BH Eli had a very good night sleep finally and woke up pretty late. As soon as he got up the DR came in and said the cultures all remained negative and was discharged from CHLA and home before 11:30AM. We spent the day helping Eli get back to himself and relaxing.
Once again communication with the DRs has been terrible and after finally getting a call this morning from the DR in NY he gave me the go ahead to postpone the next round of MIBG therapy for a month. Late in the afternoon I received a call from the DR in LA explaining that since it is being pushed off Eli will need to undergo a unplanned round of chemo. I made it clear that beezrat hashem that will not happen and I am ready as soon as NY is ready to take us we will be there. So on Thursday we will head back to CHLA to check Elis blood counts and if they are ok hopefully we will travel on Sunday to NY for treatment. In the meantime to try to keep the blood levels where they need to be Eli has been receiving a shot daily which he hates and I hate giving but have no choice.
Please daven that all should stay ok as far as Elimelech Ben Basya blood levels and that IYH we should be able to go to NY asap and come home asap.
Bli ayin hora the cultures all remain negative and as of 9PM Monday night the fever is also gone. Eli BH was in a great mood all day and even had a few bites to eat for lunch.
Let’s hope everything continues going uphill from here and that we can leave CHLA as soon as they allow beezrat hashem.
In the meantime please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
Today started at 4:30AM with a lot of vomiting and non stop diarrhea every few minutes. At 8:30AM Eli felt warm and he was very warm according to the thermometer nearly 103 so we zipped to CHLA where they as always put him on immediately antibiotics. We were in the ER room for about 5 hours before they finally got a bed on the 4th floor but not in a very ideal location. Eli is for now in the BMT unit which is the only place on the floor that had a bed open. Although he doesn’t need to be there since all the other kids there need to be there we need to keep all the rules that come with that unit. Hopefully a bed in the regular floor will open and we will be transferred there so it will be easier to get in and out.
Bli ayin hora so far all the cultures have been negative and beezrat hashem they will stay negative. The problem right now is that even with all the tylenol and IVs and antibiotics and both a blood and platelet transfusion again today his fever is still pretty high.
Obviously for right now we are not going to NY as a result of this and we don’t know when we may go now as we don’t know how long Eli will need to be in patient for. As always we will take one good day at a time and hope the next is even better and beezrat hashem Eli will be able to leave CHLA sooner then later.
As always please keep Elimelech Ben Basya in your tefilos as we daven that this is nothing and that we can continue with the treatments as soon as possible. A GUT CHODESH
Once we got to LA the remainder of the week was spent for the most part relaxing and getting in as much water fun as possible before the 9 days. One day it was at the beach another day swimming etc. Eli really enjoyed every minute of it and felt very good for the most part.
Thursday Eli was at CHLA to see how his blood counts were doing and he needed and got both a platelet and a blood transfusion. The other blood counts which weren’t good to start MIBG therapy last week in NY bli ayin hora were considerably better but not quite at the levels needed. IYH Monday morning we will be back at CHLA to check again and if they are ok we will immediately head to NY.
Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos. A GUT SHABOS
After speaking with the DR today for a while and realizing that realistically Elis blood levels will not be where they need to be for at least a week we decided to head back to LA. The blood levels will be monitored by CHLA who were given the numbers and levels MSKCC wants them to be at in order to begin MIBG therapy. It may take a few days and it may take a few weeks. As soon as they are ok we will immediately head back to NY to have it done beezrat hashem.
In the meantime we will IYH be landing in LA very late Monday night and the next time they will check is on Thursday and we will get results and decide from there.
Please continue having Elimelech Ben Basya in all your tefilos and we look forward to seeing Elis blood numbers get to where they need to be so we can continue treatment.
With the crazy traffic leaving NYC we managed to get to Lakewood just before Shabos BH. Once we got there we were met by my father who surprised us by flying in to spend a special Shabos with my mother who was already in NY at the home of my brother in Lakewood. We had a beautiful relaxed Shabos with Eli for the most part feeling very good.
Sunday morning started with a visit to my Bubby Hellman who was in Lakewood for Shabos and whom hasn’t seen Eli since being diagnosed as we haven’t and will not be telling her of his situation. Being that this is Elis first time in NY and has some hair it was a safe bet that she wouldn’t think anything and BH she didn’t. We then went with my father and received a special brocha from Reb Matisyahu Solomon. Late in the morning we were met by all of the Gradon/Ribiat families from the East Coast some who schlepped very far to spend the afternoon with Eli at my brothers house and we all thoroughly enjoyed and appreciated it. THANK YOU so much to Nechama and Nachum for putting up an amazing Shabos and an amazing weekend we all really enjoyed.
It was then at 3PM that we went to MSKCC to have Eli labs drawn to see if the counts are ok to start the MIBG therapy Tuesday. I don’t know what the DR will decide but the numbers were not where we hoped they would be. We will find out in the morning what the plan is but beezrat hashem things will not get pushed off and if they do hopefully not to long.
Please continue having Elimelech Ben Basya in all your tefilos.
The day at MSKCC was supposed to begin with a 10AM scan but as we were pulling up we were called and told that its running late and won’t start until 1PM. So we headed up to have his lab work done and to get the results to see what he needs. So it was the same as yesterday and he needed platelets which took a while to get but once it came it only took a few minutes to transfuse. While we were waiting for the transfusion the DR gave us the good news that they can do the MIBG therapy again.
Eli once again needed a dreaded shot to help boost his blood numbers. Finally at 2PM we headed down for the final of 3 scans. By the time all was done it was after 4PM and we finally left the hospital.
The schedule for next week is pending because one of the blood numbers has to be at a certain level and it isn’t exactly there yet so they will have us come in on Sunday to check his labs so that they can make sure that when they want to order the MIBG therapy on Monday for Tuesday that his levels are ok. But if he is beezrat hashem cleared when he is supposed to we will check in to the hospital Monday evening and then Tuesday morning they will put in the catheter and sometime Tuesday afternoon they will give the MIBG therapy. If this all takes place when it should and the week goes IYH as planned then we should be discharged from MSKCC on Friday and be able to fly home Sunday.
Thank you to everyone that had and constantly has Elimelech Ben Basya in their tefilos and please keep him there that all should only continue only and always in the right direction. A GUT SHABOS
After waiting for the last 6 weeks to do this scan which felt like the clock stopped we BH just finally got the GOOD RESULTS from the DR. The MIBG therapy definitely did enough that we got the ok to IYH repeat it next week. This is what we had hoped for and is best case scenario. This is the best news we have had in a while and we hope all continues only heading in this direction with continuous good news for Eli and all cholim.
We got to MSKCC a few minutes late but BH it didn’t affect our wait time. They took Eli right in for the MIBG scan which took a solid 2 hours. By the end of the scan rightfully so Eli was frustrated but pulled thru as he always does. We got the results of yesterdays blood counts which showed that Eli is neutropenic and therefore needed a dreaded shot to help boost his blood levels. It isn’t fun telling Eli he needs a shot and it took a while to calm him down once that was done. We were then given a the bucket for a 6 hour urine test and headed back to our cousins.
After resting and relaxing we headed back to MSKCC as we needed to drop off the urine test today. Unlucky for us this clown that calls himself president was in NYC and caused a traffic nightmare. So our plans to visit Bubby in Boro Park had to be cancelled until Sunday. We went back to our cousins place and Eli once again had a great time with the cousins. Very few people know hachnasas orchim the way our cousins do and it has made coming to NY as easy as possible.
Friday morning there is one more short scan and then we will head upstairs where Eli will IYH be getting a platelet transfusion as well as possibly also a blood transfusion but that’s hasn’t been decided yet. We will then meet the DR to get the results of the scans beezrat hahsem. Hopefully the day will go smooth and we will be out at a normal hour so we can make it to Lakewood for Shabos.
We have been davening for good results of the MIBG therapy and hopefully we will get exactly that on Friday or whenever we meet the DR. Please continue to have Elimelech Ben Basya in all your tefilos
I hate giving myself or Eli an Ayin Hora but today was something special. Eli woke up late because he went to sleep so late and we headed right to MSKCC where finally we were lucky and everything started and ended on time with no surprises. We got there on time by 1PM and we were out after having labs done, MIBG injections and a 30 minutes scan by 3:30. We were then met by a close friend and his family at the Central Park Zoo which Eli loved and acted like a big brother to their child.
Next it was back to Elis favorite steak house in NYC where he ate more then he’s eaten in a long while and kept all of us entertained. We then finally got back to out 5+ Star accommodations where Eli had a blast playing with our cousins. All in all I can just hope and pray that aside from the hospital part we have every day like today with the energy and humor that Eli showed today. HALEVAY VAYTER.
Thursday morning at 10AM is the big MIBG scan which will take about 2 hours. I’m not sure if there will be other appointments like a blood or platelet transfusion as well but we will find that out when we get there. IYH we will get the good results on Friday and will then learn the next phase of treatment which beezrat hashem will be MIBG therapy starting again with in patient check in on Monday.
Elimelech Ben Basya lrefua shelayma bsoch shaar choley yisroel.