Clarksville girl 'lived life to the fullest'

After 3-year battle, teen succumbs to rare liver cancer

August 21, 2008|By Janene Holzberg | Janene Holzberg,Special to The Sun

Those who knew Anna Tomalis best say the way she went about her life near the end truly captured her spirit.

The 13-year-old Clarksville resident, who had been battling a rare form of liver cancer for three years, was struggling physically in recent days. But she resolved to press on with life, managing to go horseback riding and take in a movie.

"Anna lived life to the fullest," said her father, Ron Tomalis. "She had every reason to not do something, but she always found ways to overcome her discomfort."

The Lime Kiln Middle School student, who was known for her upbeat attitude and compassion for others, succumbed to her illness Friday, her family said.

The Tomalises had worked for seven months to get Anna into an experimental drug trial before she was finally accepted into a program in Philadelphia a month ago, her father said. She was scheduled to have a second round of treatment the day she died.

While Anna had held out a lot of hope that the drug would help in her fight for life, she knew what she was up against.

"We had talked about what would happen if the chemo didn't work and the possibility of her dying," he said. "Anna knew her options were almost completely gone."

Anna managed to accept her fate while also battling it. In May, she stood by as her mother, Liz, testified before Congress in support of a measure that would give terminally ill patients access to experimental drugs that haven't received government approval.

Liz Tomalis has been "relentless" in her advocacy for her daughter, said Brenda Pound, a registered nurse in the children's diagnostic center at Sinai Hospital.

"This drug trial seemed very promising - not as a cure, but as a way to get Anna more time," Pound said.

Anna was one of the staff members' favorite patients, Pound said. Recently they had heard that Anna had been sleeping as much as 20 hours a day. But when she remembered she had a hair appointment, she arose from bed to keep it.

"We all laughed when we heard this story," the nurse said. "She always had her hair, makeup and nails done."

Anna had a fondness for fashion that spurred her to take modeling classes last fall when chemotherapy caused her hair to fall out, and travel to New York for fashion week. Her sense of style led to a small quandary for her parents: She requested to be buried in a pink casket.

After some searching, the Tomalises found an auto body shop that was willing to spray-paint Anna's coffin.

"That story made me smile - that was so Anna," said Gwyn Calanni, a family friend. "Now she has touched the lives of the workers painting that casket - you just know they have a great story to tell."

Calanni's twin daughters, Elise and Rachel, were Anna's classmates and are trying to come to grips with the death of their close friend.

"When you think of Anna, you think of the most amazing person ever," Elise said. "She was a very giving person."

Rachel concurred.

"To me, her most amazing trait was her selflessness," she said. "Even when she was having a crummy day, she put it all aside and was happy to be with her friends."

Since her original diagnosis in September 2005, after the discovery of a grapefruit-sized tumor on her liver, Anna had made nearly 500 trips to the hospital and had been admitted 90 times, yet rarely complained, her father said.

"We were never shocked by her strength and goodness, but we never took it for granted, either," said Ron Tomalis, adding that she set an example for her sisters, Julia, 8, and Megan, 6.

"Her life was like a stone being dropped in a pond, and the ripples she created continue to affect more and more people, even now that she's gone," he said. "Our family takes great solace in that."

A viewing is scheduled today from 3 p.m. to 8 p.m. at Witzke's Funeral Home, 5555 Twin Knolls Road, Columbia. A Mass will be held at 10 a.m. tomorrow at St. Louis Parish, 12500 Clarksville Pike, Clarksville.

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