Day +48

I was checking my phone messages today and I stumbled across this photo. It is from the car ride to the hospital 58 days ago. She was in an amazing mood that morning. She was laughing and screaming with Pa in the backseat. She had no idea what was ahead for her. she was just happy to be with her some of her favorite people. She is the toughest kid I know. I haven't seen the silly girl as often lately. But she's still in there. We get glimmers and I get so excited about the future when she will be a carefree little girl, when hospitals are a distant memory. I think she will always remember bits and peices. She's that kind of a kid. But I pray she only remembers the good things...like the sweet nurses, her Pa, Gigi and Nan being here all the time, special days with Daddy, new toys and new little friends. I hope that somehow those are the things I remember too. I don't want to live with this always in my side mirror. I don't want to live always looking over my shoulder or waiting for the other shoe to drop.


Things are stil the same. Her liver functions continue to creep towards normal. Unfortunelty she is still "stooling" around 6 times a day. If this doesn't stop soon they will be doing an experimental treatment on her next week. It is a cell infusion that will hopefully help with the GVHD. They say that there don't seem to be many side affects in the short term. They aren't sure if there could be any long term affects since it is such a new treatment. I would rather not be part of an experimental treatments. Please pray the steriods, cyclosporin, and cellcept (Spelling?) start to work so she doesn't have to have the experimental treatment.