6/13/18 Day +42 EBV?

We have turned a GVHD corner!!
We knew that we needed to see improvement by today, Wednesday. If GVHD does not respond to steroids (steroid refractory) this is a big problem, we are so blessed to have response. THANK GOD. That was a long week, I was nervous every moment and my little girl suffered so much. We are not in the clear, she is still very much at war with GVHD, but we have seen improvement and we are now heading in the right direction. She is a lot better than she was even yesterday.

We have quite a few BMT problems under our belt and currently resolved:
VOD – check
CMV – check
GVHD – on the mend (this can take weeks)
What is EBV? This is the Epstein Barr Virus. (It can cause mono, it’s not uncommon.) Reese already had this previously. Now it is reactivating, like the CMV (which has resolved.)
What does this mean? We are not sure, yet. We just found out about the reactivation yesterday. An ultrasound was ordered and results are pending.

I am hoping this is the END of the acronym parade. We would like to order some BMT peace, if possible.

In the meantime, we are celebrating the GVHD improvement. Reese is begging for pasta and her sister, Quinn. Both signs that things are improving. Two days ago, Reese spoke. It had been a week, she has been in so much pain. Quinn was so excited, “Reese is talking again!” Well, last night we played and she joked like her old self, it’s so nice to hear her voice and funny self.

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