Day +72: Although overall the clinic appointment today was uneventful, we found out Kiira’s Epstein-Barr Virus (EBV) numbers are back up. This virus is very serious for bone marrow transplant patients and they’ve been watching it closely. I was so excited last week when it nearly disappeared on its own. Kiira still has no symptoms, but since it came back, they are planning to treat it with one dose of Rituximab, which will hopefully knock it out for good. I don’t know any details about when it will take place or what to expect. Once again, she acts like nothing is happening to her, and is as happy as can be, except when we hold her down for gtube feedings and bandages, because she just wants to go, go, go.
We had hoped to visit Lake Superior in the next couple of weeks, but Kiira’s doctors gave us a list of reasons why she shouldn’t go. A cabin is dirty, the forest is full of spores and bacteria, too far from the hospital… I’m not sure how this will advice will impact our plans to drive home with her in potentially 30ish days, but it made me realize that even though she is doing well, we have to be so careful not to jeopardize that.
I also have been spending time researching new clothes (something other than footies) and shoes for Kiira. I have no idea what will work over her bandages, but nothing is simple with EB and now a low immune system to consider when making plans.
While Kiira still won’t eat, she loved drinking from my cup, so maybe we’re skipping all the baby stuff and jumping to “big girl cups” as my girls call it.
Please pray that the EBV will go away and not affect Kiira at all. Also, I received news that a friend’s baby passed away unexpectedly today (not EB related). No matter the reason, it is impossible to understand why. Please say a prayer for this family tonight.
