Sorry for the delay in getting this information posted. Knowing that Claire is doing better and that Sarah is going out there, I haven’t been getting information as often as before.
This is what Sarah told me as of this morning:
- Claire has been diagnosed with Hemophagocytic lymphohistiocytosis (HLH). At first that was what they suspected, then questioned, then doubted, then began to suspect again. This week it was confirmed by a bone marrow biopsy. There are a number of causes for HLH. Since Epstein-Barr is the cause of Mono and one cause of LHL, I’m guessing that’s the cause for Claire. That’s just my guess, though.
- As treatment for the HLH, Claire will begin a low dose of chemotherapy soon, possibly today.
- As of yesterday, Claire was experiencing some abdominal pain, which Emily attributed to pancreatitis.
- Claire has been scheduled for an MRI of her head for days, but it keeps getting rescheduled.
Sarah leaves this evening for New Jersey. I’ll be getting regular information from her and I’ll post updates as fast as possible (for a single parent).