Our family has recently been thrust into the scary world of Aplastic Anemia. Our ten year old son, Evan, was diagnosed after two bone marrow biopsies on October 30, 2007. Evan had been having an unusually large amount of bruising on his legs and intermittent petechiae. We took him to our local ER for blood work on October 13, 2007. Our world crashed and our lives were forever changed on that day.
Our nine year old daughter Emily has been ruled out as a match. Evan very swiftly came under the care of a wonderful team at McMaster Children’s Hospital in Hamilton, Ontario.
Evan was admitted for a week, during which time he had a port inserted, received his first blood products and began a five day course of Atgam (horse), which he tolerated reasonably well. He was also started on cyclosporine, G-CSF and a month of prednisone. Aside from two brief hospitalizations for neutropenic fever requiring antibiotic therapy, Evan has been followed twice weekly as an out patient.
We have immersed ourselves in extensive research, reading and learning as much as we can about this terrible disease and the treatment options.
Anyway I'm so glad to have found this forum, there seems to be so many knowledgeable people here and while I have every faith in Evan's medical team, there's nothing like talking with people who are going through the same experiences.
I am currently communicating with Dr. David Margolis in Wisconsin as well as an extra measure of reassurance.
One question about the G-CSF: They had Evan's ANC go all the way up to 21.7 before they decreased his dose from daily to every other day. I expressed that I would prefer Evan to be on as little of this med as possible so the doc said she would be decreasing him to every three days soon. His ANC is now around 6.4 but I'm wondering if that's still more than necessary. Would you guys recommend he get the med maybe twice weekly or something that would have his ANC no higher than1.5-2 because that is an adequate count, isn't it?
Sorry to be so long winded but I wanted to establish Evan's story. My posts from now on will be much more brief!
