Bli ayin hora the first of 5 chemo treatments went very well and Eli is in middle of the second treatment. It runs for a few hours during the late night hours. Beezrat Hashem it will have the right effect on him.
Please as always especially during these crucial treatments have Elimelech Ben Basya in all your tefilos etc. A GUT CHODESH
2 weeks after the initial date to start this round of chemo Eli arrived at CHLA at 10AM for the 5 day treatment. Unfortunately the nurses and DRs found every reason to completely waste an entire day and do nothing. Instead of starting chemo a few hours after arrival as they normally do for whatever reason they kept pushing it off. After I finally lost myself they got the ball rolling after 11PM!! The reason we came in early was as everything is to try to arrange that we don’t beezrat hashem need to be here for Shabos which they all clearly know but when things are running 6-10 hours late it can throw that all off. We will have to wait and see how the week plays out to see when we can be discharged.
The good news is bli ayin hora Eli hasn’t looked or felt this strong in a few months and BH the scale proved it also. He has been able to mostly get around on his own and hopefully that will only be minimally effected by this weeks harsh chemo treatments.
Anyway this very intense round of chemo runs for a few hours and is preceded and followed by pre meds and hydration. IYH it will do what its meant to do which is stop the tumor and wipe out the existing tumor and cancer cells. At some point after this they will do some of the scans and a MRI so they can decide where the next phase of treatment the MIBG treatment should be directed at and when it should take place.
Please daven that this week and treatment should go with full haztlocha for Elimelech Ben Basya and that he should have no side effects.
YT was really very nice and mostly relaxed and BH there were no complications, Dr appointments, or hospital visits either. Eli felt bli ayin hora very good and kept all of us entertained. Being in shul with his uncles, cousins and Zaidy made him so happy. The plan was originally to check into CHLA 10 days ago for chemo but because Elis platelet count didn’t meet criteria (which we are not complaining about as we were all able to enjoy being home for YT) they kept trying every few days.
The good news is that it climbed after each and every blood test but just not to the levels needed. Finally today he is nearly there so we as of now are scheduled to do the next round of chemo beginning on Monday IYH. It is once again extremely high dose chemo and will be given daily for 5 days. It is meant to bring all of Elis immune system and blood counts to very low levels and then the plan is to inject some of his own stem cells that they still have back in him to jump start the blood counts rise. It is once again very likely to cause fever but hopefully the DRs will be wrong and it won’t.
Over YT Eli received many gifts, letters, brochos and the list is endless of food and visits that came and we owe everyone that did their own thing on Elimelech Ben Basyas behalf a very big thank you and we hope to only share in each others simchas and Besuros Tovos. A GUT SHABOS
Elis counts are climbing but are still not at the level needed to start the next round of chemo. I spoke with the DR today who said its very normal that it should take this long after the very high dose chemo that Eli had. The next time they will try is IYH Monday morning and if they are good we will check in to CHLA on Wed. If they are still not good they will try again on Thursday.
Eli was out at a amusement park on Thursday Chol Hamoed and shockingly was in the mood and went on a bunch of rides. We enjoyed the day espicially seeing Eli so happy and in a such a good mood. On a side note Eli felt very special when I told him that over the last week aside from the people signed up to get the email updates the website Eligradon.com reached 100,000 hits this week and he now feels like a celebrity. We look forward to enjoying Shabos and the 2nd days some meals at home, some at friends and some at Bubby and Zaidy with the cousins.
Please as always continue to have Elimelech Ben Basya as well as all cholim in mind over Shabos and YT in your tefilos.
Also Chana Tova Bas Esther Shoshana who is suffering from the same machla as Eli is currently in middle of a very long surgery in the East Coast and we wish them nothing short of the ultimate goal we all look forward to a refua shelayma.
A GUT SHABOS, A GUT MOED and A GUT YOM TOV
BH we had a most enjoyable relaxed first days of YT with the family and friends. Eli was up to getting out and around and stayed up for the sedorim and helped and directed a lot of it. He made it to shul quite a few times and and enjoyed spending time and laughing with the cousins and anyone that was around.
On Thursday morning the nurse will come once again to draw Elis labs to see if his blood and platelet counts are high enough to begin the next round of chemo.
Please as always continue having Elimelech Ben Basya in all your tefilos. A GUT MOED
We just got the news that Elis platelet count isn’t going to be ready for Wednsday check in. So in other words beezrat hashem we will be home for the first days and Elis nurse will come again on Thursday to see if he will be ready to go on Friday. This is a 5 day course of chemo and we are far from complaining that we will be able to be home for the first days of Pesach.
Please keep Elimelech Ben Basya and all cholim in all your tefilos over YT. A GUT YT
The last few days BH have gone pretty well with Eli getting out to be with his cousins who are here for YT. On Wednsday Eli was back in school for a most memorable and uplifting Siyum on Sefer Bereishis. The entire class was thrilled to see Eli and some literally got up and were dancing of joy. Eli lasted for about an hour during which they all ate lunch together and reviewed Birchas Yakov which they all knew by heart. A special thanks to Rabbi Weiner who always goes out of his way to make Eli feel special. This really made Eli feel special and he and we look forward to the day that IYH he will be back in the classroom.
The situation is all the same as we wait for Elis blood counts to get to the protocol level so that they can begin chemo. They hope it will be ok to start on YT Wed 4/16 but we won’t know until right before YT. If its not then the next oppertunity is Friday 4/18 etc etc. After this round of chemo they will redo the MIBG scan and have also added a LONG MRI test to take place 5/1. They need these scans to decide how to continue and for the DRs in NY to know how much and where they need to focus on the MIBG treatment.
Other then that we look forward to beezrat hashem a nice quiet shabos and YT for Eliemelch Ben Basya. Thanks to everyone who has davened, donated tzedaka and done chesed bzchuso. A GUT SHABOS
On Monday Elis home health nurse came and BH the results were ok and Eli didn’t need a blood transfusion. His platelets are pretty low and they are waiting for them to go up on their own.
At 2PM we were in CHLA for a scheduled DR appointment to discuss the schedule. As of now the hope is that Elis platelets will reach the criteria level that they will be able to give the next fround of chemo on the 2nd day of YT Wed 4/16 which is a 5 day round. If his blood counts are still at that point not well enough they will do another lab test onn Thursday and then hopefully start on Friday. The plan after that is to do a CT scan to see how much this chemo effected and how to continue from there etc. On Wednsday 4/9 IYH Eli will join his class for a siyum on sefer Bereishis.
Please continue having Elimelech Ben Basya in all your tefilos.
The past few days have been BH pretty good for Eli as he and we adjust to a little bit of normalcy and most of all a quiet night sleep at home. Slowly Eli has been asking more and more for food and eating very decent amounts.
Sunday was a very enjoyable day as Eli had a friend over for most of the afternoon which he appreciated and enjoyed. Late Sunday evening I took Eli to the Bar Mitzva of Shmuel Rosenblatt who finished Shisha Sidrei Mishna and made a siyum lzchus Elimelech Ben Basya. Eli felt extremely special and even had enough strength to get up and dance with the Bar Mitzva boy. It was extremely special and a real zchus tizku lmitzvos. On Friday another Bar Mitzva boy Yakov Berkowitz gave a chunk of his maaser money bzchus Eli to Chai Lifeline.
At some point on Monday Elis home health nurse will come to our house and draw his blood and we will see from there if or what Eli may need as far as blood and platelets on Tuesday.
Please as always continue to have Elimelech Ben Basya in all your tefilos.
Today was bli ayin hora a very good day for a few reasons. Number one was that Elis counts were satisfactory enough that the DR gave us the green light to go home and so we were home by 11AM today. Number 2 was that we came home and were greeted by my rosh yeshiva Rabbi and Mrs Kanarek and his wife. I will never ever be able to properly show them the hakaras hatov we will forever owe them for living 3000 miles away and living with us and our situation on a daily basis. To shlep across the country to be with us and mechazek us for the 3rd time during Elis sickness had and continues always to give us the chizuk we need. To spend 12 hours roundtrip flying on erev Pesach to be with us a few short hours shows that BH my parents chose for me the right yeshiva with people that truly care. The only simple words I can come up with is THANK YOU.
As always once Eli is home he feels so much more normal and gets a sudden boost of energy and had a smile on his face all day. Eli was visited again by his rebbi which he really treasures and enjoys and can’t wait until he can be back in the classroom. He also was welcomed home to many lego sets sent by a few very special people which he is hard at work putting them all together.
We will need to continue giving 3X a day antibiotics by IV which I was taught today how to do. Eli will also continue getting TPN every night for 12 hours. The goal now is to get Elimelech Ben Basya as much energy, strength and weight before the next scheduled hospital stay which will be on Pesach for round 2 of high dose chemo. Please continue to daven that all should go as easy and painless as possible.
For the last few months a group of our close friends have been arranging to join Chai Lifelines marathon taking place in Florida on 2/2/14. They have already 12+ people just on the “team Eli” group along the many others that run for Chai Lifeline. To do so every runner goes through MONTHS of rigorous training which they have all began doing already. This is one of the bigger fundraisers for Chai Lifeline who anyone who has ever needed their services knows how vital they are when a family member is going through a illness. And for those who BH haven’t had a sick family member and beezrat hashem will never have should know that they are simply a lifeline. Always there and always thinking about what they can do to take their chesed to the next level.
Our family will forever be makir tov to them for what they have done for us and continue to do. Every runner that signs up is essentially pledging $3600 to join the CL team. Aside from the training they do they must also raise the $$. On the link below there is a team Eli page which shows how much together the team has raised but you can click on each persons name and donate directly to their pledge. We beezrat hashem hope as a family to be there together with Eli who will be pushed in a wheelchair/stroller by one of the runners during the marathon
I look at this as a insurance plan that hopefully your donation should chas vshalom never be used towards your family or anyone you know but for us its the ultimate lifeline. Again I ask that anyone that can should please donate whatever they can “every dollar counts”. If you can donate $5 great if you can do more even better. If you can fully sponsor a runner would be amazing. There is also nothing wrong with a runner more then fulfilling their pledges for this great and worthy cause.
Anyone wishing to join the team should please email Ayalaback@gmail.com and anyone wishing to donate should please go to this link: http://www.teamlifeline.org/myteam.php?myid=88.
All I can say simply is “tizku lmitzvos”
The Gradons