Wednesday, October 26, 2016

the end of "ish".

December 2014, I felt the weight of the world, again, when we were told that Reese needed to be back on chemo. We had been off babyPOG for like 7-8 months, taken her port out, and finally gotten into the groove of being "normal" again. I knew, though, going into the December 2014 MRI that something was wrong. I saw things that I, after finding out we'd get a new port and start vinblastine,  never saw again. Signs that gave me grace to just needing to know that I was right, even if it was not the news anyone wants to hear.

After that MRI, though, things never felt as heavy going into each scan. We spent each one watching her tumor change, but not necessarily *bad*, but just different. Small growth here, shrinkage there. It was stable "ish" and I was totally okay with that. She isn't symptomatic day to day so just hanging out in this zone was fine by us. The thing about scans is that you have to compare to previous scans further back than the last one - and they compared to the October 2015 scan yesterday. Basically we are done with vinblastine. I knew already, though, that it was coming. I braced myself for yesterday's change and was almost excited about our new path when I left. I didn't want to hear 15% growth in the past year (which is relative, I guess, until I have actual images to show you), but we worked really hard 2012-2014 to get to where we were when we started vinblastine - and I definitely would not want to lose ground on it now.

Summer 2015, we did the FoundationOne genetic profiling on pieces of Reese's tumor from 2012 surgeries. That's when we found out that her tumor cells have the BRAF v600e mutation. There are specific inhibitors for that mutation and one of them is called Dabrafenib. It is a pill 2x a day. There's no taking Reese out of school for chemo, no labs every week. There really aren't a lot of side effects that I have read while being an internet oncologist (lol) - and the side effects that do exist are totally manageable. As I told the doctors, we've been practicing swallowing pills for months for this change. I just didn't know when we'd actually need the talent. 

Having a plan in place stopped me from having tears, forbade me from even feeling sorry for myself. We are 4 years into Reese's journey, but I am decades from the emotions that I used to feel most of the time. There's so much more action in my thoughts than there is sadness or fear. I can't quite explain to you where a mom of a brain tumor child's mind goes when things are quiet or when a scan or treatment plan is up in the air. It's morbid, really. Have you ever thought to yourself "what would she wear if she died?" or "would I sleep with her foxy if she wasn't here anymore?" and those thoughts compound every fear and sadness that exists when you're waiting for what's next. It isn't as if I don't think about those things in the depths of my nighttime heart or that I don't feel sick waiting for results, but it is a different beast when you can conceptualize what your child will do next. 

Today I will have excitement for things to come with this drug that is matched to her specific tumor. And with plans come more plans... and just in case plans. and years later plans. and safety net plans. But for me, soon, we will live pill to pill, scan to scan and I pray that the weight that I have shed, on my shoulders for so long, continues to feel lighter and lighter. There are amazing results out there for this drug and I hope to see Reese among those statistics. 


  1. You are all very loved, Amanda! Always in my prayers.

  2. Praying that this new drug will do its work!