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. 

IG: www.instagram.com/theskelteseven

a lot of nothing.

I feel like we are in a holding point, right now. Which is fine, of course, that things seem to be going well in most areas. Softball, for sawyer has started. Aidan's dance competition season has ended, but now all except for corbin are learning their recital dances for the end of May.

We are still weekly vinblastine. Reese is just truckin' along, week by week, school every day, chemo on tuesdays, therapy... We had her transitional ARD meeting a little bit ago and we are all good to go for kindergarten next year. Her IEP is filled with ever so slight adjustments that will help her be the smallest, the kid in the boot, unable to write, still needing speech, but all the while, totally mainstream.

Reese had an appointment with her doctors, downtown, on tuesday and all is well. Her next MRI is May 5 - and we will go back up after to either 1. do chemo, like we are supposed to that day or 2. talk about a new protocol if the MRI isn't as good as expected. Have a stable tumor and being able to stay on vinblastine is obviously my prayer. I hope it can be yours, too.

I feel like the spring is filled with so much. I look at my planner, every week, and it is filled with appointments, shoots, practices and games, dress rehearsals and then vacation. The hospital has asked me to speak at a fundraising event in a couple weeks and while I am nervous, I will feel much better when I start immersing myself in the actual writing portion ;) Luckily, this is my jam and I am truly excited to get my thoughts and brainstorming on paper. I can't decide whether I want to read and re-read it to desensitize myself or just let the emotions go, as I need to. We will see how weepy I get and maybe that will lean me one way or another ;)

Corbs walks 100% of the time, but her knee fat is impeccable. Miller wears 2 different shoes most of the time and sunglasses to shade herself from the awesome. Sawyer is doing so much better in school, but will likely be known for her cheetah heels, forever. and Aidan is getting ready to try out for her school talent show, which hopefully will build some solo-type confidence.

I feel like there's always so much "hurry up and wait", but right now its more of a "hang out as is" and so I am going to relish in it.

IG: theskelteseven

illustrated.

This has been a good week. I feel as if I should have updated here about what the plan for chemo is. :)

We are continuing the vinblastine. When the oncologist called, basically they were unimpressed with the "growth" and don't want to call vinblastine a fail yet. Her head was in a different position and "it's been said" that vinblastine needs a bit of time - so we'll see. I agree with them and am really happy with this. Her next MRI will be the same time as our make-a-wish disney cruise - so I will have to decide (sort of, I mean, who knows when they will actually have an opening) if I want to know before or after vacation how it is continuing to work. I hope we can do it before, though - I am the type of girl who needs to "know". and wants a plan.

This is spring break and my patience has been tried during the gray and rainy days. But today was sun and full of glorious smiles. I hope the rest of the week continues to be as wonderful. Being off routine is hard, chemo yesterday (luckily it was quick and easy), and this past weekend. When we got reese's counts back yesterday, they were lower than they had been  - I am hoping and praying this was vinblastine's way to say "hey, I am doing my job..." ;)

If you are following me on instagram, you may have seen some doodling that I have been doing.

after reese had her discouraging MRI in december, A friend of mine contacted me with a great idea.

throw kindness like confetti.

she asked if I would be the recipient family for her kindness calendar. oh what a month it was - cards with amazing words of hope and love, gifts for the girls, encouragement for us. It really is such a sweet thing that she is doing and I hope it catches like wildfire.

One of the things my sweet friend does in her bible is journaling. If you look at #biblejournaling or #illustratedfaith on instagram, you will see hundreds of inspirational women with gorgeous art work in their bibles. The concept is this - while you're reading, doing your bible study (beth moore's children of the day, here), needing a certain verse to get you through a difficult time, whatever it may be -and something stands out at you... go with it.


Things I use:

A Journaling Bible
Micron Pens
No-bleed Gel Highlighters.
Watercolors.
Washi Tape.
Twistable Colored Pencils.
Alphabet Wooden Stamps.
Clear Stamps and Stamping Block.
and really anything you can find at a craft store.

I am a simple gal who doesn't use a lot of the crafting supplies like stickers and such, but you can see on IG how many women go absolutely nuts with those things.

Anyway, sort of an explanation since so many people have asked me on IG :)

quick update.

Waiting is the worst. No matter you find out good news, bad news... the wait on which it will be, is the worst part.

Our onc called last night before I went to bed and it was just news that requires more waiting and thinking. The radiologist said "slight growth". Then the oncs looked at it and were sort of "ehh" about it. Not that they totally disagree, but we'll see.

Tumor board is tomorrow. Which I always try to picture in my head and sort of have this overdone concept of what it is, but basically it's this: all the oncs, the neuro surgeons, radiologists, whoever sit around and go through patients. They talk about our scans, how we're doing, etc. So tomorrow, the radiologist will present (ish) reese's MRI. If there is some overwhelming "ooooh you're right that is growth worth worrying about!!" then we will swap treatments/chemo.

I am not certain, and neither are the oncs, that it's time to give up on vinblastine, though. It has been said by some that vinblastine MRIs sometimes have growth at the beginning and then stable out the rest of the time. Has it done part of the job? Maybe. It surely didn't grow like it did from Sept through December, right? I don't know, exactly when it grew. Maybe this was from the last MRI through the beginning of chemo. There is no way to know those things. So we'll just see, tomorrow, if we want to give it more time. That is not necessarily to say that it is a life-long fixer, but that stable year with this "easy" chemo, sounds amazing. And with a child that feels 100% awesome, it's not a bad idea to keep at it and do another MRI in 6-8w, as they stated. Our onc will talk to his colleagues and knowledgable friends in high places (lol) and we will talk tomorrow.

I don't feel as if it is my time to worry right now. Again, even after being somewhat surprised bc reese feels/acts perfect, I feel a sense of relief gaining more information. I like to be fully informed, I like that I have doctors that talk with me and not to me. I like to research and ask questions and have a list of things that are potentially "next". I am the type to get 2nd, 3rd, 10th opinions just to hear "yes, I agree with them".  I will spend the rest of the day talking like I am an oncologist while I wait for the real ones to chat me up. So, until tomorrow, there's really nothing else.

Except this headband that the kids made for reese. There's that.
 

time passes.

time passes and we are still doing the same thing. i realized i had not blogged in a few weeks and i thought "well so much has happened..."

but really, no. an ER fever trip here, a dance competition there. trips to ikea or to chemo. and while all very significant, each moment important by itself, and in line with our daily lives, its like time just whisks by and i move on to the next thing without much appreciation for what was.

i sat down to look at the photos i had taken over the past few weeks. so many wonderful moments that i rarely even edited. i don't know if i am just not motivated right now, but it just felt tasking. then tonight, i felt the need to get it all done. i am overwhelmed with other things and editing and uploading each photo felt like a check mark on a to-do list.



we had one trip to the ER a week ago sunday. "raging ear infection" is what they said. aidan came with, per reese's request. she is such an angel to her sister. reese asks for aidan when she's sad and they have a very special bond.

i watched aidan shine this weekend at her dance competition. i told her we weren't getting a hotel and were just going to drive in early and she nearly lost her mind on that idea (lol). her favorite thing is to get a hotel and just spend the night with me. no one else. and so, with some help of a friend, we got a quick room across the street from convention/competition and we got to just relax and play.



i love watching her do all of her dances. i love watching her try her hardest at convention. they won 3 golds and 1st place for junior small group (their tap). i am so proud of the girl that she has become. her heart is bigger than life.



miller turns 3 this week and that seems mind-boggling to me in a few ways. 1. how has it been 3 years? and 2. i feel like she's been a 3 year old for 18 months haha

she is funny. she is sassy. she is smart. beyond smart. she talks so much. and she is reese's bff.


but tonight, reese is in sawyer's room. reese went to bed alone and then came out of her room only to be scooped up by the whispers of "tell mom you want to come in here...". i say okay and know the almost immediately, reese will be snug as a bug in sawyer's bed with her dozens of blankets. sawyer shares her "chloe" and reese will feel totally safe.




writing this blog has lifted my stress-filled heart. because none of the things i was worried about matter. corbin took her first REAL steps today. not stumbles that ended up with a lean forward, but meaningful steps toward her sister. tomorrow, we will have school, ill make dinner, we'll go to dance. another day will pass with moments that seem insignificant at the time, but as time passes, and i look back, its easy to see that each second has a purpose.


my goal for this week is to take note. to remember that the love that the girls have for each other is compounding and important with every breath. that every errand we do, every chemo we go to, every hug that we squeeze. its all intertwined into our story. nothing left out. and that the stress of each day should leave with the morning and not return.

because "miller, wash my back?" will only be said for so long.