'You live for the next day'

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'You live for the next day'

By Renée , Palm Beach Post Staff Writer

Monday, July 8, 2002

WEST PALM BEACH -- Princess lives inside this room. So please do

not disturb. She's disturbed enough already!

Steele giggles behind her door at St. 's Medical

Center. The sign tacked outside her room is a hint of her brand of humor.

She is sweet 16, no stuck-up princess. The message, scrawled in thick, black

marker, is a welcome greeting, not a warning to stay away.

It's her 17th day stuck in Room 3019, her longest stay yet in St. 's

pediatric ward. Dreary hospital rooms have been her second home since she

was 6, when a mold invaded her lungs. She was diagnosed with

life-threatening cystic fibrosis at 6 weeks of age.

She doesn't dwell on it. She giggles instead.

For her, just inhaling and exhaling have meant gasping exertion. She is

hospitalized regularly to have the life-choking mucus forced out of her

lungs, a repetitive, exasperating procedure that involves thumping her

chest, sides and back repeatedly with cupped fists.

Room 3019 is 's favorite. It is on a third-floor corner, with a

view of 45th Street. The natural light is perfect for Princess , a

budding artist. " Hi! Come on in, " she says, blonde and puffy-eyed. Then,

more giggles.

" It's hard to be a cystic, " she says. " But it's adventurous. You live day by

day. You live for the next day. "

The room has big countertops, plenty of space for her paints and her

brushes, as well as the travel necessities of a teenager -- lots of shades

of lipsticks, makeup, scented lotions and other girlie stuff.

There's a VCR so can share a movie with a friend. When she's

lonely, she keeps the television on mute. The silent images keep her

company. sits hunched on the bed, tethered to an intravenous drip.

Bottles of paint lay scattered on her frayed Disney Dalmatians blanket. On

Grandma's sham, a composition notebook is propped -- at the ready should she

need to jot down a thought.

Her artwork adorns the walls -- an array of colorful masks made from her

latest medium, the fat ends of dried palm stalks.

Her painting isn't restricted to the room. " If I could paint all day, I

would, " she says. " It is better than video games, and I like making stuff

for people. I like making other people happy. "

is St. 's in-house artist. She has been painting the beige

pediatric unit with colorful crabs, vibrant mermaids and snorkelers. It's a

work in progress. With each extended visit, the mural expands.

It brightens her outlook as well as the ward's sterile walls.

" Getting up to paint gives a purpose to get up and exercise her

lungs, " says Ellen Wolf, a pediatric nurse. " Her murals make the environment

more kid-oriented. It helps them heal faster. "

There is no cure for cystic fibrosis. It affects about 30,000 children and

adults in the United States. It causes the body to produce an abnormally

thick, sticky mucus in the lungs. The mucus also obstructs the pancreas,

preventing enzymes from reaching the intestines to help digest food. As a

result, some patients like get additional nourishment from feeding

tubes in their abdomens.

CF has a variety of symptoms: very salty-tasting skin; persistent coughing,

wheezing or pneumonia; voracious appetite but poor weight gain.

" A lot of CF kids develop very special skills and talents because they have

time to dedicate themselves to art or music or writing, " said Marie Cook,

executive director of the Palm Beach branch of the Cystic Fibrosis

Foundation, which has raised millions of dollars for CF research.

" Thirty years ago, these children had only elementary school to look forward

to, " she said. " Today, their dreams aren't limited. There are many CF

patients in their 30s and 40s. They go to high school, college, start

families. And they're not alone. There are many people trying to help them

financially, to further the research. "

Still, it can be an isolating, seemingly hopeless existence.

" Maybe living in a box on the side of the road is worse than being a

cystic, " says. " Sometimes I wonder what's the point of going to

school. I don't think I'll live past 30. Twenty or 25 I imagine. "

At first, cannot say how her life would be if she were free of

cystic fibrosis. It takes her 24 hours to come up with a list.

Her hazel eyes tear up when she decides to share it. " This is one of those

Oprah moments, " she says.

Then she reads, seemingly without breathing:

I want to learn to surf, but the last time, my feeding tube fell out.

I want to eat one of those three course meals -- without throwing up.

I want a laptop computer, so I can shop online and not get any germs and be

out of the hospital for more than two weeks.

I want a job but I'm an unreliable employee. I can't baby-sit cause I 'll

get germs.

I want to learn to play the guitar.

I want to ride horseback on the beach.

I want a boyfriend.

I just want to be normal.

toys with a tray of her favorite food -- fried chicken, French

fries and chocolate cake -- then pours nine pills on the bed that she must

take before she eats. She decides she doesn't feel like eating or swallowing

the pills. Besides, it's time for therapy.

Therapist Altringer has come to clear her lungs. , dressed in

blue satin pajamas with pandas, lies on her side. Altringer cups his hands,

places them on her rib cage and claps, claps and claps her again. He pounds

each side of her body-- back, front, right side, left side -- for about

three minutes. The treatment, which takes about 12 minutes three times a

day, reddens her skin to a sunburn pink.

" It produces percussion notes, and the sound waves travel through the skin

and into her lungs so that she can cough out the phlegm, " he says.

" It hurts to cough, " complains. " You pull muscles. Sometimes I

don't want to get up. I just sit here and try not to breathe. "

She's been admitted to the hospital almost every month since 1992, when she

developed the mold in her lungs. She hasn't stopped coughing since.

" Most CF patients are admitted once a year for a clean-out, " said Bob

Hammerton, a respiratory therapist who coaches . " We are stumped.

We don't know why she keeps getting sick. But coughing is good. The more

they cough the more they spit. "

gives her own diagnosis: " Cancer patients, they overcome the

battle and they go into remission. Me, I'm here all the time. There is no

cure for me. "

Harvey Finkelstein, a hospital volunteer, admires her spunk: " She is really

positive and willing to live life, not knowing when or if something is going

to happen. "

keeps tabs on her life in a notebook that is never far away.

" 's Memoirs, " she's titled it. It reminds her when she can expect

to be sick again and when she will be discharged.

She also writes of the insecurities of a teenager: She's embarrassed she

can't sport Brittany Spear fashions because baring her midriff would expose

her feeding tube. She hates being in public when she's forced to cough and

spit out gobs of green gunk into a napkin.

Out loud, she wonders who would show up at her funeral. Would teachers? No,

she's home-schooled. Would her friends in Port St. Lucie? No, she doesn't

have any. She giggles.

" I guess I just don't give up because I don't know what's going to happen

tomorrow, " she says. " Maybe something exciting will happen. "

After 20 days in St. 's, is eager to go home with her mom and

sister , 17.

" She has taught me to love. I've never regretted having her, " says

Steele, 37. " I want to make her normal -- she wants to be normal so bad. Her

life is my house. "

At her house in Port St. Lucie, Steele has ripped up the carpet, tiled

the floor, changed the air-conditioning unit, taken down the drapes, bought

a $17,000 airway clearance device -- all for . A nurse and

respiratory therapist come every day for her treatments.

And every day, as hard as she can, Steele tries to find time for

.

" You have a healthy child and a sick child, " she said. " And your sick child

needs you there. Your healthy child gets damaged. Because she's not getting

as much attention. "

is home for only a few days.

No, not another hospital stay. This time, she's off to the highlight of her

year -- summer camp at Sunny Shores Sea Camp in Hawk's Cay Resort. It's a

special place for kids with cystic fibrosis.

She has been going since she was 5. At 16, she is a bit embarrassed.

" It's kind of pathetic, " she says. " But I can't wait. "

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