We got to stay home for Christmas a whole week. I got so many presents – some from my family and some from people I didn’t even know. I got to play in the snow and see all my animals but the best part was all four of us being in our own house together.
On New Year’s Eve mommy and I had to go back to Cincinnati to start my Stem Cell Transplant. A few months ago they took out some of my blood and took the cancer out of it. Now I was going to get a really strong chemo and then they were going to put my blood back in, well just the stem cells. I really didn’t understand that much of how it worked. Everyone just said it was going to be real hard but I was going to do great because I was so brave.
We had to be on a different floor of the hospital for this and they had all kinds of rules. Kids weren’t allowed on the floor so I wasn’t gonna be able to see Carter even when they came on the weekends. Daddy would stay with me and mommy would stay with Carter at the Ronald McDonald Housebut he couldn’t even come over for visits. Only one grown up could spend the night in my room so when one of my grandmas or someone was there they could visit during the day but had to sleep at Ronald McDonald too. No one was allowed to eat or drink in my room which meant mommy had to go down the hall even for her coffee. We really didn’t like that part.
The chemo they did was real strong and killed all my cells. My eyelashes fell out, my finger nails came off and my skin got real tan and then peeled off like a sunburn. It made me think about swimming so almost everyday when I would wake up I would put my swimming suit on and sit under a sun umbrella. I would pretend to be at the beach. I had never been to the ocean so I pretended to be there instead of in the stupid hospital.
I don’t remember much about stem cell. I was in the hospital for two months and could never leave the room. I had a pump with a button I could push when I had pain. It made me super tired but I had pain all the time so I pushed it whenever I could. The thing was, it would beep at me if I couldn’t have anymore but I couldn’t hear the beeps. That’s when we found out that I had lost hearing from some of the other chemo. I could still hear people’s words unless they talked quiet. But I couldn’t hear things like beeps or some kinds of singing on the tv.
I got lots of sores in my throat and threw up all the time just like before. But this time I always threw up blood and throwing up would make the sores hurt real bad. That would make me cry a lot, except I didn’t want to make noise because talking hurt the sores too.
I didn’t get out of bed for five or six weeks so I had to learn to walk again. Mommy said the muscles in my legs got too tired and needed to get strong again. There were special kinds of nurses that would come make me use my leg muscles and I would always cry when they came. They would try to make fun games out of it but that just made me mad.
I should have got out of the hospital sooner but my body got real mad about the stem cells. My vitals got crazy again and the ICU doctors had to come check on me. Mommy said it was kinda like my body was attacking itself and my kidneys and heart were getting hurt. There was a lot of things about stem cell I didn’t understand. But I had to get a special kind of medicine one time a week that helped my kidneys and heart get better.
I did music therapy a lot. I remember that. Kathryn was a girl that had a guitar and other instruments and she would come around to all the rooms and play music with the kids. I used to be able to play drums or keyboard when she would come but during stem cell I was too weak. So she would just sit on the end of my bed and play her guitar real quiet and mommy would lay down with me and cry. It always made me happy when Kathryn played but it always made mommy sad. One time Kathryn surprised us and learned the song that mommy always sang to me when I was falling asleep. It was really a Christmas song but it was about me so mommy said we could sing it whenever we wanted. It went:
Oh come, Oh come, Emmanuel and ransom captive Israelle,
Who waits in lonely exile here, until the son of God appears.
That time mommy really cried and she told people it was the most beautiful worship time she ever had. More beautiful than even singing in church.
There were other kids stuck in their rooms that I had gotten to know in the playroom of the regular cancer floor. Mommy told me one day that she talked to a boy I had played with a few times, his name was John. He was standing in his room with the door open when mommy walked by so they started talking. He told mommy that Jesus healed him and that Jesus was going to heal me too. She told me about it and she thought it was real sweet. He died a couple weeks later. Mommy didn’t know I knew but I heard her tell somebody. I heard her say that Jesus did heal him afterall, except I didn’t think that made sense because he was dead.