2010-09-29

Miracle mom: Mayo surgeons cut her in half, cleared out her cancer - Winnipeg Free Press

Janis Ollson with her husband Daryl, daughter Braxtyn and son Leiland.

PHIL HOSSACK / WINNIPEG FREE PRESS Enlarge Image

Janis Ollson with her husband Daryl, daughter Braxtyn and son Leiland.

Manitoban Janis Ollson and family are in magazine ads for the esteemed Mayo Clinic for a very good reason: she's the first person surgeons cut in half, removed much of a cancerous midsection, then put back together with a happy ending.

On Friday, the Balmoral, Man., woman was at her daughter's school to talk to students about Sunday's Terry Fox Run, and how funds raised for cancer research are keeping people like her alive.

Janis Ollson shows off the prosthetic leg she uses at her home.

Enlarge Image

Janis Ollson shows off the prosthetic leg she uses at her home. (PHIL HOSSACK / WINNIPEG FREE PRESS)

Groundbreaking operations

Janis Ollson's first surgery to remove the cancer, her leg, part of her pelvis and lower spine took 20 hours, 12 specialists and 20 units of blood. She spent a week out of it and then had a second surgery to put her back together. That took eight hours and more than 240 staples. The surgeon put her back together, attaching the bone to her spine with pins and screws, close to her centre, almost like a pogo stick.

Since her groundbreaking surgery, three other patients have had it. Only one has survived, a young woman in Ohio. Ollson mentors her from afar and benefits from having someone to talk to who gets her daily reality.

"There was no one else like me until she came along... It makes me proud to be a survivor and doing so well I can help others."

No one's dissing Canada

Manitoba Health covered Ollson's expenses at the Mayo Clinic.

She's grateful for the Canadian health-care system and that it collaborated with the Mayo Clinic to save her life.

"We could've easily lost everything we owned if we had to pay for this ourselves."

The Ollsons agreed to be featured in an ad for the Mayo Clinic that appeared in Maclean's, Readers Digest and other mags only if it didn't "diss" Canada, Ollson said.

"It wasn't like they were trying to get us as Canadians to advertise to other Canadians that the Mayo is better than Canada. We wouldn't support anything like that."

Terry Fox run

Winnipeg's starts Sunday with registration at 9 a.m. at the Lyric Theatre in Assiniboine Park.

Source: Terry Fox Research Institute

 

Three years ago, the 31-year-old was pregnant with her second child and had been suffering years of horrible back pain when Canadian doctors diagnosed her with bone cancer, chondrosarcoma.

Sarcoma experts in Toronto said they'd literally have to cut her in half to get at the untreatable cancer, remove her leg, lower spine and half her pelvis.

The problem was they didn't know how to put her back together again.

They certainly didn't know how she would have a decent quality of life. They consulted with the Mayo Clinic and the Rochester, Minn., doctors decided to try something new.

Ollson became the first person to receive a "pogo stick" rebuild, with her one good leg fused to her body with the reshaped bone from the amputated leg.

Three years later, she is alive and kickin' -- snowmobiling and grocery shopping -- with her husband and two kids on their half acre in Balmoral.

"Where we live, we use ATVs and snowmobiles. I use my ATV to take my daughter to school... There really isn't a whole lot that stops me," she said.

"I don't like to be left out."

Today, she's cancer-free, although she lives with the knowledge it could return at any time.

She uses a prosthetic pelvis and leg, wheelchair, crutches or walker, depending on what she's doing and where she's going.

"I have no problem getting around. If I need to, I'll crawl (up stairs) or scooch like a kid," she said.

"I don't want people to think 'we can't invite the Ollsons because they can't get in here with a wheelchair.' "

"I want to live life to its fullest."

In 2007, her life nearly ended.

"I had pain in my lower back with the first pregnancy. I just thought it was the pregnancy, as did my doctors." She had to stop working when she was eight months pregnant because of the pain.

"After my daughter was born, I still struggled, but it seemed to get better...

"A few years later, I got pregnant with my son. The pain started to increase. I was waddling and hurting by three months."

At five months, the pain was so intense she couldn't work at her office job.

The non-smoker, who wouldn't take any medications or even dye her hair during her first pregnancy, was at the maximum dose of Tylenol 3 during that agonizing second pregnancy.

"Nothing was working."

At seven months, the pain was so bad she couldn't drive. Her suffering was so severe, she asked her doctor if her baby could be delivered prematurely.

"That wasn't a rational thought for me," she said. "By that point, I was quite desperate for some type of relief."

She was told there was nothing more they could do.

"I went back home feeling very alone and misunderstood. I didn't think people believed me. I knew it was a whole lot worse than anyone thought."

She tried a machine that uses electrical pulses to deal with the pain, as well as hot packs and cold packs. She tried sleeping sitting in her kitchen with her head on the table. "Sitting was better than lying."

In February 2007, the pain kept her awake all night. The next morning, she had to crawl across the kitchen floor to get daughter Braxtyn a drink.

Ollson realized she'd hit her breaking point: "I can't take another day, another minute. I'm done."

Her husband took her to hospital in Winnipeg and she refused to leave until she was admitted. A specialist and residents saw her and concluded she had pregnancy sciatica -- caused by pressure on the sciatic nerve. They prescribed morphine to dull the pain enough for her to sleep.

No one suspected she had a form of bone cancer that rarely affects young women -- until she awoke and talked to a neurologist, mentioning in passing she could no longer stand on her tippy toes on her left side.

"It was a huge red flag" for the specialist, she said.

Immediately, she had an MRI and although she was told the results would take a few days, a doctor was in her hospital room to talk about the results the same day. She and her husband were told there was "something" on her lower spine, but no one could say if it was cancer.

Then came an excruciating two-day wait.

Finally, her obstetrician delivered the news: It was probably sarcoma.

But no one could be sure of that without a needle biopsy, which couldn't be done while she was pregnant.

Two weeks later, after her healthy son, Leiland, was delivered by C-section Feb. 21, 2007, the needle biopsy was performed. But that was inconclusive, even with sarcoma specialists in Toronto and at the Mayo Clinic weighing in. It was only after she travelled to Toronto for a biopsy that it was confirmed: a chondrosarcoma, the size of a Pizza Pop, one of the largest the experts had ever seen.

Chemotherapy and radiation couldn't help. The cancer had spread through several bones, her pelvis, lower spine and into a lot of muscle tissue. Her only chance for survival was to remove it.

But removal, specialists said, might not be the best option. The Toronto specialist said he could remove the tumour but didn't know if she could be put back together. Without a lower spine, half her pelvis and a leg, there was nothing to attach her remaining healthy leg to.

"I was in complete shock. I felt like I was going to throw up," she said.

A young man with a similar sarcoma decided not to have it removed so he could live like a normal person until it killed him, the doctor told her.

"Once you have kids, that's not an option," Ollson said.

The Toronto doctor said he'd consult with Mayo Clinic experts.

"He said, 'We'll see if we can come up with a plan so you can see your children grow.' "

Back home in Manitoba, her relatives were devastated. Ollson focused on her new baby and family, waiting to learn if she could be "salvaged" and worrying the deadly sarcoma was growing.

Then she got a life-saving phone call. Mayo Clinic doctors asked her to come to the clinic in Rochester, Minn., for the experimental surgery, which had only been tried on cadavers.

"The plan was to remove the tumour, splitting my pelvis in half and removing the left half and left leg and lower spine," she recalled.

Basically, the doctors would cut her in half, remove her midsection and put her back together using the bone from the amputated leg.

Ollson was thrilled.

"Somebody had a plan. It wasn't hopeless."

Family and friends held a social and raised $20,000 to cover the family's travel and living expenses for the 52 days she spent at the Mayo Clinic. The surgeries were a success.

After much rehabilitation, she put her mobility to the test this May, walking down the aisle of their church on husband Daryl's arm, on her way to the altar to renew their vows on their 10th anniversary. She used just a cane and a prosthetic leg with a microprocessor. She says she's leaned on Daryl, her high school sweetheart, throughout the ordeal.

"He's the glue. It's been a lot for him to endure."

Ollson says she's never dwelled on "why me?"

"We don't know when it started... It's not known why anybody gets it. There's no cause for it, no genetic link," said the woman with no cancer in her immediate family.

"There's some purpose to all this whether I know it or not," she said.

carol.sanders@freepress.mb.ca

Republished from the Winnipeg Free Press print edition September 18, 2010 A6

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