Fall 2012

I found out my rocks had a name. They’re called cancer which is a special kind of sickness. You could only get better from cancer by doing medicines called treatments, like the chemo I get all the time. Everyone would get nervous when they talked about the treatments. It sounded like no one really knew whether all the treatments would work or whether I would just have cancer forever. Whenever the doctors would talk about it daddy would ask all the questions and mommy wouldn’t say anything. She would just stare down at the floor and pick at her fingers. Sometimes she would just talk to me and pretend like the other people weren’t there talking.
Pretty soon I started getting used to being in the hospital all the time. It wasn’t too bad except for throwing up a lot. The doctor said they had to put formula in my belly and since I couldn’t swallow it they had to put it in through a tube. I didn’t really care or know why everyone was making such a big deal so I said that was okay. But then a bunch of nurses came in and they said it was time for the tube. Mommy held my hand and rubbed my fingers while two of the nurses held me down. They squeezed my arms and legs real tight and held me down on the bed. Then another nurse slid the tube up my nose and down my throat. I was screaming and choking and pretty soon I started throwing up. They got upset because the tube came back up but mommy said they had to give me a break. They said it wasn’t going to get any better so they held me down again. I kicked my legs as hard as I could and started yelling. That time they got it down my throat pretty far but then I started throwing up again. This time it wasn’t my fault, I couldn’t make it stop. Mommy pushed the nurse out of the way and yelled that I needed a break. She got down to the bed with me then and was sorta holding me. She just kept saying that she was sorry and she wished she could take it all away.

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Izzy and Elphy – October 2012

They finally got the tube down but I kept throwing it up all day. The worst part was when they would give my line a drink. Well, there’s actually two different kinds of drink for your line: SALINE and HEPARIN. Heparin was fine. But Saline comes in a white syringe and I could taste it in my mouth whenever they put it in my blood. Even when they did it while I was sleeping it would make me gag. If it was a day I was feeling real sick from the chemo then the gagging would make me throw up. If I kept throwing up then the tube would come back up and then the nurses would have to hold me down and put it back in. One time a nurse told mommy about a tube that went straight into your belly, it didn’t go down your throat. Mommy said she wanted me to have one but the nurse said kids who just got cancer couldn’t have one. The doctors didn’t do it like that. Mommy just laughed. I don’t know what she did but the next day she told me she talked to our doctor and he was going to let me have a tube right in my belly.
After a few months the rock was small enough to take out of my tummy. Mommy said we still had to keep doing the treatments even after they took out the rock which I didn’t really understand. Surgeons are the kind of doctors that take out rocks and fix broken bones. My surgeon was going to put in the special kind of tube that goes straight in your belly while I was asleep too. Mommy didn’t let them put the tube down my nose anymore so now they gave me food in my line. It was a special kind of food for your blood but when they gave it to me I wouldn’t get hungry so I didn’t really care. They just had to watch my vitals closer because I was starting to get kinda ‘fluid heavy.’ I didn’t really know what that meant but mommy said she could see it in my face.
When I woke up from surgery I could tell that mommy had been crying again, maybe daddy too but I couldn’t tell for sure and I was real tired. They said the surgeon was able to get out all the rock and that was really good news.
After surgery I had to be on a different floor of the hospital and not the floor that has kids with cancer. There was a big dressing on the cut so I couldn’t see it. I liked our regular floor better because I knew all the nurses and they knew how to do things like take care of my lines. These nurses did it different. These nurses didn’t know how to take care of Miss Judy either. She’s my doll. She’s just a baby but she has cancer like me too. She even had a central line like me and had to get fluid and treatments all the time. On our regular floor the nurses knew how to take care of her better than this floor. One time mommy told them that Miss Judy had to do everything I did too. Because we had the same kind of cancer and she had to get better too.
I didn’t get to go home before my next treatment. I was sad about that but glad to be back to our regular floor. I told mommy it was okay as long as we got to go home for halloween. I was going to be Merida from the movie BRAVE and I was real excited. Mommy said she would try hard as she could to get me home for Trick-or-Treating. But once they started the chemo they also wanted to start putting formula in the tube in my tummy. My tummy did not like the formula and I started throwing up all the time. They said it was better for your tummy to get food than to have to give food to your blood so they kept trying. But I kept getting sicker and sicker. So sick that I didn’t get to go home for Halloween. I was real sad about that but all the nurses and doctors tried to make the day fun. And it worked. That night we had a parade around our floor so everyone got dressed up and they gave us candy. Being in a parade made me feel like a real princess. I told mommy it was the most fun on Halloween I had ever had.

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Halloween 2012

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