When Karl was born 7 years ago today and they told me he had Down syndrome they also gave me a book about DS. The third chapter dealt with the fact that children with DS are 10% more likely to get leukemia than typical children. I skimmed over that chapter because I didn't want to think about it.
As he grew I put it out of my mind and concentrated on all the other issues that come with having a child with DS. Then on the morning of June 19, 2003, I was dressing Karl and I noticed a strange rash on his legs. It looked like tiny little pinpricks. Normally for a rash I would wait a couple days and then call the doctor. Instead that morning something made me call right away. They saw us a couple hours later and the doctor took one look at Karl's legs and told me we were going to have to get some blood work done because it looked like petechia. A rash that indicates low platelets. He never used the "L" word.
As I was driving Karl to the hospital to get the blood work done the realization of what we were dealing with began to dawn on me. I told my husband as soon as he got home from work and we sat holding each other and waiting for the doctor to call. He did and he told us that Karl's platelets were only 11,000 and that indicated leukemia. He had made us an appointment with the oncologist at Children's hospital the next morning. We took Karl up and they did a BMA. It confirmed the diagnosis, it was leukemia. I literally felt the floor give out under me, the earth was swallowing me. I remember thinking it was only the second time I saw my husband cry. The first was when they told us about Karl having a hole in his heart shortly after birth (that has since healed). I tried very hard not to carry on too much because I didn't want to scare Karl.
At that time the oncology clinic was across the street from the actual hospital and they told us to take him over and have him admitted. As we carried him across the street I remember thinking how odd it was that my son had a potentially fatal disease and we had to carry him across a busy city street. Shouldn't there be an ambulance or at least a stretcher with a team of nurses? The rest of the story is probably typical. A long hospital stay with surgery for a port, another BMA, learning the lingo and the ins and outs of the cancer ward. Mostly trying to figure out how I was going to ever get the thought out of my head that my baby could die. I remember at one point standing in the empty stairway of the hospital shouting up at God asking him how he could do this to me, how could he give me the most precious gift ever created and then take it away. It has been 3 years and we are battle weary but together and all very much alive. Now I shout my praises to God for getting us this far. We are survivors.
Judy P, Mommy to Karl (7) dx 6/03 www.caringbridge.org/pa/karl