Today marked day 5 of radiation for Matthew. His protocol calls for 30 sessions of IMRT radiation. This works out to 6 weeks of radiation, for 5 days each week. On Monday, my mom watched our other 5 children, and Warren and I took Matthew for round 1. We were nervous, and a little excited (after all, radiation is meant to KILL the tumor. We are pretty giddy and optimistic at that thought). That first day was a challenge. Nothing strikes in your heart the reality that 'your child has cancer' more than watching them have their radiation mask get bolted down to the table.
After the mask is fitted, a frame is placed over the mask. This frame sets 'markers', so they can be sure the radiation is reaching it's intended target. Each day, Matt receives 2 quick X-rays to make certain nothing has shifted. Then, he receives his therapy. In Matt's case, there are 7 different beams of radiation. Each beam delivers 3 minutes of radiation. Therefore Matt spends approximately 21 minutes each day in the radiation machine.
Since we are not allowed to be in the room or even watch the monitor while he gets his radiation, we can only guess what exactly happens. I do know that there is a large 'arm' above him on the machine that can rotate and also the 'bed' Matt is lying on can rotate slightly in 6 different directions. I'm sure it's not quite as intense as a simulation ride at Disney World, but that's what it reminds me of when they explain it!
Matt was thrilled with the way his mask turned out - and so were we! It has sort of a graffiti look to it with the words 'Cancer Sucks' written across it in red. If you know our family, you know that we don't usually speak like that, or allow our children to speak like that. BUT, given the circumstances, it seemed appropriate! :)
On Tuesday, we had all the boys with us. We had Will go in with us so he could see the machine and get a sense of what Matt was doing each day.
On Wednesday, we met up with a friend that Matt met at 'Camp Hobe'. Truly, an amazing camp! Anyhow, Matt and this boy were in the same cabin and hit it off. They are the same age and he also has a brain tumor, slightly different pathology, but with most of the same symptoms that Matt has. I cannot tell you how refreshing and therapeutic it is to spend time talking with another mom who totally and completely 'gets it'. I don't have to explain ANYTHING to her. We have the same daily challenges, the same long-term concerns, and similar personalities when it comes to advocating for our kids. It was great!
The logistics of radiation are proving a bit tricky, but doable. School started this week for my older boys. Warren has those 3 here at home. Since they are gone from about 8:30 to 4:00, it allows Warren to get a full work day in. Starting next Monday, I've hired a girl who just graduated from college to come every day when the boys get out of school. She will help them get a snack, do their homework, and practice piano. Matt and I are staying in Layton with Warren's mother. She has been gracious enough to welcome us and is proving extremely helpful in every way! We've scheduled radiation for 2:00 in the afternoon with the hope that we can put Jake and Audrey down for naps and they can stay with Carolyn while Matt and I run to his appointment. It's about 2 hours door to door, so it's perfect for a nap time for my littlest ones. This week went off without a hitch. Matt's school has also been very accommodating. We went in and spoke to them last week. They have a home-bound teacher who will be collecting all of Matt's work and acting as a go-between for the school and Matt. Since he should feel fine through radiation, he should be able to do his homework. He's a kid who thrives on school and schoolwork, so hopefully this will just be a blip in his school career.
Thanks for thinking of us and checking in on us! We're just plugging along at this! It feels a little bit like eating an elephant, but we're slowly taking bites and are 1/6 of the way done! :)