The Radiation Plan

We are going to do this. I knew before we went in for our consultation that we would. Quinn knew it too. I was hoping the Lord would tell me something different, but out of the blue this morning while I was drying my hair, I got the impression that this is our course. So I said a very tearful double-check prayer and was told that it is. Here are the sobering details on why.

CHANCES
Our radiation oncologist, Dr. Watson, told us that Teague's particular type of ependymoma, because of its location, is more likely to regrow than other ependymomas. With no treatment the chance of that happening is 60% (not 20 to 40% like we originally thought). After radiation, that figure drops to 13%. That number, I almost like. Since there don't seem to be any zero-percents, I'll have to take it.

The survivability numbers are also more serious than we originally thought. At five years, without radiation, only about 60% of patients are still alive. With radiation, 80% of the patients are alive after seven years.

I know, I probably sound like an idiot saying I didn't think my kid's cancer was "that" bad. We are learning more every time we see a doctor.

REASONS
The reason for the treatment decision change is that they've done new studies where they've radiated children as young as 13 months with lower doses of radiation than they use on older kids and had good outcomes. The standard of care up until now has been to hold off on radiation until the child is at least three, doing either chemotherapy or just checking with MRIs in the meantime. But the survivability goes way down when they wait on the radiation.

It's clear that this treatment will significantly improve Teague's odds of being cancer-free. And evidently, living, for that matter. It's going to be hard, but I know deep inside that this child will survive this cancer. Getting there will be the hurdle.

TREATMENT
Prep step one is putting in a Hickman line, which will be kind of a permanent IV just below Teague's collarbone. He'll have tubes coming out of it that they can just hook into every day for his sedation. The sedation is to keep him still during treatment.

Prep step two is getting a new MRI. The diagnosis MRIs he's had done already show 5mm slices, and Dr. Watson needs much closer ones so he can accurately plan where to shoot the radiation. I think he said 1mm. The irony is that he has to get near the brain stem (where the tumor was attached) without directly hitting the brain stem. He also has to be sure to miss the pituitary gland and one other important thing but I can't remember now what that was. They'll have to come at that area from several angles while missing the important things. I guess this is where physics and math really figure into medicine.

Prep step three is a CT scan with the radiation mask on. The mask is to keep Teague's head still during treatment and to ensure that they're always hitting the same spot. The CT is to give them images of Teague's head and mask together. Dr. Watson is going to make Teague's mask look like Elmo.

I'm pushing for the MRI and CT to be done on the same day since both will require sedation. I need to economize the irritation to my toddler (and minimize our trips to the hospital).

Teague's treatments will be at LDS Hospital in downtown SLC. I will have to bring him there fasting at 7:30 every weekday morning for six weeks. With sedation, radiation, and waking up, we'll be there about two hours each time.

SIDE EFFECTS
During treatment Teague will be tired, the back of his head will lose hair, and his skin will be burned like a sunburn. This treatment could affect his balance, but the doctor said not to the point where he can't do active things like play sports. He might just have to work harder at them than he otherwise would have.

Teague's speech may be affected, and he may end up needing extra tutoring in school. Dr. Watson said he should be able to stay within normal learning ranges for his age and grade level. A steeper learning curve. That's the part that made me cry. How can I do this to my child?

Teague will have neurological assessments before and throughout his treatment so we'll know just how much they're damaging him by saving his life. I really don't know how you can tell at age two what kind of a speller he'll be or if you're screwing up his algebra skills.

I have to remind myself that these are all possible side effects, not definite. Hope, hope, hope.

THOUGHTS
This is all too much information and realization for me to process at once. Too many emotions to feel. We know this is the right way to go. It is still scary. Even though we are to the keeping-cancer-away stage, which is probably a better place to be than the let's-get-it-out stage, I am more emotional about it.

I've renamed today's visit. "Consultation" is a new word for "here's how much freaking danger you're in."

This stuff evokes the fight-or-flight response in me. But this time, I'm more scared. I still say, fight. The cancer and the trepidation.