Colin lies down on the table, head nestled in a custom head rest that still contains long strands of the hair we had to cut off a week before. I help him settle into his spot, but he knows the drill better than I do. I straighten his head and the tech puts the mask in place. He closes his eyes under the plastic mesh without complaint and she rotates clips that keep it in firmly in place during treatment. They show me how they line him up, red lines crossing to match pen marks on his skin that they redraw over small tattooed dots and lines on the chin of the mask.
Category: Treatment
Lucky 13
Colin has completed 13 of 30 radiation treatments and is more than halfway through the portion of treatment (20 sessions) that involves the whole brain and spine. This is our lucky 13, lucky in so many ways. We are lucky to be here at all and witnessing the joy of a child who had been slipping away from us only a month ago. We are lucky that he is cruising through treatment and cooperative with the process.
Same as it Never Was
Clouds ascend like sculptures, backlit by the setting sun. Wispy pink columns stand in dramatic array, the clump on top of one stack embellished with a viciously straight contrail that angles upward like a laser beaming from a cyclopean eye. It is a tiny thing but still audacious enough to pitch a galactic battle against an unseen enemy. The day closes over the Mississippi, with stormheads threatening their bounty of rain from the south. Colin and I have left the gentle wash of music and companionship of old friends on Mud Island, a sanctuary of gentile life only a stone’s throw from the urban grittiness that awaits patiently on the east shore of the mighty river.
Continue reading Same as it Never Was
Hawaiian Sunrises, aka Aloha Ra
It’s easy to get stuck on an idea: culturally imposed, personally fabricated, or more often a blend of both. For various reasons, I got it in my head to watch sunrise as a family every day of Colin’s Make-a-Wish trip to Hawaii. Colin himself has a certain fascination with the sun and the warmth and comfort it brings. Given the time difference between New York and Hawaii, this quest wasn’t as insane as it sounds, and one of our planned excursions was a sunrise jaunt to the summit of Mt. Haleakala, the dormant volcano that forms the highest point of Maui. I wouldn’t have considered it for the kids had we not been rolling off of a five-hour time difference where leaving the ship at 3 am equated to getting to school.
Continue reading Hawaiian Sunrises, aka Aloha Ra
Never Give Up
When we finally arrived in Boston to start proton therapy for Colin, the branches were already bare in Ithaca, but many of the trees along the Charles were still holding their color. The ginkos are just now releasing a carpet of yellow fans on the sidewalk. The night before we left Ithaca, the sky was crystal clear and full of stars; celestial bodies struggle to emerge above the cityscape, though Venus is tenacious in shining through the urban smudge. Continue reading Never Give Up
Of Mice and Little Boys
A few weeks ago, I heard the first doleful honks of Canada geese overhead, a broken vee portending the migration towards more temperate weather. This spurred me to mourn my loss of the change of seasons and a move into the crisp air of fall that is so invigorating, brightened by the cascade of brilliant leaves. Color has barely begun to kiss the tall, verdant maples in the neighborhood, a transition we would lose with our decision to migrate, like those geese, southward to Memphis. Continue reading Of Mice and Little Boys
Decisionation
The sky was muddy, a diffuse and dark reddish brown the disappointing color of light pollution, not an emerging dawn. It was no kind of sky within which to find clarity. Two days before, a sharp waning crescent hung in the sky, a cat’s claw poised to grab Venus, which hung like a winking fat jewel in the eastern sky. Then, Orion had greeted me abruptly in the south when I opened my door, the only constellation I could rightly make out in a tepid but clear sky. In the course of a short run, that bright figure faded into barely perceptible pinpricks, but the hunter still stood vigil. Continue reading Decisionation
Autumn’s Arrival
Leaves are starting to fall off the yellow poplar in the back yard, a tree I love for its huge waxy-plastic seeming flowers and the wide tulip-shaped leaves. The season is starting to turn gently, the weather still summerly but the yellowing leaves around the neighborhood serving as a reminder that school starts next week and life returns to that normal cycle. Except that it doesn’t, not for us. We are currently on a decision making hold, but the cascade of events that will follow looms ahead heavily. Continue reading Autumn’s Arrival
Plans and Perseveration
Saturday morning was a lazy one, but I determined to hit the loop inside of St. Jude’s campus before it got too hot for this Yankee girl to even consider it. The sun was already insistently warm before 9 am, but I figured I had enough time to squeak in a reasonable run before it became unbearable to my delicate constitution. The previous 24 hours had been full and draining, leaving me an exhausted heap curled around Colin in the blessedly comfortable bed at St. Jude’s Tri Delta House on Friday night. He had asked me to snuggle with him and I happily obliged, but in the morning I woke up still wearing Friday’s clothes. Continue reading Plans and Perseveration
Declaration and Decisions
Going into surgery, we knew that we would learn valuable information that would drive treatment decisions. The surgery itself promised to be rather ho-hum, endoscopically performed through either one or two holes, and resulting in a very modest recovery time. The anxiety wasn’t about the procedure itself but the findings. Continue reading Declaration and Decisions