be back in CHLA for another pottasium transfusion and also to see if the X-Ray or stool test yield any clue as to why Eli’s pottasium keep dropping. 
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Other then that the good news was that in his good mood and holding down food even though we have a very long road to be at a weight that would make us happy Eli did gain nearly a pound over the weekend and beezrat hashem that will continue in the right direction. We do have a GI appointment Wed early morning to set up TPN in case they do feel he needs that but we are hoping that won’t be the case. 
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Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos. ‎
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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. 
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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. 
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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. 
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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. 
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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. 
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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. 
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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. 

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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. 

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Please as always have Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos.   ‎