Chemotherapy through the child's eyes

The following was written by Toniel Walton, a 15 year old girl, who went home after being declared in remission on 25th May 2006 after spending a year at CCS. She thought that being older and able to express herself, the following information might be useful to parents of young children, to help them understand what they’re going through.

Painful Skin:
When having chemo, I found that my skin became very sore and even a gentle touch would hurt. This also happened when my hair was falling out. I talked to my doctor about this and she then told me that yes it is a side effect of the treatment (just one they forgot to tell me about). It hurt for people to touch me at all, so a firm grasp or a playful hit hurt A LOT more; but it wouldn’t last for long. My solution was to rub sorbolene cream over my body and after a few days it settled down.

The Nose Tube:
I know the doctors might say that a nose tube isn’t painful or irritating and that it only feels like a little bit of water got up your nose at the beach, but don’t believe them. When I had my nose tube put in I couldn’t talk for 2 weeks and ended up talking through my nose (which my mother hated!!) It did hurt and the only thing that temporarily soothed it was to chew ice and let the ice run down my throat. The second nose tube I had put in wasn’t as bad. My throat didn’t get sore, but it felt like someone had shoved the end of a pencil up my nostril really hard. It hurt and I kept bumping my nose in my sleep which didn’t help. I found that every time I had to get a nose tube replaced, it was a lot less painful if I got it put on the same side. The pain lessened every time I got a new tube and it got to a point where I wasn’t bothered by it at all.

Once it is in and there’s no pain, then I got used to it and I actually quiet liked it.

Cravings:
Yes, these are real and so is the nausea! Some parents have said that they thought their child was saying that to get out of eating vegetables. When I was having chemo, the last thing I wanted to do was eat, and even someone saying the word food made me sick. I could not stand the smell of food, especially hot food and toast. My taste buds did change a lot and even though the nutritionist said I should eat fatty foods etc, they never appealed to me (until I finished chemo…bad timing). I never really ate anything, but when I did it was always something odd. When I started Chemo, the first thing I asked for was caviar and then I went to gherkins and corn relish. After that it was noodles, then just the noodle juice, macaroni, twiggy sticks and sausages. I also drank water, but I would only drink it from a glass if it had ice and I’d only use a straw. If it was in a bottle, I would drink it only if it was cold (very cold).

I also had really bad cravings for Hungry Jack’s cheese burgers and Coke. Coke was (and still is) something I drank a lot of. It was also nice when I had a sore throat, but for some reason it had to have ice in it or else I wouldn’t drink it.

The foods I loved before I fell sick became part of the list of foods I wouldn’t eat. For example, I loved garlic, but hated it when I was on chemo, I loved chicken, pasta, vegetables, steak, chops (or any meat for that matter) but after having chemo, I hated them and would be sick at the slightest smell of them.

Toniel Walton

2006 Update:
Toniel is now in the work force and in remission