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Rare Ewing’s Sarcoma strikes adolescents’ bones

Sarah Cook was a lively eight-year-old playing with her sisters when she first noticed her leg felt strange.
Sarah Cook;
Cancer survivor Sarah Cook speaks glowingly of doctors and nurses at the Montreal Children’s Hospital for their care and support

MONTREAL — Sarah Cook was a lively eight-year-old playing with her sisters when she first noticed her leg felt strange.

“It was like that tingly feeling when your foot falls asleep but it was the whole bottom half of my leg,” recalled Cook, now an 18-year-old college student.

“It was very sensitive. When I would go in the water, when someone would kick me, I would feel it. The whole shock would go through my leg.”

Swelling followed. Friends thought she might have actually broken her leg.

“It was much worse than that,” she says.

She headed for a hospital. A battery of medical tests reported that Cook suffered from Ewing’s Sarcoma, a rare form of bone cancer that strikes adolescents.

“The incidence is about three in a million,” says Dr. David Mitchell, a pediatric oncologist at the Montreal Children’s Hospital, where Cook was treated for about a year.

Chemotherapy followed, and once doctors saw that was working, they removed most of her fibula. After that came radiation treatment.

“I was eight so I just kind of took one day at a time,” she said in a phone interview from Canton, N.Y., where she goes to school.

“As a child, I didn’t have the fear that I wasn’t going to make it through whereas when you’re older you always have that fear.”

However, she acknowledged “the chemo made me nauseous and it wasn’t a good experience.”

Mitchell said Ewing’s is usually found in connective tissue like muscles, not in organs like the liver or kidney.

“It can affect either the bones or the soft tissues in between,” he said. “Usually it’s a lump or a pain.”

The lumps are usually bigger and firmer than those associated with such illnesses as breast cancer and he said there’s usually no symptoms such as fatigue.

Mitchell said chemotherapy is the usual treatment if the cancer hasn’t spread, followed by surgery and radiation. Survival rates can vary depending on how aggressive the cancer is.

If it’s localized and amenable to surgery, the survival rate is around 75 per cent, he said.

“If it’s spread, depending on how much and where, it can go from zero to 40 per cent, with an overall average of 20 per cent.”

Cook speaks glowingly of doctors and nurses at the Montreal Children’s Hospital for their care and support, saying, “They’ve become part of the family.”

“They all had smiles on their faces and they were upset when you didn’t feel well. Someone on my floor would come in every day and make me laugh and that made all the difference in the world to an eight-year-old.”

Her family was also key and her dad injected a bit of normalcy every Friday when he would bring in KFC, which they’d eat in the hospital.

Cook said a doctor friend of her father’s told him it was vital the little girl always felt like she was part of the family while she was sick.

“Some days she’s going to be a china doll and she’s going to be very fragile and other days you just need to treat her like there’s nothing wrong with her,” Cook says the doctor told her dad.

“Luckily, I had two older sisters to keep me grounded,” Cook says with a giggle. “And being my dad’s little girl, I definitely had been spoiled a little bit.”

She would be in hospital for days at a time while undergoing her chemotherapy. Cook says she’ll never forget the day she finished her treatment, for many reasons.

“I finished on Sept. 11, 2001.”

The cheerful teen says she was anxious to get back to school afterwards and kept busy, building on an effort to raise money for the hospital that began while she was staying there.

“I’ve always wanted to give back,” says Cook, who was active in both her school and community. “As I grew up, I understood more of what I went through and I was very grateful to be here.”

Giving back is a bit of an understatement when it comes to Cook. When she was sick, friends and family wondered what they could do to help. Sitting in her hospital bed, she wanted to buy new pillows for the other children on her floor.

While getting pasta dishes and baked goods was nice, Cook and her parents began suggesting to people who wanted to help that they give money to the hospital because “from the inside we could see they needed so much.”

Her young friends — “we were all eight at the time” — would donate their birthday present money or funds generated from setting up lemonade stands.

“It just grew from there.” The Sarah Fund For Pediatric Oncology was set up, combining efforts with the Cedars Cancer Institute and drawing support from other organizations.

“It’s the community support that makes all the difference,” she said of the fund, which has raised $4.5 million.

The money has helped with renovations to ease crowding and such simple things as supplies and games to keep young patients entertained during their stays.

Cook had to undergo more treatment in the fall of 2009 when more Ewing’s was discovered during a routine physical.

She completed another round of treatment in April and is back at school, raring to continue her liberal arts studies.

While she did initially worry about her life being put on hold while she got better, she described the reoccurrence as “another blip in the road.”

“The best advice I could give anyone is just live each day at a time, don’t think too far ahead,” she said.

“Just go day by day and don’t worry about what’s going to happen.”