Monthly Archives: March 2014

3/17/14

We had a meeting today with Elis primary DR to discuss and map out the treatment plan. We first discussed this with many specialists in this field and we all agreed to go with the the treatment plan that MSKCC (Sloan Hospital) has outlined. We also received “hadracha” from the gadol hador R’ Chaim Kanievsky who was explained and consulted by Shlomo Yehuda Rechnitz for many hours on the options and gave us a special brocha on behalf of Eli.

Eli was checked in to be inpatient as of this afternoon and will begin tonight very high dose chemo. This is a mixture of 3 different chemos and hopefully will do what its meant to do which is stop the tumor from growing and also shrink it. This is a 5 day cycle of chemo so in a perfect world it will end on Shabos. This chemo will bring his blood counts to zero and soon after discharge he will very possibly get a fever. And as always with a fever and cancer you need to check back in to the hospital. The hard part will be if the fever happens they will need to keep him inpatient until his counts get back to a stable level which may take up to a month!!

Hopefully they will be able to see that this chemo is having its planned effect on the tumor by seeing Elis pain levels subside as otherwise after this chemo they will repeat the scans to see what it has done. If this does work they will then do a 2nd high dose round of chemo in about a month from now. Once these 2 rounds are complete we will need to travel probably to MSKCC for a full month to do a MIBG treatment there in NY as they dont offer that here in LA and the few other locations that they do offer it aren’t as appealing.

We will do everything possible to make sure we get what we set out to get and nothing less a refua shelayma for Elimelech Ben Basya.

Over Purim there was a tremendously large amount of tzedaka given to “matanos leevyonim laneyay eretz yisroel” amongst other tzadakas all lrefua shelayma for Elimelech Ben Basya by a real friend who we should all learn from and try to copy in our own capacity who has taken Elis situation personal and as he always has continues to research every option possible and continue to guide us beezrat hashem only in the right direction. Reb Shlomo Yehuda, your wife and family should continue to only see brochos from your family and IYH bkarov nachas and gezunt from Eli.

3/16/14

A Frelichen Purim

We have a very important meeting on Monday with the DR to outline the plan for the near future. We know very little other then that.

Unfortunately Eli is extremely weak beacuse of the recurrance of the disease and also due to the fact that he is having a lot of pain and is therefore having a hard time sleeping.
Other then possibly going to 1 or 2 houses today to bring shalach manos Eli and our family will be at home and beezrat hashem will be up to seeing his friends, our friends and family.

Please now more then ever have Elimelech Ben Basya in mind in todays and every days tefilos as we prepare to fight and win this terrible machla. There are 3 other cholim also going thru extremely tough times and IYH together with Eli will be zoche to a refua shelayma. Chana Tova Bas Esther Shoshana, Hillel Sholom Shach Ben Rivka, Benzion Ben Rus BSOCH SHAAR CHOLEY YISROEL

3/13/14

On Monday morning Eli was in CHLA for his scheduled CT scan which went as planned and on time and as usual Eli drank the horrible tasting drink like a champ. We stopped off after for some pizza and then headed to school.

At 4:30PM on Monday I got a call from Elis DR with news that I DID NOT want to hear and it is news I did not share with anyone family members included until I have found the strength in me to do so now. Unfortunately they have found a new tumor in Elis body and its a neuroblastoma tumor. The news is beyond devastating and we don’t yet know the full extent or what the treatment plan will be. They did the MIBG scan and bone marrow procedure and will probably need a biopsy to get an idea of how to treat this tumor. It will definitely need a few rounds of chemo again and other treatments as well.

I don’t have any other details other then to say as I wrote in my first email which some people managed not to understand. DONT DARE treat us like nebach cases. Don’t ask the prognosis as for whatever I know or feel comfortable to tell others will all be written right here on this blog which I hope to update as often as I have something to write most probably not every day.

I think I need to spell out a few things that constitute nebaching us and its something that almost no one in the right mind going thru a challeging situation appreciates and unfortunately we were subject to it since the initial diagnosis. Don’t rub our backs or shoulders, don’t tell us about some kaballah that you know for sure will work and bring Eli an immediate refua, don’t scream across the street announcing that you daven every day for Eli, don’t offer to “call me whenever you want to cry and I’ll cry with you”. Whatever you do if its in your own house privately or anywhere publicly on behalf of Eli is all extremely appreicated and beezrat hashem will be a zchus for Elimelech Ben Basya but please don’t expect us to be at your tehilim group or speech. We will do all we can to attend everything we can when we are physically and emotionally up to it.

For those that haven’t done so already there is on the right hand side of this blog a small box where you enter your email address and once you get the confirmation email you will then begin receiving the updates as an email as often as they are sent out.

This has been a very trying 16+ months and we got thru it with the help of davening and chizuk from some special people. We will need just as much tefilos and kabalos if not more for this round but somehow or other I know we will succeed and as long or short as hashem wants it to take we will be zoche to see Elimelech Ben Basya and all cholim get what they deserve with the least tzar possible a refua shelayama bkarov.

3/9/14

Bli ayin hora all has been going as planned and well over the last month + since the last time I sent an update. On 3/3/14 was the final day of the treatment plan which was when Eli finished the last cycle of Accutane. The side effects of it which were dried throat and chapped lips etc are finally getting better.

Eli has been in school basically full time and is BH doing very well. He is catching up on all the learning he has missed and continues to impress us, his teachers and everyone by his level of knowledge and maturity. He feels physically stronger and is able to get around on his own with little or no help.

Over the past month we have begun to reduce the TPN from its initial daily dose of 12 hours nightly down to 8 hours a night and now its down to 8 hours every other night “halevay vayter”. The goal is to get it in the near future to zero at which point beezrat hashem they will remove Elis central line.

The reason for this update is that this week we need some extra tefilos as starting Monday morning and continuing until Thursday morning each day Eli will have a scan/test/procedure. Monday morning is a CT scan, Tuesday is MIBG injection, Wednsday is MIBG scan, and Thursday is the bone marrow procedure. We look forward to beezrat hashem continued good results on all the above mentioned tests and we should have the results by the end of the week on all of them.

In the meantime as always please have Elimelech Ben Basya in mind a little extra this week as we go for these scheduled scans. Please also have Ben Zion Ben Rus and Chana Tova Bas Esther Shoshana both who are also fighting this terrible machla.