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.

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

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.

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.

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!