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Girl's family rejoices at triumph over cancer

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A generation ago, Jordan and Jodi Penner would be raising two young children, not three.

But today, 31/2 years after their youngest daughter, Sophia, was diagnosed with acute lymphoblastic leukemia -- that's cancer of the white blood cells -- the now-gap-toothed six-year-old loves playing baseball and jumping on the trampoline in the backyard with her sister, Alexis, 7, and brother, Ryland, 9.

The Penner family's odyssey started on Feb. 12, 2010. After looking after a sick little girl for a week, they decided to take her to a walk-in clinic. She had been incredibly lethargic, was bruising even though she spent virtually all day on the couch, had a bloated stomach and had developed some tiny red dots around her face.

The doctor did a little poking and prodding and came up with his diagnosis -- tonsillitis.

"We didn't believe it. We didn't think penicillin would do it (for her)," Jodi said.

So, the next day, they left their home in Landmark, located about 45 minutes southeast of Winnipeg, and headed to the Children's Hospital.

The medical professionals there realized what they had on their hands right away. The Penners bypassed the crowded waiting room and were brought into an isolated area on their own. (They thought they were receiving special attention because Sophia was a little girl.) Extra vials of blood were taken from her and then the doctor came in and sat down.

"He was very quick and very straightforward," Jordan said. "He said, 'I have some bad news -- your daughter has leukemia.' "

They were given a few minutes to digest the news and make a few phone calls to grandparents and close friends, and almost immediately Sophia began more than two years of treatments, including chemotherapy and bone marrow transplants and other "big words that you hear on the doctor shows."

The chemo, in particular, sapped her of her strength. Soon, she couldn't walk. She had to take penicillin on the weekend because she essentially had no immune system. She lost her hair.

Luckily for the Penners, there was no questioning whether they could get better treatment by leaving the province or the country.

Dr. Geoff Cuvelier, the pediatric oncologist who treated Sophia at CancerCare Manitoba, said acute lymphoblastic leukemia (ALL) has an 85 per cent cure rate today.

That's a far cry from the early 1980s when such a diagnosis meant a far different fate.

"Thirty years ago, most children with acute leukemia were not long-term survivors," he said. "Today, there is a cost to the cure. It's hard and it's challenging."

The survival rate is rising all the time, primarily due to medical institutions and caregivers around the world realizing they can't cure cancer in isolation. Only by banding together and sharing research from clinical trials and best practices can they hope to control -- and eventually eradicate -- the deadly disease. That's why you don't need to fly down to a Mayo Clinic, Cuvelier said.

"It gives us access to specialists around the world. If I have a complex case, I can touch base with an expert in the U.S. because we're all part of the same network. I can get second opinions without sending the child out for a second opinion; I can just pick up the phone," he said.

One of the most crucial elements in the fight against cancer is fundraising. This year, the CancerCare Manitoba Foundation will be able to provide $5.7 million in grants to CancerCare Manitoba. More than $3.5 million of that will be put toward research and $800,000 is earmarked for clinical trials for adults and children.

The funding helps CancerCare Manitoba attract and retain "world-class cancer specialists," according to Annitta Stenning, the foundation's executive director. It also provides an incentive for homegrown experts to wage war on the disease without leaving the province to do so.

"Without research, they can only provide yesterday's treatment," she said. "There are so many types of cancer, it's such a complex disease. The more we know about it, the more the treatment can be tailored to the patient," and be less toxic, she said.

More good news from Stenning: Not only have clinical trials dramatically increased children's survival rates, Manitoba has the highest rate of participation in pediatric clinical trials in the country.

"Doctors here are so passionate about ensuring that every child possible that qualifies will have access to a trial because it provides such a high success rate," she said.

Slowly but surely, Sophia regained muscle in her legs and learned to walk again. Her hair grew back.

And then on May 25, 2012, she got what her family had been waiting for -- the all-clear from her doctor.

She's not completely out of the woods, as she had to go in every four weeks for blood work -- a gap that has now been extended to eight weeks. As time goes on, she will go in less frequently. When she hits five years of good news, she'll truly be considered cancer-free.

Then, and only maybe then, will Jodi be willing to relax.

"There's always a fear that it will come back," Jodi said.

In the meantime, the Penners focus on celebrating birthdays and milestones.

Following Sophia's last treatment, Jodi's sister hosted 200 friends and family at her farm down the road.

And for her one-year anniversary, Sophia got to choose where to go for dinner. McDonalds? Nope. The Foody Goody on Regent. Naturally.

"She loves the buffet and Jell-O," Jodi said.

When asked her favourite flavour of the popular dessert, Sophia said, "purple," before burying her head in her sister's arms.

Her parents plan on watching her do this for many years to come.

geoff.kirbyson@freepress.mb.ca

Republished from the Winnipeg Free Press print edition July 14, 2013 A3

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Updated on Sunday, July 14, 2013 at 2:15 PM CDT: Corrects typo

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