Very early this morning, we hit the road for Pittsburgh. We plan to be back home around lunchtime. We plan to do this three times a week for the next four weeks. Twelve days of two and a half hours in the car, an hour or more in the hospital, and then another 2.5 hours in the car, all on a slim hope of buying some time.
Rebecca has qualified for a Phase 1 clinical trial of an experimental drug that might — it might, maybe, possibly, if we’re very lucky — slow or even halt the growth of her tumors for a while. Not shrink them nor eradicate them; this is not a cure. It’s a new type of treatment, not chemotherapy, but genetic trickery. Our research had led us to be very interested in this study, and thankfully we were able to secure a spot and qualify for inclusion.
The fact that it’s not chemotherapy means there should be no toxic or other negative physical side effects, which is a very high priority for us. Furthermore, for people with Rebecca’s specific genetic mutation, this drug has shown a fair amount of promise. In an earlier Phase 1 trial of the same drug as applied to adults, one patient’s tumors stopped growing for a period of years. But then, another’s tumors barely stopped growing at all. (And we don’t know which kinds of tumors responded in which ways.)
This clinical trial is the first test of the drug in children, to see if it works the same, or better, or worse, as compared to adults. It’s being managed through the Pediatric Brain Tumor Consortium. The closest PBTC site is the Children’s Hospital of Pittsburgh, where we were able to be sited. So off we go.
And we keep asking ourselves: Are we doing the right thing? Is it worth it?
It might seem like an easy choice. What’s three mornings a week against a child’s life? It’s 20-25 hours, is what it is, out of something like a hundred waking hours every week. That’s almost a quarter of her waking time spent sitting in cars and hospital rooms, instead of being at school or running around playgrounds or coloring or playing with friends and siblings.
Sitting in a car isn’t 100% wasted time, of course; it’s not like she’ll be confined to a blank beige box for the trip. She can sleep on the way there, and watch videos or play games on the way back — thank you, tablet computing industry! — or vice versa, I suppose; but it’s still a lot of time that could otherwise be invested in other, more interesting activities. So while there may be no pharmacological side effects, there are serious side effects nonetheless.
And thanks to the MRI that was done Thursday, in order to establish a baseline for the study, we know that she is quickly running out of time. The primary tumor is noticeably larger than it was five weeks ago, and the flare sites haven’t gone away. How she’s managed to avoid neurological damage, nobody is quite sure.
Given how little time she has left if untreated, if this drug adds a year to her life, then yes, it’s absolutely worth it, especially if that gives us time to qualify for a study that somehow leads to tumor reduction. But what if the drug only adds a couple of weeks? Is it worth it to extend her remaining time by fifteen percent, if a quarter of her life is spent away from friends and home?
On the other hand, what if the drug doubles her time left to live?
On the other other hand, what if it doesn’t add any time at all?
We don’t know. We can’t know. We can only guess, and try to be as rational about it as we can be even though we are, essentially, blindly choosing how quickly our child will die, and what her life will be like along the way.