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


September 11, 2013

Repost from Huffington Post: Tale of Two Futures: Mom Reflects On Childhood Cancer

Filed under: Death,Perspective on Cancer,Rehabilitation — Tags: , , — Mom @ 9:49 pm

I apologize yet again for the long delay in posting. My many promises to myself to write more quickly seem to fall flat and I have a half-written post awaiting final digestion. In the meantime, St. Jude asked if I would submit a contribution to the Huffington Post for Childhood Cancer Awareness Month. The essence of this piece has been floating in my head for years and would constitute the core of the intro of a book if I do get around to compiling these posts into a book. I am pasting the text below but I am also including a link so you can share on Facebook or retweet or what have you:

Tale of Two Futures: Mom Reflects On Childhood Cancer 

There are two versions of this moment. It is my older son Aidan’s wedding day. We share a few quiet minutes together, a mother fussing over her boy before he takes a long step deeper into adulthood. In one version, I clutch his brother Colin and break down in tears. In another, I hug Aidan and weep over the conspicuous absence in the room. The two versions are similar but profoundly different, cathartic and joyous yet suffused with either relief or sorrow. This moment follows me every day, whether it is a conscious thought or an off-colored thread in the fabric of my daily life, barely perceptible but ever present.

You see, just as Colin turned two, he was diagnosed with ependymoma, a malignant brain tumor. In those early days, my husband and I grappled with a new and unwelcome vocabulary and the reality of a meandering tumor that had insinuated itself around the core of his brain. We had also unknowingly gained passage into a foreign land: pediatric cancer.

The colors are the same, but the hues are different. I have come to see the world through a new lens that both clarifies and distorts but never fails to touch my perception. The idea of losing my child to cancer is still unbearable and I can’t let my imagination wander to the place where that loss is real. However, I can indulge myself a glance at a time in the distant future where that particular fork in the road is a receding dot in the rear view mirror.

On a muggy Memphis night four years ago, we arrived by air ambulance at St. Jude Children’s Research Hospital. With several months in hospitals under our belts, we were well aware of the reality of Colin’s situation but clung to the hope that his new doctors offered. Our attempts to remove the tumor, Colin’s only hope for a cure, had robbed him of his ability to eat, speak, cry, or even move his steroid-bloated body. After all this, a few small but stubborn remnants of tumor put him on the wrong side of the odds.

aidan and colin

Colin and his older brother, Aidan

Following an experimental protocol for young children with brain tumors, Colin went through chemotherapy, radiation, and a third surgery. He officially ended treatment in October of 2010 and has had stable scans since. Over the past four years, he has relearned how to eat, walk, and talk, but today he is in remission and entering first grade. In the mainstream classroom, Colin stands out, but more for his infectious laugh and sunbeam smile than his many dimpled scars, a zombie gait and crooked smile. Ependymoma’s relapse rate, even after five years, casts a long shadow but won’t ruin our party.

If you didn’t already know, St. Jude is the patron saint of lost causes. Indeed, we have known many families who were turned away elsewhere who, like us, ended up on St. Jude’s doorstep searching for a cure or at least something besides nothing. So many of these “hopeless” cases have returned home with buoyant grins and newly sprouting hair. Others have slipped beyond their parents’ grasp, where a mother’s final hope is that researchers can learn from her child’s disease and save others in the future.

This is how, in the 50 years since St. Jude opened its doors, we saw the cure rate for the most common form of leukemia skyrocket from 4% to 94%. Most St. Jude patients are able to walk away cancer free because of this and other improvements in treatment, but there is a special feeling for those children who need the providence of the hospital’s namesake the most.

Colin’s story is not over and our life as a cancer family will never end. These experiences have changed me as a mother and human, though not for the worse. We have met incredible people and seen miraculous things. I will never stop being awed by the amount of dedication and effort it has taken to give Colin back his childhood. To all but a mother’s eyes, the broken down little body that arrived in Memphis was a lost cause. We are grateful for those who work to turn the tide and give hope to children with cancer.

September, Childhood Cancer Awareness Month, has lit up the internet with stories and facts that enlighten, horrify, and tug at the heart strings. My own family’s story is one of hope and triumph in the face of daunting odds. I embrace our joy and gratitude fully, yet always with one eye to that moment in the distant future where tears will mask the unspeakable words, “I’m so glad you’re here” or “I wish your brother could have been here.”

January 15, 2013

Fast Forward

First, I offer apologies for the unintentionally long silence. (From a technical standpoint, if anybody visited the site in the last few weeks and got a malware alert, Google was correct and I have fixed the website, so it is currently safe.) The very short synopsis is that Colin is doing great and his last trip to St. Jude in August went well. However, so much time has passed that we are literally back in Memphis and Colin is in his MRI, so this seems like the ultimate deadline to update for eight months of excitement and change. In Colin’s world, that is a lot of time. (more…)

September 7, 2011

Summer Kick-Started with a Scan

Even on the cusp of summer, Memphis is unforgivingly hot, but the weather is nearly irrelevant when you’re back for check-ups at St. Jude, which we were at the end of June. (more…)

June 12, 2011

Full Circle

Colin returned home, nearly a year from the completion of radiation and two months short of his fourth birthday, with a good scan and no trach. (more…)

August 6, 2010

No, No, No, How are You Doing?

Perhaps I was naively unconcerned about Colin’s latest scan. (more…)

May 23, 2010

Survivor: Target House

There is no immunity challenge, and Jeff Probst doesn’t sit us around a campfire to discuss who is next to go, but living here is beginning to feel like a warped version of the Survivor reality show. (more…)

May 10, 2010

Happy Mother’s Day

Mother’s Day is billed as an opportunity for fathers and children to express their gratitude for the other 364 days a year that mothers devote to their families. (more…)

May 4, 2010

Winding Down*

Our family’s time at St. Jude is drawing to a close. (more…)

April 12, 2010

Operation Radiation

Colin’s final radiation treatments found us at Methodist Central, an adult hospital not far from St. Jude in midtown Memphis. (more…)

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