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. 

Monday, October 24, 2016

another october.

I received the best compliment the other day. "Your kids are all so different and you let each one of them be who they are..."

I like to think that I do that, but to hear it from someone else just made my heart swell. I have had Reese's ARD and parent teacher conferences these past few days and it really never gets old hearing how awesome your kids are. No matter the accommodations made, test scores that fluctuate, whatever it may be - they make me proud by being good friends, hard workers, and letting their nerdy/sassy/silly freak flags fly.

Tomorrow Reese has another MRI. We have been on vinblastine for something like 95? weeks. I don't know, but this will be like the 7th MRI just on this protocol alone. I always sort of secretly laugh when someone says that they opted out of a CT or MRI for their kid's big fall or what not because of "possible radiation!!!" and here Reese will be, again tomorrow, sitting in that MRI for 2 hours - but don't worry, she has been counting down for a week at least. She still loves "going to bubblegum" so much and honestly just can't believe that its MRI *and* taco tuesday tomorrow. Best day ever, she said. I agree. Or rather, I will agree when we get stable results.

On the house front, I am pretty settled overall. We are slowly hanging things on the wall, getting new prints, still purging things that I thought I may want to keep, but actually don't. I need to get a porch set of some sort so I can sit outside and drink my coffee as the fall rolls in and blows all the leaves off of my trees for EJ to rake... (lol). and more rugs... I always need more rugs. so link me those!

As always, prayers loved and wanted wished for.


Monday, October 17, 2016

time passes.

I really can't believe that it is October. and also that I haven't blogged here since July. This is the first time (and last time) in years that this has happened and it's almost because there's not much to report.

But then again, here I am sitting in my new house because we moved, after sending my kids to school to a new year that I didn't post about, and coming up on yet another MRI. We went to Colorado on an amazing trip with friends, we had a dance convention in Oklahoma, and the tiny details in between are a laundry list long because, well, a lot can happen in 3 months... I wish I had written it all down here, though.

Live and learn.

Reese is feeling awesome. First grade is amazing and she is learning so much and seemingly catching on a bit quicker than last year. We are in somewhere of 95 or so weeks of vinblastine... no real side effects at all and it seems so surreal that we've been on this journey for almost 4 years. Reese graduated from PT at school today (officially friday when she has her yearly ARD). The therapist remind me what the goals of her first ARD was.... "to get off of a chair on her own". ha. She couldn't even walk... but now, graduating. She still has OT and speech and adaptive PE if needed, but overall, there's nothing more they need to do on their end.

Aidan and Sawyer are both on dance company and in 4th/3rd grade. Aidan's favorite things are her GT classes. Sawyer's would be math, I think. and wherever she can socialize. They both went to Oklahoma for dance and rocked my socks off with their smiles and talent. Aidan was a scholarship finalist for her age group and she was so proud of herself.

Miller and Corbin are both in gymnastics preschool and loving it. 2 days a week I actually have time alone - which, by the way, I hadn't had since Aidan was born. I have had a baby at home with me every single time I sent another off to preschool, but not this time. It was a strange thing at first, but I seem to fill the days with everything that I forget otherwise and by the time it is pick up, I feel as if time has flown.

Aidan, Sawyer, Reese and I drove to Colorado (trail west) for a retreat with our wonderful friends Samantha, Avery, and AJ. The pictures should sum it up nicely, but it was just a great time in the outdoors appreciating all that God had made. We jeeped, we zip lined, we rode horses, we sang songs and played games. We laughed a lot and ate a lot and overall just had a smiley good time.

While I was in Colorado, putzing during nap time on the internet, I sent EJ a link to a house. Long story short: he looked, he liked, we sold to a friend wanting our floor plan, we bought, we moved, we are here. We have only been living here a week and it is seriously a dream come true. I loved my old house, but we bought historic this time and it has so much character and life inside. The kids are just in love as well - which makes it that much better. I am like 85% put together on the inside of this new place and so that keeps me at peace.

I guess this is more of an informational post... I need to post the pics and get out of here and work on things I really want to say for my next post. MRI a week from tomorrow.

IG: theskelteseven