Positive Outlook Pays Off

Teen and Family Recall Battle Against Osteosarcoma

Last updated Monday, July 24, 2006 1:04 PM CDT in Our Town

By Bettina Lehovec
The Morning News

She walks with a slight limp, a reminder of the 10-pound rod in her leg. Cheerleading and running track are no longer options, as such activities might jar the rod loose.

Taylor feels the metal when the weather turns cold or when she rises after sitting. It takes her a few minutes to readjust, she said. For the most part, she's fine, able to walk, bowl and dance.

She followed her parents' lead in adopting a positive attitude toward her illness from the start.

"It's a scary thing, of course, but you can't dread it," Taylor agreed. "You can't dwell on why." The cancer was caught in its very early stages, contributing to a positive prognosis. It's possible the illness will return, but Taylor doesn't see much sense in fretting.

"I know if I worry about it every day, I'm wasting a lot of my life on it, so I choose not to," she said.

'Best Case Scenario'

The Johnsons are quick to count their blessings, including a series of "best case scenarios" that boosted Taylor's chances from the start.

The fast-growing cancer was caught early, before it metastasized to the lungs, as it often does. It had settled in her shin bone rather than her thigh or arm. The farther away from the lungs, the better, Mike Johnson explained.

Newly developed surgical procedures allowed Taylor to keep her leg. A scar running from 3 inches above her ankle to 2 inches above her knee shows where a titanium rod was inserted, replacing the tibia and knee. Even five years ago, many youngsters with osteosarcoma lost the affected limb.

"Medical technology has come a long way," Mike said. He and Kim chose the St. Louis hospital because it has a doctor who specializes in limb-saving surgery.

Yet Taylor suffered, too. The chemotherapy made her very ill. Side effects included hair loss, vomiting, nose bleeds, infections and malnutrition. She had numerous blood transfusions. Her weight dropped to 85 pounds.

"There were days we had to carry her out of the house and into the car to do physical therapy," Kim recalled. The therapy was needed to strengthen leg muscles and to train Taylor to walk again. The muscles, nerves and tendons around her knee all had been cut.

Taylor spent close to three weeks of each month in the hospital, she said. One of her parents was always with her. The Johnsons own Jaeger Plus Haines Inc., an insurance firm in Fayetteville.

Taylor never feared she would die but did worry initially about losing her leg. She balked at physical therapy after the surgery simply because she felt so bad, she said.

Tyler made a deal with his sister to motivate her to work at therapy. He promised to walk with her during graduation ceremonies if she strengthened her leg. He also gave her his lucky quarter, a gift Taylor still prizes.

Fayetteville High School teacher Cynthia Moss worked with Taylor during her home time to keep the teen caught up. Taylor visited the school for cheerleading hour each day when she able. She didn't attend athletic or social events because her immunity was so low.

Personal and family friends rallied around to offer support. Taylor responded with mixed emotions -- both touched by the thoughtfulness and embarrassed by the outpouring of prayers, cards and gifts.

"(The support) was absolutely appreciated by her and by us, but (the cards and gifts) were a reminder that something was wrong," Mike Johnson said. He remembers Taylor distancing herself from her friends, but the teen recalls it differently.

"I didn't want the cancer to define me ... The more I was OK with it and acted fine with it, the more other people were OK." She dealt with the issue of hair loss by calling attention to her beautiful wigs and hair extensions, for example.

The long year as an invalid taught her patience, Taylor said. She had to adapt to other children in the hospital and the constraints her own condition placed on her.

"Taylor is much more emotionally advanced than a lot of people because of what she went through," her father said. "She's a remarkable girl."

Living Strong

Taylor made up for lost time by plunging into activity during her senior year. She was a typical teen, spending her time at athletic events, dances and hanging out with friends.

She was vice president of the school apprenticeship program, serving her apprenticeship at Jaeger Plus Haines. She was also a member of the National Honor Society, the DECA marketing club and the bowling team.

The honor student plans to attend the University of Arkansas in the fall, majoring in business. Her brother will take classes at NorthWest Arkansas Community College.

Taylor received a Youth Excellence Award from the Fayetteville Noon Kiwanis Club in April. The annual awards recognize students who have overcome adversity to succeed.

"Taylor could have given up and stopped fighting," wrote school counselor Lesli Zeagler in a letter nominating Taylor for the award. "She could have easily decided to withdraw from school and/or her group of friends. She could have had a less than positive attitude. Anyone would have understood. She chose not to do any of these things. She got right back in her routine as soon as possible, even though some mornings it was excruciatingly painful to even walk.

"Taylor is a true inspiration ... She has faced an extraordinary challenge and beat it ... Her grace and attitude throughout this challenge is amazing and remarkable ... She has more inner strength than most adults I know."

Taylor shared her experience with peers at a Eureka Springs School District conference in May. She was one of four teen speakers addressing reasons to abstain from sex, drugs and alcohol. Taylor shared her story to underscore how precious life is.

The teenager also worked with school volunteer Cynthia Cope to plan a daffodil garden for Fayetteville High School. The daffodil is a symbol of cancer awareness and healing.

"Nowadays, so many people have friends and family who have experienced cancer," Taylor said. "A garden is a good way to remember what they mean to you and replace (the trauma) with a flower that you're not afraid of."

The garden will be planted by Taylor and Cope this fall. A grant secured by school counselor Dawn Norman will cover the cost.

Each member of the Johnson family wears a yellow wristband inscribed with the words "Livestrong." The bands were made popular by cyclist Lance Armstrong's battle against cancer in 2004.

They signify solidarity in the fight against cancer. The family has pledged to wear the bands "until they fall off and we can't find replacements," Mike said. They're a symbol of the road the Johnsons have traveled and the lessons they've learned.

"None of us in the family will ever look at things the same way," Mike Johnson said. "A lot of things that we thought were important, they're not -- like work, like school, like not having time to take off during the day and do things.

"We value our time together more. The little things people worry about -- we don't worry about them so much anymore."

Cancer in Children

Childhood cancers are rare. About 12,400 new cases will be diagnosed in the United States this year, with an estimated 2,300 deaths occurring.

Leukemia is the most common childhood cancer, with brain and other nervous system cancers second on the list. Other cancers include neuroblastoma, lymphoma, soft tissue sarcoma and bone cancer.

Survival rates have risen sharply in the past 30 years. Five-year survival rates for all types of cancer combined were nearly 80 percent in the late 1990s, compared to 60 percent in the mid-1970s. Long-term side effects from treatment can occur.

For more information, contact the American Cancer Society at (800) ACS-2345 or www.cancer.org.

Source: American Cancer Society and National Cancer Institute

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