Feb 19, 2016 (Scott)
Maya and I had a long conversation, 20 minutes straight at least, laying in bed last night. She
talked about her family, her little brother who makes her giggle, her dog who is so happy when she gets food. She told me she’ll be okay… “because I’m strong, right daddy?” She doesn’t know any other way to be, and that sustains my faith.
Maya has been sleeping pretty well but has been struggling with low energy and irritability. These are understandable with low red cell counts and a cocktail of steroids and chemo drugs. Distractions like toys, balloons, games, movies, and dance shoes have helped immensely. Yesterday Lauren, a music therapist, paid a visit.
At first it was a tough crowd, but Lauren opened with ‘Let it go’ (because she wasn’t born yesterday) and things got easier from there. The bongo player was not very good, but I tried hard and jumped at the chance for creative outlet.
Today has been up and down, but the good news is her vitals have been good and stable, and her labs are not showing anything unexpected.
Her white cell count is quickly approaching zero, which is terrifying, but it’s also part of the plan.
Maya is in the middle of a blood transfusion as I write this. The boost in hemoglobin should perk her up which will be important since a new chemo drug will follow this afternoon (pegasparaginase).
Another big thank you to the people, the communities, and the whole universe of love and support that gives us strength every moment and makes possible a place as wonderful as Oakland Children’s Hospital. Care is a passion for everyone here, from maintenance and housekeeping to nursing and oncology research – everyone is ‘all in’ for the kids and families.
We are eternally grateful.