Facebook, humor help kindergartener in battle against leukemia
Five-year-old Hailey Steward of West Bethel is fighting leukemia with the help of her doctors, family and almost 10,000 friends on Facebook.
Hailey is the daughter of Tabaitha and John Steward. She was diagnosed with leukemia in early October, after a long summer of high fevers and other symptoms that doctors struggled to find a cause for.
Since then, she has endured stays in the hospital, many needles, nine weeks of chemotherapy and painful side effects.
But last week, Hailey was all smiles as she showed off her Beanie Babies and talked about getting better.
Although she has not lost her hair so far, a stepped -up regimen of chemo beginning this week may change that. But Tabaitha has helped her daughter prepare for the possibility.
“Bald means you’re going to get better,” Tabaitha tells Hailey.
Replies Hailey, “I’m getting my hats ready.’
She has plenty of them – friends and family have made sure of that.
The Stewards are hopeful for Hailey’s recovery, thanks to an optimistic prognosis from doctors. It helps them face another two more years of chemo, which would taper later next year to once a month if the first, intensive phase is successful. Mom and daughter are currently commuting to Portland for treatments at BarbaraBush Children’s Hospital.
The little girl and her family have been on a roller coaster ride of emotion during the early phase. Often, says Tabaitha, “you can’t tell she’s sick. She’ll be outside playing.”
Then there are times, like last week, when she wakes up crying from the pain in her legs caused by the chemo.
Scheduled to begin kindergarten in September at the Crescent Park Elementary School, she’s managed nine days of school so far, all since Thanksgiving.
Not the usual patient
Doctors tell the Stewards that ever since the unusual amount of time it took for her symptoms to become diagnosable, Hailey has not followed the typical progression of childhood leukemia. Feeling well enough at times to play outside and keeping her hair are examples.
At the hospital, said Tabaitha, ‘We have medical students come in and the doctors would talk about her prognosis. As they’d leave, the doctors would say, ‘She’s not a typical leukemia patient.”
Hailey has forged a bond with the med students even though they come and go.
“Two of them told us they’re going into pediatric medicine because of Hailey,” said Tabaitha. “They still stay in touch with us.”
Often when a student enters the room, she said, “Hailey lifts up her leg for them to rub it [to ease the pain].”
And she teases them, “You’re not a doctor – you want to be a doctor.”
With Tabaitha’s help, Hailey has pulled a few pranks on her caregivers. One day, they slid some rubber snakes down a chute that carries medication from one floor to the other.
“We ran down the stairs,” said Tabaitha, in time to see the reaction of the nurses. “The nurses were great. They would actually scream so Hailey and the other kids could laugh.”
They also had a more serious way to cope. “When something sad or scary was going to happen, we’d do something nice for someone and it would make us happy,” said Tabaitha. Often they anonymously gave gifts to other children at the hospital.
Facebook has also been a great source of support for both mother and daughter.
“When we were spending a lot of time in the hospital, we were homesick, and Hailey couldn’t have many visitors,” said Tabaitha. “We wanted to talk to our family and friends.”
Tabaitha was already on Facebook, but to focus on Hailey’s battle she started a page entitled “Hailey’s Journey.”
“At night I couldn’t sleep because of everything that would happen during the day,” said Tabaitha. “I could write them all down on Facebook, and do what I could to make fun of them.”
Around Thanksgiving, Hailey said she wished she could have more friends on Facebook.
Tabaitha asked her how many, and the little girl responded with a million. Mom worked her down to 10,000.
“We put out the word over Thanksgiving weekend,” said Tabaitha, hoping to hit the mark by Christmas.
The response has been overwhelming. They’ve learned since that there is a 5,000-friend limit, and that number was reached this week. But Tabaitha created a second page – a fan page entitled “Prays and Love for Hailey’s Journey” – where people can “like” her. With that adjustment, Hailey was within about 2,500 of her 10,000 goal Wednesday.
She now has friends from all over the country and the world, and the messages of support keep coming.
“There’s a lady who every night writes something sweet,” said Tabaitha. “She tells Hailey to call her ‘Grandma Honeybuns.’”
People post all kinds of photos as well. Animal pictures are a favorite for Hailey.
When Hailey has been able to go to school, she’s had plenty of support from her big brother, Jared, who’s 10.
‘He checks on her through the day, carries her bag for her and gets her on and off the bus,” said Tabaitha. “He’s a good big brother.”
Hailey and her family have much ahead of them, but Tabaitha believes Hailey has what it takes to get through it.
“She’s amazing. I tell her, ‘You are one of the toughest little girls I know.’”