It's now been 19 days since we received the first diagnosis. There have been some good days and there have been some not-so-good days. Today was a good day, which is definitely something to rejoice about!
Caleb slept through the night even with all the electrodes taped to his chest and the monitor clipped to his pants. He woke up in a relatively good mood & asked if he could have Toaster Strudel after treatment. It was refreshing to be able to tell him yes. Normally, he demands food "right this minute!" Then we have a struggle as we explain to him that he can't eat or drink until after treatment is done.
Today was my day to take him to treatment. This was my first day taking him by myself. I was a little nervous because I know that Richard usually carries him and when we've gone together, Caleb is usually not in a very good mood. This morning, he laughed & joked with the clinic staff.
Caleb has gained about 8 pounds in 19 days due to the steroids. He's really puffy & swollen everywhere. Because of this, the mask that he has to wear during treatment is extremely tight. It was custom-fit to his face 1 week before he began radiation before any swelling started. Also, due to the position his head has to be in, it was becoming increasingly difficult for him to breathe during treatment. His oxygen saturation level would drop from 98% to around 80%. So, this morning we were scheduled to have treatment then immediately after, another CT scan. The new CT scan is just to reposition his head, and fit him for a new mask so he can breathe easier and won't look like Spiderman after every treatment. The doctors joked this morning that we should color in all the mesh-marks on his face for Halloween before they disappeared for the day.
We got news that we can reduce the steroids again, so we are excited about that. We'll get to reduce the steroids again on Monday. This should help his attitude improve a little and will hopefully reduce his appetite again. We have to be watchful that he doesn't start having more severe headaches or start vomiting because we'd have to increase the steroid dose again and we really don't want to have to do that. So those are a prayer focus for us, along with his complete healing.
I have a couple of songs that have been running through my head for the past 2 weeks. They comfort me daily & I thought I'd share them with everyone.
The first is an old Hillsong favorite of mine called "All The Power You Need"
This is a newer Hillsong favorite (notice a pattern here? ;) ) called "Lead Me To The Cross"