April 2018 – Part 2

When we got back from Florida we started my new treatment right away.  It was called MIBG which I thought was confusing because that was also what they called one of the scans we did for my kind of cancer. I didn’t really understand what it was but the doctors said they were giving me radiation inside my blood just like they had before with chemo.  What scared me though, is that they said I would become radioactive. I had seen radioactive stuff on cartoons and it always made people green and glowing so it just made me nervous.

MIBG was the scariest thing I had ever done. The nurses were only allowed in the room a little bit so momma and daddy had to do my vitals and stuff. They were only allowed in the room a certain number of hours a day too. They had to stay real far away from me most of the time and there were lead shields around my bed to protect them…from me. The walls and floor and ceiling of our room was all made of lead to protect the other people in the hospital from me too. That made me scared. To have something so dangerous inside my body.

The worst part was that I couldn’t have any of my favorite things like my blanket or my stuffed animals. That was because if I sneezed on them or got tears on them, then they would have to be thrown away.  I had to have a catheter that ran a tube into a lead box in my room. Sometimes momma would have to push the button to make the pee in the lead box go through special tubes into the toilet. Then she’d have to pour bleach in the toilet and flush it a whole bunch of times.

Momma and daddy had to wear special gowns and slippers and gloves – two pairs of gloves, actually. They had to wear a monitor that kept track of how much radiation I gave them. And since momma was in the room with me during the day and would get so close to me, she had to do a special scan before she could leave the hospital. I didn’t really understand that because momma wasn’t even allowed to touch me really. Or stand to close to my bed. If she was helping me with a craft or something and she stood next to me for too long a nurse would come on the speaker in our room and tell her she had to step away. It scared me that she couldn’t be too close to what was inside of me. Because I couldn’t get away from what was inside of me.

Every day this special doctor would come into the room with fancy equipment and check to see how radioactive I was. I wasn’t allowed to leave the hospital until my levels were safe enough for me to be around people. I didn’t feel radioactive but he would always show me his screen and let me see my number. Every day I got a little lower until finally, my number got low enough that I could leave. But they told me it still wasn’t safe enough for me to sleep in the same bed with momma but I was allowed to hug her. I was real happy when I could finally put my arms around her and snuggle for just a minute. But I was also real nervous about making her sick. So even though I wanted to hug her a lot I tried not to. I didn’t want her to be too close to the stuff that was inside me.