'James, you are such a brave boy'

May 5th 2001

Cancer patient aged 7 1/2: Tom Hanks among celebrities reaching out to Ontario child

Carlo Allegri, National Post

James Birrell, seen with his father, Syd, was three years old when he was diagnosed with neuroblastoma, a rare form of cancer that attacks the central nervous system. The city of Peterborough, where the Birrells live, has raised more than $50,000 for research into the disease.

Heather Sokoloff
National Post

James Birrell spent last week in hospital getting chemotherapy and having morphine pumped through his veins.

This was the sixth time since James was diagnosed with neuroblastoma, a rare form of cancer that attacks the central nervous system, he has been near death.

James, who is obsessed with space travel, has just reached the age of 7 1/2. Saying he has beaten the odds is an understatement.

It is his calmness and faith that soothe the terrified adults.

His story has attracted all manner of celebrities, including actor Tom Hanks, Canadian astronaut Chris Hadfield, hockey players Eric Lindros and Curtis Joseph, children's performers Ernie Coombs (Mr. Dressup) and Fred Penner, and the Kratt brothers from the TV show Zoboomafoo.

There are so many people interested in James's story that Syd Birrell, the boy's father, sends out weekly e-mail updates to tens of thousands of people around the world.

His Peterborough, Ont., community raised more than $50,000 for neuroblastoma research in a matter of a few weeks.

"The most extraordinary thing is that someone going through such invasive treatment, [who] can barely walk and is in excruciating pain, can cheerfully bounce back and is not cowering in fear of the next attack," said Mr. Birrell.

James was so sick last week, Mr. Birrell crawled into bed with him early in the morning and wondered if he should call his wife, Pam, and Rebecca, 8, and Benjamin, 5, to say goodbye.

But like all the times before --even once when he was so far gone, Mr. Birrell signed a do-not-resuscitate order -- James managed to survive. He responded to experimental treatments when the cancer moved dangerously close to his brain, bones and liver.

"That's the confusing thing about neuroblastoma. Last week James was dying, and we started a round of chemo, and now he's back on his feet," said Mr. Birrell.

"You never know when it will explode. And sooner or later what they've [doctors] cooked up doesn't work anymore."

In Canada, about 50 children are diagnosed with the disease each year. None are expected to survive into adulthood.

James's story is so compelling that when Tom Hanks heard about the boy through a producer friend, he decided to get in touch.

He telephoned James at home in November -- four times over two days until he reached him -- to say hello. The two talked about Mr. Hanks' role as an astronaut in the movie Apollo 13. A week later, he sent James a toy astronaut along with personal letters to the whole family.

Mr. Hanks also signed a hundred copies of a CD put out by the Peterborough Singers to raise money for research.

"I mailed them to him on location at a movie set in Los Angeles, and he had them sent back the very next day, all signed," said Mr. Birrell.

When James came home from hospital this week after getting a blood transfusion, he wondered how high his white blood cell count had to be before he could fly into orbit on the space shuttle Endeavour.

It will take a few days to get over the side effects of this recent treatment. He cannot go back to school until his white blood cell count is high enough to fend off everyday bacteria.

"Everything was really low today so I can't go to school tomorrow. But you never know. It could be not as high to go on the shuttle," James said.

Ask him how he feels after a blood transfusion and he will tell you, "Rather nice." He takes pleasure in small things such as having pizza for dinner.

"His spirit is terrific. He is excited to be alive," said Mr. Birrell. "Everyone keeps saying, 'James, you are such a brave boy, you're so cheerful.' And I asked him a couple of nights ago how he can be so brave, how he can fight his cancer so well, and how he can still be so happy," said Mr. Birrell.

"He told me if I wanted to know the answer to that question I would have to ask God. There is something going on in James's faith world that we can't understand. But it's extraordinary."

James understands he has cancer. He can name the side effects of each of his treatments and understands what's happening to him.

He can also list all the people who deal with his illness: pediatric oncologist, radiologists, hematologists, physical therapists and assorted others -- 30 in all.

James was diagnosed with the disease when he was three years old. At the time, his mother, Pam, was undergoing treatment for aggressive breast cancer, which is in remission. When James felt ill, his parents thought he was upset about his mother. But the doctor found a six-centimetre tumour in his stomach and his body was riddled with stage IV cancer.

He underwent a bone marrow transplant but the cancer quickly returned.

James has had more success with experimental treatments involving drugs that have shown promise in mice. It has prompted James to call the treatment his "mouse medicine." The drugs block the formation of new blood vessels, which feed the cancer cells.

Mr. Birrell hopes a little more research, a little more money, might bring forth another treatment. With the $50,000 raised in Peterborough, he is starting two research funds at Toronto's Hospital for Sick Children Foundation.

Next week, the foundation is accepting applications for innovative, aggressive research into neuroblastoma. By the end of the month, two researchers will be chosen to begin work immediately.

"These are seed grants. The idea is to generate new knowledge and some research so you can apply for much larger funds," said Dr. Sylvain Baruchel, a pediatric oncologist at the Hospital for Sick Children.

"If we had the same levels of funding that exist for leukemia, or for breast cancer, or prostate cancer, we could eventually reach the same level of success that we have with those diseases. Money is a key issue. We need money to do more and more research so we can cure more children. Without money and research, there is no future," he said.

To raise awareness about the disease, Mr. Birrell asked his sister, a teacher in British Columbia, to create a Web site. Her computer class constructed the site (www.jamesbirrell.ca) in four days.

"James could be dead in three days or three weeks, so life moves much faster. We said, right, we're going to start this fund, and away we go. That means we need a Web site -- so we do it," he said.

"The thing is, he is responding to some treatments, and there is research there, so we are saying, 'Would someone please do something about it.' Maybe if you use a certain kind of shampoo mixed with the extract of a coconut, that would do it," said Mr. Birrell.

Adds Dr. Baruchel, "We know the chance of a cure is remote. At some point, we may lose the battle. But he has proven he can fight, so we are fighting with him."