January 2013

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 House but 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 was too weak to walk or move much so I would just sit there and pretend to be at the beach. I had never been to the ocean but it seemed for fun than being in the stupid hospital.

I did music therapy a lot. 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.