We had to do lots more tests before we could start treatment again. That was the only good thing because that meant I got to finish first grade with my hair.
I had to have a line put in again. Momma said I could pick which kind of line I got this time. I didn’t even know there were different kinds. She said I could have a central line again if I wanted but I just wouldn’t be able to swim or take a bath. With the other kind of line, it was called a PORT, I would be able to swim and stuff but when I had to be in the hospital or needed labs they would have to use a needle. So I got to pick which thing I wanted more: to not have a needle or to get to swim. I didn’t think it was a very fair choice. Not a choice anybody would want to make whether they were a kid or a grownup. I told momma that. Since it was almost summer I picked the port hoping that I would feel good enough to go swimming sometimes.
One day I had a bone marrow test and we were having a music program at school that night. I really wanted to get back in time to go but the doctors said I probably wouldn’t. They said I would probably be too tired after the sleep medicine and that my back would probably hurt too much for the program. But momma said it was up to me. She said if I wanted to go we would try our best to get back in time and see how I felt. Well, we did make it back in time and I felt fine so I got to go. And I think I had the most fun of all the kids because I was just so excited to be there.
On the last day of school we had a big thing at school called Relay for Recess. It was to raise money for cancer. Every grade got to wear a different color t-shirt and I got to wear my own special one. I got a differnet color one (mine was purple) because I was the only one that had ever had cancer. Mine was called a ‘survivor’ shirt. I got to be the leader of our parade. Sometimes having cancer made me feel special but most of the time I didn’t like it.
After school was out I had to go to hospital for a week and do chemo. Then we got to come home and do chemo most of the time. I decided to cut my hair off as soon as we got home again. I had worked real hard brushing my hair everyday and washing it good to try to make it grow long. It was making me sad to think about it falling out so I just wanted it to go away.
Soon as we got home I started chopping off my hair. I sang a little song I made up while I did it. I may not have hair anymore but: I still had my eyes, I still had my smile, I still had my nose. That’s what momma had been telling me all week and even though she wasn’t right about everything, she was right about that.