AT/RT: How my son faced a rare cancer and beat the odds

Medically reviewed by Mark W. Kieran, MD, PhD, Anupama Narla, MD, and Susan N. Chi, MD

By Timothy Rourke

Most parents treasure the big moments in a child’s life: first steps, first word, first day of school. I, on the other hand, treasure every moment with my son, Declan – the simple act of eating breakfast together, watching him do his homework, or taking him to ice-skating lessons. This is because Declan is a cancer survivor.

It’s hard enough to learn your child has cancer. One minute your world seems fine, and the next, you’re falling into chaos and fear. But when my wife and I got the news, after Declan had a seizure on Father’s Day 2006, we had the added distinction of a cancer diagnosis so rare that only 30 or so families receive it every year.

Declan, then 15 months old, had an atypical teratoid rhabdoid tumor (AT/RT), a rare cancer that affects the brain and central nervous system. At the time of his diagnosis, researchers could count on one hand the number of long-term survivors. Like a lottery nobody wants to win, we suddenly found ourselves in a category of cancer so small, so remote, that it was easy to think there would be no place for us to turn.

The New Hampshire oncologist who diagnosed our son saw a different picture.

“I have no ego when it comes to kids,” he said. “If the best treatment for their cancer is in France, I send them to France. If it’s in Germany, I send them to Germany. It just so happens that, for your son, the best treatment is just 45 minutes away at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.”

With those words came hope for beating a disease that had inflicted so few, and yet taken so many.

Declan immediately began a year-and-a-half of treatment under the care of Dr. Mark Kieran, Dr. Susan Chi, and Dr. Anupama Narla at Dana-Farber/Boston Children’s. The regimen was brutal: 52-plus weeks of high-dose chemotherapy, six weeks of radiation, and half a dozen surgeries at Boston Children’s Hospital, where surgeons work in partnership with Dana-Farber oncologists. There were feeding tubes, ports in his chest and head, and more blood and platelet transfusions than I can count.

And yet, our family was emboldened by the courage of a group of specialists that dedicated time – and resources – to such a rare disease. And we found comfort in the knowledge that although there were so few cases of atypical teratoid rhabdoid tumor a year, this team had the expertise to give Declan the best possible care.

As I type these words, my son – now seven – sleeps peacefully in his bed.  He has been out of treatment since October 2007, and currently shows no evidence of disease, according to his doctors. As of today, he is one of the only long-term AT/RT cancer survivors in the world.

A world turned upside down is once again right side up. Of course, we dread every check-up and MRI scan that brings a threat of relapse. That’s one downside of being the rarest of the rare; survivorship cannot be taken for granted. We meet other AT/RT families who shared our hope for a cure that, for them, proved elusive.

Tomorrow the sun will rise. My son will open his eyes and greet the day. I’ll find him near his 6-month-old sister’s crib, where she will glance his way, hear his voice, and squeal with glee.

To most parents, the sight would be sweet. But I am not most parents. I am the parent of a cancer survivor. The moment will blind me with its beauty, and bring tears to a man who knows how lucky he is.

Timothy Rourke is a member of the Pediatric Patient and Family Advisory Council at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.