Thursday, July 10, 2008

Enjoying the summer

Sorry for the delay in updating. Everything is fine, we have just been enjoying the summer, Cain is on school holidays and we have been spending as much time in Long Island as possible as the Maynards are in Australia and we have the whole house to ourselves as a family. Dylan and Cain have been having lots of fun in the pool, despite the fact that this has been a really wet summer, it seems to have rained so much this year. Dylan is actually jumping in the pool and swimming now, I can't believe how well he is doing. He is funny though, he only swims with one arm because he refuses to let go of his nose LOL.

Dylan had a work up 2 weeks ago, including MIBG scan, PET scan, MRI of the brain and CT scan, Bone marrow biopsies and urine tests, all results show he continues to be stable and remains unchanged. We go to clinic in the morning to discuss the next phase of treatment with Dr Modak, I have an idea that he will start Dylan on the antibody/chemo treatment to try and get rid of HAMA, as lots of kids are now starting that new protocol. Ah chemo, not looking forward to that but it is suppose to be low dose so hopefully Dylan will not loose too much hair and not get too sick, although I know he will get neutropenic and end up in hospital, he always does even on low dose stuff. We need to keep moving forward so I will agree to this if that is what he has planned.

60 Minutes Australia has contacted me, hopefully the story will air on July 20 if no other stories come up. Unfortunately Tyla Rose passed away about a month ago, I only just found out myself. 60 minutes decided not to run the story about her, so it will be edited to just show Dylan's story along with another child from Australia who also has Neuroblastoma. Not really sure of the angle of the story now but I am sure it will be a positive one. From what I am told the other child is in Canberra and has relapsed and given no option but pallitive care in Australia, and told she will not survive.