Marc's Story: Getting Serious

Hi, I'm Marc and I am almost 17. I have always been a pretty healthy person. It was hard for me to catch a cold, and I don't think I've ever had the flu. I was like this until the end of 8th grade. I was 14 and my friends and I had just gotten out of school for the summer. My family went to our summer home on the ocean. The last couple of days we were there, I noticed that I was getting tired easily. I didn't worry much because I thought that I was out of shape, but it was the first time something like this had happened.

Anyway, I went home that next weekend and my mom noticed that I was looking very pale. She took me to the hospital and they did blood work. She worked at the hospital, and after I went home, she called my house and was extremely worried because she had seen some of the test results and my blood counts were very low. So I started to freak out- but my dad kept saying it was nothing to worry about. I went back to the hospital, where I was admitted. I spent the next two nights there, which was tough because I was supposed to go fly fishing with one of my friends in Vermont that weekend.

The next day, the doctors took blood from me almost every hour and also did a bone marrow test, which was awful. Three hours later, they came back with the results. They still weren't sure: they thought that I had either aplastic anemia or leukemia. The next day, the doctors finally decided that I had aplastic anemia. In aplastic anemia, there is a problem with your bone marrow. It can't make enough blood cells, so your count for all types of blood cells will be way too low.

When I went into the hospital, my hemoglobin and platelets were seriously low, and I bruised really

easily. If I cut myself, I would bleed for hours. Doctors think the whole thing was caused by a cold I got six weeks before. They think that it triggered my immune system to start attacking my bone marrow. People at the hospital started looking for a bone marrow donor for me on the Internet (I'm not exactly sure how they did this) since a bone marrow transplant is a possible treatment for this disease. But it's a very involved process and for now, we're just sticking with medication.

For the first month after I was diagnosed, I had to go back to the hospital and get blood drawn about twice a week. Then it was once every week. Now I get blood tests every month and see the doctor every three months. At first, I took Prednisone, a steroid, which had horrible side effects. It made me grow all this extra hair. I just take cyclosporin, and have been able to reduce my dose a lot since this past January. Recently, doctors have said that I'm in remission.

My friends found out about my disease a couple of days after I was diagnosed, and they completely flipped out. But after awhile, they calmed down and were cool about it, but were scared for me. The hardest part with my friends was explaining things to them when they wanted me to do stuff. Because of my low blood counts, I didn't have a lot of energy and just wanted to sit around while they wanted to go out rollerblading or do other sports. And I couldn't play hockey, so I started getting more serious about golf, which I had played for fun before. I also started to get more serious about playing the guitar. People in the hospital loved this-- I played a lot when I was there and was able to entertain everyone. I take my guitar everywhere with me. I don't think this disease has had much effect on me, but my friends say that it has had a huge effect.