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
