8/13/18 BMT Day +103

We are trending upward! We aren’t having pink days… it’s just not possible to be pain free, right now. There is a lot of pain in her progress, and Reese is fighting her way to health. We miss pink days but there is a rainbow at the end of this tunnel and we can see it’s glow from here!

Since the first week of June, Reese has needed daily albumin. This is a protein you have probably never heard of, and I hope you never have to concern yourself with it again in your life. The leaking of this protein has been a symbol of Reese’s battle with gvhd. I wake up around 5am each day (the lasix they have to give Reese at 4am with her daily albumin gives us this wake up call.) The first thing I do (after helping her) is check my UCSF patient chart. And there is always a ton of information there because daily labs are drawn from her line around 1am. The FIRST thing I look at is her albumin. I have dreamed of the day it held above 3. This happened this weekend. She didn’t need an albumin transfusion!! This is huge, and it has been three months coming. Some say, it’s the little things. This is a little thing that means a BIG thing!! So why is Reese still in so much pain? I wish I could answer that exactly but I can tell you the thoughts about it. Reese’s gut has to relearn… everything. This is painful. Imagine training your body for… anything new. We have been told to expect this to be a painful process. But Reese needs to keep moving forward, through the pain and nausea that haunts her all day. Moving forward means eliminating meds, which means less risk to her. As we eliminate one thing, other things are eliminated, too.

So what is changing?
It’s a slow process. Her steroid wean went down another 10% this week (we started at 2.0, to 1.8, to 1.6 to 1.4. Under 1 is much safer… two more weans to go.) The steroids are the reason for her high blood pressure (we had to go up on those meds, again) and her diabetes (constantly going up on those meds, lots of drama there.)
Her NG tube “feeds” started again, very slowly. She has to get up to 10ml an hour of formula to start to chip away at her TPN & lipids. (TPN is causing some drama in her liver- the liver doesn’t like to do the gut’s job for this long.)
Less albumin and IVIG transfusions (both proteins that were being lost from her gut. Celebrating!!)
What still isn’t budging? Her platelets and hemoglobin. While her white line is strong, her red line still hasn’t caught back up since the ganciclovir tanked everything. Why? I don’t understand. Praying for this to be the next big win!! And what is Reese praying for? Food. Specifically, still, cheese and peas. This is definitely symbolic of healing, as cheese and peas are found on a very advanced diet.

Reese and her sisters have been spending mornings together. My favorite days are when my girls join us at the hospital from about 8am to noon. I am so happy to have my pack together as it should be. Then Claire goes home with my parents, Nonnie and Poppy, and Quinn usually stays until 5.
Family. My parents have taught me what this means, and I am teaching my kids the same. This team is making Reese stronger, reminding her of the Reese who can do anything, the Reese who lives in her yellow house, the Reese who laughs and plays and loves and is loved. The first thing Reese asks when she wakes up is, when are my sister coming over? And the last thing she wants to know at night is, when are my sisters coming back?

We received more sweet, thoughtful, presents this week without names… if you haven’t heard from me, please tell me if you sent something!! Thank you!

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