Another meeting with Dylan's doctor

We went to hospital today to meet with Dylan's oncologist at 10:45am. We expressed our desire for Dylan to be accepted by Sloan Kettering hospital in New York for surgery when the time comes. The doctor said he would email each of the Neuroblastoma team in New York, as he knows them all personally from when he worked there. If Sloan Kettering are happy for Dylan to start their Phase II trial, then Dylan will be admitted to the Children's hospital again, at 9am Monday morning to commence a 4 day treatment of Topotecan and Cyclohosphamide with a 5th day of fluids. 3 weeks later, provided his blood counts are o.k he will have another cycle of Topo/Cyclo, then a few weeks after that another bone marrow aspirate to see if we are getting somewhere with it. If his bone marrow becomes clear then there will be a higher chance that surgery will be possible. If we can raise the money we may be off to New York for the procedure, provided they accept him as a patient.
Unfortunately this next lot of treatment means that Dylan will most likely be in hospital on Xmas day, because by then he will be neutropenic and will most probably have a temperature as with every chemo he has had in the past. Dylan took this very well, as I explained that we will have Xmas when he gets home and Santa will come the following day regardless of the date. Cain on the other hand became very upset and cried for over an hour. He said he wants both mum, dad and Dylan at home Xmas morning. It is all so distressing for Cain, luckily the counsellor from “Very special kids” came today and was able to work Cain through his emotions. Hopefully we will be at home for Xmas day, but we have to prepare the kids in case we are not. So it looks like we will be in hospital having chemo, platelets, blood and most likely antibiotics for the rest of December through to January. Dylan's doctor did not meet with the surgeons yesterday as planned, I think he didn’t bother with seeing them due to the fact that we have made up our minds to head overseas. And I also think he knew what the outcome would be anyway, he said he doubted they would consider surgery. Dylan's doctor made a comment today regarding the information and questions I bring to him each visit, he said that I have made this my career. He always seems impressed that I have learnt so much, which he shouldn't be. I assume all parents do this, but maybe I'm wrong or maybe I am just obsessed! I research for hours every night, searching for a miracle. I cannot and must not have any regrets, that is my greatest fear if something does happen to Dylan. I need to know that I did everything possible and I don't want to find out that I missed something, after the fact. A lot of my information comes from parents in the U.S and other parts of the world who know first hand about this disease and have a stronger passion for researching it than some doctors because these are their children and not just another number or statistic. It annoys me that they tell you not to go onto the internet when you are first told that your child has cancer, I guess because there are so many sad stories and it's hard to sift out bullshit from the reality, but I am so glad that I forced myself to continue, because without it, I would not know anywhere near as much as I do now. The NB online support group has been amazing with supplying me with their experiences, knowledge and advice. These are the people that know NB best, these are parents, not doctors.

Tomorrow I will take Dylan to school, as this will be the last opportunity to say goodbye to his friends before the term ends. He will have a little party and give his teacher some well deserved presents for all her wonderful support since his diagnosis.