Week Sixteen

There are times I think he’s happiest at the hospital. He may grump about me and Deb camping out and keeping him company, but the doctors, nurses and the folk from Child Life give him people to talk to and things to do. He sasses and gets sassed back, everyone wearing big grins.

We had one incident this week as he reacted poorly to one of the new chemo drugs and it was another reminder that he’s there for a reason. Sarah, his day nurse for most of the week, said she’s actually surprised he wasn’t sicker. The side effects of the drugs tend to kick people fairly hard. Robbie, though, seems designed with a high tolerance which impresses them and us.

On Wednesday, we watched a DVD Tonetta, his former primary nurse, gave him to watch. She’s now working with the oncology team on the Heroes project, for people in remission for five years. To her, White Walls was as an upbeat documentary about teens surviving their cancer. It was fun, sobering, and very real. About halfway through we realized the 20-year documentarian was herself a survivor who had a bit of a scare during the making of the project. There were a few moments while watching it that got tough, especially as the kids talked about recurrence, an all-too real possibility. One twice-over survivor said, “I’m in remission every day, for the rest of my life.” It really brought home to us how long term this is and will be.

He finished round four on Thursday morning and came home. The window of opportunity was briefer than last round so Deb took him out for lunch and on Friday I took him to an Iron Man matinee. In the car, he admitted he was feeling the effects more this time. He’s tired, tires easily and can’t muster up the same energy and enthusiasm he has other times. So, now that he’s here, he watches TV, plays around on line, and paces himself. He’s turning in earlier, getting more sleep.

Robbie looks pale already and is likely going to need blood products at clinic on Tuesday. The doctors, though, continue to marvel at his strength of will and endurance. They remain happy with how he’s handling each round and recovering in-between. A few weeks to recover and right around Memorial Day we go in for the final round.

He’s already looking forward to having June to recover so he can really enjoy Shore Leave in July. More than that, he’s eagerly anticipating his one week of being a volunteer counselor at Hole-in-the-Wall Camp. While at the hospital, he received a packet of information in the mail and he read through it. Week nine is the week siblings come and experience the camp for themselves. The theme that week, appropriately enough, is super-heroes. Robbie already wants to raid my t-shirt and watch collection to come properly attired.

Looking to the future is good for him. And good for us.

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