8/27/18 BMT Day +117 Burned Out

To quote Reese’s favorite book (We’re Going on a Bear Hunt)

We can’t go over it.
We can’t go under it.
Oh no, we’ve got to go through it.

Stumble trip!
Stumble trip!
Stumble trip!

This was last thing Chris and I said to each other when he left me with Reese at UCSF Benioff Children’s Hospital on April 23rd, for a “six week stretch”. And through it we have gone… stumbling and tripping and victoriously celebrating, too, all the way.

Today is a victoriously celebrating kind of day (which always eventually follows those stumble trip days.) Reese kicked butt, her flare is burned out, and fast. Last Friday, in the early morning hours, Reese’s gut gvhd flared it’s ugly head to remind us that it’s still there, and we aren’t totally in control, yet. So why did this happen? We aren’t sure, but it’s one of two reasons. First of all, Reese is on two medicines that we believe are controlling her gvhd. Steroids and Vedolizumab. We credit this new gvhd medicine, Vedolizumab, for slowly getting Reese off steroids. This medicine isn’t new to the world of gut problems (it’s also called Entyvio- it’s one of those commericals you have seen with so many side effects that when it’s over you are left thinking- jeez.) Well, Reese is trailblazing in the world of pediatric gvhd, because there isn’t even really a dose set for someone like Reese. I would never choose to have my little girl trailblaze with a medicine, but it was a third string effort, when all else had failed Reese. You may recall, her severe gut gvhd of June and July, and all of the different medicines our brilliant (and cutting edge) doctors tried in an effort to save my little girl. Well, those did not work. So they dug deeper, and found this. We believe this is working- with one problem. The dosing. We have learned with other medicines throughout this journey that Reese has a fast metabolism and she burns through medicines quickly. For this reason, our forward thinking doctor tested her levels a couple weeks ago, to ensure that it is therapeutic. Well, this obscure test had to be sent somewhere, and it took a long time to come back. In fact, my doctors just collaborated, reading the results in front of me, last Thursday night (hours before she flared.) It was then they discovered that her dose was not only no longer therapeutic, it might be non-existent by this point. Boom, she flared that night. This might be why, or it could be that we were aggressively dropping her steroids, and a few t-cell soldiers are left, not quite extinct, from the original batch of naughty t-cells who knew too much about her donor’s body (and attacked hers and started this mess in the first place, the first week of June.)

That was a lot of information- but here is the conclusion: Reese put out that flare in record time, none of us could believe the swiftness. Truly, God had a hand in this. This tough little cookie has been shocking us every step of the way, I can’t even explain how damn strong she is. On Friday, Reese woke up and everything was taken from her, again. Everything she worked so hard to earn.. soup, peaches, even water. She was devastated. And if you know Reese, you know she does NOT take no for an answer. Today, just three days later, she had soup. And she ate. And she just looked at me with her bright blue eyes, shining though her swollen face, with her knowing smile. And nodded.
That’s right mommy, I won.

Pictured: Reese and daddy, amid the chaos of her flare.

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