7/17/14

We got to MSKCC a few minutes late but BH it didn’t affect our wait time. They took Eli right in for the MIBG scan which took a solid 2 hours. By the end of the scan rightfully so Eli was frustrated but pulled thru as he always does. We got the results of yesterdays blood counts which showed that Eli is neutropenic and therefore needed a dreaded shot to help boost his blood levels. It isn’t fun telling Eli he needs a shot and it took a while to calm him down once that was done. We were then given a the bucket for a 6 hour urine test and headed back to our cousins.

After resting and relaxing we headed back to MSKCC as we needed to drop off the urine test today. Unlucky for us this clown that calls himself president was in NYC and caused a traffic nightmare. So our plans to visit Bubby in Boro Park had to be cancelled until Sunday. We went back to our cousins place and Eli once again had a great time with the cousins. Very few people know hachnasas orchim the way our cousins do and it has made coming to NY as easy as possible.

Friday morning there is one more short scan and then we will head upstairs where Eli will IYH be getting a platelet transfusion as well as possibly also a blood transfusion but that’s hasn’t been decided yet. We will then meet the DR to get the results of the scans beezrat hahsem. Hopefully the day will go smooth and we will be out at a normal hour so we can make it to Lakewood for Shabos.

We have been davening for good results of the MIBG therapy and hopefully we will get exactly that on Friday or whenever we meet the DR. Please continue to have Elimelech Ben Basya in all your tefilos

7/16/14

I hate giving myself or Eli an Ayin Hora but today was something special. Eli woke up late because he went to sleep so late and we headed right to MSKCC where finally we were lucky and everything started and ended on time with no surprises. We got there on time by 1PM and we were out after having labs done, MIBG injections and a 30 minutes scan by 3:30. We were then met by a close friend and his family at the Central Park Zoo which Eli loved and acted like a big brother to their child.

Next it was back to Elis favorite steak house in NYC where he ate more then he’s eaten in a long while and kept all of us entertained. We then finally got back to out 5+ Star accommodations where Eli had a blast playing with our cousins. All in all I can just hope and pray that aside from the hospital part we have every day like today with the energy and humor that Eli showed today. HALEVAY VAYTER.

Thursday morning at 10AM is the big MIBG scan which will take about 2 hours. I’m not sure if there will be other appointments like a blood or platelet transfusion as well but we will find that out when we get there. IYH we will get the good results on Friday and will then learn the next phase of treatment which beezrat hashem will be MIBG therapy starting again with in patient check in on Monday.

Elimelech Ben Basya lrefua shelayma bsoch shaar choley yisroel.

7/15/14

After an extremely long day of traveling we have finally made it to NY. Due to weather our flight was delayed over 4 hours until we were finally able to board. It took over 12 hours door to door but we made it. BH Eli didn’t kvetch once and did very well. We look forward to a good night sleep before we need to be at MSKCC at 1PM.

Thanks once again to Chai Lifeline for arranging an amazing comfortable flight and for all they do and mean to us.

Please continue having Elimelech Ben Basya in all your tefilos.

7/14/14

For the last week or so until Sunday we have been very worried about Eli not really being able to walk properly. We took a x-ray at CHLA which was negative for any fractures but with it not improving it had the DRs worried. Bli ayin hora while its not back to the way it should be its a lot better and Eli is back to being able to get around on his own.
Eli made his rounds with Bassy, camp and myself with many special outings to places of his choice and we all enjoyed his humor on these occasions. One day it was to a steak house another day to camp another day to the beach and Sunday on a big fishing trip which we all loved.

Monday morning was back to CHLA for a blood and platelet check to make sure all is ok before we head back to NY on Tuesday and BH we did this because Eli was low on both blood and platelets and he got both transfusions in a timely manner.

Tuesday 7/15 at noon is our flight back to NY for scans scheduled for 7/16,17,18 with the main one being the MIBG scan on 7/17. We hope to have the good results before shabos. Based on these results which beezrat hashem will show a lot of improvement from the MIBG therapy they will see if they can repeat the therapy one last time. The hope is that it will be good and that Eli will check back into MSKCC for the therapy on 7/21-25 and if all goes well back home on 7/27.

This evening we were zoche to have a very special visit from the Dushinsky Rebbe in our home. He came last year also when Eli was in CHLA and reiterated his brocha that he gave then that he wants Eli to visit him in EY. The rebbe and his chevra also sang a few songs which Eli really appreciated and enjoyed. He then showered Eli with many brochos for refua.

Please now more then ever have Elimelech Ben Basya and all cholim in all your tefilos and we look forward to seeing a refua shelayma bkarov to all. AMEN

7/8/14

The last few days for the most part have been pretty good for Eli bli ayin hora. He made it to camp for short periods of time and enjoyed some trips with camp and some alone with us.

His blood and platelet counts continue to be very low and after seeing how low they were Monday the DR had us come in today to have both blood and platelet transfusions. Once he was at CHLA they also did an x-ray on his foot which he has been limping on a lot but BH that came back negative for any fractures.

Fortunately for her knowledge but unfortunately for her lack of communication the DR Eli had when he was diagnosed took off a year + to do research and is now back. The communication with the DR that took over in the interim was really good and he was always there to answer our questions and concerns. The old DR came back 7/1 and already today it clearly showed. Instead of the transfusion starting right away it took 2 extra hours for her to just sign off on the orders which gets very easily frustrating for both Eli and us. So instead of it being 3-4 hours in CHLA it was closer to 7 hours by the time all was done.

The same goes for the DR in MSKCC we have been emailing calling and begging to get all the info correct so that we can schedule everything properly and get back at the earliest possible time but of course we just simply can’t get a response. Eli needs a new line as he currently has a temporary line and since they are going to need to give Eli anesthesia when putting in the catheter we have been asking since the day they put it in that when we come back now for IYH round 2 of MIBG therapy. That to no confirmation and almost just the opposite the nurse has said well why don’t you just do it in LA which is crazy because how many times are we going to have to put Eli under anesthesia. Also it would require being in CHLA 24-48 hours which would be additional time.

Anyway to put it in short we are looking and davening for answers and direction and IYH next week once we get to NY we will have all of them by then. In the meantime please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.

7/1/14

Elis home health nurse was here on Monday and we got the results on Tuesday AM that BH he doesn’t need a blood transfusion. His platelet count is very low but they don’t want to keep giving platelets unless he really needs it. They don’t anticipate Eli needing a blood transfusion this week.

Today we requested from the DRs in NY to schedule us for the MIBG scans and beezrat hashem therapy in a shorter period of time. Unfortunately its not going to be possible due to the fact that after the scans it needs to be read by a radiologist and then sent to nuclear medicine and based on what he sees they need to order the MIBG therapy dose which itself takes a day or 2 to make specially for each patient. In other words we will hopefully only be there for the period scheduled of 7/15-27.

Please continue having Elimelech Ben Basya, Chaya Mushka Bas Haddasa Shayna, Golda Bas Miriam bsoch shaar choley yisroel in all your tefilos.

6/30/14

This morning the jewish world was shocked and saddened by the gruesome news of 3 young innocent boys brutally murdered for one reason their religion. While the internet, blogs, whats app etc all speculate on when it happened, and what the low life president of America will or won’t say and what the PM of Israel will decide on what retaliation is necessary most of the world forgets the real tragedy here which is that 3 families and many extended families will NEVER be the same and there won’t go a minute of their lives that their family member will be forgotten. While the rest of the world looks for the latest updates, picture or hash tag one thing will always remain Yishmaaylim are nothing less then simple murderers that have less of a heart then the dust we step on. They are people that have no problem literally beheading or stoning their own family members because they may of married someone that the family didn’t approve of. They will torture little children and any human being that don’t adhere to their insane rules.

Now the simple question is what am I doing writing this on a blog of a child that has relapsed neuroblastoma? The answer is many people myself included have used the internet and any means we have to see statistics and then decide for themselves the outcome or what we can expect. What the world doesn’t realize is that there almost is no family and sadly there will be no family left in the world within a few years that cancer hasn’t affected. Everyone unfortunately will have a parent, grandparent, uncle, aunt, cousin, nephew, niece or child in their lifetime that will be affected by this horrible machla. No one that suffered or suffers from it will ever be the same even after their full recovery. No family will ever forget what the family member went or is going thru. For a human being to walk into a Childrens Hospital and see the pain and suffering that innocent children go thru and be able to walk out without permanent damage to their own head is simply not possible.

Now the point of all this is that I’m trying to bring to others attention. One is anyone but someone that they themselves have gone thru a tragedy like the one the world found out today of or a tragedy of a family member suffering from this machla has no clue what the family may possibly be going thru. The world needs to understand and know that 40+ children a day are diagnosed with some sort of this machla. 40 families which calculates to hundreds of people are affected permanently daily by sad news. To try to comprehend it think of the worst thing that has ever happened to you and times that by a million and it lasts every second of every day until 120.

The main reason I bring this up to bring to attention the fact that while everyone thinks of what can we do in light of today’s never ending tragedies. Every city has organizations that do chesed yet nearly every organization is under funded. 18 months ago we had no clue as to what these organizations mean or do yet the minute we needed them they were always all there. Nearly every meshulach that comes to your door has a driver yet we never question how much of our dollar is actually getting to the organization. But when it comes to our own local organizations we always say well they don’t use every dollar appropriately or they have a main donor or their volunteers don’t dress tzniusdik or that organization is for a different crowd. WAKE UP and realize that there are these unreal organizations that’s chasadim know no boundaries and have done so much for us. There is food always as much as we want. There is yidish blood whenever we need. There are bills being paid for. There are flights, hotels and arrangements being made. There are camps for special children. DRs that are impossible to get into are being accessed within a few hours. Children are entertained by groups, babysitters volunteer, housing close to hospitals are arranged. The chesed is unreal yet so under rated.

So to everyone that asks what can we do in face of today’s nightmare tragedy that I hope no one forgets. Give tzedaka. Give to a local organization as a “insurance” that beezrat hashem you will never use and that hopefully we will never need again. If you can’t give $ then volunteer. Volunteer to donate blood, to drive someone to a DR, to make a meal for a needy family, to deliver food, visit someone that no one else cares to visit, donate your time at a organization function.

Stop judging what someone else is doing and making hakpados and frunkeiten on the silliest things that mean nothing to gd or anyone. Letters to the 3 kedoshim online thru your facebook or social media isn’t getting to them. Your hash tags are all useless. Its time for the world to be doing a lot more chesed and helping others in any shape or form. ה׳ עוז לעמו יתן, ה יברך את עמו בשלום!

6/27/14

There hasn’t been much to update and that’s the reason there hasn’t been an update. Eli BH has been at home since getting back from NY and like we were told by the DRs in NY that the MIBG therapy would hit as time goes on it seems like its doing just that. Eli hasn’t been physically able to do much and is pretty weak but BH in a good mood. We did get out a few times to try going together as a family for an outing but it didn’t last very long but enjoyed the little time we had.
Elis blood that was drawn on Thursday had low hemoglobin and therefore we were in CHLA today for a blood transfusion. Its a long slow 4-6 hour process but beezrat hashem it will do what its meant to do.

Other then that we are trying to get the schedule from MSKCC which as it stands now has us in NY from 7/15-27 for scans which we daven daily will show a good change so that they can repeat the MIBG therapy after the scans. Scans are scheduled for 7/16,17,18 and in patient IYH 7/21-25 and then back to LA on 7/27 in a perfect world.

Please continue as always having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos. A GUT SHABOS

6/19/14

We got back from NY Wed evening and enjoyed a quiet relaxed night at home. This morning it was back to CHLA to check Elis blood/platelet counts which we were warned would probably drop significantly over the next month or so. Both were very low and Eli received a blood transfusion. They didn’t give a platelet transfusion as they will let it drop a little more before doing that. BH once Eli was home late this afternoon you can see that he regained some color and strength as a result of the transfusion.

There is nothing on the schedule other then keeping a close eye on Elis counts until we return to NY on 7/15 for scans and then beezrat hashem followed again by MIBG therapy.

Anyone who can donate blood on behalf of Eli should please call Bikur Cholim at 323-852-1900 to coordinate. Tizku lmitzvos

Please as always continue having Elimelech Ben Basya in all your tefilos

6/17/14

We are looking forward to leaving NY on Wed and head back home and try to get back to a little normalcy as a family. Its been a long and draining 11+ days but BH we accomplished what we came here for. Today’s was especially draining as Elis blood and platelet counts have already begun to drop pretty significantly. We had a 10 minute MIBG scan this AM and were about to leave MSKCC when the nurse told us to wait for a few minutes because the DR needed to see Eli. Well that few minutes turned into literally over 3 boring hours of waiting for a 5 minute consult where we were told nothing but per the protocol the DR needed to see Eli.

The good news is that Eli is excited and looking forward to get home and even more so because thru this amazing organization called Corporate Angels they have arranged to fly us home on a private jet to Van Nuys airport. YAY!! Thursday it is back to CHLA for most probably a platelet and or blood transfusions which they think he may need weekly for the next month or so and even also possibly stem cells to keep his blood counts above zero as a result of this MIBG therapy he just got.

Eli got to see all of our immediate family, cousins, uncles, aunts and many friends over this trip and he and we really appreciated every ones going out of their way for us and for making Eli feel special. Once again a huge thank you to our home away from home Ruvy and Rivkeleh and family for the most amazing hospitality. Also to my brother and sister in law in Lakewood. To zaidy and bubby Ribiat in Lakewood and to all our siblings in Lakewood, Monsey and Brooklyn who arranged so much to make sure everyone got to see Eli. It was very special and very much appreciated. IYH looking forward the next time to see everyone only for Simchas.

Please as always continue to have Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.