When seven-year-old James Birrell looked up at scientist Ray Reilly in his Toronto laboratory and asked him with a soft lisp to show him some cancer cells, Reilly's heart lurched. At the time, the little boy with the dark curls visiting his lab with his dad, Syd, was being treated for a rare form of pediatric cancer called neuroblastoma. The cancer cells he eagerly wanted to see were very similar to the cells that both Reilly and his dad knew were likely to kill him.
But James wasn't thinking what the adults were thinking. He was just excited to stand on a little stool that Reilly provided and peer through the microscope at the wondrous little star-shaped cells piled on top of each other at the bottom of a culture flask. It was the same wide-eyed curiosity that made his nurses and doctors grin as they patiently answered all his questions about the intricacies of IVs and chemo treatments.
The hope for a cure
Chatty, adventurous James, who loved to talk about trains and astronauts and Lord of the Rings, died in December 2001 just after his eighth birthday. But in the five years that he battled his disease, he touched the hearts and so captured the imagination of Canadian cancer researchers that, through a special fund in his name, research into neuroblastoma, which in the past had received little attention, has grown exponentially in Canada. Today many scientists are full of hope for a breakthrough in treatment, perhaps even someday a cure. James, himself, caught that hope when they started the fund. He told his dad, "With all this experimenting, they'll get it figured out and then all the kids with neuroblastoma will be able to survive."
James could melt the hearts of just about anyone, even the most stoic white-coated researchers. But it was James's parents, Syd and Pam, who made sure these scientists saw the human face of neuroblastoma. The couple decided to share their son's journey in a very personal way to engage as many people as possible in the ultimately doomed battle to save their son. "All along I wanted people to pay attention and not keep their professional distance," says Syd. "Taking a kid through cancer treatment is hell, and I wanted them to somehow identify with us."
A researcher meets young James
A mix-up in James's treatment was what brought him to Reilly's lab. A compound that James needed for a testing procedure at The Hospital for Sick Children (HSC) hadn't arrived from the lab, where it was to have been mixed. Syd, by then a veteran of his son's cancer treatments, got Reilly on the phone. The nuclear pharmacologist explained that part of the compound was stuck in transit but would arrive shortly. Then, after a few minutes of chatting to Syd about his son's treatment, Reilly did something out of character for a busy cancer researcher. He suggested that Syd bring James to see his laboratory facilities the next time they visited Toronto from their hometown of Peterborough, Ont.
"Despite the fact that we had been doing cancer research for 15 years, James was actually the first cancer patient who had ever stepped foot in our lab," Reilly says now. When he met James, he came face to face for the first time with the cruelty of neuroblastoma, a cancer that spreads tumours along the nervous system to every corner of the body, causing excruciating pain and death in 85 per cent of its victims. The meeting changed the direction of Reilly's research. Until then, he had focused only on breast cancer. Touched by the inquisitive dying boy, he added research into neuroblastoma to his list of research priorities.
A problem of scale
Reilly's decision is significant. Neuroblastoma affects only 800 children a year in North America compared to the 200,000 -- mostly women -- who are diagnosed with breast cancer. It's hard to convince pharmaceutical companies to fund drug trials, let alone attract researchers to work in the field. But by sharing James's story, Syd and Pam Birrell not only attracted researchers to their cause but also attracted precious research dollars.
The Birrells set up a dedicated research fund after one of their son's doctors remarked that the death rate for neuroblastoma hadn't changed in 40 years because very little money had been spent on finding a cure or even treatments to prolong life. By contrast, children with leukemia had gone from having an 85 per cent chance of death to an 85 per cent chance of survival thanks to money invested in the field. "It seemed outrageous to us that our son would not live because no one had got some money together," says Syd.
