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.

There is a very long story behind this weeks hashgacha pratis and it goes like this.

Eli was meant to have MIBG therapy done a few weeks ago but due to his low counts at the time we were in NY they couldn’t do it so we decided to go back to LA until his counts were ready. Over the last few weeks his counts got a lot better aside from one number which couldn’t get to the place they needed it to be per protocol and therefore were unable to begin MIBG therapy.

On Friday 8/1 we were told by the DR that he had sent in a request to the FDA for approval to do the MIBG therapy without being exactly at protocol levels and were told he would have a response within 2 business days. Monday and Tuesday came and went and no response. After finally speaking to the DR Wednesday which by then he still hadn’t heard back he told me that the request wasn’t actually sent until Monday. He then told me that he is definitely going to get a yes and he will receive that confirmation on Thursday. I woke up early Thursday morning hoping he had received the approval but he didn’t yet.

There were many DRs, askanim, politicians that were called to try to make the FDA approve this quick yet not one responded or seemed to care. We couldn’t get a call back or a response from an email from any of them.

After looking up flights Wednesday for Thursday and saw that there were no business class seats all day to NY I put a call at 8AM Thursday to Corporate Angel network which told me that if I can get to a small airport an hour away in less then 90 minutes there will be a private jet waiting there for us. I woke up Eli sped there and boarded a beautiful brand new plane to NY. Upon landing I turned on my phone and was expecting to have a voice mail from the DR who promised he would let me know the good news by the time I landed.

No voice mail no email and no one at MSKCC has any idea what I’m talking about and its after hours. Angry, upset and frustrated are all under statements as the DR told me on the small chance that he doesn’t get the approval we won’t be able to start until Monday which means I’m in NY for 3 days for no reason.

Hoping to speak to the DR and give him a real piece of my mind Friday morning and let him know how I feel about the horrible communication and let my frustration out on him.

We spent Thursday night at Elis favorite steak house in NYC with our host and favorite cousin Ruvy. Eli enjoyed the steak but couldn’t hold it down. We headed back to the house in NYC in no mood of much but were then visited by a few friends which was really nice. The night finally ended after 1AM when Eli finally fell asleep.

At 6:30AM Friday I wake up to see that I have many missed calls from Bassy. I quickly call her back to hear she’s in the hospital in LA in labor!! I don’t know what to think or what to do. After a few minutes of thought I wake up an exhausted Eli and asked him if he thinks we should stay in NY or head back to LA without much thought he said I want to see the new baby. I woke a friend in Lakewood at 6:45AM and in his sleep booked us 2 business class seats from JFK-LAX. I quickly davened and got Eli dressed and luckily got a cab that got us to JFK at 8:05 for our 8:30AM flight. BH we made it.

Bassy was in the hospital with a girl that hasn’t left our side since the minute Eli was diagnosed and has never said no to anything we ever ask as a favor. At home there was another very good friend who we woke at 3AM LA time to be with the kids for the night.

Things seemed to be progressing as the plane started moving. As soon as we were in the air and the WIFI started working I got the email that the baby was about to arrive. Between trying to skype and everything else I wasn’t able to properly connect but was update second by second and about one hour into the flight got the GREAT NEWS that BH we had a healthy baby boy.

Upon landing in LA I had many voice mails from the DRs in NY saying that they finally got the FDA approval but needed Eli to come in for a few blood test but won’t be able to start MIBG until Tuesday which means we would be released the earliest late Friday afternoon 8/15 (which now is beezrat hashem the day of our babies bris).

Now had the FDA approval come instead of being on the plane at 830AM Eli would of been in the OR having a catheter attached and his bone marrow checked. Instead we were shown true hashgacha and we were able to be back for the simcha and be at our babies shalom zachor.

There are a ton of people we need to thank for the help that went into the beautiful Shalom Zachor we had and they know who they are and words aren’t suffice for what they mean to us. BH Bassy is resting in the hospital until IYH Sunday morning.

The update for Eli is that the DR gave us the ok to return to NY on 8/17 and check in late Sunday night for hydration and followed by Monday morning having his bone marrow checked and attaching a catheter to allow the radiation to leave his body into a lead container.

Once again there will be many restrictions as Eli will be a radioactive material until it leaves his body but IYH he will be cleared to leave back to LA Thursday 8/21.

On Monday 8/11 Eli will be in CHLA for labs and probably both a platelet and blood transfusion followed by what we hope is a week at home getting to be with his new baby brother.

Please as always continue to have Elimelech Ben Basya in all your tefilos and we should be zoche to the brochos that come with a newborn boy נולד בן נתרפה כל המשפחה. A GUT VOCH

MAZAL TOV. BH this morning we were Zoche to a healthy baby boy. IYH there will be a shalom Zachor tonight at our home. We should all only continue to share in each other simchas and Besuros tovos

The last few days have been quiet. This morning we were at CHLA to check out Elis labs to see if the number we are waiting for happened to fall but that as expected didn’t happen. Eli did need a platelet transfusion again which BH he got.

We are waiting for FDA approval which beezrat hashem should happen sooner then later hopefully. As of Monday the DR in NY had not heard back yet.

Elimelech Ben Basya lrefua shelayma bsoch shaar choley yisroel. HAVE AN EASY FAST