Leslie Hotson needed her golf cart to get to class, but it had other uses, too. She laughed as she told me about the nights she spent shuttling her sorority sisters back from fraternity parties, even those she had been too sick to attend. Her eyes brightened and her lips curled into a grin, until finally she emitted her mischievous giggle.
Our mothers have been friends for decades, but I was five years older than Leslie and came to know her best in the year before she died. Last fall, we sat together on the wide front porch of her Palo Alto home, wisteria blossoms hanging around us, the door propped open so an oxygen tube could follow her outside. She sipped Capri Suns and ruminated on David Sedaris and Wally Lamb, roommate politics, Stanford professors, teasing brothers and a love of the sea. We talked about our vague, optimistic plans for the future.
Although she hid it amazingly well, I knew Leslie’s body was failing her. The pain floated from hand to ear to throat to heel to chest. She had always been small—she stood 4-foot-6 and never weighed more than about 65 pounds—but for the past several months she had been too sick to eat.
Leslie had struggled with cystic fibrosis all of her 21 years. She underwent more than 10 surgeries on her sinuses and respiratory system. She swallowed countless antibiotics, painkillers, blood pressure pills, digestive medications and immune suppressants to prevent her body from rejecting her transplanted lungs.
I knew that we would lose Leslie one day. But during those afternoon conversations on the porch, listening to her joyfully recall her sorority adventures, I sometimes forgot.
I always drove away smiling.
Tib Hotson licked her baby daughter’s skin, trying to decide if it tasted salty. Salty skin might indicate cystic fibrosis, Tib had heard. She licked the baby again, but she just couldn’t tell.
Leslie Joia Hotson had been born at Stanford Hospital several weeks earlier, a quick and easy birth on a late July afternoon. It was 1982, and a new test, performed while Leslie was still in utero, had suggested she did not have cystic fibrosis.
However, Leslie’s older brother, Drew, had been diagnosed with the disease a year earlier, as a 1-year-old. So five weeks after Leslie was born, Tib, ’70, and her husband, John, ’68, had their daughter tested again.
This time, the test came back positive.
Cystic fibrosis, as Leslie grew up explaining to people, is a fatal genetic disease, the most common one in the United States. Each year, one in 3,600 American children is born with CF, a disorder of the cells that line the lungs, small intestines, sweat glands and pancreas. The sticky, thick mucus it produces impedes oxygen intake, nutrient absorption and digestion (see sidebar).
The disease soon threaded itself into the Hotsons’ daily routine. Three times a day, Drew, ’02, and Leslie sat for 30 minutes while an adult drummed their backs to loosen mucus from their lungs. The kids called it “pat-pat.”
At age 3, Leslie joined the Stanford Community Recreation Association swim team. Her coach, Julie Hamilton, recalls watching the tiny girl cling to the wall in the throes of a coughing fit. As Leslie’s face turned bright red, other children turned to stare.
“It was awful to watch,” Hamilton says. “But next thing you knew, she was off the wall swimming again. She was probably the most talented swimmer I had.”
Leslie’s younger brother, Guy, was born in 1988, without CF. A short time later, doctors decided to remove one chronically infected lobe of Leslie’s right lung. But first her surgeon was asked to answer more than 20 questions Leslie prepared, ranging from “How many times have you done this?” to “Is there a lot of bleeding?” She hugged her fuzzy duck-billed stuffed “google” as she was wheeled in for her first major surgery. She was 7.
From that early age, Leslie became expert at discussing her treatment with medical personnel. She instructed interns on the correct dilution of her antibiotics and whispered to her mother which nurses were most adept at inserting IV needles into her hard-to-stick veins.
“Inevitably it would be written in her chart, ‘difficult patient,’” says Thayer Gershon, a family friend and Leslie’s teacher at the school at Lucile Packard Children’s Hospital. “She really wasn’t [difficult]; she just knew what was going to work.”
When one of her doctors once prescribed an unpleasant medication, Leslie baked a batch of cupcakes, set one smallish one aside, and smothered it with a sickening pile of frosting and jelly beans. “Here,” she said, and handed it to the doctor the next time she saw him.
“I’ll eat it later,” he promised. “No,” she said. “I want you to eat it now. In front of me.” The doctor took his medicine.
CF hits every patient differently. While Drew’s health remained stable, Leslie, after a brief improvement thanks to her operation, began sliding again by the late elementary grades. She was kept home from school for weeks at a time, receiving a steady diet of intravenous antibiotics. In sixth grade, she was absent so long the teacher gave away her desk, which Leslie announced matter-of-factly upon coming home from school.
She missed all of eighth grade. Gershon homeschooled her, carefully timing instruction around Leslie’s favorite soap operas.
“She would have her coughing fits,” Gershon recalls. “She would throw up phlegm and couldn’t take her breath. We’d get the oxygen out. She’d say ‘sorry about that’ and then we’d go on.”
Leslie had developed acute lung disease, and needed a transplant. She applied to an innovative live-donor program in Los Angeles, but doctors there determined she was too sick to risk the operation. She registered for a lung donation, and waited.
On Valentine’s Day 1996, her new lungs arrived.
The transplant surgery, complicated by scar tissue from Leslie’s previous operations, lasted six hours. Afterward, in the ICU, Leslie was in and out of consciousness and too weak to speak. “It was like she’d been hit by a train,” says Drew.
For weeks, every movement hurt. The medicines she took made her nauseous. Her legs atrophied from inactivity. She had to relearn to breathe.
Leslie described her recovery in her Stanford application essay:
“Not another afternoon. I don’t feel like getting up. He’ll be here to see me, though, and I haven’t done anything yet today. Should I shower, sit in my chair and eat, or do a lap around the second floor?
“(My doctor) would walk into my room with his hands in his pockets and a skeptical look on his face. His first question was always, ‘Have you done anything besides sit in bed all day?’ If I said I hadn’t, he would tease me, saying, ‘Are you too much of a wuss to get out of bed and do anything besides watch TV?’ ”
Slowly, she came back. After she was released from the hospital, she worked her way up to walking on a treadmill, then taking hikes in the Santa Cruz mountains, then springboard diving lessons. “At least this will show the doctor that I’m not a wuss,” she wrote in her essay.
The following September, Leslie started Palo Alto High School. Reintegrating into school after missing all of eighth grade was difficult. Friendship groups had formed without her. Her face was puffy from steroids. And despite doctors’ efforts to counteract the stunting effects of CF, she had not grown.
She was shy at first. Still, her peers soon came to admire her toughness. On a class hike at Yosemite, it was Leslie who was encouraging others, helping them up the strenuous parts, recalls her friend Katie Robinson. “You would think we should have been encouraging her. It was like nothing could hold her back.”
Her ninth-grade English teacher, Mike McNulty, assigned his students an essay about obstacles they had overcome. They settled into their chairs and began working. After a few minutes, McNulty looked up to see Leslie standing in front of him.
“I have a problem,” she said. “I can’t think of any obstacles.”
McNulty remembers trying to keep a straight face. “That was a perfect example of what she was like.”
Leslie worked on the student newspaper and helped start a school literary magazine. She won awards in physics. Her senior year, she was accepted to Stanford.
In September 2000, she moved into her freshman dorm, Branner Hall. Since the smallest exposure to bacteria could lead to infection, the shared doorknobs and recirculated air in the dorm presented big risks. But Leslie soon fell in love with college life. She discovered drinking games, parties and endless late-night conversations. That winter, she joined the junior varsity crew team as a coxswain. For once, her small size was an advantage.
As a teenager, Leslie had become frustrated by her tiny stature. How could she dress fashionably when the only clothes that fit her were decorated with butterflies or pink lace made for a fourth grader? And while she got along well with young men, she had never really dated.
Humor rescued her. She took to dressing in costume on Halloween, bringing a friend along as a “babysitter” and collecting candy. She got a kick out of paying children’s admission prices at the movies. And she once related to Tib how a Stanford athlete in the training room had offered to lift her as a weight.
In spring of her freshman year, Leslie pledged Tri Delt, where her friend Payal Dalal, ’03, was a member. She charmed the sorority sisters—singing the loudest, volunteering first for activities, drinking the most. She danced on a table or two. And she earned herself a nickname: Hottie Hots.
Around the same time, Leslie began to flourish academically. She chose a major in international relations with an emphasis in public health. Philip Lee, professor of human biology, still marvels about a paper she wrote for his seminar The Nation’s Health in the fall of her sophomore year. In eight pages, he says, she produced one of the best essays on controlling asthma he had read in 35 years as a professor. “She was a formidable intellect, a superb scholar,” he says. “She could have been a professor, a person working at the World Bank analyzing various development problems or working in a senior position at the World Health Organization.”
She had known since her lung transplant that chronic rejection was a possibility. Rejection sets in after the immune system recognizes the transplanted organ as foreign and attacks it. About 50 percent of people who receive lung transplants die within five years.
To stave off rejection, Leslie took a number of medications to suppress her body’s immune system. Such medications have a host of side effects. They can expose patients to opportunistic infections, lead to diabetes, and make bones fragile and skin thin and susceptible to cancer.
In certain cases, second transplants may be performed, but Leslie had accumulated a great deal of damage to other parts of her body and doctors determined she would not do well with a second transplant.
During a lifetime of missed birthday parties and canceled vacations, Leslie had learned to be patient. But now she was fed up. She didn’t think her doctors were listening to her. “She was angry at a lot of different things,” says her doctor, Noreen Henig. “I think she was frustrated that we couldn’t do more.”
Leslie lived in the Tri Delt house during fall and spring quarters of her sophomore year, but by the next fall she was too sick to return. Occasionally she felt well enough to meet a friend for lunch or coffee. They would walk alongside Leslie, her oxygen tank slung over a shoulder. “Part of me realized she was getting sicker,” recalls Laura Hiatt, ’04, “but she was so nonchalant about it.”
Leslie had always insisted on not being treated like a sick person, and as her condition worsened, she worried that she was too ill for anybody to overlook it. “I am so sorry I haven’t called you back or at least let you know why I have stopped talking to my friends,” she e-mailed Dalal last June. “Basically, after several tests, the conclusion is that my stomach doesn’t work.... I hope you had an awesome birthday and I am very sorry I missed it.”
For Tib’s birthday last May, Leslie left sticky notes all over the house. “I didn’t know Wonder Woman did the treadmill,” read one. “Don’t forget to treat yourself to something special more often,” read another, attached to a $20 bill. Too weak to walk upstairs, she asked Guy to put a note on her mom’s bathroom mirror.
“Good morning, gorgeous,” it read.
The last time I saw Leslie was in October. She showed me pictures of a beach house where she had stayed with her parents a month earlier. And she described the luxurious house next door. “I told Dad he had to buy it,” she laughed. “It’s perfect for me.” It had an elevator, after all.
She talked mostly about her friends and brothers that afternoon. And she confided one principal concern—that if she stayed out of Stanford too long, she would need to reapply.
She died two weeks later, on October 24, at Stanford Hospital. Her mother was at her side.
In early November, a standing-room-only service was held at Memorial Church. Drew delivered the final eulogy.
Looking out at the runny noses and tear-stained cheeks, he ventured a joke. “They say it helps to picture the audience naked,” he said. “I think I’d like to picture the Tri Delts naked.
“That’s an example of the stupid stuff I’d always say to Leslie and she’d always laugh, then let me know how immature I am.”
He smiled.
“A lot of people remember that Leslie was so happy and brave,” he said. “Really, she was a happy person who just happened to get sick.”
Jocelyn Wiener, ’99, is a reporter for the Sacramento Bee.
