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Sara smiles despite it all

An ill toddler and her family endure the most stressful of times.

By WAVENEY ANN MOORE
Published August 4, 2006

ST. PETERSBURG

Twenty-month-old Sara McCaslin jumped and ran and climbed, lights on the single sandal still on her feet twinkling as energetically as its small owner. As she faces the battle of her life, Sara's parents are counting on that same strong spirit to carry her through.

Sara has desmoplastic infantile ganglioglioma, a rare brain tumor that affects very young children. Aggressive treatment to stem the tumor's rapid growth requires twice-a-week blood tests, a four-day stay for chemotherapy at All Children's Hospital every 21 days, and regular visits to the Preston Robert Tisch Brain Tumor Center at Duke University.

This week, her parents, Laura McCaslin, 31, and Erik Clifton, 35, will learn whether the treatment is working. Aside from Sara's illness, they worry about her healthy twin brother, Seth, and the effect of the family's strain on him. They're anxious, as well, about their frequent absences from work and their finances.

"You never think it's going to happen to you," Clifton said, adding that the stress has been "unbelievable."

Sara and Seth were full-term babies, McCaslin said, and apparently healthy. Sara, though, was "a very fussy baby, very irritable, always wanting to be held," she said. Doctors could find nothing wrong.

Last August, though, she had a seizure. "Her eyes rolled back and she turned blue," her mother said. That Friday evening, the 9-month-old was rushed to All Children's emergency room, where a CAT scan revealed a brain tumor. Surgery was scheduled that Monday.

"That weekend was pretty much a fog," McCaslin recalled. "The longest weekend of our lives," Clifton added. The surgeon was able to remove only part of the tumor because of the danger to Sara.

McCaslin and her mother, Bonnie Plennert, turned to the Internet to learn about the condition. Their research led them to Dr. Sri Gururangan, director of the pediatric clinical services at the Preston Robert Tisch Brain Tumor Center at Duke University in Durham, N.C. He agreed to see Sara a week before last Christmas. By then, her tumor had grown. Gururangan recommended chemotherapy, which began in January. New tests in June, however, showed continued growth, so Gururangan recommended the current, more aggressive treatment.

"If she were an adult, then we would use also radiation therapy," said Dr. Jerry Barbosa, medical director of pediatric oncology at All Children's Hospital, where the treatment is being administered. "With her so young, we try to buy time with chemotherapy. In her case, I am pretty confident that chemotherapy will stop the growth of the tumor."

Gururangan is similarly assured. "I am hoping that we can get rid of it completely and the tumor will not come back. The track record with this type of chemotherapy has been very good," the pediatric neuro-oncologist said during a telephone interview.

"The tumor involves a critical portion of her brain," Gururangan said. It looks benign under the microscope, "but in the brain, benign tumors can behave aggressively," he said. "Sara actually looks much better than what her tumor shows. She's one of the most active children I've seen in my clinic."

Sara's parents, who bought their two-bedroom home in the Kenwood neighborhood weeks before they learned they were having twins, said their lives have changed drastically since their daughter's illness. McCaslin has set up a Web site about Sara - caringbridge.org/visit/saramccaslin - a project she describes as therapeutic.

The couple say they are grateful for the support they've received. The Children's Dream Fund will install playground equipment in the family's back yard so Sara and her brother can play safely at home, without worry of infections. Another charity, Fore the Children, has provided a pool fence.

McCaslin, a registered nurse at Suncoast Medical Clinic, and Clifton, a cook at Red Lobster on 66th Street N, say their employers have been supportive. Even the company where Sara's grandmother Bonnie Plennert works, is helping. Weyman Willingham, chairman of the board at Wallace Welch & Willingham in downtown St. Petersburg, said the firm understands the difficult situation the family is facing. He said the insurance firm's latest fundraising effort is a raffle for a weekend getaway.

Sara's parents, meanwhile, take comfort in their daughter's ebullient spirit. Of the twins, "she was the first to sit up, crawl, walk," her father said.

"It's amazing, her resilience," her mother said. "It amazes me every day."

"Sara actually looks much better than what her tumor shows. She's one of the most active children I've seen in my clinic."

Dr. Sri Gururangan of the Preston Robert Tisch Brain Tumor Center at Duke University

[Last modified August 3, 2006, 20:25:53]