April 3, 2003
Boy's legacy a fund to fight rare cancer
Cathy Patch
Toronto Star

James Birrell died at 11 minutes after 3 on the morning of Dec. 18, 2001. He was 8 years old. His fierce five-year fight for life had finally ended after many months of surgery, radiation, chemotherapy and unbearable pain.

James Birrell with Dr. Sylvain Baruchel. The fund set up in Birrell's name has granted more than $300,000 for research into neuroblastoma.

James' battle with neuroblastoma - a rare and deadly children's cancer that begins in the nerve tissue in the neck, chest, abdomen or pelvis - is anything but over.

A fund in the Peterborough boy's name was established in March, 2001, months before his death, to help raise money for research into the disease that strikes about 50 children in Canada each year.

James' father, Syd, began sharing the story of James and the Birrell family in the early spring of 2000 through his online "James Updates." The purpose of the site - with its intensely personal, often humorous and always inspiring updates - is to educate people about neuroblastoma and to help raise money for researchers at the Hospital for Sick Children and the University of Toronto.

The James Birrell Fund for Neuroblastoma Research through the Hospital for Sick Children has now granted more than $300,000 to open up promising avenues of research into the disease.

One of the challenges for medical researchers, says Malcolm Burroughs of the Hospital for Sick Children Foundation, is they usually have to have a lot of data to get funding to proceed with their research.

"Only when you have research ideas with a lot of data behind you do you get funding in the big league," he says. "It's a sort of Catch-22," he says. "We're trying to fill the hole between good ideas and the data so that people can get their ideas out there and take them to the next level."

Through the fund, a group has been established that is developing pre-clinical evidence of new ways to treat neuroblastoma, says Dr. Sylvain Baruchel, James' oncologist at the Hospital for Sick Children , where he is the director of its new agents and innovative therapy program.

"In our case, the funds were used to test if MIBG, a radiopharmaceutical commonly used to detect neuroblastoma by imaging in nuclear medicine, could also be used in higher doses to treat the disease," says Dr. Raymond Reilly, a research scientist involved with the study.

"We were able to show that the radiopharmaceutical was able to very effectively kill neuroblastoma cells growing in culture dishes and did not kill bone marrow cells at these same doses."

(The problem with many cancer treatments is that in the high and toxic dosage required to kill off cancer cells, they do irreparable damage to the bone marrow, and thus to the immune system.)

"Our plans are to use this very promising data to obtain additional funding from another source to develop the agent for treatment of neuroblastoma and obtain the necessary approval from Health Canada for a clinical trial," Reilly says.

Reilly was a researcher in nuclear medicine at the University Health Network (Toronto General Hospital) when he first met James.

It was a meeting he would never forget.

"As researchers, we toil away for hours on end in our laboratories, oblivious to the outside world," he says.

"One day, we got a call saying we would have visitors and then James and his family came into the lab. James wanted to see the cancer cells that were causing him so much misery and that would eventually kill him. He just said, 'Can I see the cells?' He was just a little boy and he had to stand on a footstool to look through the microscope.

"James made it all so real and I thought, 'Yes, we're all in this together.'"

Sick Kids will hold a symposium on neuroblastoma later this spring, Burroughs says.

"Having a community personalizes it - how this kid has affected the whole research community," he says. "I never knew James, but the sense of urgency he has managed to impart transforms the research. All of a sudden, it has advocates. Fellow travellers."

As James once said to his father, "With all this experimenting, they'll get it figured out, then all the kids in Canada with neuroblastoma will be able to survive."

Copyright (c) 2003 The Toronto Star