We had a very relaxed day today mostly at home. We got Eli out for a walk and some errands but other then that he wanted to be home playing some of his favorite games that he won’t have for the next while in CHLA. Eli is prepared and ready for another few days in the hospital and we hope it will go as easy and smooth as possible.
Eli will be on a 96 hour continuous IV of immunotherapy which according to the DR other then possibly fever it shouldn’t cause Eli any pain and we hope he is right. He already has a room assigned and as soon as we can get Eli there in the morning is hopefully the same time they will discharge Eli on Friday.
Please as always keep Elimelech Ben Basya in all your tefilos etc.
We were lucky and for almost all of YT Eli felt for the most part very good and had a little more strength then he has had lately. He go to shul everyday and enjoyed being around people. Simchas Torah he got to hold one of the “tanach” sifrei torah which he really enjoyed and danced with it on his own for a while.
On Monday morning we get a reality check and its back to CHLA until Friday morning. This will be round 2 of 7 of immunotherapy. It is IYH going to be according to the DR a lighter version of immunotherapy and should be pain free. Eli will IYH be home for Shabos and then its right back again for round 3 of 7 on Sunday thru Friday again followed by a 3 week break. Round 3 of 7 is a repeat of round 1 which wasn’t pleasant to put it mildly but we are not think that far ahead.
As we start a new week and a new round of therapy please keep Elimelech Ben Basya bsoch shar choley yisroel in all your tefilos etc. A GUT VOCH
BH Eli had a nice relaxed day and we hope that’s how he will be for the remainder of YT.
Please have Elimelech Ben Basya in mind in all your tefilos over YT and shabos.
A GUT YOM TOV
A GUT SHABOS
After relaxing for most of the morning at home and playing with a few friends we decided it was time to get out. We headed to Marina Del Rey but I forgot to give Eli some anti nausea meds so he had a episode when we got there but I or he wasn’t going to let that ruin the day so we got on our rented speed boat and had a blast together as a family which we all really enjoyed.
Once we got home and let Elis stomach rest for a few minutes it was back in the car for a scheduled DR appt at CHLA where Eli was cleared to start the next round of immunotherapy. The good news is that he doesn’t have to be there for this round on Sunday night he can go Monday morning and the even better news is that this round IYH should not cause any pain and he should be able to leave the hospital Friday morning.
As always Elimelech Ben Basya lrefua shelayma bsoch shaar choley yisroel. On WED morning IYH Chaya Mushka Bas Hadasa Shayna will reach a milestone that Eli and all cancer patients look forward to which is the surgery to remove the central line please daven that all should go well and STAY WELL UNTIL 120 AMEN.
A GUT MOED.
We enjoyed a family trip today to a local amusement park where Eli felt up to going on a lot of rides. He had a big boost of energy and was up and about all day going from ride to ride. On the way home we stopped off to eat dinner and Eli ate a lot more then he has in a while. I can’t say it stayed down very long but the effort was there and as long as he keeps heading in the right direction that’s a good thing.
Please continue to daven for Elimelech Ben Basya bsoch shaar choley yisroel. On Sunday night IYH starts the next round of immunotherapy.
Eli had a good night sleep and woke up in a good mood. He relaxed at home until it was time for a family friends birthday party which he enjoyed. Late this afternoon we were invited to a family friends home where they had a puppy show and a reptile show for the kids. Eli and all the kids LOVED it. They got to hold many different types of snakes, tortoises etc. Hopefully Eli will have a good night so that we can have another fun filled day of Chol Hamoed with the family on Monday.
Please as always keep Elimelech Ben Basya bsoch sharr choley yisroel in your tefilos etc. A GUT MOED
The last few days each day Eli has bli ayin hora gained a ton of strength and is almost back to where he was just before immunotherapy. For some odd reason he isn’t eating much but at least he feels good and is in a good mood. The first 24 hours of YT Eli was exhausted and didn’t leave bed at all but once he woke up Friday morning he was in a much better mood with BH a lot of strength.
Other then a possible DR appt this week to clear Eli for the next round of immunotherapy there isn’t much else on the schedule other then to give Eli a fun next few days of Chol Hamoed with the family and build on his strength and good mood.
We hope to enjoy the rest of YT with Elimelech Ben Basya and continue to see him go in the right direction on his way to reaching the ultimate goal of a refua shelayma bkarov. A GUT VOCH. A GUT MOED
BH a better day with Eli continuing to gain strength and eating more then he has lately. Let’s hope that trend continues over YT. Thank you everyone for your tefilos on behalf of Elimelech Ben Basya.
Thank you to the many people that have done so much for us constantly. Words will never be enough to show our true appreciation.
A GUT YOM TOV
Eli showed a lot of improvement today bli ayin hora. He wasn’t as weak as he’s been and he was a little more upbeat. After sitting in the waiting room at the DR for a few hours it was finally our turn. We discussed how Eli has been doing and our worries about his weakness and the DR after looking at him and giving him a basic physical wasn’t worried so BH to that.
The last 12 days and for the next while Eli has needed to be given a daily shot to boost some of his counts. He dreads getting it and I dread giving it but he has gotten used to it so its a little easier. The DR today informed us that part of immunotherapy Eli needs to begin taking Accuttane which generally is used for very bad skin but something in it is apparently good for cancer treatment. Being that this is a relatively new discovery we and the DRs have been fighting with the insurance to approve it which they as of now they haven’t. Based on Elis weight and age he needs a certain milligram that needs 2 pills to get there. The problem with this all is that Eli has been literally tortured with all these meds and treatments and the thought of him having to take this pill now which can make him very moody and dry out his skin twice a day and 2 pills each time is just rough and ridiculously expensive. Not much more to say then genuk shoyn or ad mosai but then again we are doing anything and everything to make sure Eli gets the best care so I guess we shouldn’t complain.
Whatever the case is please have Elimelech Ben Basya in mind that this new drug should not have any negative side effect and only gets us to the ultimate goal of a refua shelayma.
Today was different then the last few days as Eli got out this morning to hang out a family friends house which he really enjoyed. Later in the day he got exhausted and very cranky and moody. Late this evening he ate a few bites which he really hasn’t done in a while so in some areas he is gaining and some areas he has a long way to go. He isn’t himself at all and we hope to get some answers or ideas from the DR on Tuesday on what there is to do to help Eli gain his strength back.
Please continue to keep Elimelech Ben Basya in your tefilos.