Looking forward to the final chemo treatment of this round late tonight. The plan is beezrat hashem for Eli to go home some time this weekend. Depending on how he does this week they will decide on which route to continue meaning if they will do another set of scans to see how he responded to this round before they continue. Hopefully it did all it was meant to and is stopping and shrinking the tumor.

There will be a Yom Tefila for Elimelech Ben Basya Sunday morning at Sharei Tora 334 N La Brea Ave 9:30AM.

A GUT SHABOS

Not much to update BH as all remains status quo.

Na lilmod vlhispalel bzchus Elimelech Ben Basya bsoch shaar choley yisroel

For the most part today was BH ok other then the fact that Eli isn’t in the mood of eating anything which isn’t surprising and is pretty usual while getting chemo and will probably be that way until this round is done. He is back on TPN 12 hours a day now for the forseeable future as a precaution to keep as much weight on as possible.

Eli has already began day 3 of 5 of this round of chemo and bli ayin hora the extreme pain that he had over the weekend is basically gone.

Please as always continue to daven on behalf of Elimelech Ben Basya that all should go as planned with no pain C”V or side effects.

There isn’t much to update other then late last night day 1 of 5 of this round of chemo began. Some of the chemo will only be given some of the days and one of them will be given all 5 days. I don’t have much information as to why other then this is what the protocol is.

We are taking one day at a time and juggling work and Sori and Ari who aren’t having the easiest time with the fact that Eli is back in the hospital and they can’t visit him since its still flu season in CHLA all I can say is thank gd for skype.

Please continue to daven for Elimelech Ben Basya that the known chemo side effects don’t happen and that it should do only its intended purpose of destroying the tumor.

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.

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

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.

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.

Haven’t sent an update in a long while but BH things have been bli ayin hora pretty good. After the last in patient day in CHLA Eli was showered with many brochos, presents, balloons, the front door and house were decorated all in his honor to give him much needed chizuk and love. Slowly since then Eli has been regaining strength and has also been eating. We are now slowly starting the process of beezrat hashem weening Eli off of the TPN which his body has gotten used to.

Last week we spent the long weekend with bubby and zaidy Ribiat from Lakewood which was very nice. Then after mid winter vacation Elis morah and class made a beautiful welcome back sign and pizza party in his class. That was the first day he was back in school in quite a while. The next few days he went to school each day a little bit longer then the day before. We look forward to that trend continuing until Eli IYH gets back to a full normal regular schedule.

We just got back today from a long weekend in Miami with hundreds of other people that were all there for the same reason the Chai Lifeline marathon. Eli was the center of attention where we had over shabos 3 tables full of people that flew in to run in his honor. Each runner pledged to collect $3600 and some for the first time got to see and meet Eli. It was a beautiful shabos in a very nice hotel all arranged by Ayala Back and Chai Lifeline and their whole team. Sunday morning at 4AM we woke Eli up to get on the bus to go to the start line. They had arranged a special oversized jogger that was pushed by a good friend of ours Yossi Cohn. They finished the half marathon 13.2 miles in record time and Eli along with all the runners received their medals. It was truly a moving and special weekend.

The schedule for now for Eli is that he has a 2 week break from the accutane medication and then does one more 2 week round of it. That will be followed the week of 3/10/14 of a full round of scans and beezrat hashem as soon as we get IYH only good results the official treatment plan will be done. Eli will have his line removed if he is able to be without TPN. After that we look forward to seeing Eli continue to grow, gain strength and as always continue to only give us nachas as we watch him grow bruchnius ubgashmius until 120.

One last usual request please as always have Elimelech Ben Basya in mind in all your tefilos and we should all be zoche to seeing Eli have a refua shelayma bsoch shaar choley yisroel AMEN

Not sure where to begin but BH all of the scheduled in patient treatments are finally done. To say that this year + has been a challenge would be a under statement but as a resut of this year our lives have been permanently changed for the better.

There is a endless amount of people that we owe hakaras hatov for helping us get thru this year but today we started that and its going to take a very long time to get to each person but we will try. We thanked all the nurses, doctors, front desk people, valet people in CHLA with a good bye lunch/dinner/snack/drink party this afternoon and evening and we thanked them for being true shlichim. 98% of the staff has been extremely nice and helpful and we felt it was the least we can do to show our appreciation.

Late this evening all of the nurses on Elis floor came into the room with a very special gift from CHLA to Eli. A big banner saying “way to go Eli” with a large lego set of an airplane. They all wished Eli well and we in turn wished to never see them again in this building.

BH aside from one of the days this week it was a relatively easy week as far as pain goes and as usual the champ KING ELI didn’t complain even when it wasn’t easy. The endless amount of pain, fear and sleepless nights that have been part of Elis life we can start to IYH put behind us. Eli is a real trooper and has as a result gotten smarter, matured and learned more this year then any child should ever grow in a year.

I don’t know the exact count of nights that we spent in patient but its well over 100 and our main tefila is that Elimelech Ben Basya should be zoche to spend for every night he spent in the hospital 1 year out of the hospital and hopefully that number is 112 nights so that will correspond for Eli to have that many more gezunt years to 120. AMEN