12/4/18 BMT Day +217 The Black Stallion

Today, the doctors withheld Reese’s albumin. Then, a lab test was run to see how well her body handled the lack of supplementation. The number: 2.3. It held!

2.3 is NOT an appropriate number for Reese’s albumin to weigh in at. BUT, it’s the same number we see with or without supplementation. And, most importantly, it didn’t seem to affect Reese’s weight or swelling (both are already high, but consistent.) So, this little trial was once again a success! Tomorrow, her albumin levels will be tested again before she is given her every-other-day dose, to see where it’s at after 48 hours. The GI team consulted today and it seems that if she stays above 1.8, she is “safe”. In the meantime, what are we doing about the protein-losing enteropathy? Reese is receiving two boluses of protein a day, eating foods that are high in protein, and the doctors will continue to treat her healing gut from gvhd. But what does this mean for leaving the hospital?? This is first on my list of questions for tomorrow.

In the meantime, we are planning to hunker down for the winter in San Francisco. My beloved minivan, the Black Stallion, arrived today on a giant auto transport trailer. It traveled across the country to be here to pick Reese up at the hospital, soon! We are still trying to figure out additional housing just south of the hospital. I have been a student, learning about lab draws, meds, and tube feeds. I am working to complete all of our team gifts with a good friend who owns Gifted For You, trying to make Reese’s bell ringing ceremony a day to remember, and spreading as much Christmas cheer as I can to these three sweet girls who call me mom. Life is good and I feel blessed. Progress is such a high!

Speaking of progress, Reese’s CMV medicine Valganciclovir went down to a maintenance dose! This is because she had three non-detected tests in a row. Valganciclovir is really hard on her new marrow, so this is a big win! Remember, we couldn’t clear her body of this CMV reactivation for months and it was causing domino effect problems. This reactivation is very common in transplant, this is why a donor and a recipient have to have this in common, being either CMV+ or CMV-. But, Reese’s new immune system has been suppressed for so long to fight the gvhd that it couldn’t mount the necessary t-cell defense to knock it out. Well, now it has!

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