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After months in hospital, Utah girl gets Christmas wish

Published December 24, 2011 12:15 pm

As mom faces financial hurdles and helps teen defy odds, she says she's living with an angel.
This is an archived article that was published on sltrib.com in 2011, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Here's what Megan Birk doesn't have anymore:

The heart she was born with; the new model is nicknamed Thumper. Most of her colon. Her spleen, her appendix, part of her stomach and her pancreas.

Megan dreams of Red Lobster — shrimp scampi, snow crab, cheese biscuits — because she hasn't regularly eaten solid food since spring. When her mom, Paula Birk, recently brought Greek takeout into Primary Children's Medical Center, its spicy scent wafting toward her wistful daughter, Paula realized she should leave the room. Sometimes Megan asks to smell her food.

The teenager has spent years of her life in hospitals, defying doctors' expectations after her premature birth, then a bout with leukemia, and again after cancer treatment damaged her heart. Last spring, she was leaping and turning in a dance performance at Tuacahn High School for the Performing Arts near St. George.

Days later she was strapped to a gurney, being flown to Primary Children's as new tumors bulged from her side.

Once again, she wasn't just sick, but deadly sick.

"I knew what would happen," said Megan, 18. "I thought I'd have to go through all that cancer stuff again. I got really scared."

For most of her senior year, Megan has been at Primary Children's with her mother sleeping next to her almost every night. When her favorite teacher, her choir director, takes attendance at Tuacahn, he always asks whether Megan's back. Not yet.

As the sopranos warmed up in class in December, Megan lay in the dark in Salt Lake City, with Christmas lights draped over the bags of fluids on a pole helping to keep her alive.

"If she was going to die, she would have been dead this time," Paula said. "She wants to do her homework."

More than 150 children will be at Primary Children's this Christmas, where Santa will visit them as they sleep surrounded by blinking monitors and intravenous tubes. As the holidays approached, Paula hoped Megan would not be one of them.

This is, after all, a girl who was born 10 weeks early weighing about 1.5 pounds, the smaller of identical twins. Baby Megan caught pneumonia when she was about four days old and doctors told her mom she would never go home. Three years later, leukemia assaulted her and doctors once again predicted she might not survive. The treatment hurt her heart, leading to a transplant when Megan was 15.

For teenagers like Megan who receive a heart transplant, over half are alive 12 to 15 years afterwards. She was among the survivors, dancing at her new school, swimming in the pool and getting ice cream with her family. Her future was filled with possibilities.

And then one day last spring, Megan felt so nauseous at school she couldn't eat lunch. When she couldn't keep down food, water or even her heart medication, her brother, Lamar, took her to the emergency room in St. George. Doctors saw a large mass in her abdomen and rushed her to Primary Children's.

A biopsy identified a Desmoid tumor. Although considered benign, it invades, spreading like octopus arms into tissue. One of the edges of Megan's tumor was next to vessels that feed most of the intestines and stomach. After surgery, tumor cells likely remain — but they are too close to the major vessels for surgeons to remove them.

The cause of the tumor, which can recur, remains unknown.

"I always tell Megan and Paula too, 'You won the bad lottery,' " said Holly Spraker, Megan's oncologist. "It's not fair to even get one thing, but she's had multiple cancers now and multiple problems."

The tumor invaded part of her pancreas, some of which had to be removed. Because the pancreas didn't heal properly, the teen had problems eating solid food over the summer. She was initially in the hospital for about three months.

The suffering can still take Megan by surprise. Chemotherapy exhausted her and made her throw up. She cried because she got so scared.

"I gave up once," Megan remembered, when she was waiting for her heart. She gave up again when she first heard about the tumor.

"But then I say to myself I can't give up because if I do — it won't work," she said. "Nothing will help."

Though she's missed weeks of school, Megan walked on stage in a black dress to join the Tuacahn choir this fall in "When You Believe," a song about miracles and the power of hope. As she formed the words, a feeding tube ran out of her nose.

As for her own future, "I either want to be a heart doctor or a cancer doctor for little babies," Megan said from her St. George home, acknowledging her repeated illnesses may make performing surgery difficult."If I can keep my hand steady, then I can probably do it, but it will take a lot of work," she said.

Megan's identical twin, Jackie, is healthy but figures her sister is a lot stronger than she is.

"I always tell my mom, 'Why can't I take something? Why can't I take her illness and not have her suffer for such a long time?' "

In November, Megan was back in the hospital for doctors to cut out a cyst that had grown on her pancreas. They also removed a connection that had developed between her pancreas and her colon, allowing the potential spread of bacteria, taking out more of both organs in the process.

The planned two-week stay turned into a downward spiral of emergencies. Internal bleeding led to emergency surgery and more removal of Megan's colon. She was briefly on a ventilator.

Her mom began to worry about a funeral, as she had many times before.

"You go through the whole procedure — will I do what she wants?" Paula thought. "I lay in bed and I think, 'What colors?' 'Who's going to help me?' "

But once again, as Christmas approached, Megan began to recover.

During the latest hospital stay, Paula felt it was finally the right time to contact the family who gave Megan her precious Thumper. They sent a letter this month.

"Whoever gave my daughter the chance to live needs to know she takes care of their heart," she said. "She doesn't take advantage of it."

The woman's voice rose as 'O Holy Night' soared to its inevitable conclusion in Megan's hospital room: "Ohhh night deeeevine."

"Mom, I can't stand this music," said Megan as a nurse braided her hair. "No opera stuff."

Christmas was days away and the teenager wanted her tunes. Justin Bieber's high, boyish voice began to fill the room.

The week before she couldn't sit up in bed. Now she was walking to the bathroom and standing to brush her teeth — the kind of skills she would need in St. George, where the Birks' apartment has 20 stairs to the second floor.

The family lost their house after Megan's heart transplant and have moved three times since. Lawyers and collection agencies call frequently. Megan has been on Medicaid since July, which covers most of the recent expenses. But Paula, a physical therapy assistant, has only worked about two and a half of the last seven months. Caring for her daughter has become her full-time job.

Small in stature with a high voice that suggests she is younger than her age, Megan has the maturity to understand the impact her cascade of illnesses has had on her family, particularly her mom. Divorced from their dad, who lives in Germany, Paula has raised the teen, her three brothers and one sister essentially on her own.

"I always tell her I'm sorry for everything because it's a lot of money," Megan said.

But her mother sees what her daughter cannot.

"I live with an angel," Paula says. "I'm a very lucky woman."

On Friday, Megan earned her wings. She had the strength to walk up 24 hospital stairs and was healthy enough to eat steak and salmon.

With her mom and sister, she drove home to St. George to join her brother Lamar and her new puppy, a white Maltese, for Christmas.

She'll be back soon for more tests. But for now, Megan's proved — once again — she's ready to fly.

jlyon@sltrib.com

How to help

Contributions can be sent to The Village Bank in St. George, 435-674-5200, and directed to Megan's Heart for Life supplementary fund.