Fort Wayne woman facing cancer after autoimmune disorder

FORT WAYNE, Ind. (AP) - Carla Pieper Knuth may be one of the few people in Fort Wayne who counts a 27-year-old milk carton among her prized keepsakes.

The carton features a photo of her daughter, Tara Knuth, when she was only 2 years old - but the little girl wasn't a missing child. Instead, the picture was a way to recruit people to a new idea: a national bone marrow registry.

Diagnosed with an autoimmune disorder called severe aplastic anemia, Tara Knuth needed a bone marrow transplant. Her own bone marrow wasn't producing functioning blood cells, and none of her relatives matched all six of the necessary characteristics for a transplant to take hold. For her to survive, an unrelated donor needed to be found, and quickly.

It was a long shot, but she nonetheless became a medical pioneer. Her doctors had her turn to a national database of potential donors only about two years older than she was.

In turn, her parents supported placing the little blonde girl's photo on milk cartons in the hope of enticing more donors. If one matched, he or she would undergo an excruciating procedure than extracted marrow from their bones with a needle nearly a foot long.

Amazingly, within a matter of eight months, a donor was found from among the 100,000 people on the registry, which has since grown to more than 25 million worldwide. At the time, the chance for that happening was only about 10 percent.

But now, at the age of 29, Tara, a Fort Wayne resident who works as a one-on-one classroom aide to special-needs children, will need to be a medical pioneer a second time.

Guinea pig again

It started about seven months ago, after Tara had a sinus infection. "I had a lump behind my (left) earlobe," she said. "On Easter, it swelled up really big, to about the size of a half-dollar....It was painful. "

Painful enough that she went to the emergency room that day. Later, an ear, nose and throat specialist diagnosed the lump as a cyst. Surgery to remove it took place in late August.

But the surgery revealed the lump wasn't a cyst.

"It was cancer," Tara said. Specifically, it was an adenocarcinoma, a type of cancer that can arise in glands and other soft tissue in many parts of the body. The surgeon told her he was able to remove 99 percent of it, she said.

But after surviving chemotherapy and radiation to destroy her bone marrow so she could receive the transplant so many years ago, Tara will need to undergo radiation treatments again. And that means going down another medical path about which relatively little is known.

Dr. Dennis O'Brien, a pediatric hematologist and oncologist affiliated with Lutheran Hospital in Fort Wayne, said studies on the long-range effects of bone marrow transplants and the procedures used as prerequisites are just starting to be done. That's because radiation of varying kinds and doses is linked to blood and tumor cancers that can appear anywhere from two to 40 years after exposure, according to the World Health Organization.

Findings from studies so far include that bone marrow transplant patients face a higher risk of cancers from both full-body radiation to destroy malfunctioning marrow and some chemotherapy drugs used to suppress rejection of the new bone marrow, O'Brien said.

One such study of adults found about a 10 percent rate of new cancers; to the best of his knowledge, he said, the overall rate is between 2 and 5 percent. A difficulty in such studies is that in the early days of bone marrow transplants, treatments and prerequisites weren't standardized, O'Brien said.

And treatments were designed to use less radiation and chemotherapy as they became more sophisticated, he said.

That makes post-bone-marrow studies difficult to standardize because of low numbers and "a moving target," O'Brien said.

"People are now looking into the incidence of long-term consequences," he said. "Going forward, it's going to be interesting to see what are their risks."

He said patients such as Knuth should contact the hospital where they received their transplant to contribute to long-term quality-of-life and late-effects studies.

"Especially with these early patients,...the more information they (researchers) have about their early patients, even 30 years out from treatment, that kind of information can guide future treatments."

Tara, and her sister, Shantel Knuth of Fort Wayne, already have contributed to some of those studies, Carla Knuth said.

Good prognosis

Earlier this month, Tara underwent her first of 33 targeted radiation treatments over about six weeks - treatments that require her to wear a custom-made face mask with holes at specific spots to target her tumor.

"It's a low-grade cancer," Tara said. "So the prognosis is good."

Her first three treatments left her without major side effects, her mother, said. But the 29-year-old does not have health insurance through either of her two part-time jobs and has been told she makes too much money to qualify for coverage under the state's Healthy Indiana Plan.

Carla Knuth said it's uncertain how long Tara can continue to work, although that is her intention. Family and friends are staging a benefit Oct. 21 at American Legion Post 47 in Fort Wayne to help with medical bills and living expenses. Her father, Steve Knuth, is also facing major medical problems, Carla Knuth said.

All of 4 feet 10 inches tall now, Tara Knuth proved herself a fighter by the time she turned 3, her mother said. Indeed, even Tara's friends call her "tiny but mighty," her mother said.

She still recalls how her daughter survived a seven-hour bleeding episode after hitting her mouth on a corner of a coffee table on Christmas Eve. She has a picture of Tara having the new marrow infused into her body through an intravenous line and marveled at how she grew stronger every day as her blood counts went up.

"She basically had to grow a new immune system," Carla Knuth said.

Tara has a bit of facial weakness and will have to undergo more cancer tests. But asked if she's ready for another medical battle, Tara gives a shy smile and nods in the affirmative.

"I'm ready," she said.

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Source: The (Fort Wayne) Journal Gazette

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Information from: The Journal Gazette, http://www.journalgazette.net