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Before her daughter Phoebe got sick, Jenny Doull used to be a runner.
“Just having a child in the hospital, your health comes last,” Doull said. “So I’m really happy to be back running. And it’s done wonders for my mental health as a bereaved parent. It kind of helps to calm my mind, and I often think about Phoebe on my runs.”
In 2010, Phoebe was diagnosed with infant leukemia at just nine weeks old. She was given a 15 per cent chance of surviving past age five. As a toddler, Phoebe faced two bone marrow transplants, immunotherapy, numerous clinical trials and spent years at a U.S. hospital, away from her home in Canada. But all of those daily struggles didn’t hold her back.
“Phoebe was the most joyful little girl,” said Doull. “She just loved life despite everything she went through.”
Phoebe died in an intensive care unit in 2015. She was five.
“It’s the worst thing we’ve ever had to go through,” said Doull.
“It was just beyond devastating and still is.”
Doull’s experience as a parent dealing with childhood cancer inspired her to start the Phoebe Rose Rocks Foundation, named in memory of her daughter. At the Tamarack Ottawa Race Weekend on Sunday, May 27, she plans to run the half marathon to raise money for her organization, which funds childhood cancer research and family support.
Because Phoebe’s condition was very rare, her options in Canada were soon exhausted, and her parents started looking for clinical trials and experimental treatments in the U.S. The family ended up in and out of St. Jude’s Children’s Research Hospital in Memphis for four years.
“We had to enter the world of childhood cancer, and it was a world we really knew nothing about.
“She relapsed multiple times, and with every relapse we were back in the same place — struggling to find options to treat her,” said Doull. “It really opened our eyes to the fact that there is not a lot out there for kids with rare diseases, with rare childhood cancers.”
According to the Cancer Knowledge Network, just three per cent of Canadian government cancer funding goes towards childhood cancer research.
“Phoebe’s story really reflects that three per cent because we struggled every step of the way to find her treatment options,” said Doull.
Big sister Mae, left, gives Phoebe a hug.
Despite the challenges of being in and out of the hospital, Doull said it was important to spend precious time together as a family. Big sister Mae, only 20 months older than Phoebe, travelled with the family to Memphis.
“Looking back, I know that Mae really helped Phoebe in ways that doctors and medicine couldn’t,” said Doull. The sisters played with each other, rode their bikes and “stuck together like glue,” she said.
“Not knowing what the outcome would be, we were able to just develop these memories, and Mae remembers her sister really well.”
Phoebe’s death led to the creation of the Phoebe Rose Rocks Foundation.
Her death led to the creation of the Phoebe Rose Rocks Foundation, which Doull said spends 99 cents of every dollar donated on research for childhood cancers and family support. The voice of Phoebe, she said, lives on through the organization.
“Phoebe was the most joyful little girl, and she loved life despite everything she went through,” said Doull. “But about cancer, she would always say that it wasn’t okay. And as a mom I would say, ‘You’ll be okay,’ because that’s what we say as moms. But she’d look at me and she’d say, ‘No, this isn’t okay.’ So it’s kind of become our motto: Make it okay. That’s our rally cry.”
The whole family, including Mae, will be participating in race weekend to raise money for the foundation. Donations can be made at runottawa.ca, or at PhoebeRoseRocks.com.
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“Just having a child in the hospital, your health comes last,” Doull said. “So I’m really happy to be back running. And it’s done wonders for my mental health as a bereaved parent. It kind of helps to calm my mind, and I often think about Phoebe on my runs.”
In 2010, Phoebe was diagnosed with infant leukemia at just nine weeks old. She was given a 15 per cent chance of surviving past age five. As a toddler, Phoebe faced two bone marrow transplants, immunotherapy, numerous clinical trials and spent years at a U.S. hospital, away from her home in Canada. But all of those daily struggles didn’t hold her back.
“Phoebe was the most joyful little girl,” said Doull. “She just loved life despite everything she went through.”
Phoebe died in an intensive care unit in 2015. She was five.
“It’s the worst thing we’ve ever had to go through,” said Doull.
“It was just beyond devastating and still is.”
Doull’s experience as a parent dealing with childhood cancer inspired her to start the Phoebe Rose Rocks Foundation, named in memory of her daughter. At the Tamarack Ottawa Race Weekend on Sunday, May 27, she plans to run the half marathon to raise money for her organization, which funds childhood cancer research and family support.
Because Phoebe’s condition was very rare, her options in Canada were soon exhausted, and her parents started looking for clinical trials and experimental treatments in the U.S. The family ended up in and out of St. Jude’s Children’s Research Hospital in Memphis for four years.
“We had to enter the world of childhood cancer, and it was a world we really knew nothing about.
“She relapsed multiple times, and with every relapse we were back in the same place — struggling to find options to treat her,” said Doull. “It really opened our eyes to the fact that there is not a lot out there for kids with rare diseases, with rare childhood cancers.”
According to the Cancer Knowledge Network, just three per cent of Canadian government cancer funding goes towards childhood cancer research.
“Phoebe’s story really reflects that three per cent because we struggled every step of the way to find her treatment options,” said Doull.
Big sister Mae, left, gives Phoebe a hug.
Despite the challenges of being in and out of the hospital, Doull said it was important to spend precious time together as a family. Big sister Mae, only 20 months older than Phoebe, travelled with the family to Memphis.
“Looking back, I know that Mae really helped Phoebe in ways that doctors and medicine couldn’t,” said Doull. The sisters played with each other, rode their bikes and “stuck together like glue,” she said.
“Not knowing what the outcome would be, we were able to just develop these memories, and Mae remembers her sister really well.”
Phoebe’s death led to the creation of the Phoebe Rose Rocks Foundation.
Her death led to the creation of the Phoebe Rose Rocks Foundation, which Doull said spends 99 cents of every dollar donated on research for childhood cancers and family support. The voice of Phoebe, she said, lives on through the organization.
“Phoebe was the most joyful little girl, and she loved life despite everything she went through,” said Doull. “But about cancer, she would always say that it wasn’t okay. And as a mom I would say, ‘You’ll be okay,’ because that’s what we say as moms. But she’d look at me and she’d say, ‘No, this isn’t okay.’ So it’s kind of become our motto: Make it okay. That’s our rally cry.”
The whole family, including Mae, will be participating in race weekend to raise money for the foundation. Donations can be made at runottawa.ca, or at PhoebeRoseRocks.com.
查看原文...
