'The Jamie-ness factor': Family, friends support teen in battle against rare tumor

From the first day of sixth-grade health class, the moon-faced girl gave Megan Birmingham a special greeting.

"Hey, coach!" she would chirp.

"She was the only one," said Birmingham, trying to remember if any other student called her by the nickname. "I don't know what possessed her."

With small classes at Chesapeake Science Point Public Charter School in Hanover, it was easy for Birmingham to get close to a cheerful Jamie Purper, then 12 years old.

So when Jamie got sick, Birmingham knew what she had to do: She applied for Anne Arundel County schools' home and hospital teaching program to continue seeing Jamie.

Since then, even after she got a new teaching position at Annapolis High School, Birmingham has been the girl's tutor, watching her grow into a teenager. Every week she visits Jamie at her small Harmans house to help her with homework.

"Then we just have our girl time," Birmingham said.

Sometimes they watch cartoons or flip through magazines. Some visits involve green fingernail polish.

No one knows why Jamie got a brain tumor. In fact, pathologists couldn't figure out what type of tumor it was. Doctors thought she was cancer-free after surgery in September 2012.

But when Jamie started complaining of back pain 14 months later, they discovered the cancer had spread to her spine.

Jamie, now 15, has undergone treatment upon treatment, trying to win a war against an unknown enemy.

About 4,300 children and teens annually are diagnosed with a brain or nervous system tumor, according to the American Cancer Society. More than half of them are younger than 15. In most cases, doctors can identify the type and create a treatment plan based on predicted outcomes.

Jamie's cancer doesn't fit any of the models. And that means every round of chemotherapy or radiation is a guessing game.

On a recent day at Jamie's house, she sat in a leather chair with her stuffed animals in her lap.

There's Cloud, the beluga whale; Licorice, the opossum; Scully, the pirate parrot; Doodle, the ostrich; Pearl, the poodle; and Lovey, her blanket. A mound of others are on her bed. She likes to cover herself with them at night.

Jamie has always been a little different from other kids her age. She doesn't care much for sports. She likes stuffed animals, boccie ball, Nancy Drew mysteries and singing along with the musical "Newsies."

That's just Jamie, everyone says.

Meanwhile, her twin brother, Tyler, a 10th-grader, is on the track team and is learning how to drive a stick shift. Though he's two minutes younger, Tyler is every bit the big brother, their mother says: a head taller than Jamie and always protective.

Kim Purper, who works in an orthodontist's office, was 36 when she and husband Jeff, a Department of Defense employee, had the twins.

"It was like a dream," Kim said. "The perfect pregnancy."

The children were healthy and thriving.

Dr. Eugene Hwang, a pediatric neuro-oncologist at Children's National Medical Center in Washington, D.C., said it's not clear why Jamie developed this rare tumor or what her chances of survival are. But Hwang knows she has an indomitable spirit.

In his office is a drawing of a frog on a lily pad with a firefly and stars that Jamie drew for him during one visit. A few minutes afterward, she was vomiting.

Hwang calls it the "Jamie-ness factor." Even when the teen is in pain, she is able to center herself, overcome a difficult situation and make the best of it.

"We're really fighting step by step with (the Purpers)," Hwang said. "The truth is there are some kids who are even more special, and we feel like she's one of them."

Back at Jamie's house on Tuesday, she has a string of glass beads - her Beads of Courage - she takes out of a pouch, running her fingers over each. The stars represent surgeries, the black ones represent pinpricks. Face beads are for hair loss.

Each bead with nubs represents a "bump" in the road. For Jamie, one bead represents the time she had an allergic reaction to a blood transfusion.

The glow-in-the-dark ones also have special meaning.

"I get a new bead every time I go to radio-nology," she said.

Kim smiled. Radiation, she corrected.

The beads are part of a therapy program for children with cancer. Jamie's string is so long the pouch contains extra beads to start a new one.

Her mother sits on a sofa on the other side of the room, checking Jamie's Warrior in Life Facebook page, which has more than 1,300 followers. It's a way for the family to share information on her treatments while encouraging support for research.

They're taking it easy today because tonight is a special evening. Birmingham has arranged for the Purper family to see "Newsies" at the Hippodrome Theatre. Last year Jamie considered going to New York to see the show on Broadway for her Make-a-Wish. Instead, they took a family trip to Florida.

When Birmingham learned "Newsies" was coming to Baltimore, she wanted to make sure Jamie got a chance to see it. The Hippodrome Foundation made plans for Jamie to meet the cast backstage after the show.

Jamie was most excited to see one character in particular.

"Jack, the guy who started the resolution," she said.

Kim smiled. "Revolution," she corrected.

The day after the show, Birmingham reported the details. During the first act, Jamie leaned all the way forward in her seat with wide eyes. By the intermission, Jamie had rested her head on Birmingham's shoulder. They thought she might be too tired to meet the cast at about 11 p.m.

But Jamie rallied, as she always does. She posed with the actors for photographs and even got her own "Newsies" hat.

"I feel bad that I can't have this relationship with every student, but I wasn't meant to," Birmingham said.

At Jamie's home, when the teen is asked how she's doing, she says OK. She wants people to know that, and also know this: If you have cancer, you can get through it.

But she's distracted by her mother's face.

"Mom, are you OK?"

"Yeah, I'm fine," Kim says. "I'm just proud of you."

Supporting Jamie

To show support for Jamie Purper and her family, follow Jamie's Warrior in Life page at http://www.facebook.com/jamieswarriorinlife.

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