Truro parents fight back at neuroblastoma

Ryan
Ryan Cooke
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‘Without the work you've done, we wouldn't have had a chance'

TRURO - Sarah Fowler has never imagined her seven-year-old daughter as an adult.

Diana Birrell, left, Gavin Leggate, Sarah Fowler and Maura Leggate, front, gathered last Saturday at a washer toss fundraising event for the James Fund. Birrell is the executive director of the James Fund, which raises money and awareness for neuroblastoma research. Maura was diagnosed at the age of five months, and Fowler's daughter, Breanna, is still battling the disease.

She can think of her younger son, Brayden, growing up, going on dates and graduating high school. But her mind just can't do that for Breanna.

"I didn't think we'd make it to her fifth birthday," Fowler said. "And then we were there, at her party, but I remember thinking there was no way we'd make it to six."

Breanna was diagnosed with Stage 4 neuroblastoma when she was just three years old. The prognosis was bleak - high-risk cases carry a 30 per cent survival rate.

At the same time, Diana Birrell was leading her crusade against neuroblastoma with her brother Syd in honour of his son, James. After losing the eight-year-old boy to the disease, the family swore to do all they could to find a cure for the disease. Through their fundraisers, the James Fund has provided more than $14 million to neuroblastoma research.

Breanna was the first for a new method of treatment, using antibodies to fight the spread of the disease. For five months, she was in constant pain, struggling day-to-day with knowing tomorrow would bring the same sensations all over again.

"That was so hard, as a parent, or even just as a human being," Fowler said. "To watch your daughter go through that, day after day."

The treatments Breanna underwent also included a cutting edge bone marrow procedure, which used her own stem cells to replenish and cleanse the diseased marrow in her body. The combination of treatment, heavily influenced by James Fund-sponsored research has kept Breanna alive to see her seventh birthday.

Last Saturday afternoon, Sarah Fowler and Diane Birrell crossed paths at a backyard washer toss tournament in support of the James Fund.

"Without you, my little girl would not be alive," Fowler said. "Without the work you've done, we wouldn't have had a chance."

Birrell teared up as she listened to Fowler tell her daughter's story, one of hundreds of stories she's become familiar with in her work.

"It's all about the families for me," she said. "Raising money for research is obviously fantastic, but what keeps me going is seeing the changes we can make in the lives of these families."

Saturday's tournament was the latest installment of an annual fundraiser put on by Gavin Leggate to support the fund that helped save the life of his daughter, too.

"She was five months old when we found out," he said. "We were lucky to catch it so early."

Maura had been sick for a while and didn't seem to be getting any better. After going for tests, doctors found a golf ball-sized tumor in her chest. A short time before the diagnosis, Maura had undergone tests that showed no sign of the disease.

"You can see the severity of this disease right there," Leggate said. "It goes from nothing to a golf ball in weeks."

Having spotted the cancer early, doctors were able to remove the tumor before it spread or wrapped around her spinal cord. Today, Maura is a happy, healthy nine-year-old with the world ahead of her.

Just a few streets over, the Fowlers are taking it day-by-day.

Breanna is currently in remission, but is not out of the woods yet. With the extent of the damage chemo and radiation have taken on her body, Sarah will never feel completely comfortable.

Breanna has had four relapse scares, one of which was an erroneous test showing the resurgence of tumours in her body. The survival rate of a neuroblastoma relapse case is near zero.

For Birrell, watching families like the Fowlers suffer through it has taken its toll.

"There's a major multiplying effect," she said. "One funeral feels like one funeral. But 20 funerals feels like 10,000."

Nationwide, neuroblastoma takes charge of 50 to 70 lives per year. Much about the cancer remains largely unknown, yet it's the most common solid tumor cancer in children outside the brain. It is the leading cause of cancer death in children ages one to four. In more than half the cases, the cancer is not spotted until it has metastasized elsewhere.

For Leggate, he will always be grateful for early detection.

"I think about it every time I see her playing in the driveway. What if we didn't catch it early? How would things be different?"

Fowler doesn't need to wonder.

"My daughter talks about dying like it's a normal thing for a seven-year-old to do. She told her brother he can have all her stuffed animals."

Leggate has raised more than $14,000 for the James Fund to date. To learn more about the fund and how to donate, visit www.jamesfund.com.

 

Organizations: James Fund

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  • Diana Birrell
    July 24, 2014 - 08:47

    Ryan, Thank you for your skillful and eloquent reporting of an interview which darted all over the map. Without talented and dedicated reporters such as yourself, our cause would have gone nowhere. We are grateful to the media for helping to keep our story alive and urgent. I am thinking that the 4 faces in your photo represent a massive amount of love, hope, promise, and determination. Thank you! It was a pleasure to meet you.