Friends, family and faith help teen girl with illness

The teen-ager shies away from the attention others try to heap on her.
By LINDA M. LINONIS
VINDICATOR STAFF WRITER
YOUNGSTOWN -- "It's turned our life around," said Alice Ezell about the illness of her daughter Tiffany.
Tiffany, who will mark her 14th birthday today, has clear cells sarcoma, also known as melanoma of tendons and aponeuroses that connect bones and muscles. The rare malignant soft tissue tumors affect all ages including young adults and children.
But the South Side mother and daughter aren't facing the medical emergency alone. They have support from their family, friends, church and community. At a meeting of TON'Z (Take Off Nutritionally -- Zap), a Christian women's fellowship, Ezell happened to mention what was happening in her life. The group, organized by Kathryn Hawks Haney, also the founder of Give the Children a Chance Inc., went into action from there. Give the Children a Chance and TON'Z are sponsoring a fund-raiser for Tiffany on Sept. 24 at Temple Emmanuel Seventh-day Adventist Church, 108 W. Indianola Ave.
"We want to show our love of Tiffany and dwell on that, not her illness," Haney said of the reason for the benefit. "We want to take care of our own."
Funds will help defray Tiffany's expenses. The medical challenge began in the spring of 2004.
How it began
"Tiffany was having what seemed like muscle spasms," her mother said, and noted pain accompanied the problem. They visited a general practitioner and Tiffany received some medication to help relieve the ache. "But it didn't go away," Ezell said. "And she kept complaining about it."
Ezell said that resulted in a trip to Forum Health Northside Hospital, where X-rays and other tests were performed. "When all the doctors came into the room, I knew it couldn't be good," Ezell said. "I couldn't even imagine this ... but they told us Tiffany had a tumor as big as a lemon in her left leg."
The doctors explained the tumor, located near Tiffany's kneecap, was rare. Ezell said she was faced with telling her daughter the news. It wasn't easy for Tiffany to accept it.
"She was very hurt by the news that this was happening to her," her mother said. "And she was embarrassed." Her mother described Tiffany as a "typical teen-ager" and said her daughter appreciates the concern and fund-raising effort but shies away from being the subject of so much attention.
Several surgeries
After the diagnosis, Tiffany had surgery at Akron Children's Hospital. A subsequent blood clot put Tiffany in Northside Hospital, where other tests discovered a nodule on her left lung. A biopsy revealed a malignancy in her right lung so it was back to Akron for a second surgery. Two other surgeries in Akron have addressed other tumors.
"Then we were back at Northside for radiation and chemotherapy," Ezell said. Tiffany completed the radiation this past spring but continues with chemotherapy, sometimes being hospitalized and other times as an outpatient. Tiffany has been "a trooper," Ezell said of her daughter's attitude.
"It was looking really good," Ezell said, but recent tests have shown nodules developing.
"We'll take it one day a time," she said. "If you would look at her, you'd never know this is going on ... she's a beautiful girl."
Support helps
Throughout the medical ordeal, Ezell said, her family and her daughter's friends have been "very supportive." Ezell described Tiffany's friends as "good to her" through their visits.
Ezell also said the family has received help from the American Cancer Society and Forum Health with transportation and other expenses. Assistance also comes from Medicaid. Ezell said she worked off and on since her daughter's illness began but since she is Tiffany's main caregiver, that is her responsibility.
Tiffany, an eighth-grader at Summit Academy, also gets encouragement through cards from classmates. "Teachers have visited and sent homework," Ezell said. At various times, Tiffany also has had a tutor.
How she copes
Before her illness, Tiffany played basketball and was involved in cheerleading. Her mother said she has had to curtail those activities but remains a cheer guard, a squad supporter. She occupies some of her time with her hobby of collecting Tweety Bird items and attending Bible classes at Needles Eye Christian Center. "Attending these classes has helped Tiffany, and she loves going," her mother said.
Ezell said her support system includes her church, New Bethel Baptist, and her minister, the Rev. K.L. Simon. "I've talked a lot to my pastor," she said. "Faith is a great part of getting through this."