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.