Hailey Steward will be home for Christmas, but earlier this week, the 8-year-old leukemia patient wasn’t sure.

So she hedged her bets, writing a note to let Santa Claus know he could find her either at home in Bethel or at the Barbara Bush Children’s Hospital at Maine Medical Center.

Once she found out she would be allowed to go home, she wrote Santa another note.

“She truly believes in Santa,” said her mom, Tabaitha Steward. “She knows he would come visit wherever she is. She made sure to let him know she was coming home.”

Hailey was set to be discharged from Maine Med on Thursday afternoon, so she and about a dozen other children attended a Christmas party with Santa and an elf Thursday morning at the hospital.

She received a half-dozen gifts, including a stuffed panda bear – her favorite – and a red knit cap, which she promptly pulled over her bald head.

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Spending Christmas or any other major holiday at the hospital can be difficult.

Tabaitha Steward said she no longer stresses out about holidays – she now realizes all that really matters is being with family.

“You learn what’s important real quick. All four of us being together is the most important thing,” said Steward, referring to Hailey and herself, husband, John, and 13-year-old son, Jared.

Hailey’s leukemia was diagnosed when she was 5, and returned in October. Hailey spent Halloween and Thanksgiving in the hospital. The family has become used to having plans disrupted.

“You have to be prepared to be unprepared,” Steward said. “You just get to a point where you have to start relaxing. This is our ‘normal’ now.”

Maine Med employees lighten the mood for those staying at the hospital by hosting many holiday events, said Alice Burrowes, a child life program assistant at Maine Med. Besides the party, they set up a Christmas tree in the common area and host many visitors, including the Portland Pirates hockey team.

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“We really try to get them out of here before Christmas if we can,” she said.

For children who must spend Christmas Day at the hospital, the staff hangs stockings on their beds after they fall asleep Christmas Eve, and prepares a special Christmas meal.

Hailey, who fell asleep at the beginning of an interview with the Portland Press Herald, has decorated her room with Tom Brady memorabilia, including a Brady “Elf on the Shelf,” a cutout photo of the star quarterback’s head and at least two No. 12 blankets.

Before she drifted off, Hailey pointed out that she “hates the (Philadelphia) Eagles” and that her favorite school subjects are “gym” and “lunch,” answers that made her mom smile.

“She screams and dances whenever Tom throws a touchdown,” Steward said, laughing. “She’s really into football.”

She also likes Katy Perry, Minecraft, board games and snakes.

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Hailey faces either a 2 1/2-year course of chemotherapy and radiation treatment, or a shorter, but more intense, treatment plan that includes a bone marrow transplant, Steward said.

But despite the difficult road ahead, her long-term prognosis is promising, said her physician, Dr. Stanley Chaleff.

“There are still lots of reasons to be hopeful, and we’re optimistic,” Chaleff said.

“She almost always has a smile on her face, and a willingness to laugh. Her family has been really positive, as positive as they can be in this situation.”

Chaleff said Hailey’s chance of relapsing was only 5 percent after she completed treatment for acute lymphoblastic leukemia about a year ago.

But a routine test in October revealed the leukemia had returned, and Hailey has been in and out of the hospital since then.

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Despite her relapse, Hailey will have a 70 percent chance of being cancer-free for good once she completes treatment, Chaleff said.

“She is a special girl,” Chaleff said.

Her mother said the family had a difficult day when they learned Hailey had relapsed. But soon they decided that all they could do was persevere.

“Sometimes she gets upset and says she doesn’t want to do the treatments anymore, and then mommy has to be tough and say, ‘Hailey, you have to do this.’ ” she said.

“Then we focus on something good, like coming up with plans to scare the nurses.”

 

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