Doctors Don't Know Much

One of the hardest lessons to learn and to continue to cope with throughout your child's prolonged treatment is that doctors really just don't know all that much. Clearly there are some illnesses and diseases, including some forms of cancer, that doctors know more about and can provide clearer answers about, but neuroblastoma isn't one of those and even if it were there would exception cases. Just after diagnosis we were led to believe that there was at least a somewhat "standard" protocol for the treatment of neuroblastoma and that was good and comforting as well as misleading. This was misleading for a couple of reasons.

1. 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.
2. 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.
3. 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.

So, for me, if you lump together all of the fear, stress, guilt, etc, etc that accompanies knowing that there is a good chance (I hold out hope, but part of me has to deal in reality too) that this disease will take my son's life, then the second most frustrating/angering/horrible/nightmarish part of all of this is that when there is no standard next step, we as parents have to make treatment decisions. We all know, at least the somewhat reasonable and responsible among us, that when we have children we are assuming an incredible responsibility to care for them, protect them, and make decisions for them in their best interests. That really slams home when faced with decisions like, "Should we have another surgery and remove the remaining tumor before going into autologous bone marrow transplant?". This is one example among many in our experiences and I chose it because it hits all three of the major points I outlined above. First, some facilities are moving to remove bone marrow transplant from their protocols while others are adding multiple transplants. Second, if Nathan had responded as the protocol had outlined and his previous surgeries had been as successful as we were led to believe, then he wouldn't have had any measurable tumor mass come transplant time. And finally, we knew when faced with this decision that we could get any number of differing opinions from various doctors.

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.