With help, ill boy nears end of long road to hope

Sean Christian and his mother have been through a trying ordeal with his cancer. There's a ways to go yet, but the end may be in sight.

By MEGAN SCOTT
© St. Petersburg Times
published December 28, 2002

PALM HARBOR -- On Dec. 7, 2001, Sean Christian was reading every book he could find on Pearl Harbor.

But on that date this year, the 12-year-old Palm Harbor Middle School student was in Boston undergoing a bone marrow transplant to save his life.

"I thought it was real ironic he got the transplant on that day," said his mother, Linda Christian, 50, a nurse for the Pinellas County health department. "Sean really gets interested in a certain subject. He just reads about it all the time."

Speaking this week from Boston Children's Hospital where he's been since Nov. 29, Sean said he felt "so-so."

He had received a Christmas card that all the students in his seventh-grade class had signed.

"That really boosted his spirits a lot," his mother said.

Sean hasn't eaten in weeks; he gets nutrients through an IV in his arm. The chemotherapy has left him weak and nauseated. His voice is scratchy, barely audible.

But his mother says he's getting better.

"I'm around him 24 hours a day," said Christian, a divorced mother of two. "You can pick up on the little changes. That's why I feel confident that he's going to get out of here hopefully by his birthday, which is Jan. 8."

It's been a year and a half since Christian took her son to his pediatrician. She sensed something wasn't right.

"It was like I just felt that there was something wrong with him," she said. "He wasn't eating like he did. His energy level was low. There can be a lot of different reasons that can explain these things. It was like a gut feeling."

Sean was diagnosed in August 2001 with myelodysplastic syndrome, also known as pre-leukemia, a disease in which the bone marrow does not function properly and does not produce enough normal blood cells. It is often fatal.

Doctors told Christian her son would need to undergo a bone marrow transplant. They started Sean on chemotherapy while they searched for a donor, but they couldn't find one that matched.

Sean had his last chemotherapy treatment in January. The cancer went into remission, and he went back to school in April. His hair grew back, and he started gaining weight.

But in September, the doctors found that the disease had returned. Doctors referred Christian to the Dana-Farber Cancer Institute in Boston.

Doctors again told Christian a bone marrow transplant was Sean's only chance for survival. But this time, they found a match from an anonymous donor.

Sean underwent more chemotherapy and total body irradiation to kill off his own bone marrow before undergoing the transplant.

"Sean is doing well," said Dr. William Tse, one of Sean's doctors at Boston Children's Hospital. "Initially he was quite sick. Over the last week he is getting better and better. He's talking a little bit more. He's smiling a bit more."

Meanwhile, back in St. Petersburg, Christian's family is busy working to raise $100,000 for Sean's post-transplant expenses: medication, traveling back and forth to Boston, helping Christian pay the bills while she's not working. Christian's insurance, BlueCross BlueShield, covered the transplant.

Sean's aunt, Colleen Coyle, 49, of St. Petersburg, is heading a fundraising campaign with the help of the Children's Organ Transplant Association, a national charity based in Bloomington, Ind., which assists families with raising funds for transplant patients.

Mike Miller, director of the association's patient campaigns, held a training session on Dec. 12 for volunteers interested in helping with the campaign. So far, they have raised about $2,100.

"Whenever a serious illness affects somebody, it affects the whole family," said Coyle. "We're all trying to do what we can to alleviate the stress as best we can."

When Sean got sick the first time, Betty Coyle, Sean's grandmother, took him to the hospital every week for his blood work. She's helping in the fundraising efforts.

An aunt, Kate Coyle, 48, a caterer, has moved from Wilmington, N.C., to Palm Harbor to care for Christian's other son, 11-year-old Danny. Danny is in sixth grade at Palm Harbor Middle School.

"You do what you have to do," said Kate Coyle, who has no children. 'I'm here because my nephew needs me."

Kate Coyle said she talked to Sean for 40 minutes on Christmas Day with a videophone that the hospital provided for the family.

"He's a real special kid," she said. "We're sad the family can't be together on Christmas, but he got bone marrow."

"We consider that a miracle," Colleen Coyle added. "That's the greatest Christmas gift."

Sean spends his days sleeping and watching television. He doesn't feel well enough to play the video games or tinker around with the computer in his room. Sometimes he and his mom play checkers.

Sean already knows what he wants to do when he gets out of the hospital: eat his grandmother's macaroni salad, climb trees and go swimming.

Sean is saving his money for a table saw, said his mother. He was taking shop in school when he got sick and wants to go "way beyond what he did in the class."

"He's very into building things," she said. "He's made a bookshelf, a key holder."

Betty Coyle 72, of Clearwater, said her grandson is a practical joker.

"He calls me and tells me I've won Reader's Digest," she said.

Christian sleeps on a daybed in her son's hospital room, taking periodic walks throughout the day for exercise and fresh air. She prays, and she talks to other parents whose children are sick.

Sean has a tough road ahead of him. When he's released from Boston Children's Hospital, he and his mom will stay at the Ronald McDonald House, which provides housing for families who have children with cancer.

After that, he will go back and forth to the Dana-Farber Cancer Institute several times a week for follow-up care.

And even when he comes back to Palm Harbor, he will be kept in isolation, while doctors wait for his immune system to strengthen. Tse said it could be a year to a year and a half until Sean returns to a normal life.

But that doesn't discourage Linda Christian.

"You have to be positive," she said. "And I think if you're down, then they pick up on it. If you start worrying about everything that can go wrong, you make yourself crazy.

"So I just know that everything is going to be okay. I have every confidence in the world he's going to make it through with flying colors."

-- Megan Scott can be reached at (727) 445-4183 or mscott@sptimes.co .

To help

Tax-deductible donations to help Sean Christian and his family can be made in person at any Bank of America branch location or mailed to the Children's Organ Transplant Association, 2501 Cota Drive, Bloomington, Ind. 47403. Checks or money orders are made payable to "COTA for Sean C," account number 3069854919FL. For more information, contact campaign manager Colleen Coyle at (727) 360-1480.

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