Manitoba family wants girl's battle with cancer to help other kids
Alyx Delaloye, 7, captured the hearts of Manitobans at a Jets' game
It's a moment Jody and Reg Delaloye will never forget.
They were sitting in a play room on the CK5 Unit at the Children's Hospital in Winnipeg. Their little girl, only six and a half years old, was in a hospital room just down the hall.
Alyx had been diagnosed with cancer.
"It's devastating," said Jody, sitting in their family home in Neepawa. "Something you never in a million years think you will ever hear, because you never think it will happen to you."
"We couldn't believe that it actually happened to Alyx," said Reg. "She was never sick a day in her life. Runny nose once in a while."
Alyx is the little girl who captured the attention of Manitobans earlier this year, when her big smile and sign that read, "Chemo by day, Jets by night," flashed on the Jumbotron at a Winnipeg Jets game.
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Her fight with acute lymphoblastic leukemia (ALL) started last July.
It was around that time her parents started noticing symptoms. She had a sore leg, a swollen ankle and didn't seem like herself.
Jody started taking Alyx to their family doctor in Neepawa to figure out what was wrong.
After the third visit, Alyx went for blood work.
When the results came back, the doctor called her into the office and said they needed to get to the Children's Hospital in Winnipeg — and fast.
Doctors would be waiting.
You obviously have bad days and that's when negative thoughts come out. But [for] the most part, just how she is all the time definitely helps us be a lot more strong.- Jody Delaloye
"(The doctor) said she needs extensive testing and bone marrow biopsy," said Jody. "As soon as she said bone marrow, I thought the worst and of course had both children with me in the room and couldn't stop crying. And then drove home and don't remember driving home."
The family packed for a night. After her diagnosis, they were in Winnipeg for treatment for 31 days.
Now, months later, it's mostly Alyx and her mom that make the trip from Neepawa to Winnipeg for chemotherapy. They usually spend a night at Ronald McDonald House before heading to the hospital.
"Almost every nurse says 'Alyx, stop doing our work for us, you're going to get us fired,'" said Jody. "She goes and measures herself, she balances out the scale to weigh herself and then she goes into the room where they do her vitals and hooks up the proper arm. She does her own blood pressure, her own temperature, she does the pulse on her finger."
It's turned into a routine, the Delaloye family never expected.
"It's actually awful that you think some kid knows how to change her own dressing and do her own vitals," said Jody. "At the same rate, she knows how to do it, and she's very happy to do it. So at least she's happy in there and it makes it a little bit easier on us because she is so happy all the time."
But sometimes, even Alyx's smile can't always help her parents cope with what she's going through.
"I don't handle the spinal taps well," Jody said. "She gets put to sleep, but as soon as she gets put to sleep then I cry. Everyone says it will get easier and it's not as hard.
"Alyx even knows. She gives me a big hug and tells everyone in the room 'now my mommy is going to cry.' And everyone in the room already knows that I'm going to cry, so they have a box of Kleenex waiting for me and a nurse always comes to the room to pat my back and talk with me. They are all really supportive there."
30-to-40 children diagnosed each year
The Delaloyes aren't the only family that have seen visits to hospitals and cancer treatments become a reality.
The Canadian Cancer Society estimates between 30-to-40 children in Manitoba are diagnosed with cancer each year.
"Any kids being diagnosed with cancer is too many," said Erin Crawford, director of Public Issues with the Canadian Cancer Society's Manitoba Division
But hope is growing.
I'm sure she is going to be fine. But it's a long journey to get there and it's very, very hard to go through."- Jody Delaloye
According to Crawford, the survival rate for children diagnosed with cancer has improved from 46 per cent in the 1960s, to 83 per cent today.
Crawford said research plays a big role.
About 90 per cent of children diagnosed with childhood cancer in Canada are enrolled in clinical trials
"Clinical trials are key," said Crawford. "Because clinical trials are where you are seeing those cutting edge treatments, and you are getting children access to those cutting edge new treatments right away."
Alyx still has a long road ahead. But, her parents have the date of her last treatment memorized: Oct. 22, 2016.
"They say it's like 90-95 per cent positive outlook," said Jody.
But, that doesn't mean her days aren't filled with worry and often tears.
"As a parent how do you not think of that five to 10 per cent right," she said. "You obviously have bad days and that's when negative thoughts come out. But [for] the most part, just how she is all the time definitely helps us be a lot more strong. I'm sure she is going to be fine. But it's a long journey to get there and it's very, very hard to go through."
While the seven year old may be small compared to her dad, he admits her strength helps him get through.
"They told us three weeks in that she would lose her hair and it was almost over six months before she lost her hair," said Reg.
"We didn't know how she was going to handle it. We had wigs for her. She put them on for about two seconds. 'Itchy' threw them right off. She just walks around proud with the way she looks and that makes it really easy on us."
Paying it forward
Following Alyx's big appearance at the Winnipeg Jets game against the Dallas Stars, the family has received an outpouring of help and support.
"We really, really thank everyone for the support and the generosity," said Jody.
But they have a message.
Instead of giving to their family, Jody would like to see donations made in Alyx's name to help other families dealing with an illness like this.
"As a pay it forward from Alyx and our family, we would love for anyone who is still wanting to help Alyx and us, to consider donating to pediatric CancerCare in Winnipeg where she is treated and also all of our friends children are treated there as well," said Jody.
"If it can help with research or anything to help these other families would be great and also extend that to the Ronald McDonald house, our home away from home. Alyx and I spend a lot of time there."