Scans Week Upcoming!

This is the week of Thomas's 24-month cancer scans . . . which is probably all I need to type for my Cancer Parent friends. 'Nuff said.

Prayers are appreciated!

Scan weeks are tough for parents. Thankfully, Thomas is young enough and has no fear of relapse that he's pretty content to go on some outings and spend one-on-one time with his parents. He might get a restaurant outing from Mama, and the hospital might give him a gift or two, which he always likes.

We have an "urgent" appointment scheduled with GI while we are there: if you're a patient who qualifies for having a GI doc, normal appointments wait 4 months or more, an urgent appointment in our case is about two weeks out, and if there's an emergency, that's what Emergency Rooms are for. Thomas was so unstable recently, I had to ask his doc for guidance on what would qualify as symptoms enough to take him to the ER. We have spent a couple of months carefully coordinating—*so* *many* *phone calls and emails*—some other procedures while Thomas is under general anesthesia: his surgeon will change Thomas's button (for my tubie parent friends: it's a special kind of button) and Radiology will do an MRI to examine what is going awry with Thomas's liver and/or pancreas and/or GI tract. This follows on numerous labs last week. 

It will be three full days of outpatient appointments at the hospital and a lot of my cheerfully helping Thomas pass the time. I live in the bizarre universe of Medical Parents: part of me feels comfortable and normal living the hospital life now, while the other part of me will interject and ask how on earth these serious concerns have become our normal life?

I've been through enough of these weeks to have learned a thing or two about my own nature. "Scanxiety" is really tough. This time around, I'm actually more concerned about the GI struggles Thomas has newly been having these last five months. I've been quiet about them on social media, but he has lost weight and his quality of life involves renewed suffering these days. 

In the last couple of weeks, I've been in full-on Mama Bear Mode: researching, reading, creating charts of Thomas's data, writing repeated letters and texts and making calls to doctors, and even calling corporations about medications. I was willing to look like an annoying fool to get him the medical attention he needed. We are back to Thomas having to take meds and supplements on a strict schedule all day long, which also adds to complexity when we go out of the house. I thought those days were over, but they're back.

I want answers from the MRI, but I am anxious about more bad news.

I've learned that on weeks like this, I need to clear the decks. I teach almost no homeschool at all. I plan the simplest dinners. I plan and purchase Thomas's favorite and most sustaining snacks and lunches for all our time hanging around the hospital. And rather than fight the insomnia I'm bound to have, I've come to accept it as an old, familiar acquaintance. Going into a week like this, I plan what books I might read or shows I might watch in the middle of the night when the hours need to be passed. Knowing about the fatigue, I try not to allow myself to have important conversations or make important decisions. Even if Chris can’t stay all day, he drives Thomas and me to and from the hospital on scan day.

If you can spare a prayer this week, I'd appreciate it. Thursday will be the longest day at the hospital.