We just landed back in LA from a unforgettable amazing trip to Orlando FL. We left Sat night and landed back WED night after 4 days of non stop fun and action. This was all arranged by a organization called Ohr Meir (which has a website and a instagram page @ohrmeir). They annually take children fighting cancer from across America to Orlando on a all expense paid trip. They have an amazing medical staff, amazing counselors most of them Eli knew from Camp Simcha along with amazing food. This is all arranged by the Friedman family in memory of their son Meir who fought 7 hard years and was niftar in 1994. The happiness they bring which is clearly written on every one of the kids faces is a sight you won’t see anywhere. The caring counselors and staff combined with the entire Friedman family makes this trip not possible to duplicate. 
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Generally this is only for kids but Eli’s physical situation and need for medical attention I had to join to physically help him along the way. Eli enjoyed Sea World, Universal Studios, Disney Magic Kingdom, a shopping spree at Toys R Us and the list goes on. Ari Dembitzer, Nurse Brocha, Dr Steinhartz, Hachusen Yakov Jeidel and of course Eli’s most caring counselor Eliyahu Katz along with the entire staff made Eli enjoy this trip and all we can say is THANK YOU THANK YOU. 
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BAH Eli has been feeling ok and Thursday morning it’s back to CHLA for a procedure to put in a picc line as a added IV site so that for the next round of treatment they won’t have to scare Eli with the IV pricks. This is all in preparation to begin the next round of chemo/immunotherapy together again begining IYH on Sunday or Monday depending when a bed becomes available. It will go the entire week until Friday/Shabos. BH this time they are starting Eli prior to this painful treatment on a few different pain meds to hopefully make it a lot easier beezrat hashem. 
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Once this treatment round is over we will then schedule scans to see what this treatment did for Eli and once again decide from there the best approach to further treatment. Other then that for the most part Eli has been relatively quiet and as always when there is no post it’s because no news is good news. 
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Another child from the UK whose parents we have been in contact with and who did very well during treatment unfortunately has relapsed and we are davening that his parents are given clear direction on the best treatment for ‎Hillel Sholom Shachneh Ben Rivka and that he should be zoche to a refua shelayma bkarov. 
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These young children are also fighting and having them in mind would be appreciated and IYH will be a zchus
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Menucha Rochel Bas Gila Elka‎
Golda Bas Miriam‎ ‎
Gittel Bas Shoshana Rochel
Yonasan Refoel Ben Baila
Avrohom Ben Leah
Malka Braindel Bas Shayna Shifra
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And of course Elimelech Ben Basya bsoch shaar choley yisroel AMEN  
Tizku lmitzvos

A brutal 5+ days of treatment is finally over. This week consisted of 2 different chemos every day and that was followed by Immunotherapy which is extremely painful and it runs in a perfect world for 10 hours but we finally found a level that Eli was able to handle somewhat which takes about 16 hours. He got this treatment 4 days this week so a total of over 60 hours of torture. To top all this off with every hour of treatment they need to check vital signs and drive you more crazy. ‎Eli went thru 2 separate Operating room procedures as the first one didn’t work and they could place the new line. On Wed morning they succeeded and put in the 2nd line.  ‎
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Also this month the hospital started using a bar code system so every time a new IV or oral medication is given which this week was 15+ times every day they need to undo Eli’s blanket and find the bracelet and scan it. I sent an email to every person in CHLA to demand they find a solution to end this even though it is for the patients safety as an alarm would go off if the wrong medicine is by mistake trying to be given. It can be attached to the wall or the bed post or add a longer bracelet so they don’t have to disturb him so often. 
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BH we are now home and hopefully have a few weeks while we pray that CV Eli doesn’t get a fever which is a possibility from the chemo and let Eli get some much needed rest. We beezrat hashem will repeat this treatment in a few weeks. 
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Please continue as always having Elimelech Ben Basya in all your tefilos. A GUT SHABOS ‎

Eli checked into CHLA on Sunday to begin the chemo/immunotherapy treatment. This morning when they checked Eli’s labs BH all numbers were ok but they wanted them on a higher level so he received blood, platelets and pottasium transfusions. Since Eli is still on antibiotics for last week’s infection and it can’t be mixed in the same line as the immunotherapy they needed to add a IV line. However none of his veins were holding so Eli is now‎ in the operating room so they can put in a Pick line so that beezrat hashem he won’t need to be poked again and get the treatment rolling. 

We are scheduled to be in CHLA until Friday and are praying that this treatment will be a success. Please have Elimelech Ben Basya in all your tefilos.

With many miracles Eli arrived home at 6:30 this evening and is BAH doing great. We are happy to IYH get a few days break before we head back early next week for 5 inpatient days of scheduled treatment. 

Elimelech Ben Basya bsoch lrefua shelayma bsoch shhar choley yisroel   ‎

Thank you to the many people who did a lot of davening and different zchusim these ‎last scary few days on Eli’s behalf. On Sunday afternoon and evening Eli’s situation was scary to say the least with the amount of medication and machinery that was going into him and with all that not getting it under control. Finally at about 1:00AM they had Eli’s heart rate and blood pressure controlled by IV and it wasn’t getting worse. Over the course of the next few hours BAH there was a huge quick turn for the better and the oxygen mask came off. That was followed by lowering all day the many different blood pressure IV and fluids they were pumping non stop into Eli. 
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By the time 7:00PM Monday came all the life support, oxygen, blood pressure IV, heart rate issues were completely normal running without any help and Eli was literally eating steak!!! They were able to feel comfortable taking off the extra sites they added for IV which made Eli a lot more physically comfortable. During the night they again had to add the blood pressure IV for a few short hours but BH since then he continues to hold his own. 
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They are continuing to monitor Eli in the ICU while treating his infection which as of yesterday’s cultures showed they were attacked and are now negative. Beezrat hashem this will continue and Eli will beezrat hashem either be discharged home or to a regular room for further observation. 
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Please always have Elimelech Ben Basya in your tefilos and know that there is no way we would have a good report like today without your help. ‎

As of 6:00PM yesterday they added aside from Eli’s main port 3 other IV sites to be able to give the endless amounts of IV Eli needed. His heart rate was extremely high and no matter how many liters of fluid they gave him it wouldn’t come down. His blood pressure was doing the opposite now matter how much they went up on the IV it would continue to fall. BAH as of 1:00AM it has stabilized and they have since began to reduce all the IV. 

Eli is being treated for septic shock as well as for a infection which they have not pin pointed quite yet what type of infection as the cultures just started coming back positive. Eli is BH talking and not in any pain BAH. We hope all of what has been going on for the last 5 hours continues in the right direction only quicker. 
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Thank you to everyone that davened extra last night and please continue to do so. Elimelech Ben Basya lrefua shelayma.  

Unfortunately the last few hours for Eli haven’t been good to put it mildly. He woke up very late this afternoon and didn’t seem right and we immediately went to the ER. Upon arrival Eli’s heart rate was very high and most of all else was ok but that has since changed. Eli’s heart rate is still very high and his blood pressure is very low and therefore Eli is in the ICU and on many different IVs to try to help get the situation under control. ‎

We hope to have a better report sooner then later but for right now a little extra prayer wouldn’t hurt. 

Please have Elimelech Ben Basya in your tefilos.

Eli since the last scan has physically grown causing the MIBG scan to take that much longer to get every inch of his body scanned. We got the results today and no complaints at all. The scans show that the disease is possibly less but definitely not more. The fungal pneumonia is gone.  The good news is the urine levels which a few months back were literally 50+ times elevated with disease ‎to now being less then 10 times elevated. Also Eli was getting platelet transfusions sometimes 3 times a day to control bleeding and BAH he hasn’t needed any and on the contrary his platelets are higher then they have been in many months. 

This news is of course very welcomed and beezrat hashem the start of continuous good news. As soon as the scheduling is done Eli will start a new advanced treatment that is new to the neuroblastoma world. They will IYH do chemo and at the same time immunotherapy which is a double wame in hopes we can work on getting Eli to remission. It will be done inpatient for 5 days and can be done once a month. We hope and daven that this will be the solution in erraticating the disease. 
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Please as always have Elimelech Ben Basya and all cholim in your tefilos. A GUT SHABOS‎
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BAH the last few days have been going very well with Eli getting out a lot and in a great mood. We hope this will be the permanent trend. On Tues Eli had a MIBG injection in preparation for WED morning MIBG and CT scan. We are hoping to learn from these scans what treatment will be most suitable for Eli. We hope to have Beezrat Hashem the good results‎ before Shabos. 

Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos‎

The last 2 weeks for the most park have been ok for Eli as he feels most of the time ok. He finished the chemo round and BAH didn’t have much side effects which seems to show that the first round of this type of chemo he wasn’t having side effects so much from the chemo as he was from the disease progressing. We hope that it has and continues to do what we need it to do which is stop the spreading and start curing. The levels on Eli’s urine test seem to show that it did something. 
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Aside from feeling weak Eli has BH been in a good and happy mood for the most part. He insisted on going right after finishing one of the days of chemo to visit his new cousin a few hours after the baby boy was born in a different hospital. He made it to the Sholom Zachor also with help. Unfortunately a few days after that he came down with a fever and landed in ICU for 2 days but all turned out to be negative and Eli as he promised made it to the Bris!!  
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On Friday Eli has labs and a DR appt to decide on when the next treatment will begin. On WED IYH we will redo the MIBG/CT scans to see what we have accomplished and if we should continue the current treatment or try something different. 
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Please as always continue having Elimelech Ben Basya and all cholim in your tefilos ‎