Although we have tried extremely hard today and we will continue non stop trying to help Eli gain some strength and weight we did not have any success yet. While he ate a decent amount at best he was unable to do any exercise as he was to weak and completely out of breath after a few small steps. We are not sure what this is coming from if its a result of the surgery, chemo or a combination of both. We are very top of every second and every step of each day and hope that this will be sooner then later something of the past.
As far as the DRs are concerned as long as his lungs are clear and he’s drinking which BH he is ok in both those departments they are not concerned. We don’t know his current exact weight but its by far the lowest he has been and hope that the foods he eats will stay and he will be gaining much needed weight. His stomach problems have definitely gotten better but we are not sure if that’s because of the harsh chemo he received or if it just got better over or hopefully as a result of our davening.
Elimelech Ben Basya needs our tefilos to help us help him get the strength and courage to continue his fight of this machla.
Today went pretty well as we begin and really try to push Eli to eat as much as possible and to exercise as much as possible and it went ok. He had a decent amount to eat a few times and got a lot of fresh air. However one of our main concerns is how thin he is and especially how weak he is. It is very hard for him to walk more then a few steps without him having to stop, sit down or catch his breath. We are hoping as time passes so will this and hopefully beezrat hashem sooner then later he will be doing the simple things he can not physically do now.
With not much scheduled this week at all we hope that we can start achieving our goals for him and pray that chas vshalom no side effects show up so we can assist him a little easier to continue getting on the path. The next planned appt is next week to start with a CT scan and over the few weeks after that another few scans so we can get a clear picture that hopefully the chemo and surgery have done what they were meant to do so we can continue with the scheduled treatments.
The next few days will hopefully get easier for Elimelech Ben Basya in regards to the problems he is having and hopefully he will wake up with a new found strength so that he will continue to have the strength to continue this fight and regain his happy spirit as well as some weight and full strength BKAROV
We hope beezrat hashem that the next month aside from some outpatient hospital visits will go as planned and that Eli will be home relaxing and gaining back some weight and strength. The last month has been extremely rough physically and emotionally on Eli and all of us. The smile Eli had on his face leaving the hospital on friday morning was priceless. He has endured a lot lately and has pushed himself to get thru all of it. The minute he leaves the hospital he is happy to do things he won’t do at all while in the hospital from eating normal amounts of food to exercise and even some basic communication comes back very quickly.
From when Eli got home Friday morning until he went to sleep late motzei shabos was filled with everything he wanted to do and we were happy to let it all happen. As usual he insisted on going to davening all 3 times over shabos just that he can feel back into somewhat of a normal routine. Motzei shabos as I have done every year we went to a lag baomer fire which he really enjoys and refused to miss. Over shabos he rested, relaxed and ate a very nice amount and it was very nice to be home back in his and our own beds.
Over the next few days and weeks we hope to help Elimelech Ben Basya continue on the road of a full recovery and help him regain his strength and weight more and more each day so that we can get to what we are going for which is refua shelayma BKAROV. A GUT VOCH
Just a quick short update. BH Eli was finally discharged pretty early today at 9AM after a long week and is extremely happy to be home. Like I have mentioned earlier the next few weeks are goal is to get Eli as much as we can to pre chemo conditions IYH.
Please keep Elimelech Ben Basya in your tefilos this shabos and always. GUT SHABOS
Bli ayin hora today was a lot better then what we thought it would look like and we hope it will continue. Eli rested and slept most of the day and while he was up was for the most part he was happy and not nauseous BH. Eli got in the mood of eating for the first time in 2 days and luckily Rabbi Korf from Chabad of Los Feliz who has been extremely helpful and always comes to visit and to offer his assistance in anyway possible arranged for Eli to have the food he wanted in a few short minutes. It was really nice to see real food and not medication going into Elis mouth and eating it with a smile.
They have finally after 72 hours straight of chemo removed the chemo IV and BH Eli is only now on hydration IV and if beezrat hashem he has a easy good night I have asked the DR on call that makes rounds in the AM to please come see Eli first so that he can be discharged as early as possible. The goal is to have Eli home as early as possible to allow him to start recuperating from this harsh week of chemo as well as to continue his recuperation from 3 weeks ago surgery which he still has a long way to fully get back to himself. It is still a struggle for him to walk more then a few feet as he gets extremely tired and out of breath and his stomach problems have also a long way to go until it is back to normal. We plan on helping him eat as much as possible and also getting him back into the routine of eating as much as possible. Eli weighs the least he has weighed since being diagnosed and we hope to beef him up as much as possible before the next round of treatment which isn’t planned for about a month from now.
The only way possible that Elimelech Ben Basya will continue on the road to a full recovery is if we can accomplish what we would like to as I mentioned above. The only real way that will happen is thru davening and kabalos that we constantly take upon ourselves as do many others and we know that’s how ultimately we will help Eli have a refua shelayma BKAROV
After a very rough night with the nurses, nurses aides, housekeeping and all the staff of CHLA finding stupid reasons to come into the room all night and not allow Eli or myself to sleep they finally had a nice normal nurse take over at 7AM. The morning was a little hard for Eli with some throwing up and having a bad stomach (sadly this has become the norm is his life for now) but BH as the day progressed and the meds kicked in Eli was able to relax and sleep a good portion of the day. Late afternoon Sori and Ari came to hang with Eli and have dinner altogether. At about 9PM after a relaxing bath I took Eli to do what he enjoys the most in CHLA which is to take a long walk around the hospital even slipping outside for a few seconds of needed fresh air.
BH we are now almost thru 48 of 72 hours of this hard round of chemo and hopefully the time will fly so Eli can go home and start the recuperation process once again and hopefully without the predicted side effects. The plan as of now is that sometime on Friday hopefully in the AM Eli will be discharged and will be able to be home beezrat hashem aside from having to go in for appts and scans for about 4-5 weeks.
We are at this point just hoping for one easy day at a time for Elimelech Ben Basya that all side effects or anything else not on the schedule doesn’t happen so that Eli will have the strength, courage and spirit to continue fighting until he has a refua shelayma
We are just about done 24 hours out of 72 hours of round 6 chemo. Most of the day went pretty smoothly but slowly as the day went on it got harder for Eli. We decided to try to be proactive and make sure he’s on some of the medication prior to actually feeling the side effects so that he either won’t feel them or it will be a little easier. The side effect of being on these medications are exhaustion so Eli slept a good part of the afternoon and hopefully will sleep comfortable thru the night.
The plan is the actual chemo will run beezrat hashem until late Thursday night followed by some more hydration and IYH on Friday they will discharge Eli. We have already began scheduling the weeks after that and there is a lot ahead all of which we are hopeful will have the results and outcome of only good news. Eli will be having many different types of scans to make sure that the chemo and treatments are having the affect they are meant to be having.
Mazal tov to my sister Rikki who is engaged to Chaim Stein from Flatbush who for our own selfish reasons hope the wedding won’t be for a while so that Rikki can continue helping us with Eli and the other kids while he goes thru treatment. Unfortunately Eli wasn’t able to be at the vort but we look forward to making up for it at the wedding with Eli being full of energy.
Hopefully the medication will help and that chas vshalom Elimelech Ben Basya should not have any side effects from the current treatment and beezrat hashem the next few days and weeks will continue to fly by as we continue to watch Eli have a refua shelayma bkarov
I was notified this evening of another frum child that was diagnosed with nebach the same disease as Eli and I’m asking everyone to please keep this 1 year old child in their tefilos as well. Her name is Chana Tova bas Esther Shoshana and we should all be zoche to see ALL cholim have an immediate and full recovery. AMEN
This morning we for the first time in a long while we saw some minor improvement in Eli gaining some strength. Bli ayin hora he didn’t need us to carry him for the short distances he has needed us to do lately. The morning was spent waiting at home for the hospital to call us to let us know when a bed will become available. After we realized that there wasn’t going to be an open bed in the AM Eli went for ice cream with Bassy and really enjoyed getting out.
Finally at 3PM we got the call that an open bed was available for Eli. After going thru the admission process Eli finally settled into a bed at about 5PM. There is a long hydration process prior to the actual chemo being administered and that will go on until his body has reached certain levels and then chemo will begin. As I write this Eli is still awake and BH in a good mood and hopefully this round of chemo will not come with the normal hard side effects that usually are associated with this round.
Hopefully the week will go by without any side effects, pain or anything else chas vashalom and all that should take place is the chemo doing what it should which is bring Elimelech Ben Basya closer to a refua shelayma.
Eli spent the day at home mostly relaxing aside from a short hour outing to get some fresh air and a few things that he wants to have in CHLA. While he showed some signs of his spirits coming back he hasn’t shown any improvement in the weakness dept. He struggles to keep his breath after a few short steps and has to sit down or be carried.
There are two ways to look at the coming week one is that how on earth is he physically going to be able to handle the chemo while being so weak? And the other is BH he is getting chemo which beezrat hashem will be a step close to his refua. This week will be a big test to us and hopefully Eli will help us pass it easily. BH the “flu season” at CHLA is officially over so Sori and Ari who have a very hard time understanding why Eli keeps going to the hospital and for the last few months haven’t been able to visit him while he is there will be able to visit him IYH.
We are hoping that they will have bed for Elimelech Ben Basya early Monday morning so that if all goes ok the earlier he gets in is the earlier at the end of the week that he can come home. Please be mispalel that all that we are going to get this week is just treatment with no side effects so that Eli can continue and have the strength to fight this machla until he has a refua shelayma BKAROV
A GUT VOCH. Eli had a relaxed shabos but unfortunately had no change is his weakness and was in bed most of the time taking it easy as he has been since surgery. The surprise was that he insisted to go to shul this morning and for shalosh seudos which I was happy to let him go and enjoy. There doesn’t seem to be anything we can do better then what we have been doing to help Eli regain his strength other then hopefully time will help it heal.
Not sure how he is physically going to be ready for chemo on Monday but the DR feels he will be fine so hopefully they will be right and time will fly in the hospital and all will go well IYH.
Hoping that I can report only good and better news for Elimelech Ben Basya as the days and weeks go on.