Family fights cystic fibrosis with hard work and milkshakes


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EFFINGHAM, Ga. (AP) — Maybe the talk is too serious.

Bruen Turner, 13, is mostly quiet sitting beside his mother recently in a booth at a crowded Pooler Chick-fil-A around noon.

Dena Turner, 48, talks about Bruen's near-the-heart catheter he had after saying that his lungs "could turn on him at any minute."

Or maybe Bruen is bored, or a little tired, or both. The teen rests his head on the table at one point. He stayed up too late, his mother says.

Or maybe, despite life-threatening cystic fibrosis and talk of his 40-year life expectancy, he's got his mother's buoyant attitude.

The teen quietly rotates his large Styrofoam cup of sweet tea to reveal smiley faces he's been carving around the rim.

"We have to find things to laugh about," Dena says.

The Springfield mother-son duo return from doctors' visits at a Jacksonville pediatric clinic with good news and inside jokes.

Dena types the good news on Facebook, for example: "height up, weight 97 lbs, lung functions great."

Jokes, forged in extended waits, or a 20-day hospital stay at Nemours Children's Specialty Care, still deliver.

"Like Steven," says Dena, recalling a fussy-looking dog with an overbite, bowtie and lisp.

She finds the Pinterest photo on her phone that reads: "Yes, this is Phteven."

Diagnosis with Twinkie milkshakes

Keith and Dena Turner didn't know why their son couldn't gain weight. In fifth grade at Springfield Elementary, the 11-year-old weighed 58 pounds.

"You know, we thought diabetes, thyroid," Dena says.

But his blood work was fine.

Asthma, they thought, prompted breathing treatments, and he did have a lot of sinus infections.

Considering his symptoms, Bruen's doctor asked to see his hands.

"It's called 'clubbing,'" Dena says, pointing out his flat fingertips seen in people with cystic fibrosis.

Bruen, who just finished eating 11 chicken nuggets, pulls out a white large bottle of enzymes called Zenpep.

He throws back four, oversized mauve-and-white capsules and swigs sweet tea.

Dena says he swallows as many as six of those big pills at once.

With cystic fibrosis, the teen fights to gain weight, urged to take in 3,000 calories daily.

Forget healthy eating as most count vegetable-rich diets; doctors want Bruen eating high fat and high protein.

The enzymes — he swallows up to 28 of those pills daily — help his body absorb protein and fat.

He earns $10 gift cards to Wal-Mart from the Jacksonville clinic when he gains enough weight.

And Dena may have perfected her Twinkie milkshake with sweetened condensed milk, Twinkies, of course, and Boost.

The mom knows how to disguise Boost's nutritious "vitaminy taste."

"He could have large milkshakes, like two or three a day," she says.

She plans to throw a bacon party for him since he recently crossed the 100-pound threshold.

Bittersweet reality

Hearing her son's diagnosis was bittersweet.

She knows now.

Before, sometimes Bruen would cough so much he sweated. And two years ago, his lung function was just 20 percent.

Treatment boosts his lung function to a steady 98 percent.

"His numbers are constantly going up," Dena says.

But it takes work.

"You have to squeeze it in," Dena says of treatment.

When they travel for overnight youth outings for church (the family attends Rincon Church of God), or family vacations, his machines go, too.

Bruen wakes up each morning, and straps on an inflatable vest that shakes mucus from his lungs.

That alone takes 20 minutes.

He also breaks open clear medicine tubes which he pours into machines that he holds to his mouth for breathing treatments and inhaled antibiotics.

"I think he gets kind of frustrated with all the treatments," Dena says.

Bruen inherited the genetic disease. Keith and Dena Turner are both carriers.

"Delta F508, that's his mutation," Dena says.

Cystic fibrosis affects a person's respiratory or digestive system, or both. In Bruen's case, it's both.

Problematic sticky mucus blocks airways.

Doctors already removed Bruen's stone-ridden gallbladder and appendix.

Coughing, bacteria and scar tissue add challenges.

"With cystic fibrosis, your lungs just kind of wear down," she says.

A transplant of two healthy lungs from a donor helps some people live longer.

As Dena talks about failing lungs, her words prompt "that same mantra:" Every day is precious.

She mentions Jacksonville "tune ups" when people with cystic fibrosis need aggressive treatment.

Bruen hasn't needed tune ups yet.

'Just get older'

He loves video games like Disney Infinity, he likes to swim, and as far as eating, he likes calamari, tilapia, oysters, pancakes and bacon.

He coughs once or twice within the span of an hour, but that's it.

God gives them strength sometimes minute-by-minute, sometimes day-by-day.

They believe God kept Bruen alive for 11 years before his diagnosis. Now Bruen improves with treatments.

Dena knows children who suffer more: An older child wearing diapers, others with learning disabilities, and one child with a tracheotomy.

"I don't see us as having it so bad," she says.

But time is short. That's the bitter part of getting the diagnosis.

Others count age 40 as life's midpoint, but that's old age for people with cystic fibrosis. There's no cure.

What does Bruen want to do when he gets older?

"I'm not sure yet," he says.

"I think, just get older," Dena says.

It's a serious moment considering Bruen's life expectancy.

But that's when the teen shifts the focus, and throws in a joke.

"No, I don't want to grow up," Bruen says. "It's a trap."

He says he read that line on a boy's T-shirt at church.

The family is "living despite cystic fibrosis." That's the tagline on Dena's "Breathing for Bruen" Facebook page.

They follow doctors' treatments, trust God and shift focus from the bad.

"We've got to look at the 'living' part," she says.

Copyright © The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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