Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

July 2, 2016

Gentle Fire

Filed under: Death,Interpreting MRIs,Radiation,Uncategorized — Tags: , — Mom @ 12:56 am

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.

Colin’s last IMRT treatment

The techs follow the time out procedure, detailing the radiation treatments Colin will receive. The text is on a screen on the wall alongside a picture that further verifies the patient’s identity beyond his armband. They took the picture when he was sedated for simulation, when we weren’t sure if he’d tolerate treatment awake. It seems a million years ago, but the recent surgery scar is prominent in the photo of Colin beaming for the camera, headphones on, having most likely paused a Minecraft video for the occasion.

With Colin cleared for takeoff, one tech asks what he listens to and I realize this question is not aimed at me, since I have no idea what goes on in this place of dastardly healing. The second tech answers and they start up music. It is the soundtrack to the movie Cars, the gentle happy tune that accompanies Lightning McQueen’s countryside drive, the one where Pixar’s animators showed off their ability to replicate the world convincingly with leaves swirling up and puddles shimmering and splashing under the wheels of the animated cars. This is Colin’s last treatment of the whole brain and spine, his last visit to the same gantry where he came, a little sedated bundle, more than six years ago. Back then I knew that a return trip to this machine would mean we were in a different place, but I couldn’t have guessed how things would play out and how thankful I would be for the hope of months, even less than a year, of benefit from this go-around.

McQueen and Sally Drive Along a Dangerous Highway

When I walk out, music incongruous to the business at hand playing softly in the background, Colin remains stock still. No wonder they thought he was asleep the first time he got on the table. He complains it is boring, yet he is a master at following directions and staying absolutely motionless during treatment. Outside the treatment room, I watch the sequence of checks and treatments. They verify placement then start the sequences. Spine, then brain. The silhouettes are blocky and crude against the CT scan of Colin’s body and head.

The patient patient

The computer screen shows the unsubtle configuration of the multi-leaf collimator, whose metal slats slide back and forth to shape a window for photons to shoot forth. In 2010, the collimator flew from one shape to the next, running through an elaborate sequence designed to spare as much normal tissue as possible while wreaking devastation on any remaining cancers cells. Today, the quiescent rectangle of green stripes looks like a single frame of a primitive CGI animation model, blocky and crude, with no rapid transformation from one shape to the next.

Maybe I should feel melancholy about this and about the place we find ourselves in, but it would be impossible to justify any sadness right now. Colin has defied the odds yet again. We had no guarantees he would survive to his birthday, yet here he is trucking on. We will leave Memphis with the gift of another spate of breathing room when we had arrived here with the shadow of the gravedigger’s heavy spade falling into our eyes.

Shattered Chains

The acceptance of mortality and abandonment of “cure” are liberating. There is no need to cling desperately to far fetched hope or slim chances. Our hopes are modest and attainable and they render us thick with gratitude. We are humbled by the many people who have made Colin’s circumstances today materialize and who supported our desire to push the boundaries that Colin tacitly asked us to move on his behalf.

For the first time within my lifetime, there was a full moon on the night of the summer solstice, Luna’s contoured face hanging low in the sky behind a smattering of clouds. That strawberry moon (the name for June’s full moon) made for a postcard picture just over the hospital, but the haze and light pollution made it impossible to capture. Rare and elusive: sounds familiar.

Summer Solstice Strawberry Moon Over St. Jude

Colin’s 20th IMRT treatment marked his shift to St. Jude’s new proton therapy center. Later the same day, he did a simulation for the last ten treatments that would fine tune our assault on the mass of tumors in his ventricles, the residual cells that certainly pepper the recent surgical tract, and the disease that has crept up the shunt tubing.

That invisible peril is nowhere evident in the little boy who climbs onto the table on gantry one. I’m careful to avoid whacking my head on the low hanging cone CT that will later slide into place to confirm placement. Colin’s been suffering from allergies, and even on antihistamines complains that it makes him dizzy to lie down. He sits up quickly and I help him lower down more slowly. The contour of his face is still adorable under the new green mask used for protons.

Earlier in this day, we had met with Dr. Merchant and finally saw an MRI done several weeks before. When it mattered, when it guided treatment decisions, we couldn’t tolerate waiting even a day for results. When he pulled up the images, at first I thought they were from an old scan. The corpus callosum, the straight dividing line between the two hemispheres, was restored. The long tube of tumor, two large cysts and edema had crushed the ventricles in the front and distorted the basic configuration of the brain. The black butterfly of fluid in the ventricles spread its wings again. Though clustered masses of tumors still crowded part of the left ventricle, the relief of pressure was palpable.

“I’m excited about the radiation plan,” Dr. Merchant said. What exactly makes a radiation plan exciting? The boost mostly focuses on fluid spaces, including the dark tunnel left by the frontal lesion. Also, a MET-PET scan highlighted areas of activity along the shunt tubing that are prominent in the plan. Most of this is outside the original treatment area, except the lesions along the brain stem, which is already heavily treated.

Inside a Black Hole

I am no expert at reading MRIs, but I have stared with sickened horror at the images that have described the evolution of dread inside Colin’s skull. Today, he asked me if I knew what was inside a black hole. I said I wasn’t sure and asked in return if he did. He imagined that it looks distorted, and like a cartoon, and that if you stay long enough things get smaller. Maybe we avoided scrutinizing the scan not only for practical reasons but also because it is dizzyingly painful to pick through the details of the coming destruction.

The Sun Through the Storm

The Sun Through the Storm

This time, the gray scale pictures rewrote the story, turning back the clock to a time when we had time. It is a movie where the saw blade draws close to the protagonist then pulls away at the last moment. We watch the drama consumed with breathless tension, and the whirring buzz recedes.

The pencil beam paints a pattern, a dot matrix printer of protons delivering gentle fire. The gentleness is relative; radiation is always a harsh, sharp tool. It is easy to get nicked and burned, but we have no better medicine at our disposal.

The price is small compared to the gain. We get summer, not the long bake of Memphis but temperate days separated by cool nights. We get to plan a school year. Time stretches back into a more relaxed shape, less distorted by the insistent urgency that contorted our last days at home.

Rainbow in Memphis

I may not live to see another solstice strawberry moon, but I know I was lucky to see the first. I am lucky to live in a time where there was a boundary to push and something to push it with. I am overwhelmed by the bounty of my good fortune and the circumstances that allow the sweetly intoned words “I love you, Mom” to kiss my ears. The moon is full indeed.

9 Comments »

  1. I am always amazed at how brave Colin is! Sending warm wishes for a healthy, fun summer! *Hugs*

    Comment by Miss Beth — July 2, 2016 @ 9:04 am

  2. Yeah Colin!!! Wishing you all a wonderful summer of good health and blessings! The Cappiellos

    Comment by Christine Cappiello — July 2, 2016 @ 9:37 am

  3. What a trooper! Colin again amazes and inspires. And so do you, Tamiko. You face what most people would say is the “worst thing that could happen” with love, courage, thankfulness and even humor. And you clearly put self in the background and family first. Good job isn’t adequate but it’s all I have.
    Love to all, Diana

    Comment by Diana Netzer — July 2, 2016 @ 9:57 am

  4. What a trooper; Colon is amazing and, as usual, exceeds all expectations. And you, Tamiko, handle what most would call the worst thing that can happen with love, courage, thankfulness and even humor. I feel inadequate and repetitive saying “good job”, but here it is, good job!

    Comment by Diana — July 2, 2016 @ 10:11 am

  5. So happy to hear things are going so well! Can’t wait to see you back home. I will keep the prayers,and positive thoughts going in your
    direction! (((HUGS)))

    Comment by Cindy Ceracche — July 2, 2016 @ 3:34 pm

  6. Tamiko, may I please have an address where I can send Colin and his Brother a card. It is up to you if it is OK or not. Your entire family is always in my thoughts. Your (now much older) old neighbor from Long Ridge Road – David
    PS: My best to the Boys!

    Comment by David Forgas — July 5, 2016 @ 7:38 pm

  7. All of our love to the bravest young warrior we know. He and all of his family members are an inspiration to us all
    -The Taylor family

    Comment by B Taylor — July 24, 2016 @ 2:25 am

  8. Glad to hear that Colin can still enjoy summer pleasures and you can still hear him say he loves you.

    Comment by Kathy Stevens — August 3, 2016 @ 9:12 am

  9. Hi from Arizona,I am Tracy’s Aunt Lori.I am a retired post Partum nurse.Blessings and prayers for continued successful treatment. You are a gifted writer and let all of your followers look through the window at what Colin’s life is like.Whew,what a journey you all have had.Thank you for sharing and I will continue to follow it.We all need to celebrate each day and stay in the present.Tracy can tell you about my challenges through the years.I’m always looking for inspiration on coping with what life throws at you and rising above it.GOOD JOB 👍🏻🙏🏻Always Feel GODS comforting arms around you and your family HUGS

    Comment by Lori (Robbins) Michaelson — August 21, 2016 @ 4:48 pm

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