I woke up this morning to New York covered in a layer of thick icing! Yes it snowed all night and it’s still snowing now. I just can’t get over how beautiful it is. I just wish Dylan could see it. There is one window in his room, but the view is not the best. I snuck outside while he was sleeping, so I could get a good look at the street. All the cars and trees are covered and people are out shoveling snow.
It is with great sadness that I tell you of a little boy, Chris Becker, who lost his battle and gained his angel wings yesterday, after 6 long years with Neuroblastoma. My heart goes out to his family:
www.caringbridge.org/fl/chrisbecker
Yesterday, Dylan won bingo again, well it was sort of a cheats game today, in fact they didn’t even play because Dylan was the only player! So he played a few board games with the volunteers and they let him choose two prizes from the bingo trolley. He chose two model cars, a silver Chevy and a yellow Nissan…he loves them. Bingo is the only thing that gets Dylan out of bed and into the playroom. Dylan also had a great treat today. A lady came in with a copy of a movie from Warner Bros, that had not been released yet and it was the movie Dylan had been hanging out to see…”Racing Stripes” After the movie, she gave him a racing stripes t-shirt and a zebra snap bracelet. Dylan loved the movie so much. Dylan has had no temperature now for 3 days, but he still has no Neutrophils, so we have to stay hospitalized. The doctor says that his Neutrophils have to be at least 0.5 before we get released, so that will take a little while yet. Once they get to 1 then he will have the next round of chemo. Daily GCSF injections continue in the hope of raising the Neutrophils faster. He continues on three antibiotics and anti nausea medication and is tolerating his feed at 15ml an hour, plus he is still on TPN (IV feeding). Dylan's weight is now 16.1kg. His platelets are 16 today, so another transfusion has been ordered. The last two days, Dylan has not really had much pain or nausea, but he has been very miserable and upset. He says he feels awful, but can’t describe it. But this morning he has woken up very happy and saying the cutest things. He said “I forgot to ring daddy last night, oh well, daddy will know that like, people forget sometimes” So cute! I just love him to bits!
I just finished reading the Herald Sun article from 25th Feb.
"Health spokeswoman Kay McNiece said the operation did not satisfy funding criteria. "A senior medical adviser and the Royal Australian College of Physicians assessed (it) and funding was not recommended, because the prospect of success was low and the treatment was experimental," she said.
Well, I have news for Kay McNiece! Dylans surgery itself, was a complete success. They removed all of Dylan's tumor and saved his kidney. If they had done their research as I did, then they would know that Dr.LaQuaglia's success rate for Neuroblastoma surgeries is the best in the world, and that he has NEVER lost a neuroblastoma patient due to surgery. As for the "experimental treatment" Dylan's oncologist in Australia said in his report to the government "Treatment for Neuroblastoma is unsatisfactory and clinical trials ARE considered a standard form of treatment"
A quote from Ava's website:
www.caringbridge.org/nc/avabrynne
"In fact, all the treatment protocols
available today are considered clinical trials"
Who are they to decide if Dylan will make it or not? What they are saying is, that if a life threatening condition has little known about it, or the only treatments that have passed all the required red tape do not work, then they will not fund treatment. So not only does the government not fund the research to get better treatment, but they won't even fund the treatment that is offered elsewhere. The government obviously has more important things to spend money on than saving children from cancer, how do you explain that to a 6 year old little boy? It really disappoints me, and all I can say is, it can happen to them too, their child can have this happen. I never thought it would ever happen to me, I always thought it was something that happened to other people. This is my wake up call, I hope for their sake that they do not have to go through the same wake up call as I have!
Thank god for the genorosity of the public, each and everyone of you that donated and continue to support Dylan's campaign have given Dylan his only chance at life, I don't know how to thank you but...
THANK YOU! XOXO
