Cycle 1

After three weeks of Eli’s new medication, he will get to take a break from it for a week. This medication is given in 28 day cycles: 21 days on, 7 days off, and will repeat until it stops working. Within a week of starting Stivarga/Regorafenib, Eli could tell his thigh tumor was shrinking. I wasn’t so sure, but thought he might be right. By the time he had been on it for two weeks, I agreed with Eli–there was definitely some shrinkage. We also went from half dose at that point to 3/4 dose. By the time we had simulation at the radiation clinic this week, not only was his thigh tumor even smaller, but I could tell the little one in his arm was shrinking, too. While I thought I was okay with stable disease as my main goal for this treatment, I think I would have been disappointed had there not been at least a partial response.

In preparation for radiating three of Eli’s tumors, They did a little CT scanning of his foot and upper body. Both masses in his upper torso had shrunk, with the one on the right having mostly disappeared. The foot tumor seems to be the only one that has remained stable. As with his initial presentation with this cancer, I think relapse began in his foot, then jumped from there. The original response to frontline treatment showed greatest improvement in the tumors in his leg, with his foot tumor being the only one that didn’t disappear by week 9 scans. It was necrotic when it was resected, but the structure was still there. Since the current foot tumor is stable instead of shrinking like the other ones, I think it has been there longer, so it will take longer to respond in the way I’d like.

Meanwhile, as we taper up Eli’s med, we’ve been watching for side effects. Initially, there weren’t any. At the end of week two, while he was still on a 50% dose, Eli accidentally took a second pill at night when he was taking the antibiotic that they have him on prophylactically. He had a minor gastrointestinal issue the next morning that he attributed to the medication, but nothing like that since then.

Last week he started to complain to me about headaches and wanted to go back to 50% dose. I suggested he take a Tylenol. His response: “I don’t do drugs.” Just like he doesn’t do tattoos? Yeah, he has more tattoos for radiation now. I wonder what else he doesn’t do.

The radiation was originally going to be 5 days of high dose ( 2 days one week, 3 days the next), but the radiation oncologist called and told me that the treatment area for the foot overlaps the previous treatment area, so we have to do a lower dose over a longer period of time: 13-15 days. So that will be about three weeks. Adam and I were disappointed. Eli’s response? “That means I get more Friday prize days.” When he did radiation last time (6 weeks of it), they had a prize box he could get things every Friday.

School

School has started up. I had wondered before entering the world of cancer about parents who still had there kids do school, even when they knew their child wouldn’t survive. I am hopeful that Eli will survive longer than expected, but there is still the fact that life is going to look different for the foreseeable future. So what do I do about his education?

We were already homeschooling before cancer interrupted life, so that is what I continued to do. I let my kids take electives at the high school when they are older, so that’s what Peter and Ella are doing. It occurred to me last month that Eli might want to take a few classes, too. I don’t really like having the kids take classes at the junior high for a variety of reasons and was glad when the district chose to make the new high school nearby 9-12 grade instead of 10-12 like they did at the previous high school. Anyway, I ended up enrolling Eli at the high school for his electives. One of the classes is with Ella, so that’s fun. He’s taking Engineering, Drama, Stage Craft, and Seminary (our church has seminary classes at a building adjacent to the high school). Next semester, he will take Game design instead of Stage Craft, and will continue with the other classes.

I never thought I’d put a 12 year old in high school, but it just kind of made sense with Eli. He’s mature for his age and smart, so I think he’ll do okay. There have been some bumps as the school is doing in class and online learning simultaneously this year because of Covid-19, but we finally finished setting everything up yesterday, so I think we are past the worst of the bumps. The upside to the changes is that it will be much easier for Eli and his siblings to continue to school as we continue to plan trips to the beach and other adventures.