Friday, April 29, 2016

another stable day.

It took longer to say hi to me this time at clinic after the MRI. This, likely has nothing to do with me and more to do with being busy with, ya know, other people. But it sort of made our hearts palpitate a bit more.

I called EJ and he felt like he needed to leave the office for a bit - which is weird bc he never gets anxious about MRIs. Or, rather, he doesn't tell me that he is. So, this sort of sent me in a nervous spiral until finally they came in and said the sweetest word of STABLE.

Now, our stable is sort of different than other stables, maybe?

Reese's tumor moves all of the time. Sometimes smaller one way, and bigger another. And then the next month will be opposite. Sometimes it will shrink and then fill back in. Sometimes it won't. We look at similar slices every month so we can get see what actually is moving and decide if we want to stay on vinblastine or not. But again, we do.  (don't judge size by my terrible outlining down below).


But you can see that generally its not a huge difference - and that we can push time on vinblastine even longer - which is essentially the point for now. 


I get a lot of questions about "well what will you do next?"and that answer is the inhibitor(s) that are used for her BRAF mutation (v600e for my fellow momcologists). That is a daily pill for something like 2 years, assuming that it continues to do it's job for that long. 

Next MRI is in 3 months - which is forever away, of course, but when July hits, I will feel as if we were just here

Follow daily on instagram. and always comment or email w any questions. 



Monday, April 25, 2016

massive recap.

Last night, every move reese made in bed, I watched and wondered. I would flip over to face her when she sighed in her sleep. I sat awake listening and enjoying her breaths. I have no reason that I did any of this except that she has an MRI tomorrow and worry overcomes me at times.

Today I sent her off for her first field trip. She has on her spirit shirt, a sassy skirt, and a set of pigtail floppy buns. I made her a sack lunch and heard her squeal each time we mentioned the big school bus she'll ride on.

I have so many things I need to write out. I did talk about the amazing photography retreat wkend here in town, I haven't talked about the hilarious soccer games that reese has played in, I never blogged bluebonnet pics, Sawyer had a field trip and I got to go and it was so fun just a day with her, she also cut off a ton of her hair and now has a shoulder length bob, we had 2 E.R. trips with fever for Reese, EJs family came into town, aidan had at least 1 dance competition since I last posted - maybe 2. we were sent to great wolf lodge for an amazing night, and, of course, the amazing children's cancer fund gala was this wkend.

So many of these photos are on instagram where they will have to stay because of time. I have spent the past month or more studying for the social studies 7-12th content test (took last week) that I am waiting for a score on. It was hard - and I studied morning and afternoon for so many weeks. I wanted, so many times, to just push it all away and sit and write, but then that would make me stressed out --- but here I am, after, tense because I didn't do it.













































The gala ^ oh the gala. In the weeks leading up we have had interviews and videos and been in the paper. Reese's sweet face and story was on the invitation and so many people got to know her. The night of the gala, I dropped her off to a room of fun and set off on a night with EJ. We laughed with friends and ate delicious food and drank copious amounts of wine and then finally it was fashion show time. Reese walked down the runway like a nervous and sweet pro, but then posed her cute little self at the end. She ran down and I got to shower her with kisses... her curled hair, her make up, her dress... it was all so much. What a wonderful evening that I cannot wait to do again next year as alumni.

I don't know if just the entire weekend sort of shook me? or what. But I am just ready to get the MRI over with. Reese, of course, is so excited for "bubblegum" (what she calls the MRI) and I am going to take her lead of confidence.

And I am taking a vow for as close to weekly posts as I can - for myself, I need these times to write and places to put pics and to stop for a minute and just breathe.


Thursday, March 3, 2016

soccer.

The first practice was cold. I ran back to the car to find some earmuffs, but by the time I got back to the field, Reese had already boycotted the rest of the training for a cozy chair with a blanket and a friend. 

In days prior to her first soccer practice, I had to find shin guards and shoes that fit w her boot shoved inside. She argued about which pair she liked and then argued about wearing her boot at all. 

Soccer.

A right of passage for all kids in north texas, it seems, and one that I didn't know Reese would be able to experience. 

She hugged her friends, made new ones, and told me how she really only wants to play in games, not practice (lol). 

When Saturday at 1pm came around and her first game was in session, my heart felt like it was going to burst. She had her bright green jersey, matching unicorn soccer socks, hair in a legit ponytail. 

I watched as her friends would cheer her on, sometimes pausing to get the hair out of Reese's face with a gentle touch. I see how unconditionally caring children are - and how much they care about their friend, Reesey. I hope one day I can show her through stories and photos how absolutely loved she is.