8/14/18 BMT Day +104 Complications

Today began dramatically. After a very difficult night from 11:50pm on, Reese was throwing up blood this morning. We also discovered a lesion in her mouth, on her cheek. The past couple days I have been on high alert for things that are different, because endocrinology is watching her closely for infection. (Of course, no one watches for infection as much as the bone marrow transplant team, but this extra warning from endo has me on edge.) The endocrinology docs suggested that Reese’s increasing blood sugar levels, despite increasing insulin, could be from an infection that hasn’t been detected yet, as it’s otherwise a puzzle why this is happening. So fast forward to this morning, I was very nervous. As far as the blood and the lesion in her mouth, the doctors are not worried, they told me it is “old blood” and not unexpected for Reese. Remember, I mentioned that we are not having “pink” days right now. While Reese is fighting this incredible battle to heal and be well, it is taking a toll and she is feeling just miserable. Now, if you know Reese, you know she is tough and she puts up one heck of a fight. Today, each time she was hit with excruciating pain, she asked me if I’d help her walk around the room. The reason: her doctor told her that moving around could help pop the bubbles in her gut that hurt her. So she whimpers through the pain, when I’m sure she’d rather scream, and slowly shuffles around the room with determination.

So what about the infections risk? Her CMV reactivation levels went up today and so did her EBV levels. Reese is at risk for opportunistic viruses and bacteria… and since these are reactivations, they have a way in. I am going to bed tonight praying for God to keep her safe and to guide our amazing doctors. This is a dangerous time and I am holding my breath until her steroid levels are at a saf(er) level.

Pictured below are Reese and Quinn, at the end of the day, watching a movie. My sweet girls, I wish I could give them the world and more. But for now, I give them each other and all of myself, which is all I have to give. This is what my parents do for me and someday, this will be what they do for their own sweet girls.

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