Wednesday, November 2, 2016

another year passes.

In 2012 we went to scare on the square.

I was excited that all the girls were dressed in their super hero costumes, but reese was still so sick. She had been to the ER, they said she had UTIs, I was not very content in that answer, but I am not a doctor, so I guess I was wrong. She slept all the time. I barely got her awake to put on her costume. Her right arm ("bad arm") had been not working for months. Doctors sort of gave us lame answers - like saying she broke it (even had an x-ray!) and putting it in a cast. Maybe radial nerve? Maybe should get an MRI? but she had been throwing up so much that we could never get her sedated. I find it ridiculous that none of these things added up for any medical professional, but it wasn't in our time - it was in someone else's hands.

Downtown, I know now, that people saw her eyes act strangely, then, but didn't know how to tell me. It doesn't matter, of course, because when EJ saw her eye float later, they went to the ER... again... to finally get a CT scan.

Thus began the worst days of my life.

Everyone stepped up: friends, family, strangers. We were instantly surrounded by doctors and nurses and sanitizer and fear, but also by love and prayers and warmth from all over the world.

When we got there, she was actively dying in a way... as she had been for days. Her heart rate was somewhere in the 30's and 40's. She was barely responsive. The fluid in her brain was so much, but even that day she would have times of totally "okay", so as a parent it seemed insane to think it was so bad inside.

...but now we are 4 years later.

She had to get another haircut the other day bc it was getting so long and needed to be evened out. This year, the girls were "decades" and we went to scare on the square to dance the night away with our very best friends.



















We are oddly in a same type of waiting space as we have been before. Only, this time, instead of wondering what we are working with, if she will need more surgery, asking naive questions about chemo, checking to see if her body will handle her own pituitary functions... we are just waiting on a new medicine to be (hopefully!) approved while we go to dance, have dress up days at school, laugh at the dinner table, cuddle at nighttime.

4 years is a lifetime. I look back on what we've done in 4 years and am so grateful to have so many friends be by our side along the way. Here's to many more halloweens filled with dancing and laughter and love.

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.

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