Too much excitement just might kill me!
We got the results of Monkey’s MRI yesterday – they can no longer see any trace of his tumor at all. So we’ve now cleared 12 months in remission, and his next MRI won’t be for 6 months!
On top of that, the preliminary report for his echo is fine, and his blood work is all normal, including his measles and rubella serologies which are consistent with vaccination (sometimes after chemo the vaccinations don’t take properly and need to be repeated).
In short, Monkey is perfectly healthy!
We also had an interesting discussion with the doctor about the nature of neuroblastoma. We’ve always thought we were lucky to have found Monkey’s cancer before it spread, but there is some evidence (as yet unproven) that suggests in his case, it wouldn’t have.
For a while, Japan was running a screening program for neuroblastoma, with the intention of catching more cases before they reached stage 4. But that didn’t happen – all they did was catch more stage 1 and 2 cancers, which causes undue stress to the families (often these stages will go away by themselves and require no treatment).
So it appears that if a neuroblastoma is going to be stage 4, it is ‘born’ that way.
Which is not to say that stage 3 tumors can’t cause problems – of course they can, and do, especially if the biology of the tumor is N-MYC amplified.
But I think that it is valuable for people to know that the stage of these cancers seems to be determined right from the start. I am sure that if Monkey’s diagnosis had been stage 4, we would have been blaming ourselves for not noticing it earlier, when in fact that would not have changed the situation.
On a vaguely related note, I now have 2 ideas for things I can do to help families with kids in treatment, and I’m considering starting a nonprofit organization. Does anyone have experience with this (bearing in mind I’m in Australia)? I hear it’s kind of a pain in the ass… Is it worth it? Also I’m having trouble finding the legal advice I need (can’t even determine what kind of lawyer I should be asking!) – any lawyers out there? Leave me a comment and I’ll email you with more details.