Here is Jeff’s and my torture of the week . . .
When the clinical trial option was offered to Jeff and I, we really did our homework. We actually obtained the entire 381-page protocol and Jeff read the entire thing. I read the sections that applied to Nico, which was still a very large chunk. We then consulted with numerous parents (several had a child that received the experimental therapy) and spoke with several different physicians (including two pediatricians, a neurologist and a neuro-oncologist). And as a previous post mentioned, by the time we were done, not only were Jeff and I all right with Nico receiving the “experimental” combination intrathecal medication, we desperately wanted him to receive this option (versus the standard single intrathecal). I type quotations around experimental because the combination therapy has actually been used in other protocols for many years. So, we drew the short (or at least unwanted) straw and got the standard single.
We have not taken this well. Even though we knew it was a possibility. There are probably a lot of elements at play, but it has been disappointment after bad news after disappointment after bad news. And it feels like we have absolutely no control over any aspect of our lives anymore. So after much discussion and study, we approached our physician and essentially begged for the triple therapy anyway. I believe Jeff started the conversation with, “What waiver do I have to sign to get the triple?” Our doctor, who is one of the most diplomatic physicians I have ever met replied, “I am not doing it” the instant the Jeff got his last word out. What then transpired was a very intense, heavy, and long discussion that still feels totally unresolved even though there is nothing more to say.
From the research that we have read, both Jeff and I believe that the triple will end up as the standard of care, but this clinical trial probably won’t reach that conclusion for another three to five years. From the research done at St. Jude’s over a six-year period, this triple, in combination with the current chemotherapy backbone, could COMPLETELY eliminate central nervous system relapse in high-risk children. That would increase the disease-free survival from 88-90% to 91-93%. The difference in these numbers was not significant to me before I had a child with a life-threatening condition. Now there is an entire world of difference in 3%.
If you are thinking that we should not dwell on relapse, I will venture a guess that you do not have a child with ALL (acute lymphoblastic leukemia). Like I said before, 95% of ALL children are in remission at the end of the first 30 days of treatment. The next three and a half YEARS of chemo exist solely to prevent relapse. When you read any ALL literature, speak to any ALL parents, what you are going to hear 99% of the time is about relapse. That is what makes this disease so especially evil – it hides, waits and rears its ugly head years after it was supposed to be gone. And if your child relapses, you are not looking at the lovely 90+% survival rates any longer. You are looking at a whole different monster.
So, of course, we want to do everything that we can to prevent relapse, even if it means exposing Nico to more medications in the present. Every single ALL parent with whom we communicated said they would prefer the triple. Every single one of them and we posted the question on a list serv of ALL parents.
The kicker is that both Jeff and I completely understand and even respect our oncologist’s position. The bottom line is that he never deviates from the standard unless the child is in a clinical trial. He is not willing to essentially create his own protocols based on parents’ predictions of what the best care might be in the future. Yes, this is 100% logical. He is the point person for these clinical trials at our hospital, and he said that he was comfortable offering the option of the triple, but that he would not offer the option outside that clinical trial. Period. Jeff asked the doctor, “What if this happened to your child? Would he get the triple?” Without pause, the doctor stated that he would not deviate from the standard of care outside a clinical trial even for his own child. We both believed him. It is a hard line and judging by the swiftness of his answer he drew that line a long time ago. He is following the standard of care, and we all know (especially those of us that went to law school) that this is considered the best practice. That being said, Jeff and I would do anything to prevent our child from relapsing, especially in the cerebrospinal fluid. Our doctor was sensitive to that. He told us over and over that he understood, but he also stressed that there was only a three percent chance. Three percent never seemed so enormous to us, but we understand his point.
It is a strange dichotomy. I think we might actually respect our doctor more for his position and for how compassionately he told us “Hell no!” But we would still both prefer that Nico get what appears the superior treatment (in a very large and long study by a very reputable children’s cancer research hospital). So we are left with the choice of leaving a doctor that we personally like a lot and really trust to find a doctor with questionable professional ethics that will do what we want (as non-oncologists, non-pediatricians and non-doctors). On paper it looks easy. In real life, it is miserable. We have to hope that this imperfect and cruel cure will work. We have to hope that our child won’t be one of the children that will inevitably play the role of sacrificial lamb in determining what treatment will be in the future of this evil disease.
As parents, we believe that it is our responsibility to make certain that Nico gets the best possible treatment. But what do we know about what the best possible treatment is? Maybe the best treatment is just finding a doctor that you respect, trust and believe is committed to providing the best care as it exists at present? Or maybe you follow your intuition and do something that looks illogical on its face trusting that you know what is best for your child? That has not actually worked well for us in the past, but that is a whole other post.
There is nothing easy in feeling powerless.