Spring 2019

I go to the hospital one week out of each month now and I’m getting tired of it. I just want to go to school with my friends, I want to have energy and I want people not sticking me with needles. I’m so sick of having cancer and I’ve been thinking a lot about stopping treatment for a while. Every couple days I talk to momma about it. I want to stop so bad but I’m afraid the pain will come back if I do.

Momma talked to our doctor about how I’m feeling about treatment and he said it’s probably time for me to be involved in the talks they have. I think that makes sense because I’ll be eleven next month. I hear all the things they’re saying anyways. They talk about stuff right in front of me like I’m not even there. Momma said maybe I’ll feel better about things if I get to help make decisions. That then I’ll feel like I have a little control over my life.

Today after scans, for the first time ever, I got to be in the conversation. Our whole team came in the room when Dr. Weiss came in. Then he pulled up the scans on the computer screen and for the first time I got to see them. I was hoping the scans would say all the cancer was gone but it wasn’t. He showed me the spots. I thought I looked like an alien in the pictures and I didn’t like looking at the little dark places that were cancer. I looked at them a little bit but then I just started looking at my phone.

Dr. Weiss said we had a couple different options. He said we could keep doing what we were doing and I could be in the hospital one week each month or we could take a break and see what happens. But he said if we took a break, I would probably start having pain again. He didn’t know for sure but he said probably. He asked me what option I wanted. Everyone seemed real impressed that I was a part of the talk so I looked at all of them and said exactly what I wanted to do: I don’t want to do treatment but I don’t want to have cancer either. I could tell that made everyone sad. Dr. Weiss said he wished I could have that but that wasn’t how it worked. He said everyone wanted that for me but unfortunately that wasn’t one of the options I had. That wasn’t what I wanted to hear. I decided to do three more months of treatment and have the talk again.

Momma said she was real proud of me. She said that I was learning a lot of things but that I was also teaching the doctors and nurses a lot of things too. Momma said that for them to watch me grow up and become a part of the conversation was helping them to understand what all the other kids are going through too. I didn’t really understand but Momma said I was making a difference in a lot of lives by starting to get involved more in my own.