We spent the day in Lakewood and slowly as the day progressed so did Elis strength bli ayin hora. It always takes a few days after leaving the hospital and we weren’t expecting anything different. We stayed at my brothers house with amazing accommodations which we really enjoyed and very much appreciated. Because of Elis radiation status we couldn’t stay together with Bassy and the kids. This evening we made it back to NYC in preparation for Monday AM appointment.

At 11AM Eli will be having a short MIBG scan in MSKCC to check the status of the radiation. It isn’t a full 2 hour scan it is a short 10-20 minute deal. He will have the same IYH done on Tuesday and we look forward to getting the OK to fly home on Wed afternoon.

Please continue having Elimelech Ben Basya in all your tefilos. Also please have Hillel Sholom Shachne ben Rivka in mind especially the next few days and weeks who is in England and is going thru stem cell transplant now.

Early this morning the radiation safety team came and determined that BH Elis radiation levels were low enough that he can be discharged. Soon after that one of 3 scans that needs to be done over 3 days was done. Once back in our room the DR came to see Eli and signed the discharge papers.

Being that Eli was in a room that the nurses and DRs tried for the most part to avoid because of the radiation and being that they couldn’t do regular blood draws to monitor Eli he didn’t receive TPN since being admitted and therefore has lost a few pounds. BH tonight he is back on TPN and hopefully on the road to gaining back much needed weight and strength. He is also a little more weak then we have seen him lately mostly because he literally didn’t and couldn’t get out of bed for 4 days. So the next few days and weeks we IYH have our work cut out for us to once again help Eli regain what he has lost.

Please as always continue to daven for Elimelech Ben Basya. A GUT VOCH

BH Eli is doing ok and the radiation numbers continue to drop and we are looking forward to leaving the hospital the minute they allow us to. The fact that Eli can’t leave his bed area because of the catheter and the lead partitions hasn’t been easy on him or us and we look forward to getting him some much needed fresh air.

We were very lucky that a few very special people took the big shlep to come visit us and it was extremely appreciated by both myself and Eli. The amount of food we got, and more the love and chizuk we got was unreal.

Shabos hee melizuk urefua krova lavo leElimelech Ben Basya bsoch Shaar choley Yisroel. A GUT SHABOS

BH no real news. Just waiting and hoping that the radiation numbers in Eli become less and less and the sooner the better so we can leave the hospital.

Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.

At 9AM Eli was wheeled into the OR for a check on his bone marrow and to insert a catheter. At MSKCC they do the bone marrow at 4 different sites 2 in front and 2 in back where as opposed to CHLA they only do 2 in the front. That combined with the catheter had Eli in a lot of pain right after the procedure but BH for the pain killers he fell asleep and woke up a few hours later in a much better mood. At 2:30PM the DRs walked in with the MIBG therapy treatment locked in very secure cases and 20 minutes later it was all done.

Now is just a waiting game and it will take time for the extremely high volumes of radiation to leave Elis body so that he can legally leave the hospital. Late in the day after all was done I knew Eli was feeling a lot better when he asked for a steak and ate most of it. Late this evening I was informed by the hospital that they will enforcing their rule for the 9th floor of no visitors to arrive after 8:30PM.

We now have 6 long weeks to daven that the MIBG therapy results will be good for Elimelech Ben Basya as that’s when they will be able to get a good idea of how he responded to it. If beezrat hashem he responded well then at that point they will repeat this again. They can only do this treatment twice as that’s all a human body can handle.

Bli ayin hora today was completely the opposite of yesterday. We had a very good night sleep and didn’t have to rush to be at MSKCC. We got there for our 1PM appointment suitcases in tow and got checked in and met with a few different DRs and were told the rules and regulations of the MIBG therapy room. Once we got to the room we were told there was anything for Eli to be there for until 11PM. So we went for a 2 hour walk around Manhattan which Eli really enjoyed and then were joined by Bassys parents for dinner which was very nice. We were then visited by the pregnant family members who won’t be able to visit once there treatment is done beezrat hashem on Wednesday.

The schedule for now is that Eli can’t eat or drink as of midnight due to the fact that early in the morning they will have a procedure done to check the bone marrow and to insert a catheter. The reason for the catheter is because it constantly drains all urine and since it will be full of radiation they want it out of his body as quickly as possible and into special lead containers so that no one and nothing gets contaminated. Somewhere between 2-3PM they will IYH do the MIBG therapy and from then it will be 2-4 days until it has subsided to a level that is low enough to discharge us from the hospital. We will more then very likely be spending Shabos at MSKCC and if Eli is very lucky we can leave right after Shabos but if not on Shabos then it won’t be until Monday as the DR that needs to see Eli in order to be discharged doesn’t work on Sunday. No I’m not kidding.

Once discharged we will need to return daily for 3 consecutive days of MIBG scans but BH not the full 2 hour scan just a 20 minute scan to make sure the radiation is where they want it to be. So in a perfect world we can possibly leave NY on Wednesday 6/18.

The room is a private room which for MSKCC isn’t typical and they have a few lead partitions around the bed so that the rays of the radiation effect the people in the room a lot less. I will also will only be able to have very minimal physical contact with Eli to avoid the radiation. I also need to wear something that constantly monitors my radiation levels and if they are to high I to need to leave the room for a period of time. Visitors are ok to come to the room area but not into the room. No pregnant women or children are allowed at all.

This treatment IYH will be a big part of Elimelech Ben Basya refua plan and it falls out on the yartzeit of my fathers father Reb Yakov Ben Boruch whose 12th yartzeit is Wednesday Yud Gimmel Sivan. Please say an extra kapitel or do something bzchus Eli and my Zaideh that all should go with the best possible results.

The morning didn’t get off to a good start. At 6AM Eli woke me that he feels wet so after checking what was going on I noticed that his line completely separated itself from his body and he was mildly bleeding as a result. So off to the ER at MSKCC where after consulting for a few hours with DRs and surgeons they decided he needs a new line. A new line requires general anesthesia and a wait until they had space in the OR. Finally at 12:30 they wheeled Eli in and it was all done less then 20 minutes later. They then sent us downstairs to have an X-Ray done to make sure the line was placed in the correct place which BH it was.

Our 9:30AM appointment obviously didn’t happen with all this going on but they told me the DR would be seeing us and so we waited from 1-4PM only then to be told the DR has an emergency and won’t see us until Tuesday. So for now we are scheduled for 1PM on Tuesday to see the DR and to check the many lab and urine results that were taken today to make sure Elis body is ready for the MIBG treatment. My understanding is that he will have another procedure on Tuesday to check his bone marrow and to put a catheter so that they can continue monitoring Elis urine levels during the MIBG treatment to check the radiation levels in his body. The actual MIBG treatment will take place a day after this is done so if Tuesday goes as planned we will be admitted and then the actual MIBG therapy will take place on Wednesday and then from there 2-4 days later based on the radiation levels is when beezrat hashem he will be able to leave the hospital.

Leaving the hospital isn’t a ticket home his radiation levels will still be to high to fly and they will continue monitoring it for a few days after until we IYH get the all clear to fly back to LA.

The good news is after going back to our 5 STAR accommodations at our cousins house which has become our home away from home and resting after today’s long day Eli decided that its time to eat steak at a nice steak house so that’s where we headed and now BH Eli is back to himself for the most part and we hope he gets a much needed good night sleep.

Please continue having Elimelech Ben Basya in all your tefilos and we are hoping for a much less drama filled day on Tuesday and for the treatment to go ahead as planned and more so whenever it does take place to do what we hope for and to give Eli what he deserves a refua shelayma BKAROV.

Beezrat hashem we will be heading to the airport in the morning for our flight to NY. We don’t know much for sure about exactly when treatment will start or end other then we hope it will start ASAP and that they will let us return to LA as soon as Eli is up to it. This treatment involves extremely high dose of radiation and therefore pregnant women are not allowed around and no one myself included can be with Eli for extended periods of time at once.

Once we are in patient or I know the situation and get a feel for it hopefully soon after that Eli will already be discharged from the hospital. The plan is for the actual treatment to take a few minutes but until the radiation levels in Elis body subsides they can’t let us leave.

On a VERY sad note we are completely torn and devastated to learn that Chana Tova Bas Esther Shoshana was removed from our cholim list today. Although we were not zoche to meet this special neshama being in contact somewhat over the last few months with her parents she has permanently touched us. There is no other place she can possibly be right now other then in a very special place in Gan Eden. A young girl taken from us will beezrat hashem be the last Korban ever and will be a mailitz Yosher for her family, the many other sick children and gantz klal yisroel that never seems to get a break from our tzoros. AD MOSAI!!! May her family have a nechama.

Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos. A GUT VOCH

We got the OK this morning from the DR to travel to NY after the blood tests that were drawn on Thursday came back BH ok. We are on a 11:15AM flight to JFK thanks to Chai Lifeline once again for arranging our travel with only the best accommodations. On Monday Eli has a 930AM Dr appt in MSKCC and I guess we will go from there. It is possible that he won’t be admitted until Tuesday but we won’t know that until we are there.

Bli ayin hora Eli feels very good and we hope it always stays that way. I was also informed today that it is more then likely that we won’t be back in LA as soon after as I hoped but that remains an open topic for the DRs to decide.

Please as always keep Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos during this Shabos and especially the next few days and weeks. This MIBG treatment that he will IYH undergo we hope will bring the refua Eli needs. A GUT SHABOS

Eli started taking the 2 medications on Monday morning and we will find out if it beezrat hashem did what it was intended to do on Friday. Bli ayin hora for the most part Eli has been feeling pretty good and even made it to school a few times in the last few weeks for short periods of time with the help of his rebbi Rabbi Weiner and his class they all really enjoyed.

As of now we plan to take a Sunday AM flight to NY and check in to MSKCC on Monday for anywhere from 3 days and on. In a perfect world we hope to come back to LA 8 days later on Monday. The MIBG treatment is very high radioactive materials and therefore only short periods of visitation at one time is recommended for everyone.

Unfortunately the list of Cholim doesn’t seem to diminish and some of the Cholim now more then ever need our tefilos desperately. The list is long but here are a few names: Chaya Zisa Elka Bas Blumah, Chana Tova Bas Esther Shoshana, Chaya Mushka Bas Hadassa Shayna, Golda Bas Miriam and of course Elimelech Ben Basya bsoch shaar choley yisroel. If everyone can do something bzchus all of these cholim who so desperately need and deserve a refua shelayma bkarov. We should be zoche to see this YT of Shavous celebrated next year in EY AMEN.

A GUT YOM TOV