The last few days BAH have been pretty good and Eli continues to make progress daily feeling stronger and being more active. He has been eating nice amounts and is enjoying it. On Monday Eli had his labs checked again and it showed very slight improvement in his platelet count. Being that its been over a month since his last chemo and since his platelets aren’t recovered enough to be eligible yet for the studies our only option for now is chemo.
On Monday we once again get a reality check as Eli will IYH go in to have his bone marrow checked. Eli has had this done many times but none very recently. If all goes well it should be a 15-30 minute procedure and they usually discharge Eli a few minutes after its complete. On Tuesday Eli will once again begin the same chemo as this past round but they will only do 4 instead of 5 days of chemo so it will be Tues-Friday and its done outpatient.
Based on the results of the bone marrow procedure they will then know if giving stem cells after chemo is complete will help jump start the platelets to climb. Once again this is our hope that it gets to a number that will allow him to be on a drug study versus chemo as the side effects of the drug studies are far less then chemo and the results can be much better but to reach criteria to be on one is much higher.
Please continue having Elimelech Ben Basya and all cholim in your tefilos
Eli had a well deserved fun filled week. Monday we went as a family to Disneyland. On Tuesday Elis Uncle Nachum came from Lakewood and we went bowling and went to Elis favorite steakhouse. On Wednesday together with Uncles Nachum and Reuven we went fishing for the day which we all thoroughly enjoyed. On Thursday the counselor that was meant to accompany Eli on his trip to Florida came in and took Eli alone to Universal Studios. Thank you so much Chai Lifeline, Yakov Jeidel and of course the special counselor Eliyahu Katz.
As far as treatments and appointments there were none BH this week and we don’t yet have the schedule for next week but it will probably consist of a lot of blood work as well as a bone marrow check. Based on those results it will then IYH be decided what further treatments and when Eli will have them.
Unfortunately the Tehilim list seems lately to only grow. Please have in mind Malka Braindel Bas Shaina Shifra a 5 year old who has relapsed for the 3rd time. Chaya Mushka Bas Haddassa Shayna. Golda Bas Miriam. Hillel Sholom Shachneh Ben Rivka. Elimelech Ben Basya all of the above are young children suffering from similar machlas and are in need of our tefilos.
As a side note when I don’t post anything it means BAH all is ok and we don’t want any Ayin Hora so we keep it at nothing.
A GUT SHABOS
The last few days BAH have been very good. Eli got around quite a bit over Shabos and for the first time in a few Shabosim he sat for both meals and ate quite a bit.
Eli had his lab work done this morning and BH he doesn’t need any transfusions. However his platelets did start climbing but still has a long way to go to reach the levels needed to be eligible for the studies. We do have a good few days left to see if they will reach those levels before we have to finalize a decision on which treatment to go with.
Today we went as a family to Disneyland and the kids had a blast. It was a real enjoyable treat and the best part was that Eli enjoyed it. We hope over the next few days Eli continues to gain weight and strength in preparation for the treatments ahead.
Please as always continue having Elimelech Ben Basya in all your tefilos. A FREILICHEN CHANUKA. A GUT CHODESH
We met with the DR today for results of yesterdays scans. BH it seems that this past round of chemo stopped the intense spreading that was going on and may of possibly shrunk the cancer a very small amount as well. The CT scan BH remains clear of any masses.
The one problem is that the labs today showed Elis platelets still dropping which by now they were expecting to be recovering on their own. They are hoping that Eli is just taking a little longer then the normal. The problem with not having Elis platelets recover on their own means that there is a lot of disease in his bone marrow and that will make Eli un eligible for any of the studies we are hoping he will get on. There are other chemo options if this is the case but would be a lot better to do the drug studies. By next weeks labs we will know if they will recover on their own and if not as a last resort they will try infusing stem cells which may jump start things further.
Bottom line is we are definitely ok with todays results as the possibility that things could of been getting worse was a likelihood. We continue to have a long road ahead of us to help Eli to a refua shelayma and as always we will continue to taking one day at a time and do what’s best.
Please as always continue having Elimelech Ben Basya in all your tefilos. A GUT SHABOS. A FREILICHEN CHANUKAH
BAH the last few days Eli has been gaining a lot of strength and is finally back somewhat on his feet. BH Mondays labs were ok and didn’t require any transfusions. This afternoon was spent in CHLA getting both a MIBG and CT scan. They have a new machine which does both together which you would think makes it go quicker and more efficiently but no just the opposite it takes longer but produces much clearer pictures.
Thursday at noon we are back at CHLA for a lab draw to see if Eli will need a transfusion or not. That will be followed by a DR visit to hear today’s scan results. Based on the scans and Elis blood counts we will see from there what treatment and when Eli is eligible for.
This evening Dr and Mrs Levin made a Chanuka party for Elis class special for Eli and BH Eli had the strength to go and really enjoyed the special occasion and was given a huge sign signed by his whole class filled with well wishes and brochos from his classmates truly very special and enjoyable. THANK YOU SO MUCH
Eli has also been receiving lately from many of our friends some of whom we know and some we never heard of from local and around the world special Chanuka gifts. It is really special and very moving to get such things and even though many times we don’t get around to properly thanking the people responsible for it we thank you for helping lift Elis spirits and he enjoys them all.
Chai Lifeline as always has sent for all of the kids a special gift thru an anonymous donor daily for all 8 days of Chanuka and the kids are loving un wrapping the gifts and the special prizes. Thanks so much.
3000 miles away in Peekskill NY this evening there was a Chanuka mesiba where the Rosh Yeshiva who has done so much for us and Eli these past 2 years and for myself the last 20+ years announced that the Mesechta that the bochurem will be learning will be bzchus Eli. Also 2 very close and very special people who wish to remain anonymous gave 46 high school Bochurem from Peekskill anywhere from $200-400 depending on their grades from a bechina they took on the entire Mesechta Bava Metzia all bzchus Eli!!! TIZKU LMITZVOS
You can watch here http://youtu.be/1wkQFC2yIKo and was followed by Tehilim here http://youtu.be/V_u5PrSH6ck
We are hoping for a real Chanuka miracle for Elimelech Ben Basya when we get the results from the DR.
The last few days have been pretty quiet and we are not complaining. BAH Eli has been eating a decent amount and BH has shown some improvement in the strength department. On Friday Eli needed platelets and even though we didn’t want to go to CHLA we weren’t set up anywhere else yet. Once there Elis DR walked into the infusion center and sat down with us for 2 hours explaining herself and somewhat made things better. Being that for now Eli can’t go to MSKCC as the study they have there Eli isn’t eligible for we will try once again to make things work in CHLA as they have a study that we hope will be a good idea for Eli.
This week Eli will have scans once again and IYH based on the results of the scans we will know which study and where and when we will be doing next. We hope to have those results by Thursday once the scans are all complete and have been read.
This past Shabos marked 2 years since the day Eli was diagnosed and with a lot of newfound strength we will do what we have been doing all throughout which is continuing to do everything and anything possible to win this hard and long fight until we see what we set out for a refua shelayma for Eli.
For now please continue having Elimelech Ben Basya in all your tefilos
Its been a long 24 hours but BH I’m back in LA. I did get to speak to Dr Kushner for about an hour which is the reason I went to NY so for that aspect it was a good trip. Unfortunately based on Elis current situation the studies they have at MSKCC Eli is not eligible for. We hope that possibly in a few months that will be different but for right now its not an option.
There are many other options of different studies/clinical trials here in LA and abroad that he recommended and we will be making a decision on which one makes the most sense and which ones Eli meets criteria for.
In the meantime BH Eli has been feeling pretty good today and got out for a few walks and ate a very decent amount. So all in all we are waiting for Elis blood counts to continue to rise so that beezrat hashem he will be strong for the treatments ahead.
Please as always continue to daven for Elimelech Ben Basya bsoch shaar choley yisroel.
Eli had an ok day and is home resting and relaxing BH. We continue to do all we can to help him regain desperate weight and strength to be strong enough to fight.
I have been having a very hard time communicating with the DR in NY and haven’t been able to set things up the way they should be. We can not just go to NY without a plan and without scans or treatment scheduled. I was therefore left with no choice in order to beezrat hashem have a chance of getting Eli scheduled for the medical help he desperately needs but to decide late this evening to go to NY tonight to meet the DR and schedule things. I hope I am successful so that we can continue getting only the best treatment for Eli.
There have been some days over the last 2 years that the chesed some organizations and friends show is truly special. It has and continues to be the only way we can function and this evening with this flight was truly miraculous. Thank you to all our special friends, organizations and everyone that does so much on our behalf.
Please continue having Elimelech Ben Basya in all your tefilos.
BH we got home this morning and right away we were BAH able to see change in everything about Eli. He was suddenly able to walk, had a big appetite for a meal and was simply a lot happier. All the things that Eli for whatever reason doesn’t do in the hospital he was able to and did at home.
We will be working hard to help Eli gain weight and strength over the next while so that he can have the strength necessary to continue the fight.
Please continue having Elimelech Ben Basya in all your tefilos.
There isn’t much to update other then Eli remains in CHLA for no real reason other then what they call monitoring and what we call torture. They say one thing and do another. To put it mildly this last stay in CHLA has been a living hell for many reasons but the main one is the lack of care that Eli has received.
We know the system a little to well by now and like I mentioned criteria to be discharged after an infection is no fever for 24 hours, 3 negative blood cultures and to start having a blood count. ALL 3 of those were reached Sunday evening yet they decided to keep us another day with the regular threat that if you just pick yourself up and leave we report you to DCFS.
The good news is that Eli was asking and actually ate some real food today which he hasn’t done in a while and was up for fresh air for the first time since getting here on Wed. We hope to wake up to seeing Eli continuing to gain strength and hopefully blood counts and look forward to going home beezrat hashem.
Please continue to keep Elimelech Ben Basya in all your tefilos.