From my point of view

Five years ago today we found Amber's tumor. "Five Years" by David Bowie has been ringing in my head. I love that song. Today it's just strange. I'm glad we found her tumor. I'm glad I refused to leave the doctors office 'til we figured out what was really going on. I'm not happy my child had cancer I am happy we found it and happy she beat it. I know, I'm sitting here right now on the parent bed in the children's cancer unit as I type this from my cell phone. This is a whole different animal. This is Secondary AML It's strange. Sitting here still after five years. You need to consider that my daughter has had a surgery a year since remission. She spent a good amount of time at Shriners Hospital for Crippled children relearning how to walk, how to use her wheelchair, and how to dress herself. That was just after she was done with chemotherapy. Yet here we are. Five years is a big marker for Ewing's Sarcoma. This would be the ...

Jesse and I are home now... It's 12:20am Jordan is with Amber at DCH It was difficult to leave. Jesse and I have been running on adrenalin fumes. I think our first meal today was at 4pm. My allergies are on high, they do this in the fall, on top of that were trying to clean an rearrange our house. We're giving them the bedroom and turning the front of the house into a studio. (granted she'll be in the hospital for a month at a time with just 5 day breaks here and there) Trying to focus on the positives. The straight talking, informative, and caring nurse we love, was her nurse today. This is the woman that was with us when Amber first lost her hair. It was a tough day. I'm glad she was there. She was the one who taught me all about reading blood work and what being neutropenic meant. Today she was teaching all of us about leukemia. It's a different animal. She's got a lot of it in her marrow. They checked her spinal fluid today and also put a chemothera...