5/11/18 BMT Day +9 VOD

Last night Reese was diagnosed with mild VOD that was barely detectable. This is when some of the small veins in the liver become occluded. It is a result of chemotherapy and Reese was at high risk because her particular chemo regiment was the most brutal (re: JMML is awful.) This is a big deal if it becomes severe and it’s very important to catch it early. Our doctors believe they caught it early, thank god, we are in the right place. She started defibrotide in the early morning hours, and by 8am it had progressed to mild/moderate. Her rapid weight gain and fluid retention (1 liter) over 24 hours as well as her giant & hard belly are the outward signs. Her bilirubin is under control now and her platelets are holding in the 20-30 range which is necessary for her to have the very important defibrotide. She was on defibrotide before (prophylactically) but it was discontinued five days ago because she couldn’t keep her platelets above 30 (which is necessary because defibrotide can cause bleeding.) Now she is holding her platelets and able to be on this important medicine. This weekend is going to be scary, pray that she remains stable and starts to get better. A turn in the wrong direction is very dangerous. I will keep you updated and give Reese extra hugs as her little body works hard to be well again.

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