The Road Ahead: Surviving cancer

Trent Ernst, Editor


If I didn’t keep turning around, I would be within spitting distance of the California border by now.

Over the course of the last few months, I’ve put in over 1700 km on the Cannodale Synapse that I have been provided for the ride. I would have passed through Vancouver a month ago and gone right through Washington State and into Oregon.

By the time I leave on the actual Tour de North, a ride to raise money for kids with cancer, I will have biked the equivalent of riding from Tumbler Ridge to Sacramento California.

And I am not even one of the top trainers riders for this year’s ride.

Les Nylen, who I met last month at the Billy Barker Days Parade in Quesnel, has put in over 3000 km. He’s one of only two people to break the 3000 km mark so far.

To put that in perspective, if he had started in Tumbler Ridge and kept going, he’d be biking into Los Angeles right about now.

Les’ story is a powerful, painful reminder, that while survival rates for some types of childhood cancer have climbed to over 80 percent, there are some that are still basically a death sentence.

In 2000, his daughter Kristen was diagnosed with brain cancer. “That’s when cancer first came into my life,” says Les.

He says she was diagnosed with stage four Glioblastoma multiforme (GBM), the most aggressive malignant primary brain tumour.

It was as if his daughter had been given a death sentence. Half the people who are diagnosed with GMB die within twelve months, while three year survival rates are only ten percent. Kids do better than adults, with about 25 percent survival rates.

Still, the doctors told Les and his wife that Kristen probably wouldn’t survive the year. “We were told treatment would make no difference in her outcome, but we decided to try anyway.”

Surgery and chemo and radiation left her frail and blind, but she was alive. “At her six month check-up, her tumour had not grown anymore,” says Les. “Her next check-up showed the tumor still wasn’t growing, and we began to have hope.”

While she was still dealing with treatments, life began to normalize, says Les. Kristen returned to school, and every six month she made the trip down to Vancouver to Children’s Hospital. “The tumor remained unchanged, but the doctors never used the word ‘remission’,” says Les.

Kristen graduated high school, and went on to post-secondary school. Having survived for more than five years, the Nylens thought they had dodged the bullet. But in 2012 she went in for her six month check-up and it was discovered the tumor was growing again. The doctors operated a second time, but the tumor continued to grow. In 2013, she underwent a third surgery. “She vowed that would be her last,” says Les.

In the fall of 2013, Kristen returned to the hospital, and passed away in February of 2014. “We hold close the fact that, given a year when originally diagnosed, she lived her life, on her terms, for another 13 years,” says Les. “We are grateful for the extra time with her, but there is never any doubt that it was not enough.”

Life, says Les, can sometimes be unfair, and all you can do is accept it. “We have made peace, and continue to look for ways to honour her memory.”

This year, says Les, he is doing the Tour de North to honour Kristen’s memory, to raise money for cancer research, and to support Camp Goodtimes, a camp, says Les, that Kristen enjoyed going to many times.

So if he rides with passion, if he out-paces nearly all the other riders in training, well, now you know why.

In 1985 Camp Goodtimes was founded near Loon Lake in Maple Ridge. It was one of a rash of similar camps popping up across North America in the late 1970s and early 1980s.

At the time, they were a new phenomenon, for the simple fact that previous to that, mortality rates for kids with cancer was nearly 100 percent.

At the beginning of the 1960s, survival rates for kids with leukemia were basically zero percent. Childhood cancer was a death sentence.

By the end of the 1960s, survival rates had climbed to just over 30 percent. These days, over 90 percent of kids with acute lymphoblastic leukemia (ALL) survive for more than five years, and survival rates for all kids with cancer has risen to more than 80 percent.

Parents whose kids had survived cancer began looking for ways to give their children the same experience as regular kids, and began founding summer camps specifically for kids with cancer, and so camps were founded across North America, including Camp Goodtimes.

Camp Goodtimes itself started in 1985. In its first year, 25 kids attended. This year, nearly 600 kids attended. That speaks to both the growing survival rates for kids with cancer, as well as the impact that cancer has on families.

This is the good news story around childhood cancer research. Survival rates are up over 80 percent.

But we’re not there yet, as Les’ story reminds us. There are still some forms of cancer, like Kristen’s, that few kids recover from and one child dying of cancer is one too many.

Editor Trent Ernst is the media rider for this year’s Cops for Cancer Tour de North. You can support him in his mission at .