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Life expectancy of hours, days turns into years

By Gary Pettus
[email protected]

Greg Jenson/The Clarion-Ledger

February 18, 2005 - Born with Trisomy 18, or an extra chromosome, Brandi Cowart of Magee, 8, has not only survived a condition that is often fatal to infants, she has learned to communicate with others and to enjoy play time with her siblings. With support from her family and physicians, she has risen above modern medicine's expectations for her.

There's a place at the table where an empty chair should be. A warm bed that's supposed to be vacant and cold. Laughter filling rooms that should store grief. Spaces made complete by children who shouldn't be there.

An underdeveloped heart. Blood cells gone haywire. Half-formed organs. An extra chromosome. A tumor the size of a small gravestone. They've survived it all. Call them one for the books. Their parents call them miracles.

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R2D2 is stuck in the closet. Brandi Cowart doesn't need him anymore. Doesn't need the stubby robotic contraption with the tube that once pumped oxygen into her lungs. She can breathe without him now. But, for years, she could not.

Born with an extra chromosome, a condition called Trisomy 18, she wasn't supposed to be able to breathe for long. Her muscles weren't strong enough. Says Dr. Mike Nowicki, a pediatric gastroenterologist at University Medical Center in Jackson: "The books say the average time of survival is five or six days." Brandi turns 9 in March.

She's had surgery after surgery. "We've fixed every pipe there is," says her father, Danny Cowart of Magee. More surgeries and a raft of medications are her lot. She uses a wheelchair, and weighs 32 pounds. Her development, mental and physical, has suffered. But not as much as doctors thought it would.

She has a vocabulary: "da-da" for "daddy," "du-du-du" for "done," and "yeah." She's not supposed to talk. Sometimes, she'll wave her hand at you backward. "That means it's time for you to leave," her father says. She loves to roughhouse with her brothers. She plays with Chip, the family's chocolate Lab, who licks her toes. She kisses her baby niece.

Says her mother, Brenda Cowart: Brandi is a living, breathing advertisement for the Children's Center for Communication and Development at the University of Southern Mississippi, which is holding a concert Saturday to raise funds for renovations. Children learn to communicate there; children with Down's syndrome, cerebral palsy, Trisomy 18 and more.

Brandi learned to "speak" there, when she was 2 or 3. "One day, she pressed a button to show she wanted to play with a certain toy," says Brenda Cowart. "I sat and squalled in that classroom." But, for Brandi, the center is not the whole story, says her mother as she watches her husband plant a kiss on their daughter's forehead. "That's why she's still here," says Brenda Cowart.

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The tumor threatened Stephen Hinson's lungs, but no one around him could breathe easy. Not his parents, Shelly and Albert Hinson III of Brandon. Not even his doctors. "They were afraid his lungs would collapse in surgery," says his mother, "and they wouldn't have enough time to hook up the lung-and-heart bypass machine."

The rare, myofibroblastic tumor that grew inside Stephen's chest was not cancerous, but it was about to stop his heart and lungs. The only "treatment" was removal. And the way physicians finally proposed to remove it last October had never been done before at UMC.

The miracle of Stephen Hinson, age 12, was one of skill, and timing. Six months earlier, this surgical team didn't exist. "It was really strange how every piece of the puzzle fit in exactly when it was supposed to," says Shelly Hinson. "They came up with a way to sedate him, little by little."

And, little by little, the tumor came out in three pieces: the first the size of "a small pot roast," Shelly Hinson says; the others were larger than a softball. "After surgery, the doctor said, 'Your son is now six pounds lighter.'" And his parents had lost the weight of the world.

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No one knows why Kev'Vontay Miller was born with a poorly made heart, or why it didn't kill him. Maybe it's because his mother needed him so. "He's my heart," says La'Tuana Harmon of Sallis. Kev'Vontay has had emergency surgery at least twice. "And I liked to have lost him twice," says his mother.

"It's hard, I cry. There's no need to tell a story. I get scared. But he's a fighter. He made it this far, he's going to live to have a healthy life. "Keep it in the Lord's hands. He's the only one who can do anything about it." Kev'Vontay turns 4 on Sunday.

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Last summer, Lindsay Smith's arms began to bruise easily. She began to tire easily. But nothing was easy after that, particularly facing the diagnosis. "It was like getting a two-by-four across your face," says her mother, Joy Smith. God did not "let" this happen, she says. "But how we face it is the true test of God's power in our lives."

Her teenage daughter faces it with chemotherapy. Acute myelogenous leukemia. It was caught early, which is good; without treatment, life expectancy is a few months. ACL blocks the production of normal blood cells. For Lindsay, a patient at UMC's Blair E. Batson Children's Hospital, the chemotherapy has the cancer in remission. "You hold your breath the next two years," says her mother. "You're pretty sure it's gone if you get past that."

Doctors say that Lindsay has already gotten past a lot. For now, the Vicksburg High School sophomore wants to pass a few cars in the '97 Honda that Dexter and Joy Smith bought for her. "I just want to go driving," Lindsay says. "I turned 16 when I was up here, and got my license. I've probably driven the car four times. My parents bought it for me the day before I was diagnosed."

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When Emma Grace Clanton was born 13 months ago, you could see inside her skin.
"Every vein running through her body," says Stephanie Clanton. "Her arm was the width of a large safety pin."

Born 16 weeks early, Emma Grace weighed 1 pound, 5 ounces; her eyes were fused shut. The night of her birth, her lungs collapsed. Surviving that, she went into septic shock a week later. "Every time she'd go into surgery, we'd kiss her and walk out," says Stephanie Clanton of Carrollton. "Then the surgeons did their work, and we did ours, which was to pray to God to give us a miracle."

The baby also endured eye surgery and 138 X-rays. She has a mild case of cerebral palsy. But she also has two teeth and is learning to talk she ought to be good at it by the time her father, Robert, a National Guardsman, gets back from Afghanistan. He'll come home to a baby known as "Amazing Grace."

"How often do you get to witness miracles?" Stephanie Clanton says. "Life is a miracle. I didn't know what it took for God to make babies and to make all of us work and operate until I had Emma Grace.

"I got to watch her eyes open."

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