- First and foremost is that current survival rates for children diagnosed with stage IV neuroblastoma are right around 30% (according to statistics provided by CureSearch). If there really were a "standard" protocol for stage IV NB with that type of current prognosis, I would be a much angrier father than I am now. So there really is no standard. There is a series of clinical trials and one hopes that with each successive trial more effective treatment is discovered.
- The next thing that blows away any concept of "standard" in NB treatment is that no two children will have the same response to therapy. So a protocol can only be followed up to a point, and that point is where a child's response to treatment deviates enough from the expected response or bounds of a trial.
- The third (and final for the purposes of this post although I'm sure I could keep adding to this list) reason that it becomes obvious there is no such thing as "standard" is the huge difference in opinion among the researchers and clinicians in what the most effective current and coming treatments are and will be.
Now there is a part of me that understands that it is a no-brainer that the doctors don't have all of the answers, but I still get a bit surprised (not quite the right word, but it will have to do) at the decisions we make on Nathan's behalf that one might think would be better made by a doctor. Or rather, I get surprised at the decisiosn we make on Nathan's behalf that no one can give us an answer or opinion that is based on solid research and science that has enough of a statistical basis to make the decision feel like much more than flipping a coin.
There is too much riding on these coin tosses and I don't much like the odds.