Finally at about 9PM the immunotherapy day 4 of 4 was complete. This harsh treatment is finally done the first of 7 rounds. Its been a long week here a lot longer and harder then what we were prepared for but as always one step at a time. The plan is now for them to take 2 separate labs to see what and if Eli needs anything prior to discharge.

The DR told us he will make sure that all is set and we would be able to leave by 8:30AM but I know already that’s not going to happen as the nurse that Eli has tonight is working very slowly and didn’t hook up his TPN until close to 11PM instead of 8:30 and that has to run for 12 hours. Hopefully we will be home by noon. They say that most kids are back to themselves pretty quickly I hope that’s the case so that Eli can put this past week behind him.

Looking forward to getting home and back to somewhat normalcy for Elimelech Ben Basya and all of us.

Eli made it thru another pretty rough day and as he has always done he hasn’t complained a word. The endless amounts of nurses, doctors and assistants that come thru the door to check on him and add or slow down the meds is insane. There is no time for him to rest, relax or sleep peacefully as there is always another tylenol, blood pressure or temperature check. All of these obviously are for his benefit but its just not fun or easy to put it mildly. On the flip side can’t complain as I bumped into a parent that I met while Eli was in the transplant unit and he got to the transplant unit 3 months before Eli did and is still there with no end in sight.

Thursday IYH will be the final day of this 1st cycle of immunotherapy and hopefully will fly by. The plan is for Eli to be discharged Friday hopefully in the morning so that he can actually rest and relax and slowly get back on his feet and eat something orally which he hasn’t done all week.

The schedule now other then possibly a DR visit is to keep Eli at home and enjoying sukkos and the family before he needs to return to CHLA for the next round starting Sunday night right after sukkos the 29th from Sunday night to Friday morning and to go home for the weekend and then right back again for Sunday night to Friday morning followed by a few weeks break IYH.

Elimelech Ben Basya bsoch shaar choley yisroel lrefua shelayma Bkarov amen

Halfway thru this treatment and the next 2 days can’t come and end quick enough. Eli had a pretty rough night with fevers (very normal and expected from the immunotherapy) and being harassed every hour to check his vital signs and temperature. Once he was back on the immunotherapy IV today it surprisingly wasn’t as bad as yesterday but definitely wasn’t great either. It ran for 10 hours which is the quickest it can get done so at least BH there were no major concerns while it ran.

Being that he is on a lot of meds he is sleeping a lot and hopefully will get somewhat of a normal night sleep which we both can use. The immunotherapy also makes it hard for him to relieve himself so at night he has to go quite often to make up for It. On the other hand it is also giving his gut and diarrhea a much needed break so hopefully something positive will come from that.

Looking forward to a easier day on Wed for Eliemelch Ben Basya bsoch shaar choley yisroel and hopefully things will move as quickly and easily as possible. We look forward to IYH leaving CHLA sometime early on Friday.

Today was what I somewhat was warned about but until we were actually in it do you realize what its about. Eli was hooked up to the immunotherapy IV at about 10:30AM and almost right away started having extreme pain. They had him on a few different medications to help ease it but until it actually kicked in wasn’t until after 1:30. Once the meds were in his system he wasn’t screaming in pain anymore and was a lot more calm and pulled thru the rest of the day with minimal pain. He was VERY drugged up on morphine and kept dozing off.

Finally after 10 hours at 8:30PM day 1 of 4 of this round was complete and the IV for the immunotherapy was removed and they will be slowly thru the night be weaning Eli off of the pain meds. So far so good there and he isn’t complaining and I pushed him to pull himself out of bed for our traditional few minute walk for some fresh air late this evening. BH he is back in bed and seems to be resting comfortably now and isn’t complaining and is a lot less drugged up then he was earlier. He hasn’t eaten at all today but he’s on TPN so its not a concern. He is drinking plenty even though he doesn’t need to as he is on hydration IV all the time.

There were 2 literally MIRACLES today in the cancer world that even though we didn’t have an easy day these carried us thru the day. Chaya Mushka Bas Haddasa Shaina was completely finished her rough treatment about 2 weeks ago and went for her final scans. The dreaded call came to her parents a few days later that the scans were not clear and they felt that she would need a lot more additional treatments. Bchasdei hashem this morning she went into the OR and the DRs realized that what they saw on the scan was scar tissue from the radiation and she will not need more treatment and is in fact clean and will beezrat hashem stay that way until 120. We thank her parents for the continued chizuk and lessons in emunah and bitachon that they have given us daily.

The second story was someone very close to us was diagnosed with lymphoma about a week ago and the only question was what type it was. He had a biopsy done right before RH and when he went today for the results he was informed that it is not lymphoma and is just a virus and with antibiotics will be fine in beezrat hashem a few short days. Two unreal stories that I personally know in one day versus the usual 2 stories the opposite way. We should be zoche that this is the new trend.

Elimelech Ben Basya can use some good mazal now also so that the remaining 3 treatments of this week and the other 6 rounds should go pain free as it is potentially very painful for him and extremely painful for us to watch another minute of Eli in pain. Please have him bsoch shaar choley yisroel in your tefilos, kabalos etc.

Looking forward to an easier better day IYH Tuesday.

Eli got a late start to the day because his IV hadn’t finished by the time school started so he went a little late but had a good productive day at school. Once he got home at 1PM he relaxed, ate and got out with his Sori, Ari and Bassy. We got the call late this morning that they wanted Eli to check into CHLA at 9PM.

After going thru the admission process Eli finally settled into his bed just after 10PM where they ran a series of regular admitting tests and oddly his hemo levels were slightly low so they started the night off with a blood transfusion to bring those #s to the levels they should be at. The low levels may explain his slightly weaker state the last few days but is also very normal.

The plan is to start the immunotherapy IV between 9-10AM and if all beezrat hashem goes well it will last most of the day and be shut off for the night.

Please as always have Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos etc that all should go easy and smoothly this week and for the remainder of the treatments.

Elis appointments on Wed were meant to take a few hours and get us home close to YT with the final test at 4:30PM but BH somehow we were home after all appointments before 4PM!! We received the results which were all good and were to make sure that Eli met criteria to begin Sunday night immunotherapy. Being that immunotherapy isn’t FDA approved yet they need to officially put Eli on a study program and to be part of it certain numbers needed to be met which he did meet.

Eli felt very strong over RH and made it to every tefila over the 3 day YT. He davened and sat for a nice amount of time. As part of the study scheduled to begin on Sunday Eli needs to take a shot every day for the 3 days prior to being admitted which I can’t stand giving and he is extremely scared of. Once again he took it starting on Friday and after making a fuss before the shot once he agreed it went bli ayin hora very well.

The plan is for Eli IYH to go to school on Sunday morning and spend the afternoon relaxing with all of us before he needs to check in sometime Sunday evening to start hydration and for the immunotherapy to start Monday morning and end Thursday night followed by more hydration and then beezrat hashem discharge Friday morning. This will be the schedule each time he goes in for immunotherapy which will be for a total of 7 times of Sunday evening to Friday morning.

There is unfortunately a high probability that this will cause pain and high fevers while being inpatient. He will be closely monitored and will be on a morphine drip and anything else he may need to help keep him comfortable during the planned 10-12 hours that he will be on the IV daily for the 4 days. The good news is that once he’s off of the IV on Friday there shouldn’t be any side effects.

As the new year begins and what beezrat hashem is the final impatient phase of Elimelech Ben Basyas treatment plan please keep him in mind in hopes that things will go easier then planned and better then planned. Also there are many cholim that are in desperate needs of our tefilos let this be the year that they ALL receive what they so desperately need which is a refua shelayma BKAROV. Have an easy fast and Gmar Chasima Tova. A GUT VOCH and A GUT YUHR

Eli pushed himself and BH lasted his first real full day at school from 8:15-4. He enjoyed it and realized he can do it and although he was quite tired by the end of the day it was a big step.

We got notice late today that prior to being admitted IYH scheduled for Sunday evening Eli needs to have a few minor tests and lab work done so we have a busy Erev YT schedule in CHLA.

Being that we have a busy day ahead I don’t think I will have time before YT to update so this is the last post of the year and I feel I haven’t had the correct hakaras hatov to many people from family, to rabanim, friends and organizations. The list is endless from people we have never met to our siblings and parents. This past year has been a very trying period but somehow we thru the chizuk and help we have received bli ayin hora have pulled thru this far and IYH will continue until we reach the goal we set the day Eli was diagnosed nearly 9 months ago nothing less then a refua shelayma.

We personally, the LA community, and all the world has seen enough tzaros. There rarely goes by a day in which you don’t hear about a tragedy or someone close to you or someone you don’t know being diagnosed with serious diseases. We scream, we cry many different things genuk shoyn, ad mosai, day ltzarusanu and the list goes on but at the end of the day hashem has his reasons which no one can say what or why they are other then accept them and deal with them.

Let’s hope and daven that the world has seen enough tzaros and this coming year will be one of most importantly and only GEZUNT, nachas, parnasah and everything one wishes and davens for.

Being that we have an extremely busy day tomorrow I don’t think there will be much time to personally wish all my family and the people I owe a phone call of KVT to but please take this as a personal message. If I have done anything wrong to you please be mochel me. May all you daven and wish for be granted and let this year be a year of only simchas and happiness.

Please as always especially over RH have Elimelech Ben Basya and the endless list of shaar choley yisroel in mind and may al cholim be zoche to the refuas they all need BKAROV

KSIVA VCHASIMA TOVA
A GUT GBENTCHEH YAHR

Once again Eli did blli ayin hora very well in a shortened day at school. The challenge will be IYH on Tuesday to see if he can last a full day. He enjoys his classmates and his rebbi very much and has to get used to english class and spending more time in school. Late this afternoon he enjoyed a BBQ with all of us at a friends house and then decided after he wanted to go to Shilos for a big steak which he enjoyed and ate.

Halevay vayter is the only thing we can keep hoping and davening for Elimelech Ben Basya as we help him continue on the road to a refua shelayma.

With each passing day BH things seem to be slowly but surely getting there. Eli looks and feels stronger and is overall in a better mood. He was in school for the day again today and is very happy to go and be there. Like we say one day at a time as long as it keeps only heading in the right direction.

Beezrat hashem we will only continue having good reports on Elimelech Ben Basya and all cholim which unfortunately the cholim list only seems daily to grow.

Eli had a most relaxed and enjoyable Shabos at home with the family and guests. He got to shul for all the tefilos and was BH in a great mood and ate a lot more then he has lately. As each day passes lately bli ayin hora these seems to be more and more improvement both physically and the way Eli looks.

Next Sunday Sep 8th IYH will be the first night back in CHLA to begin immuontherapy which we will have to repeat 7 times being inpatient from a Sunday night to Friday morning and beezrat hashem all will continue going as planned or even better.

Please as always have Elimelech Ben Basya and All cholim in mind. A GUT VOCH