Fall 2018

We couldn’t do another MIBG right away because the machines were being worked on or something. Momma was not happy about that. Instead we did another kind of chemo we had done before. I had to be in the hospital a lot and it made me real sick but it helped my pain. I got fevers all the time and had a different kind of pain from the chemo. It might have been antibody again but I can’t remember. Antibody causes a different kind of pain that happens in your nerves. Even touching my skin just barely would hurt and it hurt to move my fingers. Even when I was home I didn’t have much energy.  I was tired a lot and sore.

I finally did MIBG again but it didn’t work the whole way this time. It got rid of some of my cancer but not all of it. When school started up I tried to go some but it was hard for me to make it the whole day. The treatments were just making me so tired and so weak. I liked 5th grade. Me and Addie were in the same class and had lockers which was fun. But our class was all the way at the other end of the building from where specials were and the lunchroom. It was hard for me to walk from one end of the building to the other. At this school people looked at me different. I was a lot smaller than most of the other kids and I think they could tell that my hair wasn’t the same as other people’s. They looked at my hearing aids too and I always felt like they could tell I had a tube in my belly underneath my shirt. Most of the time I tried to suck in a lot when I was walking so it wouldn’t stick out.

I only had one MIBG left and I was afraid of what would happen after I used it. Momma and I had to start talking a lot about treatment stuff. I was getting frustrated with people telling me what I had to do for so long. Momma said I was getting old enough to start deciding what I wanted to do with my body. I was tired of people telling me I had to make a choice that wasn’t fair. I was tired of all of it. We started talking again about the thing – me not sure I wanted to keep fighting and then we had to start talking about the other thing – what would happen if I stopped. One night when she was laying in bed with me I told her that I knew. “I know what happens if I make the choice to stop fighting, Momma.” I could tell she was crying a little when she asked how  I knew.  That’s when I just told her, “I know if the cancer takes over I’ll die, Momma. I’ve always known.” She asked if I was ready to do that and I told her I wasn’t. I told her I was just ready to stop having cancer.