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A DREAM UNDEFERRED

THE BALTIMORE SUN

The long, lean young woman bounded down the aisle of the auditorium at Southwestern High School and came to a stop at the foot of the stage. She wore a cover-girl smile, slim blue jeans and a fashionable bolero blouse that tied at the waist to reveal a midriff interrupted by an eye-arresting scar.

She waited to introduce herself to a guest speaker who moments earlier had finished a talk to an all-girl assembly on the importance of focus and setting goals in one's life. She was an enthusiastic young woman with dark, flawless skin and eyes that possessed the kind of clarity and sparkle that Mother Nature seems to reserve for the young and innocent.

"I'm Kathy Wade," she said, clasping her palms together in front of her chest in a shy, schoolgirl sort of way. "I was really encouraged by what you had to say. I'm focusing on being a super model. I'm doing a lot of modeling now and one day I'm going to own my own modeling agency."

Her confident assertions had the ring of an oft-repeated personal mantra and you did not doubt her claims.

The guest speaker quickly realized she was in the company of, yes, a bubbly, optimistic 17-year-old, but also a young woman who was hard-driving, singularly motivated and self-possessed. Gently prompted, Kathy Denise Wade talked unabashedly on that May day this year about the personal accomplishments she believes are propelling her toward the super-modeling ranks of Elle Macpherson and Naomi Campbell.

There was the first-place win in a local beauty pageant and appearances in several fashion shows. She had enrolled twice in modeling schools in hopes of obtaining a portfolio and developing the polish she needs for the big runway.

Then she shifted gears. Almost as an aside, she explained the scar on her belly. "I had my kidney out," she said simply. And then chuckling, she added: "I had a lot of things happen to me."

As if on cue, the auditorium lights flickered like dramatic punctuation to her words. But the lights were not in league with the storyteller. The custodian was signaling the stragglers to clear out of the hall so the doors could be locked. As student and guest ascended the aisle leading out of the auditorium, Kathy continued talking. But not about the operation she'd so suddenly announced.

She was 5 feet 8 inches tall and weighed 107 pounds, she said. She liked going out. No, she "loved" going out. She was left back in the second grade because of poor academic performance and missed a year of school in the sixth grade because of illness. In the 10th grade at Southwestern, she was looking forward to transferring to Milford Mill High School in Woodlawn, where she had moved with her mother in the middle of the school year.

She had been on television the previous year, she was going to be on the radio the next day, and she was trying to pin down a job for the summer. She spoke stream of consciously and without elaboration. And then, suddenly, she veered off again.

"I've got to give a fund raiser," she said enthusiastically. "There's this leg I want. I've got to have it. It's really pretty and looks just like a real leg."

Her words were show stoppers. The story that followed revealed a horrendous medical odyssey that began more than five years ago and, today, still has not reached its conclusion.

It is the story of a young girl facing a terrible disease and yet not allowing herself to be devastated by it. Indeed, never allowing herself to lose hope, or to lose sight of her closely held goals.

In June 1990, doctors at Sinai Hospital discovered cancer in Kathy's right leg. On Oct. 5, 1990, 11 days after Kathy's 13th birthday, the leg was amputated. "I can remember when I had that surgery," Kathy says. "It was a terrible day."

'I couldn't believe it'

You could say that a school-yard fight saved Kathy's life. It was near the end of the 1990 school year at Fallstaff Middle School when Kathy let loose with one of those mindlessly cruel remarks children hurl at each other. She insulted a boy's mother. They got into it. During the tussle, the boy threw Kathy to her knees. Swelling resulted in her right leg and would not go down. When Kathy's leg hurt so badly that she no longer could do the routines of the marching band she had joined, she complained to her mother.

Kathy's mother, also named Kathy, took her only child from their home in West Baltimore to Sinai Hospital for an examination. "They took X-rays and about a week later they said she had cancer in her leg," Ms. Wade recalled. "I couldn't believe it."

Numb with fear, she and Kathy sought a second opinion at the Johns Hopkins Hospital's Children's Center. Sinai's diagnosis was confirmed. Kathy had osteogenetic sarcoma of her upper right tibia. Bone cancer. Mother and daughter were devastated. "We might not have found out," Ms. Wade said, "until it was too late."

Doctors immediately began chemotherapy treatments to shrink the malignant tumor, which had affected Kathy's knee as well as her tibia (the thicker of the two leg bones). The goal was to remove only the diseased knee and save Kathy's leg. Another approach would have been to remove the affected leg bone and replace it with a synthetic version or a human bone of a matching size from a bone bank. Neither procedure ever developed as an option for Kathy.

The tumor was stubborn. It failed to respond to three months of intensive treatment. The cancer was aggressively spreading downward from Kathy's knee. Barely into puberty she was faced with losing her leg or losing her life. To save her life, doctors amputated her leg above the knee. Later, Kathy said, she would sincerely thank her school-yard adversary, though she said she did not tell him why.

"The cancer Kathy had was usually highly fatal," said Dr. Paul Sponseller, chief of pediatric orthopedic surgery at Hopkins. "Hers was so aggressive. Among the patients I've treated who survived, this was the only one I had to amputate."

He remembered his surgical patient as a "small girl who was withdrawn and overwhelmed by what was happening to her."

After the amputation, Kathy had to undergo two more years of chemotherapy. The intensive treatment was tough on her. She suffered the usual side effects of chemotherapy: total hair loss, infections, low blood count and hyperpigmentation, a condition that causes skin to darken.

She also developed diarrhea, bleeding, fibrosis and ulcerous colitis. Less than a year after the amputation, sections of her small and large intestines had to be removed because of the growth of fibrous tissues in her abdomen. A temporary colostomy followed. Eventually, she was strong enough for doctors to perform a re-section of her bowel.

In the year after the amputation, Kathy also had to deal with being fitted for an artificial leg, with realizing that her own once-sturdy limb was gone for good. Her mother was her strength during her crises, she said.

A single parent, Ms. Wade stuck by her daughter and never let her see her break down. That's what encouraged Kathy to come to grips with her disease and the reality of life with a prosthesis. It's what gave her the will to rally.

Less than 1 in 100,000

Dr. Curt Civin is not at all surprised by the effervescent personality that hoisted his patient above her medical travails. He is the oncologist at the Johns Hopkins Oncology Center who sees Kathy quarterly to flush the Infusaport catheter that is embedded in her chest. The catheter, which is connected to a major vein, permitted a gentler invasion into her body when she was receiving chemotherapy and these days allows ease in drawing blood and administering other intravenous medicines.

After her surgery, Kathy occasionally would drop by unannounced at Dr. Civin's office to show off a hairdo or new clothes, he said in an interview. Sometimes he found her energy exhausting and her spontaneous appearances off-putting. But then he began to realize that often her unscheduled visits were a signal that something was wrong -- something that she would not reveal until several minutes into an exuberant talk about events going on in her life. That is how he discovered a tumor in Kathy's abdomen -- nearly four years after her leg was amputated.

Dr. Civin's examination revealed an intrusive abdominal mass that was entangling itself in one of Kathy's kidneys and her blood vessels. It was a rare tumor known as a desmoid. None of the doctors consulted knew why it materialized in the young patient. "Childhood cancers are rare but hers is rarer still," Dr. Civin said. "Osteogenetic sarcoma develops in 1 in 100,000 children. Less than 1 in 100,000 would develop a desmoid."

Like the cancer that cost Kathy her leg, the new tumor did not respond to drugs used to shrink it. It had to be removed, and so did the kidney on which it had encroached.

Though the doctors were concerned about getting the tumor out as soon as possible, Kathy wanted to push the envelope. Her priority was to participate in the annual spring fashion show scheduled at Hopkins, Dr. Civin recalled. The "Fashion Makes You Feel Better" extravaganza was to mark "Children and Hospitals Week," a nationwide event held annually in March. The program was devised with adolescent cancer patients in mind.

In addition to the usual problems of adolescence, seriously ailing youngsters must grapple with the burdens of debilitating medication, weight gain from steroid treatments, hair loss from chemotherapy, amputations, depression and a general loss of self-esteem before their self-esteem has had a real chance to develop.

As its name indicates, the fashion show was planned to be a morale booster. Local merchants and beauty consultants contributed by lending clothes, wigs and makeup, and by offering hairstyling tips tailor-made for the young patients.

Kathy, who had dreamed of becoming a model long before cancer struck her, began taking part in the show in 1992, returning to participate even when she wasn't a patient in the hospital. She didn't want to miss this show in March 1994 -- and she didn't.

As soon as the event was behind her, though, she underwent the kidney surgery.

A spokeswoman for cancer patients

Facing one's own mortality sometimes makes a person philosophical and tranquil, but Kathy's stare-down with mortality seems to have had the opposite effect. She is hard-charging, and impatient about what she wants for herself, particularly as it applies to her dream of modeling. Given a chance, she would rather discuss her career plans than the 13 operations she has had so far.

Johns Hopkins Hospital, capitalizing on Kathy's upbeat nature, has invited her on occasion to speak publicly on behalf of the cancer patients at the Children's Center. Her talks are designed to promote the center's fund-raising efforts, said Debbie Bangledorf of the hospital's public-affairs department. That was the reason for the radio stint in May and the television appearance last year.

In giving these talks, Kathy simply tells the story of her own illness and recovery and encourages young patients to be brave.

Kathy said that frequently adult strangers who have noticed her amputation begin sympathetic conversations with her. The encounter typically ends with their hugging her.

While she may draw intense sympathy from adults, the reaction is mixed among her peers.

"Some of my friends can accept my [artificial] leg and some can't," Kathy lamented. "I meet new friends every day and it seems that once I tell them about my leg, they back off. So I just leave them alone."

One new friend who was not put off was 17-year-old Leslie Vass. The two young women do the usual rounds of movies, clubs, the mall and the Inner Harbor, catching a cab or the bus to get where they want to go, Leslie said.

They met at All Saints Middle School when both were new to the sixth grade there. "She was wearing a wig and a fake leg. I couldn't believe it," Leslie said. "I went home and told my mother about her."

The two young women did not become fast friends immediately. "We didn't say anything to each other right away," Leslie recalled. But she noticed that Kathy did not get involved in the usual girl gossip, and she liked that. And then, still before the two had introduced themselves to one another, Leslie learned that Kathy had defended her against some petty comments made by another girl. "I liked that," Leslie said.

She added that she "clung to [Kathy] at first because of her cancer. Then we just clicked." Now, she said, "I cannot be best friends with anyone else. Kathy knows how to have fun. She isn't like other girls who try to be in a guy's face. It's just me and her. She's dark and lovely."

A super limb for a super model

The artificial leg that Kathy has just "got to have" -- the one that inspired her to thoughts of holding a fund raiser for her own benefit -- was one she had seen on the television program "Entertainment Tonight." It was a Rolls-Royce among prosthetic limbs. It flexed at the knee and foot. The wearer could feel the sensation of every step. The residual limb was attached to the prosthesis in a suction socket that eliminated the need for undesirable, revealing straps. The outer layer of the prosthesis could be customized to match skin tone.

Kathy fell in love with it the way teen-agers fall in love -- enthusiastically, unconditionally.

She owns two artificial legs, one she keeps in reserve and her favorite, which she was wearing the day she introduced herself to the guest speaker. But she was experiencing problems with it. The limb had developed a split in the outer foam the day before. She spoke of this with the nonchalance of a young woman momentarily irritated by a fresh run in her pantyhose.

The televised limb was priced at $120,000, Kathy said. The one she wears now cost $9,300, paid for by Medicaid. It is not nearly as fabulous as the one on television. Hers bulges at the cup attachment near the hip, is hard to wear with a shoe and is not conducive to wearing with a dress because it is noticeably artificial, she said.

If she could afford a prothesis as advanced as the one she saw on "ET," she said, she could indulge her vanity and wear sling-backed shoes. She could wear skirts and dresses and expose her legs without feeling self-conscious.

The TV segment was empowering. The woman wearing the liberating prosthesis was a professional model who also had lost her leg to cancer, but had pursued her career nonetheless. Kathy recalled this with an obvious joy; here was a perfect example that she could follow.

Of all the wonder limb's promised abilities, what especially impressed Kathy was the guarantee that the wearer would have the feeling of walking. But even if she could afford such a limb, Kathy would have to wait for it to become available. If such a limb exists, it is in the experimental stage only, said Brian Luthy, of J. E. Hanger, the Baltimore orthotics and prosthetics company that made Kathy's artificial legs. "A prosthetic limb with a nerve feedback feature is not known among prosthetists," he added.

However, most of the other customizing features a model would want and need in a prosthetic leg are widely available: a multi-flexible foot, a flexible knee with hydraulic or pneumatic powering, a suction socket rather than straps, an endoskeletal system with a soft, skinlike outer covering shaped to resemble a sound limb and tinted to match skin tone. One can be had for far less than the television version -- somewhere in the $20,000 price range, Mr. Luthy said.

The kind of features aspiring model Kathy wants in an auxiliary limb are just what prosthetists like Mr. Luthy want to know about. "Occupation is one of the main considerations in designing a prosthesis for a patient," he said.

'Kathy will make her mark'

After being around Kathy for a while, it is not long before you question whether she can be that genuinely upbeat with all of the adversities in her life.

"It's not uncommon" for a cancer patient to be so optimistic, said Tom Kilmond, a physician's assistant in the oncology department of Hopkins' Children's Center, where Kathy frequently drops in to socialize or fulfill a staff request to have an encouraging talk with a new patient. "However, Kathy is a little perkier than most. She's grabbed onto this modeling thing and run with it."

Mr. Kilmond said his decade of experience with young cancer patients suggests that youth is a determining factor in the level of optimism among cancer patients. "You tell an adult they have cancer and they want to know when they are going to die, how long they have to live. Tell a 10-year-old he's got cancer and he wants to know when he is going to be able to play baseball again. It's clearly a difference in attitude. [Children] tolerate the therapy much better."

As for whether Kathy's career goals are realistic, Mr. Kilmond says he is convinced "Kathy will make her mark. Cancer was a big inconvenience for her. It did not change her mind [about modeling]. She's tough."

Clearly preoccupied with living, Kathy has bypassed the support groups run by the hospital's social service department. "It's depressing," she says. "I don't want to go to meetings to talk about all the people who died since the last time [the group met]."

Kathy's cancer has been in remission for three years now. Last spring doctors discovered cysts growing on her ovaries, but they turned out to be benign. Her illnesses make it unlikely, however, that she will be able to bear children.

Of the cysts, Kathy said, "I'm glad that's all it is."

This past summer she worked two jobs -- at a day-care center in the mornings and at Taco Bell in the evenings. She lives in a townhouse in Woodlawn with her mother, who works as a bookkeeper at an apartment complex just a block from home.

Now an 18-year-old in the 11th grade at Milford Mill High, Kathy is busy planning for the time when she takes to the fashion runway, walking the sassy walk of a super model. Until then, her thoughts are centered on a more immediate goal: "I just want a leg that looks like mine."

ALLEGRA BENNETT, a former reporter for The Sun, is a free-lance writer and motivational speaker.

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