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.
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."
This blog post is part of a series produced by The Huffington Post and St Jude Children's Research Hospital in recognition of National Childhood Cancer Awareness Month. To see all the other posts in the series, click here. For more information about St. Jude, click here.