Pain

When we arrived in the Bay Area on Sunday Tessa was starting to feel pretty good (relatively speaking). She had a few good days, running around at the park and only low grade pain. I even took her to the San Jose Children's Discovery Museum where we met Nana and Poppie. She played all day, running around and having a blast! 

That night she was assaulted by pain of the same magnitude that sent us to the hospital a week and a half ago. After four hours of unbelievable torment she finally fell asleep only to wake up screaming and crying again this morning. We brought her to Standford where they admitted her, and from where I now sit in a dark room on another hospital cot writing to you. Our time here is with the primary goal of managing her pain and figuring out how we can manage it at home. To this end we are working with the Pain Team. Yes, there is actually a Pain Team, and no they don't dress like super villains. She is currently on a cocktail which has kept her from the worst of the suffering and includes dilaudid, a derivative of morphine. 

Stepping back to look at the bigger picture is far more frustrating. She was seen by Rhuematology and Hemotology, which can be added to a growing list that now includes Endocrinology, Oncology, Orthopedics, Pathology, and others that my exhausted brain can't recall at this late hour. The Hemotologist whom we saw today has been working in the field longer than I've been tromping on this earth, and seems to be a wise old soul. He told us today that whatever it is she has is pretty rare. This is no big surprise given the brains that have looked at her, and the number of people across the country who are drawing a blank, but it still makes my heart lurch. 

Today I have embarked on the anger stage. I'm pissed that my poor, beautiful girl must suffer so much before she has lived long enough to get her kicks. I'm pissed that no one knows anything about why her bones are so thick, why they are dying in places, why she is in so much pain, or any of her other symptoms. It was bad enough that there was something wrong, but now it's something that some of the top brains in the world may have never seen before. I'm pissed that I can't take it for her.