After we got back from Disney World we got to take a little break from my treatments. I didn’t have to stay at the hospital for a whole month. The doctor said my body needed a break to recover from the other stuff. I didn’t care, it was just good to be home and together. We all cried when it was time for momma and I to go back.
Once I got to the hospital, though, I was real excited. I kinda missed seeing all my favorit doctors and nurses. The next morning when they came for rounds I went out in the hall all dressed up in one of my favorite, fancy outfits. I had never been in rounds before and I told them I was happy to be back. A few hours later that changed.
This new treatment was something different than I did before. It’s called antibody. Antibody is when they give your body medicine that makes your cells attack any cancer cells. So really there’s a war going on inside your body and it makes your body not happy. I was scared when I saw them bring in the pain pump because I knew that meant I was going to have pain.
After a few hours the pain started and I started getting really high fevers too. My fevers were so hight that the thermometers wouldn’t work. They would get to 108 and then just do crazy beeping and power off. So they had to call ICU. ICU said it was okay if my fevers got that high as long as they didn’t stay that high. Then the nurses brought in a special kind of blanket filled with water that I would lay on. It would help my fevers to come down. At night my blood pressure would get really low and I also had to have oxygen because I was having trouble breathing.
I was in the hospital a week that first time I got antibody. It was one of the hardest weeks I ever had in the hospital. I was excited to go home but the thing was, I had to started getting shots everyday at home. They weren’t so bad after a while but I didn’t like it very much especially at first.
We found out a couple of things that summer. One thing we found out was why I was still throwing up all the time. When the sores in my throat got better they made my throat close up. One time they did this test where I had sleep medicine and they tried to go down my throat with a camera except the camera wouldn’t even fit. My throat had closed up too much. I had to start going in every couple of weeks and having my throat stretched out. It wasn’t too bad because they did it while I was asleep. After they did it a couple times I started to be able to eat again. It was so amazing. Food would sound good and I could actually eat it and not throw it up.
The other thing we found out that summer was that I was going to be able to go to kindergarten! Even though I would miss a lot of school for treatment there was a way the doctors worked it out with my school and they would still let me go. We were all real happy about that, especially me and Carter because we got to go to school together. I was real excited that I got to go straight to kindergarten and skip preschool. I didn’t know anyone who had been able to do that. I figured the school must have known that I was really ready.
The hospital gave me a monkey that I got to take to school on the first day. It was through a thing called Monkey In My Chair. Everyday when I wasn’t at school, my teacher was supposed to put that monkey in my chair. That way the class didn’t forget about me when I was gone.
I had to be in the hospital a lot of times that summer for antibody. Sometimes being in the hospital was bad because I would get stuck in isolation and not be able to leave my room. Like the time I got chicken pox. We were not happy about that at all. We had to stop the anitbody (okay, I was kinda happy about that) and start a new medicine for the chicken pox. But sometimes being in the hospital was fun. Miss Judy and I got to hang out with some really fun nurses and doctors. I was one of Dr. Satheesh’s first real patients so I think that made me special to him. Dr. Carina worked nights and she would always come in and do crafts with me after the other kids went to bed. One time we even had a parade together where we both were Snow White. I was confused about whether or not she was the real Snow White. Mommy said that was because I was on so much morphine – whatever that meant. But I liked our doctors a lot and after I got to know them I learned they really like the kids they are trying to make better.