Spring 2013

After radiation we finally got to go home. The doctors said my body needed a break before we did the rest of my treatments so we got to stay home for a whole month. Well, we still had to go to the hospital for labs and stuff but we didn’t have to spend the night. The best part of all was that we finally got to go to Disney World. I was still getting food in my blood so we had to take my pump and I had to be on fluids a lot. But mommy talked the doctors into letting me just be hooked up at night so I got to walk around without it during the day. I had to wear a special mask when we were on the buses and monorail so I didn’t get all the germs. I didn’t have to wear it when we was outside so I didn’t really care. Our hotel had a pool but I wasn’t allowed to swim in it because of my lines and I was sad about that. It didn’t seem fair that the other kids could swim and that they didn’t have to wear a mask or be hooked up to fluids. I was still excited to get to wear my princess dresses everyday and see all the princesses.

Disney World was the most fun I was able to have in a long time and I cried when we had to leave. Once we got home we all cried because mommy and I had to go back to the hospital the next day. I was real sad to leave Daddy and Carter but mostly I was sad to have to go back to some place that always made me so sick.

Once we got to the hospital I was real excited. I kinda missed seeing all my favorite doctors and nurses. The first 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. But a few hours later I wasn’t happy anymore.

We was starting a new kinda treatment that I hadn’t had before called antibody. Antibody is when they give your body medicine that makes your cells attack any cancer cells. Mommy said it’s like a war going on inside of you 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 high that the thermometers wouldn’t work. They would get to 108 and then make a scary noise and turn off. 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 real low and I also had to have oxygen because I was having trouble breathing.

Sometimes the ICU doctors would have to come but they always said everything was okay. I didn’t really understand how it was okay because I didn’t feel okay at all. I felt more sick than I ever had. I was confused why having cancer didn’t make me feel sick but the treatments to make me better did.