Candlelighters brighten families' dark times

Danette Dooley danette@nl.rogers.com
Published on December 22, 2008
John Bullen died Dec. 7. - Photo above by Danette Dooley/Special to The Telegram

On a Christmas tree in the corner of John Bullen's living room hangs a star-shaped ornament. In it is a photo of Bullen's son, also named John, and one of its points touches a wine-coloured bulb with the Colorado Avalanche logo in the middle.

"We're a Montreal (Canadiens) family and John was for Montreal, too, until they traded Paddy Roy," Bullen smiles, his thoughts filled with memories of his only son he buried a week ago.

On a Christmas tree in the corner of John Bullen's living room hangs a star-shaped ornament. In it is a photo of Bullen's son, also named John, and one of its points touches a wine-coloured bulb with the Colorado Avalanche logo in the middle.

"We're a Montreal (Canadiens) family and John was for Montreal, too, until they traded Paddy Roy," Bullen smiles, his thoughts filled with memories of his only son he buried a week ago.

John passed away at the Health Sciences Centre Dec. 7.

He was 15 years old.

John was 10 when he was diagnosed with a rare combination of non-hodgkin's lymphoma and leukemia in March 2004. Early symptoms included severe headaches and nausea, his father says, recalling their many trips to the Janeway in late 2003.

"They checked him out for everything: encephalitis, meningitis, and the last thing they checked for was cancer. Sure enough, that's what it was. And from his first diagnosis to his treatments, anything that the doctors told us, John and his sister Samantha knew about it too. We never held anything back," Bullen says, sitting near the tree in his St. John's home.

John was sick for over three years, undergoing chemotherapy treatments and other medical procedures.

However, his father says his son had about 14 good months of being a typical teenager.

"This past summer was the first real summer for him in the last five. He was out riding his bike and swimming, chasing girls and causing trouble on the playground, all the things a normal teenager does. But then, he got sick again in September."

This time John's treatment included a new drug regime for relapsed cancer patients.

"But while he was doing that the cancer spread from his central nervous system to his bone marrow. So he was in the process of starting a new protocol for that to get ready for a bone marrow transplant, but everything went downhill from that point."

John spent the last few weeks of his life in hospital and the last week in an induced coma.

"They tried to get the machines to do the work of the organs so that his organs could bounce back," Bullen says.

While he had the best of medical care from doctors at the Janeway and Health Sciences Centre, John lost his battle with cancer.

Shortly after John was diagnosed, the family became involved with the Candlelighters Association of Newfoundland and Labrador.

For the past three years, Bullen has been serving on the association's executive.

Candlelighters is a charitable organization that provides resources and support to families of children diagnosed with cancer.

Totally volunteer run, the association's services include stocking a food and beverage cupboard for oncology patients and their parents at the Janeway, organizing and running a week-long residential camp for children aged diagnosed with cancer, their siblings and bereaved siblings, and being there to help parents cope with childhood cancer.

Children and youth aged 7-17 attend Camp Delight. Last summer, John was among the 48 kids registered.

"He was there causing all kinds of trouble," Bullen says wth a smile.

"Samantha goes too. She graduated this summer so now she'll sit out a year but she's hoping to go back as a counsellor."

There are no lineups of people waiting to join the Candlelighters.

"You only get in because you have a child that's sick with cancer," Bullen says.

"So if you're sitting down talking about protocols or counts with another parent, you don't have to say anything because they've gone through it too with their child and they understand. And some of our Candlelighters parents spent as much time at the hospital those last two weeks as we did."

Rod Legge became involved with Candle-lighters shortly after son Justin was diagnosed with cancer.

Justin was seven years old at the time. Today, he's a healthy 13-year-old.

"A lot of people in Candlelighters helped us get through it so I got involved as a way of giving back," Legge says. He has served in numerous volunteer roles with the association and now serves as its president.

"Because we are strictly a volunteer group we rely on businesses and individuals to offer our services," Legge says, noting the camp alone costs the association close to $40,000 each year.

About 350 families throughout the province are members of Candlelighters.

When a child is lost, Legge says, it's a tough time for all families.

"It takes a toll on every one of us."

While he and his family are still grieving the loss of their son, Bullen says he agreed to an interview to let other families coping with childhood cancer know about Candle-lighters.

It's an association, he says, he'll continue to be involved with for many years to come.

"There are still a lot of kids fighting the battle. It's easier for them and their parents to talk to someone like myself, somebody who has been there. We want them to know that my family and all the other families in Candlelighters are there for them."

Anyone who'd like to donate to the Candlelighters Association of Newfoundland and Labrador can call 745-4448, toll free at 1-866-745-4448 or e-mail candlelighters@ nl.rogers.com.

danette@nl.rogers.com