Bli ayin hora Eli has been doing very well lately. He has been in school for a good part or all of each day this week so far. He has also BH been eating a lot as we are working on weaning Eli completely off the TPN. Today Eli had a quick scheduled appointment to get a 15 minute IV for low calcium. This evening Eli starts oral chemo for 2 months IYH. He will take one pill right before going to sleep and we will first give a nausea pill so that in case this causes any nausea it beezrat hashem will be controlled.
We have been told that there should not be any noticeable side effects and hopefully that will be the case. There is a small chance that Elis hair may thin or some fall out as a result but not likely. This again will hopefully in a best scenario continue to knock away at all cancer cells and continue to clear Elis body from the machla. It is also possible that it won’t do much in regards to continuing to clear the machla but IYH will at least keep it from spreading.
Please as always continue davening for Elimelech Ben Basya and all cholim.
BH the news continues to be good. We didn’t meet the DR on Wed as I thought we were going to rather we met today. The bone marrow results show significant improvement and the levels of disease in them are down considerably. Not fully gone yet but IYH headed very well in that direction. And this is all in line with the results from a few weeks ago MIBG and CT scans.
The plan from here is that starting Tuesday Eli will go once a month for a chemo infusion in the Hospital and then one chemo pill also daily for the next 1-3 months until the next scans. The hope is that it will continue beating at the remaining cancer cells or at least keep it at the levels they are now while not significantly making Elis blood counts drop. We continue working on weaning Eli off of TPN and bli ayin hora its working and he has been eating a lot more and not losing weight. The goal is to get him completely off of it in the next month or so. Hopefully starting Friday or next week Eli will slowly get back into school until he’s IYH there full time.
Please as always continue having Elimelech Ben Basya and all cholim in your tefilos and may we continue to see them get what they deserve a refua shelayma bkarov. Amen.
We were at CHLA at 8:45 for Elis bone marrow procedure and we were back in the car before 11AM after the procedure was complete. This by far was the quickest ever BH and we aint complaining. The rest of the day Eli was pretty tired and nauseaus but that’s all pretty normal side effects of propofol.
Eli will most probably relax and rest on Tuesday also before we head back IYH on Wed afternoon to CHLA to beezrat hashem hear the good results from the DR and the future treatment plans.
Please continue davening for Elimelech Ben Basya bsoch shaar choley yisroel.
Bli ayin hora we had a beautiful YT at home and with family and friends. Eli made it to shul quite a few times and especially enjoyed Simchas Tora where he held a Navi Klaf. BH he’s also been eating very nicely and holding it down usually. We are beezrat hashem slowly working on weaning him off the TPN or hopefully minimizing it as much as possible in hopes that that’s what’s causing the liver number to be as high as it is and hoping this will help lower that number.
Over YT the nurse came twice to draw labs to monitor his blood counts and to make sure that the infection which he is still getting 4 X a day IV for is negative. The plan for this week is Monday morning to be in CHLA for the bone marrow procedure. We will get the results and IYH the treatment plan on Wed or Thursday when we once again meet his DR to discuss.
Please as always keep Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos A GUT VOCH
BH on the first day of YT in the morning we got the good news that the infection that Eli had wasn’t the same infection that he had last time. While they don’t know why he got this infection and the reactions he had as a result don’t match the infection he has but once they saw he had 3 negative blood cultures and looked and felt good they decided that we can leave on the first day of YT at about 4PM. This was a great YT present to both Eli and I and the family as being in the ICU or any part of the hospital with no Sukka and alone isn’t easy to say the least. Eli is on very strong IV antibiotics now and needs to have it 4X a day and take pre meds to fend off any reaction 30 minutes prior to the 90 minute IV.
We are also taking a lot of extra precautions to try to help make sure that this was the last infection Eli ever gets by keeping his line and everything around him a lot more sterile.
We did have the first night of YT “Uncle Yoeli” join us for the seuda and there were many people that planned to walk the long walk there and back to be with us but BH it wasn’t needed after all. One special family did take the long walk and were able to greet us as we were getting into the taxi to say Good Bye.
Eli enjoyed the family and being home, in shul, in a sukka and just relaxing and BH felt very good. The next thing is a blood draw on Monday just to make sure things are ok which IYH will be done at home by his home health nurse. Monday after Sukkos the 20th Eli is scheduled to have a bone marrow procedure to help decide what the next treatment should be. It generally takes a few days for those results and we will meet Elis DR on Thursday the 23rd to hopefully plan it all out.
Please continue davening for Elimelech Ben Basya and all cholim. A GUT MOED and A GUT VOCH
Late Tuesday night they were able to get Eli off of both blood pressure medications and BH he’s holding his own. This morning they were able to reduce 4 antibiotics to 2 and they hope to narrow down to 1 in the near future. He should of been moved from the ICU to a regular room but once again there are no available beds on the floor they want Eli to go to so we will have to wait.
The good news is that the DRs are bli ayin hora happy with the progress and are hoping things continue in the right direction. The sad and hard news is that its YT tonight and we will not be where we should be. But then again hopefully one of these days as soon as they have it down right and can agree on a plan of care for this infection they will allow us to leave.
Wishing everyone a Chag Kosher Vsameach and asking everyone ass always to continue having Elimelech Ben Basya in all your tefilos. A GUT YOM TOV
As of 6AM Eli has been in the ICU for dangerously low blood pressure. Since then they have put him on 2 different BP IV medications and 4 antibiotic IVs to start fighting off what they initially predicted was a possible infection. We did just get word that the cultures are already coming back positive for an infection. They are not sure what type of infection it is but if it is the same infection as last time they will go under the assumption that its being caused by the new central line and will need to temporarily surgically remove it. They won’t have the final results as to what type of infection it is probably until tmrw.
In the meantime the BP meds have helped a lot and BH they have begun to reduce the levels to slowly wean Eli off of it completely IYH. As soon as he is stable and not dependent on BP meds they will move him out of the ICU into a regular room. Unfortunately realistically we will be here for the next while and will not be home for the first days of YT as a result.
They will continue Eli on all 4 antibiotic IVs until they can verify which is the best one for the infection he has and at that point stop the other ones.
Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
Well tonight didn’t go as planned. Eli woke at 11:45PM says he feels hot and he was right he had a low grade fever. So we rushed to the ER and that’s where we currently are. BH his fever has been gone since arriving and getting tylenol however his blood pressure once again is low and his heart rate is high so they are admitting Eli.
Our primary DR is the DR on call this week so beezrat hashem if things stabilize without needing any special IVs to make that happen we hope to fight to get him discharged sooner then usual but obviously will only do what’s best for his health.
Either way please daven for Elimelech Ben Basya that this should be nothing and that he should be allowed to go home and stay home.
The last few days Eli has been doing BH very well and has been in school for half of each day. Today he went for the morning and then headed to CHLA for our scheduled DR appt that was scheduled to begin at 1:30 with blood draws. We saw the DR at 3PM and discussed the scans and how he’s been doing lately and bli ayin hora we are all around very happy.
There is one number that isn’t good and they don’t know why but isn’t cause for any major concern. Its the same number that caused the MIBG treatment to need FDA approval and its still not at all where they would want it to be. We are trying to determine what’s causing that and since Eli has been eating quite a lot and weighs more then he’s ever weighed we are going to be doing TPN every other night instead of nightly and hoping that will help bring that number closer or to where its meant to be.
There is nothing scheduled until after Succos when they will recheck Elis bone marrow and see if there is still disease inside. They are under the assumption that it hasn’t cleared but we have seen miracles and hopefully this will be one of them. It isn’t the end of the world if it isn’t at all but would be better if it is obviously.
Based on all that comes from his blood counts over YT and his bone marrow scan they will then IYH determine what’s next on the treatment. All options will be weighed and it will be probably be a choice of chemo, radiation or immunotherapy or all of the above and it will be stretched out over a long period of time so that there is a constant fight keeping the machla away as much as possible.
On a side note a friend of ours opened a website on behalf of Eli where people can write and share what different zchusim they do or have undertaken on behalf of Eli www.inhonorofeli.com. Thanks so much and tizku lmitzvos to Yossi, Dini and Rachel for spending many hard hours on this project and zchus.
Also anyone that has Instagram should please follow and encourage others to follow Elis page as he wants a lot of followers, enjoys positive comments and loves to get likes on the pictures he posts @Eligradon.
So BH we are very happy with how things have lately been going and with todays appointment. We do as always ask that you continue having Elimelech Ben Basya and all cholim in your tefilos. Wishing everyone a GMAR CHASIMA TOVA A GUT GBENTCHTA YAHR and A GUT SHABOS.