Katelyn Atwell


Katelyn Atwell

One chilly day in December of 2001, Sharon Atwell stood, transfixed, watching her youngest daughter carry the Olympic torch through the streets of Memphis. Amid a deafening tumult of cheers, shouts, sirens and applause, 15-year-old Katelyn Atwell waved serenely at the crowd and, with a radiant smile, quietly passed the Olympic flame to her mother.
 

Only two years earlier, Katelyn’s own flame had almost been extinguished by a bacterial infection that had catapulted her into the yawning void of a coma. Her journey back to the light has been slow, tortuous, and—in the words of many St. Jude researchers and health care providers—miraculous. 

The candle flickers

Long before she ever held an Olympic torch, Katelyn Atwell had acquired the discipline and tenacious spirit of an athlete. A competitive swimmer, she spent countless hours in the pool, testing her limits. That same sense of determination also pervaded other aspects of Katelyn’s life. When her family moved from Florida to Tennessee, the outgoing youngster joined the band and the flag squad at her new school, and helped lead a children’s choir at church. Life was good; life was busy. Then her back began to hurt, and Katelyn went to the doctor. Soon the diagnosis came back: acute lymphoblastic leukemia.

In June of 1999, Katelyn began treatment at St. Jude Children’s Research Hospital. But after two weeks of chemotherapy, she complained of a chill. Immediately, her physician prescribed three antibiotics and admitted her to the hospital. “We rarely see meningitis in our patients, and even if it were meningitis, with three antibiotics, she should have been covered,” recalls Jeffrey Rubnitz, MD, of Hematology-Oncology. But then Katelyn started having seizures. The doctors found that she had Bacillus cereus meningitis, an infection so rare that only six cases had been documented in medical literature. Two days later, she was critically ill on a ventilator. She slipped into a coma. Everyone thought she was going to die.

Everyone except Katelyn’s mother, father and sister. During the five months Katelyn spent in the Intensive Care Unit (ICU), Katelyn’s mother never left her side, constantly optimistic and determined, clinging to her faith in the midst of staggering odds. “I think Katelyn’s mom almost willed her to live,” observes Robert Tamburro, MD. “A lot of times, people are unrealistic or irrational, and act upbeat because they haven’t really accepted how serious the situation is. That was never the case with Katelyn’s family. They said, ‘We’re going to stick with our faith and be as upbeat and positive for Katelyn as we can, because that’s what she’s going to need.’”

Sharon watched as scientists and clinicians joined forces to fight for Katelyn’s life. “The people at this hospital don’t accept defeat gracefully,” Sharon says. “When you present them with challenges, they really go to battle. It was a hospital-wide effort. Our doctors would be beeped by scientists in the Danny Thomas Research Tower, who would say, ‘I’ve been researching Kate’s situation. Have you tried this or that?’ Every department was doing everything they possibly could—researching and calling other hospitals to see if they could find anyone who had ever had this infection before.”

At one point, a prominent neurosurgeon arrived to provide a second opinion on Katelyn’s condition. “He looked at the diagnosis, he saw the type of infection that she had, he looked at the CAT scan, and he told me, ‘You might as well kiss this baby goodbye and call your family in, because there is no hope for her,’” Sharon recalls. “I believe with all my heart that if she had been in any other hospital than St. Jude, they would have taken his word for it, and Katelyn would have passed away. But the folks at St. Jude said, ‘You know, we’re not ready to believe that yet,’ and they called in someone else.”

Because of increased pressure within her brain, Katelyn underwent dozens of operations to insert drains, shunts and remove cysts. The trauma to her brain prompted what doctors called autonomic storms. Her temperature would plateau at 108 or 109 degrees for more than 12 hours. Her heart rate would skyrocket, and her blood pressure would increase to 200/185. The storms would abate for a couple of hours, and then they would resume with increased ferocity. “We didn’t think she was going to make it,” says ICU nurse Peggy Derringer. “And we thought that if she did make it, the damage to her brain would be so profound that her quality of life would be terrible.” But Katelyn did not die. She remained in a coma for more than a year.

Fanning the flame

During that year, Sharon and Ray Atwell and their older daughter, Crystal, prayed relentlessly and celebrated each achievement, no matter how small. They leaned on their faith, friends and family for support. Through the Internet, people around the world heard about Katelyn and began to pray for her. Sharon sent out regular “Kate Update” e-mails to an ever-increasing number of “prayer warriors.” A huge map on the wall of Katelyn’s room marked the cities and towns where people were praying for her. “I wanted Katelyn to know when she woke up how many people prayed for her to be well,” explains Sharon. 

The medical staff taking care of Katelyn were astonished by her family’s unwavering optimism and faith. “There was always a family member at Katelyn’s bedside, encouraging her, playing her favorite music, doing passive range-of-motion exercises,” recalls Stephen Thompson, MD.

Katelyn’s caregivers received support, as well. “Whenever I’d operate on Katelyn, I’d get e-mails literally from all over the country—people saying, ‘We’re praying for you; we’re praying for Katelyn,’” recalls Stephanie Einhaus, MD. “It was incredible.”

Sharon compares Katelyn’s battle with Bacillus cereus meningitis to a roller coaster ride. As soon as doctors would rectify one problem, another would arise. She would begin to rally and then she would have a stroke.
Or she would get a viral infection. Or she would have a seizure. But a year into Katelyn’s coma, her condition began to improve. Although she was blind and nonverbal, she began to respond to her family with hand squeezes, blinks or nods. 

In a June 2000 “Kate Update,” Sharon wrote, “It was one year ago today that the Atwell family got on this roller coaster ride called the cancer express. It has more corkscrew turns, downward spirals, upside down turns, only to be shot straight up into the heavens or to find yourself plummeting down into the bowels of the earth. For a very long time I prayed every day for God to get us to the exit ramp, but we never did see it….We are now on a very smooth ride, every once in a while a whoop-tee-doo, but for the most part just an enjoyable, slow ride going forward."

Dividing light from darkness

One evening, four months after writing that e-mail, Sharon was tucking Katelyn into bed. After a goodnight kiss, she said, “I love you, Katelyn.” As she backed away, Sharon saw her daughter silently mouth the words “I love you, too.” Within days, Katelyn began to lip sync her favorite songs. In November of that year, her sight suddenly returned. In December, she began eating for the first time in a year and a half. Slowly, steadily, Katelyn began to surface.

“I remember the first time she came to my office after she woke up,” says Einhaus, who performed dozens of operations on Katelyn’s brain. “She had started to communicate. I cried; it touched me that much. Many neurosurgeons had told me, ‘You’re wasting your time operating on her. She’s not going to wake up.’ But we just plugged along, hoping that she might. Then all of a sudden she woke up. It was a bit miraculous, to be perfectly honest.”

Everyone who took care of Katelyn was astounded at her recovery. “You know, the word ‘miracle’ is sometimes thrown around too freely in the world of medicine,” observes Tamburro. “But certainly with Katelyn, I think it’s appropriately used. To see the way she’s progressing is nothing short of miraculous.”

Thompson, who spent many nights sleeping outside Katelyn’s door in the ICU, keeps a picture of Katelyn on his desk. “This is probably one of the most satisfying recoveries I’ve ever seen in a patient I’ve cared for,” he says.  

“Hers is truly a miraculous recovery.” Derringer, who has worked as an ICU nurse for 12 years, says the faith of Katelyn and her family, combined with aggressive medical care, made the difference. “She’s one of our true, bonafide, no-way-she-should-be-here miracles. And that’s the truth,” Derringer says. 

As Katelyn began to surface, she quickly regained her competitive spirit and sense of humor. The rehabilitation specialists who had worked tirelessly with Katelyn during her coma now began to help her relearn the most basic tasks. With the daily help of physical, occupational and speech therapists, she began to make progress. She began to sit alone, then talk, then stand. In September, she had her last dose of chemotherapy. Two months later, she walked with her walker from Rehabilitation Services to the St. Jude reception desk, as St. Jude staff and patients lined the corridors and filled the lobby, cheering.

On Friday, December 14, 2001, Katelyn carried a flaming torch through the streets of Memphis.

“I stood at the corner of the street, watching this huge entourage of people coming my way,” wrote Sharon in a “Kate Update.” “I stood there praising God for how great he truly is. Who would have ever thought two years ago that she would be coming toward her mother with torch in hand, waving at everyone with the biggest smile possible on her face? A vision of her in ICU with all the tubes and machines popped into my head, and then I looked at her coming toward me, and I almost lost it.”

Katelyn seems unaware that she has become a symbol of hope and faith to others. “Every time I see Katie, my heart just swells,” says Derringer. “Doctors, nurses, respiratory therapists, we all light up when we see Katie. When she walks into the ICU, we look up and say, ‘Ah! We’re so glad you’re here!’ She gives us inspiration, and she lifts our spirits."

Let your light shine

The silent girl with the blank stare has evolved into a vivacious teenager who greets everyone she meets with a broad smile and enthusiastic greeting. At any moment, Katelyn might break into a praise song, a joke or a pithy commentary. “There’s me as a body-woddy,” says Katelyn, as she marvels at the emaciated stranger depicted in her mother’s photo album. “I don’t remember diddly squat. All I remember is loud, annoying beeps.”

Katelyn doesn’t mourn about the time she has lost; she is too busy setting, meeting and exceeding goals. Today she is dressed for physical therapy in a navy sweatshirt, Florida Gators sweat pants and blue glitter nail polish. Sunlight streams through the windows of Rehabilitation Services, falling in a bright strip across the linoleum floor. For Katelyn, walking is still hard work, a task that demands intense concentration. Brow furrowed, head bowed, muscles quivering, she takes one step, a deep breath, then another.

“C’mon, girly girl! You can do it!” urges Sharon. Panting, Katelyn steps into the light, moving forward, ever forward. Instilled with determination, upheld by faith and propelled by the sheer power of a mother’s love.

Reprinted from Promise magazine, spring 2002