Originally created 09/24/01

Ill teen resolves to live fully



It's the first day of school, and a sandy-haired child, lugging a bookbag half his size, is hanging out in the hall, chatting with friends and waiting for the door to his homeroom to open.

For Aaron Booher, eighth grade is about to start.

In the hallway of St. Mary's on the Hill Catholic School, Aaron's thoughts zoom between new classes and new crushes.

But buried in the back of his mind are concerns that most 13-year-olds don't have.

Inside, his lungs are beginning to fail him because of the cystic fibrosis he was born with.

On the outside, you wouldn't know it.

His energy hides his body's struggle to stay healthy while he waits to receive a life-saving double lung transplant.

Sometimes he says he thinks about the phone ringing. On the other end would be the transplant center in Gainesville, Fla., saying it's time for his transplant.

But most of the time, his mind is occupied by school, sports and girls.

Aaron has resolved to live the life of a 13-year-old boy as fully as his body will allow.

But there are little reminders each day that his routine is different.

He wakes at 5:15 a.m.

The sun isn't up, but it's time to receive a treatment to loosen the mucus in his chest. Three times a day, someone beats on his back for half an hour while he inhales medicine.

The next few hours are filled with standard fare - breakfast, the ride to school, science class.

Before lunchtime, Aaron walks down the hall to the nurse's office. She gives him a handful of enzyme pills that will help his body digest the hoagie he's about to scarf down.

The final bell of the day rings, and it's time to go home with an assignment book filled with the night's homework.

A year ago, he would have stayed at school for soccer practice.

But doctors advised him to quit the team because he was losing too much weight.

That was near the time when his lung function dropped enough to make him a candidate for the transplant.

It wasn't until Aaron stopped playing soccer that his friends realized how sick he was.

Most of the pupils at Aaron's small, private school have known him since the third grade. They never questioned why he was growing slower than the rest of them or why he coughed so much in class.

"Before, whenever I used to cough in school, they'd all like look at me and I was like, 'I'm fine,"' Aaron said. "Now that they know that I have the disease and what it causes, the only time they'll ask if I'm all right is if I turn bright red."

Once others at his school found out that Aaron's family was trying to raise money for his operation, they pitched in and created a communitywide campaign to raise $100,000 to help pay for the operation.

At an age when differences can easily separate children from the pack, Aaron is popular at school. This year, he was voted school president, and the girls have decided that he's nicer to them than most boys.

Although, he stands about a foot and a half shorter than everyone else his age, classmates say it's easy to forget Aaron is dealing with a life-threatening disease.

"You never really know that he's sick," said Maggie Douglas, who prefers to affectionately call Aaron by his nickname, Shorty.

DESPITE THE NUMEROUS doctor visits and daily medical regimen, Aaron doesn't really think of himself as sick either.

An athletic child stuck with an uncooperative body, Aaron has found ways to do what others his age are doing.

On a cool August morning this summer, Aaron joined a throng of teens in a junior golf tournament.

As any golfer would be, he was visibly agitated when he sank one ball after another into a water hazard and was happiest when the ball bounced straight down the fairway.

"(Golf) relaxes me," Aaron said, "keeps a lot of stuff off my mind."

From across the course, there was only one way to spot Aaron among the khaki-clad golfers. He was the only one in a golf cart.

Because he could easily become winded carting his clubs, the tournament organizers agreed to let him ride between holes.

Being set apart doesn't bother him, he said. And he doesn't embarrass easily. The differences are more minor irritations than anything else.

He wasn't the best player at the golf tournament, but at least he was playing.

Margaret Guill, the head of the Medical College of Georgia Hospital's Cystic Fibrosis Clinic, said it is important for cystic fibrosis patients to balance being active and maintaining their weight.

"We encourage physical activity - we don't want our patients to be couch potatoes," she said."But we don't want their physical activity regimen to interfere with their ability to meet their nutritional needs."

DURING A CHECKUP a few weeks ago at MCG, Aaron's doctors appeared encouraged by his health. Even a seemingly minor event of gaining four pounds was cause for celebration.

For someone his height, Aaron should weigh close to 100 pounds. But even with the gain, Aaron weighs only 64 pounds.

"It took almost a year for him to gain four pounds," said Aaron's father, Danny. "(He) could lose it tomorrow like that."

Mr. Booher said that about once a month, he looks at the wait list at the University of Florida's Shands Medical Center, where Aaron currently is listed sixth in line for a transplant.

Not much changed during the summer. The hospital has not performed any pediatric lung transplants in recent months.

In 2000, Shands did six pediatric lung transplants - all for cystic fibrosis patients. So far this year, they have performed only two.

Mr. Booher said he expects it to take a year before two lungs become available.

The important thing is to keep Aaron as healthy as possible so he has a better chance at recovering from the operation, he said.

"Aaron has pretty good muscle tone for his size, even though he's smaller than most kids his own age," Mr. Booher said.

BUT AFTER MONTHS OF relatively good health, Aaron's disease showed what it was capable of last week.

On Tuesday, Aaron's stepmother picked him up from school. After stopping for ice cream, Sharelle Booher said, she heard him succumb to a coughing fit in the back seat.

She looked in the rear view mirror and was shocked. The white tissue Aaron was holding was scarlet - covered in blood expelled from his lungs.

The next day, Aaron checked into the hospital for the first time since April.

"I was pretty freaked out because I didn't understand why he was bleeding so bad," Mr. Booher said. "That hasn't happened to him before."

The doctors explained the blood was not unusual for cystic fibrosis patients at Aaron's stage. It was a sign that Aaron's lungs are weakening. The infections, persistent coughing, medications and ever-present mucus are taking their toll.

The episode came as a harsh reminder to Aaron's family about why the transplant is so necessary.

Even in the hospital room where Aaron will spend the next week, he doesn't sit still.

He doesn't want to be there and isn't overly concerned about his new symptoms.

But he is visibly disappointed that his disease has encroached on his determination to lead a normal life.

"My energy and everything is fine," he said Wednesday, his mind on more pressing concerns than blood tests and antibiotics.

"I don't know why I can't go to my hockey game tonight."

Reach Vicky Eckenrode at (706) 823-3227 or vicky.eckenrode@augustachronicle.com.

Editor's note: Thirteen-year-old Aaron Booher is battling cystic fibrosis, a life-threatening and insidious disease robbing him of his ability to breathe. Aaron is on a transplant list for a pair of lungs, and in the coming months, The Augusta Chronicle will bring you the story of his struggle.

What's next: Aaron is expected to be released from the Medical College of Georgia Hospital within two weeks. He is receiving treatment after coughing up blood Tuesday.

He and his family will return to the University of Florida's Shands Medical Center in December for a checkup. He is expected to have a double lung transplant in the coming year at Shands. He currently is sixth on the waiting list.