The Magic in the Mundane

Sunlight glimmers on imperfections in the plane window. I call them imperfections, though I suspect they are fractures in the plastic from the stress of flight, the long parallel tracks streaming down at an angle in silver lines like incandescent rain drops. There is no rain, of course, high above the field of white puffs below, in what is someone else’s pale blue sky, dotted with clouds on a bright day. Continue reading The Magic in the Mundane

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

Memphis Sunrise

The day before neurosurgery is a frustrating combination of interminable waiting punctuated by the frantic urgency to act, all conducted without benefit of even the vaguest structure. It stands in sharp contrast to the dense scheduling of one of our typical days at St. Jude, spent shuttling from one meticulously scheduled slot to another (minus E Clinic, the clinic for brain tumor patients, which is beholden to no clock born of human devising), and it is endemic of the inpatient environment we have encountered at any hospital. Already in the system, it is a simple matter to add another test or procedure through hidden incantations conducted in the obscurity of the famed work room. However, this comes with a price; upon admission, the patient becomes the sworn legal property of the hospital and therefore liege to its whims of timing. Continue reading Memphis Sunrise

Progress(ion) Report

I realized, after finishing the last very long post, that I didn’t actually go into my originally planned description of the Augusta trip. However, I began writing it in the days leading up to the second on-treatment scan. In the gap between working on it furiously on the plane en route to Memphis and being able to return to it, the scan itself took place. With a lot of anxiety around this milestone, Dr. Gajjar was quite careful in showing me two areas on the spine that might be of potential concern and that he had brought up with the radiologists. These were nothing worrisome, one being clearly a blood vessel (even to me), but he wanted to make sure I saw them before I went on my merry way. With some relief, we started disseminating the news of the all-clear and Colin and I returned to the Tri Delta House to relax before dinner with friends. However, the phone rang in our room and I was met with the familiar voice of Katie, a nurse who had taken care of Colin often when he had inpatient and now works in the brain tumor clinic. We needed to return to the hospital, which meant only one thing.
Continue reading Progress(ion) Report

Colin’s Immunotherapy Treatment

Yet again, I have let too much time lapse between updates on Colin. This time, the reasons are driven externally more than internally. In the quest for an appropriate post-surgical treatment, we discovered a novel option in Augusta, GA, that provided Colin with the elusive combination of a good quality of life and the possibility of durable remission. Although there will soon be a trial open for children with relapsed high-grade brain tumors, Colin is the first child to get on this therapy and is being treated under compassionate use with the FDA. Continue reading Colin’s Immunotherapy Treatment

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

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: http://www.huffingtonpost.com/tamiko-toland/tale-of-two-futures-mom-r_b_3907816.html

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.”