Radiation – The Good and the Bad

Well, when Geli was diagnosed with Leukemia, we were given a schedule of the chemo that she would receive for the first month. After the first month was finished, we were given the schedule for the remainder of the treatment period. As I read through the material, I got to the section that talked about cranial radiation.

I wondered what all that entailed, but there was SO MUCH information coming at us and it was almost impossible to absorb it all. I’ll admit that I was nervous and concerned about the radiation, but I quickly brushed it off as we were looking at almost a year down the road before we’d have to deal with it. And so we carried on.

Back in January, I started to think about the Radiation again. I started to look into what exactly was going to happen. It was pretty scarey. And once I realized that I was scared just thinking and reading about it, I started trying to figure out a way to explain it to Angelica and the kids that would make it seem less scarey.

When the kids were little and we’d watch a Disney Movie….as soon as the villain came out as being overtly scarey and evil, my kids would be done with the movie. They’d run from the room, yelling and carrying on about how they didn’t like that movie….the worst one was The Little Mermaid Movie. I didn’t want my kids to be scared of something as stupid as a movie and I didn’t want them to give up on every movie that we watched just because there was a part that seemed scarey as first. I wanted them to see that often when we carry on through the “tough” times, there is a good chance that in the end, we will win or triumph over the situation.

And so I’d go and get them, I’d talk about the villain and how nasty they were and then I’d give away the ending. I’d talk about exactly what was going to happen and then I’d make them come and sit on the couch with me and I’d TOTALLY WRECK the rest of the movie. Scene by scene, I’d tell them what was about to happen and we’d finish the movie off that way. As soon as it was over, they’d be asking to watch it over again and over and over and over again….it was no longer scarey because I’d taken away the element of surprise. Knowledge is power and I decided to use that same approach with the radiation.

I explained about how she would need to go in before the radiation treatments to get a mask made. How they would lay her down on a hospital table and drape this material over her head and face. That it was kind of a breathable mesh, and that it would be pliable but would harden into the perfect shape of her head and face. That it would take about an hour to make this mask thingy. When it was time to get the radiation on her brain, that she would go into the room, lie down on the table and they would attach this mask onto the table so that she could not move. Because when you are dealing with radiation, you don’t want to make any mistakes and end up with the radiation going somewhere where it shouldn’t go….

It would take about 5-10 mins for her radiation treatment and during this time, she would be in a room strapped to the table and the radiation machine would move slowly around her sending waves of radiation into her brain to make sure that there were no stray cancer cells in her brain.

If she happened to have any hair left at this point, she would lose it and it was possible that she’d end up feeling like she had a sunburn on her scalp.

I explained this all trying very hard to not frighten the kids, but to make it all very matter of fact and yet, I was nervous. I just kept thinking….do we have to go through with this? She’s never shown any indication that her brain was involved and she’s had the chemo injected into her spinal fluid? Isn’t there something else that can be done?

Now, I had read a lot of material at this point and some of it confused me. There was conflicting information on whether or not cranial radiation was necessary or even beneficial in kids who had never had cancer show up in their brains. There was information about how in the States children with Leukemia who showed no signs of cancer cells in their brains didn’t need to have the radiation treatment. It seemed like the long term side effects of the radiation were actually worse than the possibility of a chance that you might end up with cancer cells in the brain.

Jon went in at the start of this last stage and our Dr and nurse talked to him and explained some about the radiation and how it seems in Angelica’s case that the radiation was unnecessary, but that we’d have to actually meet with the radiation dr. to discuss the whole scenario. An appointment was made for a week later and we started talking about the whole situation between ourselves. We weighed the pros and cons and in the end we decided to opt out of the radiation treatment.

Jon was fully prepared to stand for our decision to the Dr and yet when he got there, she explained all the benefits and ALL of the side effects and in the end, there was no need to “stand”……the decision was just made, in Angelica’s best interests, to not go forward with the radiation.

In Geli’s case, the slight possible benefits to having the radiation are grossly overwhelmed by the negative side effects and as of right now we see no need to put Angelica into that kind of a position.

We have such a peace about having this portion of her treatment cancelled. We were willing to go ahead with it, if it was absolutely necessary, but I was not excited about it. To get to this stage and to have that worry or concern removed from our lives is such a HUGE blessing.

And so TODAY we start the last 4 weeks of treatment……we are counting down and we are so excited about it.

28 days…….

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys. View all posts by Patricia Culley