I am from Ireland. My daughter was diagnosed with neuroblastoma stage 4 Sept 2007. Her tumour was in her chest, which they say they removed 98% of it. She is coming to the end of her treament is doing brilliant. She is now on roaccutane.
I would like to be prepare if she were to relapse. I asked what the treatment here is if it happens and I was told that she would be given some chemo but it wouldn't do much good.
I looked into the antibody treatment at Sloan. I spoke to the consultant yesterday and mentioned that if she was to relapse I think I would be going to the US. He didn't take it very well. He said "your comments are very serious and thoughts like that would be very damaging to you and your family". He also said that treament is the same everywhere and I should not go around the world for what I can get here.
At the start of her treatment they asked me to sign her tumour over for research. At that stage I was overwhelmed by my daughters diagnosis I didn't give it a second thought, I said they could have it. They said I could have it withdrawn at any stage. When speaking to her consultant I said I wanted it back he said it would be there if anyone needed to look at it. I really dont think he took me serious.
As I am from Ireland any treatment in the US would not be covered by insurance. I am think of starting to fundraise here.
I am hoping that this never comes back but if it does I will have No options if I stay at home. I cannot sit around and do nothing if it happens and thats what they expect me to do.
Could anybody give me some advice. Should I start to raise the cash?
Is the antibody treatment the best for relapse or can you tell me of any more treatments?
Thanks so much for any advice you can give!!!