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'Everyone was shocked and amazed.' Ryder Evans-Brockett was diagnosed with a rare form of brain cancer and given little chance for survival. A year later, the five-year-old is cancer-free

Posted on 07/03/2009 12:00am

Ryder Evans-Brockett was diagnosed with a rare form of brain cancer and given little chance for survival. A year later, the five-year-old is cancer-free

By Amy O'Brian, Vancouver Sun

It was a bike wipeout serious enough to cause a scraped knee and consequent tears. But when five-year-old Ryder Evans-Brockett fell off his bike Wednesday afternoon, his parents didn't express any panic or distress.

In the grand scheme of things, a scraped knee -- a minor consequence of bike-riding on a mild March afternoon -- was nothing compared to what he had been through in the past 10 months.

Since last May, Ryder has had a spinal tap, brain biopsy, five rounds of chemotherapy, something called megatherapy, a stem-cell transplant, and plenty of other medical procedures.

"It would be really easy to be overprotective," Nicole Evans-Brockett said as she watched her husband carry her son to the comfort of the family car.

"But a fat lip or scraped knee is nothing compared to what he's been through."

'THE WORST DAY EVER'

Ryder -- a passionate lover of anything on wheels -- was a fast-developing kid.

The wide-eyed boy was crawling at three months and walking at seven months. He was riding a two-wheel bike at three years old and skateboards and scooters at four.

But when Ryder was four and a half, he started slurring his words. Then, at daycare one day, the little boy collapsed in a seizure and was rushed off to hospital.

For 20 days, Ryder lay virtually comatose in the intensive care unit at Children's Hospital as doctors tried to figure out what was wrong with him. He was heavily sedated to keep the frequent seizures at bay, while nurses and doctors came and went, drawing blood, tapping his knees, and looking into his eyes to try to figure out what was wrong with him.

At first, doctors thought it was meningitis or some other kind of fierce infection. But Ryder was not reacting to the treatment and continued to have seizures. So the doctors withdrew bone marrow and tested it. They withdrew spinal fluid and tested it. And eventually, they did a brain biopsy, which delivered the news nobody wanted to hear.

Ryder had a rare form of brain cancer.

"That was the worst day ever," Nicole said.

Because the cancer didn't present as a solid tumour -- instead showing up as what is described as a "sugar coating" over the brain -- it was difficult to diagnose.

And difficult to treat.

Surgical removal of the tumour was out of the question, since there was no bulky mass to remove. Radiation was out of the question, since Ryder was so young and the cancer was in his brain. And although chemotherapy was a feasible option, the chances of it working were slim.

"We were told it was a long shot," Nicole said.

Dr. David Dix was the pediatric oncologist who treated Ryder. He never gave the family a hard number on which to fixate regarding the chances of Ryder's survival, but he was not optimistic.

"I presented palliative care as an option," Dix said Thursday in an interview. "I did paint something of a pessimistic picture."

A PLEDGE TO BE POSITIVE

Crumpling into a ball on the floor would be a natural reaction for most parents who are given the news their child has inoperable brain cancer. Despair, defeat and anger would be likely to follow.

But once Nicole and Jimi got over the shock of their son's diagnosis, they made a pledge to be nothing but positive throughout his recovery.

They entrusted their Burnaby bike shop -- which they had purchased just eight months before Ryder was diagnosed -- to the hands of friends and strangers who had volunteered to look after the business. And they directed all their energy toward their son's recovery, not his illness.

"We always said he had cancer for one day," Jimi said during an interview in the messy break room of Sharpey's Cycles. "It was the day he was diagnosed. From then on, it was recovery. We never said, 'My child has cancer.'"

Jimi and Nicole took shifts sitting by Ryder's side. They played music, read books aloud, tried to stimulate him, and got excited every time he yawned -- one of the few signs of life he showed for the first couple of months.

One of them would spend the night, and the other would come in the morning.

"It was nine months before we slept in the same bed," Jimi said.

The couple fell in love 10 years ago during a whirlwind romance in Whistler that found Jimi, who had recently left his home in Manchester, England, proposing to Nicole just two weeks after they met. They shared a passion for the outdoors and the Whistler lifestyle, but only discovered recently, with Ryder's illness, that they share a fierce optimism and determination to protect their son.

While Ryder was in the ICU, the couple agreed that anyone who failed to share their positivity would not be allowed into the room.

"We had a negative nurse to begin with and we asked her to be swapped out," Jimi said.

Friends or family who viewed the situation with no hope were not invited to be part of Ryder's recovery either.

The couple took further control of their son's recovery after they noticed nearly every department in the hospital seemed to want a part in treating this extremely rare case of cancer.

"That presentation of cancer had never been seen. Everyone wanted to be involved," Jimi said.

Nurses were tapping Ryder for blood several times a day -- for tests that had already been done. The little boy was being poked and prodded and examined so much that Jimi and Nicole decided to lay down some ground rules for hospital staff.

"We put a sign-in sheet up on the wall that allowed only one person per department into the room each day," Jimi said.

The strict rules forced the doctors and nurses to communicate with each other, rather than coming into the room and asking the same questions over and over again.

"You've got to police it. It's your project," Jimi said.

CURE RATES UP

Brain cancer treatment for children has come a long way in the past 10 or 15 years. Cure rates are up, long-term side effects are down, and doctors are able to be far more precise in their treatments.

In the past, chemotherapy was considered a long-shot treatment for brain cancer because it was nearly impossible for the drugs to penetrate what's called the blood-brain barrier. But a relatively new chemotherapy drug has greatly improved the prognosis for brain-cancer patients by allowing the drug to reach the brain more directly.

Dr. Brian Toyota, head of neuro-oncology at the BC Cancer Agency, said the newer type of chemotherapy has significantly increased the odds of beating brain cancer. Toyota said the chances of an adult living for two years after treatment has gone from 10 per cent before the new chemotherapy drugs, to between 25 and 50 per cent now.

The odds still aren't great, but they're better than before.

In children, the fight against brain cancer is made more difficult because there is a widespread reluctance in the medical community to use radiation to treat a tumour in the brain. Long-term side-effects can include severe brain damage, vision loss, hearing loss, and other problems.

Dr. Juliette Hukin is a pediatric neuro-oncologist at B.C. Children's Hospital and one of Ryder's care-givers. She says brain cancer research has flourished in the past decade or so. And while we are still a long way from a cure, more kids are beating brain cancer and enjoying a good quality of life after treatment.

FEW SIGNS OF LIFE

After Ryder's second round of chemotherapy, an MRI showed most of the cancer was already gone.

"Everyone was shocked and amazed," Jimi said.

But Ryder was still virtually comatose. Aside from the occasional yawn, there were few signs of life.

"It was like he had a stroke. It was a mass seizure situation. All the circuits were broken up," his mother said.

More than 3,000 kilometres away, in Toronto, a friend of a friend of the family heard about Ryder's situation and flew out to help. A practitioner of traditional Chinese medicine, the woman cancelled her appointments for three days and flew to Vancouver to work with Ryder.

The Evans-Brocketts were not big believers in alternative therapies, but were willing to try anything at this point.

"She was working over his head and at one point, I saw his head pulsing and saw the hairs swaying on his head," Nicole said. "It was crazy."

Before she left, the woman told Ryder's parents to create a 14-day chart on the wall to mark their son's progress. At the end of the 14 days, she said Ryder would be ready to go home.

The day after she left, Ryder lifted his head off the pillow. The day after that, he spoke his first word. And on the fourteenth day, he was allowed to go home for the first time in months.

Nicole and Jimi still don't know exactly what was involved in the energy healing, or whether it was the key factor in Ryder's quick recovery, but they are grateful for it nonetheless.

"Whatever it was, the combination of everything obviously had some impact," Nicole said.

TO THE 'BRINK OF OBLIVION'

A few months later, after four rounds of regular but intense chemotherapy -- which Dr. Dix said left Ryder "incredibly sick" -- the boy had his stem cells harvested and stored in anticipation of the megatherapy.

Mega-doses of chemo were fed into Ryder's already weakened body with the intention of killing off any remaining cancer cells, but it had the unfortunate side effect of killing off most of Ryder's healthy bone-marrow cells.

"It took him to the brink of oblivion," Jimi said. "If he didn't get his stem cells, he'd die."

Ryder was hooked up to what looked like a jungle gym of medical equipment as the stem cells were reintroduced to his bloodstream and he began the recovery process.

That was in December. By Christmas, Ryder was back at home. He has relearned how to walk, how to talk, and today, he is bombing around on his two-wheel bike with more skill and confidence than most kids his age.

His tests have been cancer-free. And although he still suffers frequent drop seizures -- which are like split-second black-outs -- Ryder will be heading back to daycare on Monday.

Dix stops short of calling Ryder's recovery a miracle, but is admittedly amazed by how the little boy has bounced back from the edge of death.

"I can't believe it's the same kid," Dix said. "It's what we all hoped for."

Never have bike wipeouts and scraped knees looked so good to Jimi and Nicole Evans-Brockett

aobrian@vancouversun.com

BC CHILDREN'S HOSPITAL FUNDRAISER

Sharpey's Cycles, the bike shop owned by Ryder's parents, is holding a bike season kickoff party today that will raise money for BC Children's Hospital. The BBQ and bike trials displays get started at 11:30 a.m.

Sharpey's is located at 6661 Hastings St. in Burnaby.