Thursday, October 6, 2011

October 6, 2011 - Day 5

4 months, 1 day since diagnosis
day #15 of current hospital stay

This morning was rough but we were finally able to get on top of Riker's pain again. Her cyclosporine (her immunosuppresent to prevent graft vs host disease) levels are high which is what was probably causing the shakes. So, again, Riker had a good afternoon. She was able to play for small periods of time and even had some physical therapy today.

The physical therapists are fairly happy with her development but are concerned that she doesn't roll over yet. Tummy time isn't easy when your tubes don't reach the floor and you have a central line on your chest. I'm not worried - she'll catch up. She's so close to normal, developmentally, as is. She started sitting up only a week ago in the middle of this awful chemo! She's a superstar :)

Despite my own darkness, I continue to remind myself of all the things I have to be grateful for. Riker continues to do as well as anyone could expect or hope. She is not having any of the side effects that the doctors are watching out for that would cause worry. The symptoms she has now are expected. She does not have a fever or organ failure or trouble breathing. So much could go wrong and nothing is. What we're going through right now is horrible but it is what we signed on for when we came down to Boston.

1 comment:

  1. Tory, you have a remarkable ability to put words to what you are feeling. I hope when this ordeal is over you will consider writing a book about it. People would read it!