Latest Blog Posts

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

Homeward Bound

Tomorrow morning, Colin and I return to Ithaca. A follow-up MRI today showed no residual tumor or suspicious areas: our first honest-to-goodness gross total resection.

His recovery has been nothing short of astounding. After walking out of the ICU 24 hours after entering it, they were ready to discharge him except he needed to start a medicine to prevent clots while in the hospital.

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Continue reading Homeward Bound

Post-Op Update

The wait on surgeries is a notorious combination of boredom and anxiety, though Dr. Boop significantly diminished the latter with his early morning announcement that the procedure would be much simpler than planned. Fortified with snacks and ample access to the internet, we were prepared for the long haul, but only an hour after we got the call that they had opened we got another call that Dr. Boop was scrubbing out and ready to talk to us.
Continue reading Post-Op Update

Surgery Today

Last night’s intention to post an update on Colin evaporated when I snuggled with him in his hospital bed as he watched a movie. I was out like a light and he wouldn’t go to sleep. At some point, I managed to sweep food crumbs off the sheets and he did eventually fall asleep; with four straight nights where he can’t eat anything the next morning because of one procedure or another, who am I to begrudge him an evening of partying? Continue reading Surgery Today

More Good Bad Luck

These past few years, we have done a poor job in updating on Colin and his progress. Though I can’t completely escape guilt on this point, I am happy to report that the reason is that we have all been busy with normal life and that he has been improving steadily. We moved to Ithaca, the boys have been going to the same elementary school together, and we all enjoy living in a neighborhood that is full of kids and friends.

Continue reading More Good Bad Luck

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.”

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. Continue reading Fast Forward

Counting the Years

After the absentee winter thawed into spring, Colin returned to Memphis for his four-month check-up. This visit marked two years from the end of radiation and a juncture I hadn’t dared contemplate when we were still at St. Jude. We are also nearing his fifth birthday, simultaneously the third anniversary of his diagnosis. These milestones have snuck up on us, with the pleasantly mundane realities of daily life overshadowing the gravitas that cancer tends to impose. Continue reading Counting the Years

Taking a Plunge

Wow, we just got back from an amazing week at Camp Sunshine in Casco, Maine. It’s not just about the fun activities and plethora of friendly volunteers but the incredible sense of community and support. This is a place where the kids, patients and siblings alike, are embraced for who they are and encouraged in everything they do. By the same token, parents are able to come together and share their stories, fears, insights, and anything else that comes up. Dealing with life threatening illness has a tendency of beating up every member of the family, often in tiny, invisible increments. Continue reading Taking a Plunge