I've been wanting to write this post for a while, and couldn't think of a better time than on Thanksgiving. Of course that didn't happen, and here I am getting around to it five days later...
I'm part of an email support group for Craniopharyngioma patients and their caregivers. Lately it's been pretty active, as there are unfortunately three new members who were recently diagnosed with the same tumor as Summer. I can't give any specifics, but between their stories and those who reply with their own, I've been reminded of how bad it could have been for us.
There are a whole bunch of scary things we avoided by pure luck. Well, luck and the help of our amazing team at Seattle Children's. I've been reading about three-month long stays in the ICU, life-threatening conditions caused by brain tumor removal surgeries, significant short-term memory loss and hallucinations, among other things.
The problems many of these families face are the direct result of aggressive surgeries to remove the tumor. It makes me so angry to hear these stories knowing what I know now - that the outcomes of aggressive surgery and minimal surgery combined with radiation (like Summer had) are virtually identical, except for the huge quality of life problems that come with the former. But apparently, not all doctors know that. In fact, it seems it's often the Craniopharyngioma 'experts' who recommend aggressive surgery, simply because it's how they've been doing it for years and years.
Thankfully, Summer's neurosurgeon knew better. We are so lucky that he was the one on call that night exactly one year and seven months ago, when Summer had her first surgery. We didn't have time to research anything before jumping right in, since there was literally an hour and a half between diagnosis and surgery. We simply took his word for it that minimal surgery, with the main goal of decompressing the cyst, not removing the tumor, was the way to go. I don't think we even asked if there were any other options. We were too emotional and in too much shock to do anything but try to absorb what he told us. Thankfully, his recommendation seems to have been the right one for us. I am thankful for that every day.
It's not often I have time to sit and reflect on everything we've been through since Summer's diagnosis. And honestly, most of the time I try not to because it's just too much. But this time of year, and with these reminders of how lucky we are, how could I not?
I hope you all had a wonderful Thanksgiving! We have some appointments coming up tomorrow and Thursday, so I'll write a medical update post later this week.
