Journal entry by Leslie Cavanaugh

A lot has been going on since last post, and not in a good way.  Alyssa’s diarrhea and cramping continued, going on 5-6 weeks now.  She described the cramps as debilitating.  Dr. Nelson decided it was time to take a look.  She was still testing positive for the adenovirus, but he felt like she should've been turning the corner on that by now.  In order to get a GI consult quickly, she would need to be admitted into the hospital.  So we headed up last week for just one night.  She had an upper scope and colonoscopy scheduled for last Thursday.   They took numerous biopsies from her esophagus and bowels, but it would be several days before we got the results.

We got the call Monday that she has tested positive (again) for Graft vs. Host Disease (GVHD). This time it’s in her GI tract.  We were hoping that it was just the virus, but that’s not what came back. There’s a plan to treat this.  Unfortunately it means she’s got to get back on high dose prednisone again.  He promised it would be a short burst and would do everything he could to get her tapered down quickly.  She will also be getting twice weekly infusions of a drug called Remicade.  We are sitting in the day hospital now getting the first dose.  Subsequent infusions can be done in Louisville (thank God).  He’s got 3 infusions scheduled between now and end of month and then he’ll reassess to see how she’s responded.

To say that Alyssa was upset about this latest news would be an understatement. I think it’s more the steroid than anything else.  It just seems as soon as she starts making any significant improvement, there’s a setback.  Dr. Nelson was very optimistic that this was caught early and because her skin is not affected, feels like it will be under control pretty quickly.  Hopefully not anywhere close to the last GVHD bout where she was hospitalized for 3 weeks.  This kid is tough as nails but, holy cow, she is REALLY overdue for a break.  Please continue with your prayers for my girl.
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