Sorry for not updating here recently but there wasn’t much to update. Eli has been BAH under the circumstances been doing ok. Aside from 3X a week making sure all his labs are ok and getting transfusions when necessary BH Eli hasn’t been inpatient. We did make our fare share of ER visits for various different reason over YT but for the most part all went easy and quick. ‎

Chol Hamoed Eli got out a few times and did a little bit what other kids his age were doing like going to amusement parks and spending time with his cousins and family. ‎Eli didn’t get to shul much as he feels more comfortable in a relaxed chair or in bed but he did make it for a few minutes on Simchas Torah both at night and day. 
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We spent a very long day on Friday in the hospital starting with a CT scan on Eli’s lungs to check on a lesion that was seen in the last CT and make sure it didn’t get worse. They ruled it out as anything cancer related but did diagnose it as ‎fungal pneumonia. Eli has been on medication for that already since they were being extra careful to cover Eli for everything from the past hospitalization. They may also put Eli on home IV for that but they haven’t decides and obviously aren’t overly concerned about this development. 

Next they drew labs to make sure all was ok which showed that Eli needed a blood transfusion and BH he got one right then. That was followed by a echocardiogram in preparation for next round of chemo which they will have to repeat prior to each round of the chemo Eli is currently taking. And lastly that was followed by a DR appt where BH Eli was cleared to begin chemo once again. 

This all brings us current to today where Eli is currently in CHLA getting chemo. It’s a 3 day course done in the outpatient part of the hospital. Today will be a long round of chemo followed IYH on Thurs and Fri by a shorter round. Monday once again they will do stem cell transplant in hopes of helping Eli’s platelets grow on their own. Many transfusions are expected to be needed as a side effect of this chemo. 
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As always please continue having Elimelech Ben Basya and cholim in your tefilos.

BH thru a lot of mazal we are happy to be home as of 2PM today and beezrat hashem we will stay home until the next scheduled appointment. 

Wishing everyone a gmar chasima tova.  

We spent Shabos in ICU at CHLA and for hardly a minute thanks to a lot of amazing people we were barely ever alone for a minute. Many people took the long trek and it was very much appreciated. Friday night Eli’s blood pressure dropped even further and they had to add a second BP IV to stabilize it. The good news started early afternoon when they started weaning Eli off of it and by the time Shabos was over‎ Eli was completely off both BP IVs. The fever which also spiked very high overnight hasn’t come back and beezrat hashem will stay that way. ‎
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‎As expected based on the high fever and low blood pressure the cultures came back positive for infection so they know what type it is and have stopped 3 of the 4 antibiotics Eli was on. We hope to be moved from the ICU to a regular room IYH Sunday which is a lot better as we can get Eli walking around hopefully and also for some fresh air which he loves. We will most probably have to be inpatient for a little while until Eli’s blood counts start to go up as he remains neutropenic due to the chemo he got just over a week ago. 
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‎Please as always continue to have Elimelech Ben Basya and all cholim in your tefilos. 
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Forgot one thing Eli had the cutest girl who is here on scheduled treatment Menucha Rochel Bas Gila ‎Elka (4 years old) come with the biggest smile and her mother from the 4th floor down to the 3rd floor special to visit Eli was really special and nice. Please always have her to in all your tefilos. A GUT VOCH

Eli woke us at 5‎AM and said he felt hot and he was very hot just over 104 to be exact. We got to the ER right away and they immediately had him on many different antibiotics because of how he felt, looked and how high the temperature was. Soon after he started with blood pressure problems so they put Eli right into the ICU and BH have since gotten that under control. The fever comes and goes but for the most part is gone hopefully. The blood pressure is ok to but is being controlled by IV so until that is on his own Eli will remain in the ICU. 
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Because of Eli’s low blood counts which most are at zero we will have to wait until he no longer neutropenic in order to be allowed to go home. It will be a few days at best. IYH they will figure out from the blood cultures what the issue is ‎and put him on the right antibiotic and hopefully be allowed to finish that off at home when the right time comes. 
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Please as always continue to have Elimelech Ben Basya and all other cholim in your tefilos. A GUT SHABOS

Eli had a long day at CHLA starting at 10AM with a GI for TPN appt where the scale showed the extreme loss of weight in the last 2 weeks. After that it was onto the infusion center where shockingly all looked decent until the rest of the lab work came back. Eli didn’t need blood BH which is the longest transfusion but he did need platelets and a potassium transfusion. ‎ By the time it was all said done we left at 5PM. 

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After getting home Eli decided he wanted to get out a lot tonight which is a good thing which shows his mood and strength are coming back. We went for local walks and then to the mall to walk around and then late in the evening to get Ice Cream and eat pizza and BH Eli was in a much better mood. 
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IYH this evening we will restart Eli on TPN to help gain some much needed weight back. Eli will need to have all his labs checked daily until they find the right regiment of TPN that works best. 
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Thank you to the large amount of people from literally around the world that called to offer blood for Eli. Unfortunately blood for Eli must be donated at CHLA so only people local can help. I also left out his type of blood which is A+ but anyone with A-, O+, O- can donate. Please coordinate with Bikur Cholim and not just show up. Tizku lmitzvos
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Please as always continue having Elimelech Ben Basya in all your tefilos. ‎

Sunday afternoon Eli once again had an uncontrollable nose bleed which landed us at  the ER at CHLA where BH they were understanding and helped us get platelets as quick as possible and sent us on our way getting home a few minutes before RH. At the seudah Sunday night Eli was very much part of it and felt for the most part pretty good. BAH since Shabos Eli is off of pain meds but remains frail and weak. 

Monday morning we heard shofar at home and were on our way to CHLA for stem cell transplant. All went as scheduled and once there they realized Eli was very low on blood and he got a transfusion as well. By the time all was done we were home at about 4PM. Monday night and Tuesday morning Eli insisted on being at shul which we allowed for a few minutes and made sure no one touched him as his counts are all pretty much at zero making him very neutropenic. 
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WED morning is back at CHLA first for a appt with the nutrition dept to IYH get Eli back on TPN asap for his extreme weight loss and then to the Infusion center for probable transfusions. Because of the many times Eli has been low lately on blood and being that for the forseeable future Eli will need more blood transfusions anyone that is available and can donate is asked to please call Bikur Cholim 323-852-1900 and schedule with them. Thanks so much to anyone that can volunteer for this.  
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Looking forward to a new year full of only good news for Elimelech Ben Basya and all cholim. ‎
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On Wed Eli began a different type of chemo then he has been getting for the last many months. It’s a stronger type but also outpatient and is a 3 day course instead of the normal 5 day course. BAH it seems to have helped relieve partially the extreme pain Eli was in before starting. Because of the pain Eli is getting a nice dosage of pain meds which keeps him pretty tired. We hope to slowly wean Eli off or at least lower the dosage so that he ‎will be less sleepy. 

Today Eli as he had needed a few times lately is low on blood and platelets so he’s getting both of those today to hopefully help boost his strength and lessen the chance of a bleed. We are trying to boost all of Eli’s counts and as a result on Monday RH we will be back at CHLA for a full day to get stem cells. Many people consider stem cell transplant a new birthday and we are hoping a new birthday with a new year together will bring only bracha and gezunt for Eli. 

Please as always have Elimelech Ben Basya in your tefilos. A GUT SHABOS

Eli had an OK day today. We were at CHLA to check his labs to get the clearance for chemo and BH all the numbers were ok aside from platelets so Eli got a platelet transfusion. On WED we will be back at CHLA for a echocardiogram followed by the start of the next round of chemo. This chemo is expected to take 3-4 hours daily for 3 days followed by lab draws to make sure all is in check. ‎

On Monday we had over a guy that Eli has been wanting to meet since he was diagnosed and got very into playing different games. He is a “gamer” from Mississippi 20 years old and happened to be in LA and we were able to track him down and he so kindly came to the house with his friends for an hour and brought a huge smile to Eli. Thank you Cobi!!‎
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Please as always have Elimelech Ben Basya and all cholim in your tefilos

We got home late Friday afternoon from the scans, transfusions and DR appt and Eli was feeling pretty decent and was actually at the Shabos table when he spiked a high fever so off to the ER at CHLA where on its own it went back to normal only to come back a few hours later so they decided to admit us. They drew labs, cultures and put IV antibiotics and a platelet transfusion and then decided BH late Shabos afternoon that since the fever had subsided for 12 hours and bli ayin Hora cultures were still negative to allow us to go home!!
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Eli is at home resting and taking walks around the block but is pretty tired from the many different medications they have him on. We are hoping to be able to stay home and wait until chemo starts beezrat hashem mid week.  
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Please as always continue having Elimelech Ben Basya in your tefilos. A GUT VOCH‎

We were at CHLA at 9AM for MIBG/CT scan and by the time that was over we headed for transfusions followed by a DR appt for the scan results. Unfortunately we have been down this road before but the scans are far from good. There has been a lot of spreading but BH nothing in any vital organs. 

As a result‎ we will be taking drastic attempts at anything and everything we can do to continue this fight. IYH this week (which means a very short break from last chemo) Eli will begin a different intense type of chemo as a 3 day cycle. We will hope that will be more aggressive then the cancer and help ahead try to get ahead. Because of the fact that the disease is aggressive and not allowing for Elis blood or platelet counts to rise Eli will need possibly daily transfusions. 

We have been down this road before and will continue dealing with it as we have until now with pure dedication and nothing less then the best for Eli. As I have asked before I will always ask don’t get all touchy with the huge, kisses, shoulder rubs and what not that people think is a help. No one in the right mond in this situation wants to be nebached and I dare you to try it here. We are adults dealing with a sick child and will move the world to get Eli the care he needs. 

Sorry for the upsetting news but as always we have the “never give up attitude” and asking for everyone to continue daven for Elimelech Ben Basya bsoch shaar choley yisroel. 

I will as always update this site as often as I have an update and whatever is written here is the truth, most current and only information we are offering. 

A GUT SHABOS