Health

Wednesday, Nov 21 2012 08:00 PM

Family takes on sickle cell disease one day at a time

  1. 1 of 11

    By Shelby Mack / The Californian

    Prince Mack swings from the monkey bars of the swingset in the backyard of the home where he lives with his grandparents.

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  2. 2 of 11

    By Shelby Mack / The Californian

    Prince spends much of his time in his bedroom, playing video games and dreaming of being a superhero. His sickle cell disease often prevents him from playing outside or with other children because it puts him at risk of becoming sick. Even a seemingly harmless virus will result in a trip to the hospital.

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  3. 3 of 11

    By Shelby Mack / The Californian

    Prince does a breathing treatment on a Wednesday evening in his living room. The treatment helps to decongest him, which in turn lessens the chance of him getting sick.

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  4. 4 of 11

    By Shelby Mack / The Californian

    Prince's grandmother Laura Grant-Hattix helps him put on his helmet before he rides his toy motorcycle.

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  5. 5 of 11

    By Shelby Mack / The Californian

    Prince drinks Capri-Suns with Daniel Oslund and Jack Campbell during a Cub Scout meeting at Veterans Elementary School. Though Prince cannot participate in most of the outdoor activities of the Cub Scouts, he still goes to the meetings and participates in indoor activities.

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  6. 6 of 11

    By Shelby Mack / The Californian

    Prince and his grandfather Kenneth Hattix say bedtime prayers in Prince's room.

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  7. 7 of 11

    By Shelby Mack / The Californian

    Prince has been living with his grandmother Laura Grant-Hattix since he was an infant so he could get the special care and attention that he needs to fight sickle cell disease.

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  8. 8 of 11

    By Shelby Mack / The Californian

    Prince works on math problems in his second grade classroom at Veteran's Elementary School.

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  9. 9 of 11

    By Shelby Mack / The Californian

    Prince talks to his teacher Aileen Colitti as the class watches "Singin' In The Rain" as a treat on pajama day at Veterans Elementary School.

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  10. 10 of 11

    By Shelby Mack / The Californian

    Prince says the Pledge of Allegiance with his second grade class before school starts at Veterans Elementary School.

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  11. 11 of 11

    By Shelby Mack / The Californian

    Due to a headache, Prince eats his lunch in the nurse's office at school instead of in the noisy lunchroom.

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BY RACHEL COOK Californian staff writer rcook@bakersfield.com

Today is a day for Laura Grant-Hattix to give thanks that her grandson Prince Mack made it through another year.

"Year by year, day by day, especially when it comes to Thanksgiving, I thank the Lord that he is still here," she said.

Prince, a shy 8-year-old Bakersfield boy, has sickle cell disease. The illness causes normal, round red blood cells to take a sickle-like shape, which block blood vessels, often inducing pain and other complications such as strokes, recurrent pneumonia and kidney disease.

Prince has been in his grandparents' care since he was 3 months old. Grant-Hattix and her husband, Kenneth Hattix, have built their lives around him and mitigating his disease.

"He is our joy, he is our life and we live our life so that he can live," Grant-Hattix said.

Their efforts are inspirational, said Dr. Michael Jeng, associate professor of pediatrics at the Stanford University School of Medicine, who treats Prince at Lucile Packard Children's Hospital.

"The thoughtfulness and the dedication that his grandparents have put into taking care of him is really extraordinary," Jeng said.

A MORNING IN THE LIFE

It's a Thursday morning, a school day, and Prince wakes up in pain. His head hurts so much that grandma lets him go back to sleep. After breakfast, Grant-Hattix gives Prince a dose of hydrocodone, along with his morning allotments of folic acid, penicillin and an antihistamine.

Before they leave the house, Prince asks if he can play outside when he gets to school.

"No," his grandmother says.

"I feel bad sometimes saying no," she later explains, "but it would be worse if we were in the hospital."

This is the time of year when Prince's health usually takes a turn for the worse. He has asthma, so Grant-Hattix gives him breathing treatments to clear his congestion. She even sprays his bed with disinfectant.

In the winter, she tries to bolster his immune system with more penicillin and vitamin C. Her goal is to stave off the pneumonia that usually lands him in the hospital each December.

"The winter is just not our friend," she says.

While other kids arrive at Veterans Elementary School wearing a light coat or jacket, Prince comes bundled in a thick, puffy coat, gloves and a hat. While most students head outside before the school day starts, he waits in the library with a few friends, using fluffy dusters to sweep shelves and pester each other.

It's pajama day in Prince's second-grade classroom and some of the other kids are quick to point out that Prince isn't wearing his. He lifts up his shirt to reveal his bedtime clothing underneath. His grandmother felt it wasn't warm enough to send him to school in nothing but pajamas. She takes no chances with the cold.

Aileen Colitti, Prince's teacher, says she's impressed with the progress Prince has made this school year. He hasn't missed much school, and though he started the year behind, he's catching up.

He's also coming out of his shell. At the beginning of the year, Prince wouldn't smile, Colitti says. But the first time he scored 100 percent on a reading test, he told Colitti that he flunked the test. Just as she started to console Prince, "he got this huge smile and said, 'Just kidding,'" she recalls.

"By the end of the year, I'm going to feel good about sending him to third grade," she says.

'IT HURTS BADDER'

At lunch time, Prince's head starts to ache again. He puts his small hands to his forehead and clutches at his brow.

He eats his lunch in the school's office, and starts to color when he feels better. Gina Fleeman, a school secretary, takes his temperature and calls his grandmother. Sometimes the school staff calls her multiple times a week when Prince isn't feeling well, Fleeman says.

Prince goes back to class but the pain returns just before the final bell rings.

"It hurts badder than at lunch," he says, rubbing his forehead as he sits in the office once again.

His grandmother is called and leaves work to pick him up. Grant-Hattix says her co-workers at Albertsons, where she is a store manager, are understanding but sometimes she hears the sigh in their voices when she has to leave yet again.

"If I left work every time (the school) called, I wouldn't have a job," she says.

While he waits in the office, Prince recalls his trips to the hospital and the time he had to spend Christmas at a hospital.

"Whenever I go to the doctor (at the hospital), they say that they have to keep me and they take me upstairs," he says. "That always happens."

He remembers the time he had a headache so bad that he cried.

"I'm fine with a little headache, but I'm not fine with a big headache, a super one," he says.

Grant-Hattix quickly reaches to feel Prince's forehead for any sign of a fever when she arrives at the school. At home, she lays him on the couch and gives him more medication to soothe the pain.

PRINCE'S FUTURE

For now, Prince's family manages his illness best they can. Sickle cell patients as a group have a short life span, Jeng said, but hopefully with healthy habits and access to good medical care, Prince will do well. He has his grandparents' steadfast support to help him along the way.

"They take the energy and effort and ... the expense to drive all the way to Stanford for regular medical visits," Jeng said. "I think they've really crafted together a very good team to take care of their grandson as best possible. I'm very proud of them, I have to say."

The hurt in Prince's head continued to haunt him for the next few days after Thursday. He went to school Friday but came home and didn't attend class Monday.

But at last on Tuesday, he was finally free from headaches and back at school. Grant-Hattix only got one call from the school -- it was Prince asking if he could go outside for recess.

This time, she said yes.

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