We are looking forward to Shabos after a unexpected pretty eventful week at home. Eli was in CHLA Wed morning for a GI appointment which he didn’t get to see the DR for. They “punished” us for coming at 8:55 instead of 8:40 by telling us we are going to be the last appt of the morning which would be at 12:30. Even after explaining them that the reason we were “late” was because Eli had a vomiting and diarrhea episode that morning they didn’t pretend to care so we said bye and left.
Thursday morning Eli was back at CHLA for transfusions where he got both blood and platelets and during then was seen by the GI DR for the literally 45 SECOND appt. After that Eli headed to his regular DR for a appt. It was a very hard and long day at CHLA from 9:30AM -6:15PM but Eli together with his Bubbys help did it like a champ.
This coming week on Tuesday IYH they will be giving Eli back some more of his own stem cells to hopefully boost his blood levels after the MIBG therapy. It is done outpatient and it will probably followed by transfusions once again. There isn’t a clear treatment plan after that other then at some point later in the month of SEP they plan on doing scans to decide on what further treatments should be scheduled.
Please continue as always having Elimelech Ben Basya in all your tefilos. A GUT SHABOS
Over Shabos Eli did a lot of resting and relaxing after a very tough week of traveling, being stuck in bed, more traveling and then of course surgery. By Shabos afternoon Eli was already insisting on going to shul for shalosh seudos which he made it for and enjoyed. After almost a week of not being on TPN and losing a good few pounds as a result BH Eli is back on it now and hopefully gaining much needed weight.
There isn’t much on the agenda for the next while other then to recuperate and have labs drawn and when needed transfusions given. The next step is another scan in a few weeks to see what the MIBG therapy did and from there the DRs will decide what treatment to continue with but probably another few rounds of chemo.
On Monday 8/25 will be Elis 9th english birthday (Chuf Av was his hebrew birthday) and all we can hope for is 111 more years of nachas and beezrat hashem good health. Elis smiles, humor and strength that have gotten us thru some difficult times should be smiles of only besuros tovos.
Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
We got to CHLA at 7AM and they already had the platelets and all set up and waiting so we avoided the waiting process for that. After taking the medication that he needs before a transfusion and then getting the transfusion it was 9:30 at which point they did all the pre op stuff and then we did what we do best and waited and waited. Finally at 12 they wheeled Eli into the OR and BH the good news came just before 1PM that BH all went well.
Eli is very weak and tired and sore from the surgery but they felt he was up to leaving almost immediately after the surgery and he was home by 2:15 and is resting. Beezrat hashem this will be the last issue we ever have with his line.
Shabos hee melizuk urefua krova lavo. Elimelech Ben Basya lrefua shelayma. A GUT SHABOS.
We got home this morning after a most comfortable flight before 11AM and relaxed for a few hours. Eli realized that since he has no line it would be a great opportunity to go swimming without having to be wrapped in shrink wrap like he always has to be to protect his line from the water. He was by far the happiest kid in the world to feel the freedom even though its going to be short lived.
They didn’t do the surgery today because surgery takes place in the morning and we weren’t back early enough. At 7AM on Friday we will IYH head to CHLA first to get platelets so that Elis blood will be ok before they do surgery. They have changed the way they do things and the hope is that the surgery will be done in the AM hours and that we will be discharged soon after the roughly one hour procedure.
Please as always have Elimelech Ben Basya in all your tefilos.
To put words into what went on today would be impossible. The heartless and careless DRs showed their real true colors today. At 8AM the nurse came in and noticed that once again Elis line had detached from his body. Being he was still considered radioactive they couldn’t do much until the levels would come down. The DRs instead of doing what they should of done months ago and definitely today which would be to take Eli to the OR and put in a new central line instead wasted the day as they did many months now. Then they took it to the next level and said sorry we won’t be able to “squeeze” Eli into the OR for the short procedure on Thursday either.
I completely lost myself and gave every DR a piece of my mind and my feelings of how heartless they really are. I gained absolutely zero but they now know that the next time I’m there I’m not the guy they want on the receiving end of their carelessness. Instead of making it happen today like they should of they said to go to LA and deal with it there.
On the other hand the good news is that the radiation levels came down quicker then initially anticipated and at about 2PM they removed the catheter. It was a tremendous relief for Eli as having the catheter is extremely uncomfortable. After having a IV line put in so they can give platelets which he desperately needed we were finally discharged at 7PM. After getting into a cozy bed at our cousins house it only took a few minutes for Eli to realize that he’s in the mood of a steak so once again that’s where we headed and enjoyed the first few bites Eli has had all week and then was surprised by Elis uncle and aunt who came in from Lakewood.
Eli was once again visited by Rabbi and Mrs Jacobs who really lifted Elis mood once again. A few friends of mine came by later in the day as well and all were very much appreciated.
I didn’t thank properly last time a very good friend of mine who I woke early last Friday while Bassy was in labor and booked us in his sleep 2 beautiful business class seats which made the trip so much less stressful. Once again this time another friend went the extra mile and booked our tickets home in first class so that Eli can properly rest and be able to move around. We thank you so much for your extreme generosity and help.
We are taking the first flight out Thursday morning and we are hoping we can head directly to CHLA for surgery to put in a new central line. It will mean general anesthesia and probably an overnight stay. We don’t have it yet confirmed but hopeful it can happen on Thursday as we need it to be able to give TPN which he hasn’t had in 5 days!!
In any case its been a long eventful trip and beezrat hashem all will be uphill from here. Please continue having Elimelech Ben Basya in all your tefilos.
We had BH a quiet and uneventful day which is the way we like it. There was and is nothing on the schedule other then to just wait for the all clear from radiation safety. There is no way to know when exactly that will happen but we hope for sooner then later.
We had quite an evening with a lot of friends that came to visit and cheer Eli up. We had someone who doesn’t even know Eli shlep special from Lakewood to be here with Eli for a few special minutes and made Eli so happy by asking Eli to autograph a picture he had of Eli. Then we had some good friend and a cousin who ALWAYS come to visit us when we are in NY and we really appreciate the many hours of chilling, catching up and shmoozing we get to do together.
Elimelech Ben Basya Lrefua shelayma bsoch shaar choley yisroel amen.
Last night didn’t end with the update I posted. After finally getting to the room and falling asleep both me and Eli were woken up a few minutes later by the nurse telling us that the platelet count came back not high enough and that he now also needed blood. So for the next 3+ hours every 20 minutes they came in to take Elis blood pressure and temperature. It was just a long miserable night.
BH they let us sleep late and instead of taking Eli to the OR at 9AM we went closer to 12. They also brought something that resembles a bed which made it a lot easier to be able to rest and sleep today. Once the procedure was done and Eli rested for a little bit he was in a much better mood which bli ayin hora lasted all day.
Just before going into the OR Eli had special surprise visitors Rabbi Jacobs and his wife who were in NY and came special to NYC to visit Eli. This afternoon we also had special visitors that we really enjoyed.
The waiting game has begun and now they will check daily to see the radiation levels as to when Eli is safe and legal to leave the hospital and head back home.
Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
Today was one of the longer days we have had in a long time. We were meant to fly on a private jet but that got cancelled and thanks to 2 very special people one of whom doesn’t even know us arranged our flight to NY on American Airlines. We landed at 8PM and were at MSKCC before 9PM. As always everything takes forever there and their policies make no sense but we need to run with it. There is a bed waiting for Eli all day but they insisted that first he go to urgent care and have his labs checked. Of course his platelets weren’t where they wanted it to be so he needed a transfusion at the transfusion center. Then they added that we need to wait an hour after the transfusion was complete to check again to make sure his platelets were where they need them to be.
It was finally after 1:00 AM 4+ hours after getting to the hospital that we got to our room and got a unpleasant surprise. The room has no parent bed just a reclining chair that doesn’t recline which is what I’ll be calling my bed for the next few days (it should be my worst problem). The room on the pediatric floor where they can do the MIBG therapy is already taken so we are on the adult floor 5th floor where they have the same type of room to facilitate the radiation levels.
Please daven that Elimelech Ben Basya should have a simple easy and pain free next few days and most of all that the treatment should do all that its meant to do and more as we continue on the road to IYH a refua shelayma bkarov.
Friday morning I finally got the call I have been waiting over a month for which was the OK from the DRs in NY that Eli is clear for MIBG therapy starting with IYH Sunday night check in to MSKCC. The plan is the same as the first round which is that Eli will be on hydration all of Sunday night and then Monday morning they will insert a catheter followed by the MIBG therapy sometime on Monday. As soon as the radiation levels subside they will beezrat hashem let us leave NY back to LA.
Eli had a very nice Shabos with a lot of our family that flew in special for the simcha. He was in a very good mood and felt pretty good also.
The bris for our son was Friday morning in our home with a lot of friends and family. The babies name is Yakov after both my fathers father and my father in laws father. No sooner then the bris was over did the phone call come from NY with the approval and we hope that all the brochos that come with a new born son are all mekuyom.
Please continue having Elimelech Ben Basya in all your tefilos especially with a pretty rough planned week or so ahead of us. A GUT VOCH
Eli was extremely weak over the weekend and was at CHLA Monday morning and the answers were very clear as his blood and platelets were both extremely low. He received both blood and transfusions and most of the day was spent in the transfusion center. Tuesday BH Eli already felt a lot stronger and insisted he goes to Go Kart World which somehow in the last month he grew about an inch and is now tall enough to do all of the cars alone. He had a blast and it was a treat to see him so happy enjoying himself.
Today 8/13 we got a call from CHLA who was called by MSKCC that they forgot to let them know on Monday that they needed to check his labs right after receiving his transfusions so that all his counts can show they are ok per protocol. Not surprising when we went back today they weren’t good enough so they need to redo just the platelets so that it can all be good for the protocol levels.
We hope and daven to finally have the MIBG treatment starting Sunday night 8/17 at MSKCC where the plan is to be in patient from Sunday night until the radiation levels go low enough to be safe to allow Eli to leave and return to LA.
Please continue having Elimelech Ben Basya in all your tefilos.
BABY and BRIS info——————–
BH Bassy and the baby came home Sunday morning from the hospital and are doing very well bli ayin hora.
Just an FYI the Bris and seudah IYH will be Friday morning 8/15/14 at our home 8:30AM Sharp. Please note there WILL NOT be a minyan Shachris at this location. May we all be zoche to share in each others simchas and besuros tovos.