Week 5

Halfway there! It’s nice to be closer to the end than the beginning!

Monday was Memorial Day so City of Hope was closed and he had a break from radiation. It may not seem like much but man it was nice! Since he has labs every Saturday (specifically timed in relation to chemo, so no flexibility there) Sunday is the only day with no place to go. Having Monday off was very refreshing!

Tuesday was chemo and again all his labs look perfect. It is surprising the staff, as they rarely see someone stay so stable. They especially expected his magnesium to plummet but it hasn’t!

He is having some throat pain but thankfully it’s still mild and only when he swallows. His biggest battle is having no appetite but needing calories. There have been days he doesn’t drink his required calories, taking in less than 200 in a day. He lost 7 pounds in 7 days. He’s lost over 30 pounds so far.

On Thursday at the weekly Dr appointment, he was told he had to have a new radiation mask made. He balked at the idea but the Dr gave no choice. That mask was made on Friday and now that they all know me better, I was allowed in to watch and record it so I’ll include that below. This stuff fascinates me lol. There are some photos below too if you’re not a video watcher. 🙂

It takes a few days for the radiologist to make the markings so I don’t know when that will be put to use.

When he has chemo on Tuesday, he usually sleeps the rest of the day and through Wednesday. His biggest discomfort is the thrush that is lingering. It’s a challenge to battle that since thrush thrives on sugars and dairy and Ensure is loaded with both. I have yet to come up with a tastey (to someone with damaged taste buds) and high calorie substitute. It would take too much quantity of anything else to get the calories in.

When I talk about him having no appetite, the best he can describe it would be this… have you ever had a meal that was SO good that you ate until it was all gone, waaayyy past the point of feeling full? Well imagine that and then imagine being told you HAVE to eat the same amount again. uhg. No way.  That’s how he feels all the time. Even first thing in the morning.

Friday was Stacey’s first day of Summer break. This makes the schedule a little wonky. There have been so many ways the Lord has shown Himself through all this, but He is the bomb at scheduling! 😉 Every time something comes up, there is a solution waiting. Like Friday, with Stacey being home and Carlos needing his new mask made, we would be gone longer than I’d want to take her with us. Well, perfectly timed, Michelle had the day off and could keep her at home. Even the next two week of her being home and still having treatments, it all falls into place.  Robby’s work schedule will change on the 12th, but so does CJ’s and guess what, with both changing, someone will still home with Stacey since Michelle will be working. Back when we had soooo many appointments to go to, every single time, the schedule worked out, even having someone to get Stacey on or off the bus, and getting Robby to and from work. It was a balancing act for sure, but not once did we get in a bind. We did take her to one appointment a few weeks ago, and it went so smooth and was actually a huge blessing. So, praise the Lord!

Also, in other news… last Thursday was FOUR years since Stacey’s last seizure! In October it will be two years off all medication. So you see, the Lord is still in the miracle business. Amen!

radiation mask


After soaking the mask material in a tub of hot water to make it soft, they press it over his face and snap those black buttons to the table to secure it. Note the clear look to it. It’s adjusted and stretched and pressed against him for about a minute.
Cold towels are added to help it cool and harden faster. The less time he has to have his head bolted to a table, the better, right?!
As the mask cools it turns white and hardens. The red beams help make sure he is centered. They use sharpie to mark where those beams intersect.
Little BB’s are added to the sharpie marks. These are used in combination with the cat scan to pinpoint the exact points the radiation beams will hit. The radiologist will calibrate all of that later.
We stepped behind the window to watch the cat scan images on the screen.
The finished product.  Halloween costume ideas are now being accepted. 😉

Below is a video that shows the mask before it is wet and he explains what he will do.
The beginning shows how he soaks the mask first, then they talk a while about shims and the fitting of the mask. The mask will cure over the next day and shrink more so they use cloths and some plastic shims to allow for that shrinkage as well as to allow room to add a shim if they need to tilt his head one way or the other.  The towels are all labeled with his name and notes on how many folds. These stay with his mask at all times.



Below is a longer video of the entire process.
Key moments you can skip to if you just want the main thing…
0:00 – 2:42 – positioning him and the shims
2:42 – 6:35 – shaping the mask
6:35 – 8:00  – explanations while the mask dries.
8:00 – 10:38   marking the mask and adding the BB’s.
10:38 – 13:00 watching the cat scan and screens from behind the window
13:00 to the end – removing the finished mask

By the way, the blue ring he is holding is to keep his arms in place. They take pictures so they can see each day that he is the same spot – consider the changes raising a shoulder can make to your neck and skin. With radiation, those little changes matter a lot.