Running for Kayla
By Liane Gouthro

At mile 16, the whole thing almost came to an end. Sandy Aiello did not think she could run one more step. She was ready to stop, to sit down right then and there, in the middle of the 2001 Boston Marathon, with thousands of runners surrounding her. Those behind would simply have to run around her as she sat on the pavement, wondering how, at age 39, she’d even made it this far.

But she didn’t stop. She knew her family was waiting, about four miles ahead. Four miles of hills, Heartbreak Hill, but she knew she could do it. She had to see her family. So she didn’t sit down and let her aching body be carried off the course by the paramedics working the sidelines. She let the thought of seeing her family carry her.

And when she saw them, she didn’t look like the woman who wanted to curl up on the street less than an hour earlier. Her bright green t-shirt was stained with sweat, much of it already dried from the hours she’d been running, and her short curly brown hair was matted to her head. Her race badge, bearing the number 16142, was crinkled and hanging slightly askew. But a huge smile lit up her face when she saw her husband Chucky and daughter Mandy, her parents and her in-laws and brothers and sisters all cheering her on. She jumped in the air, pumping both arms overhead and almost skipped to the sideline.

But after slowing down briefly to see their faces, Sandy couldn’t stop. She was far from the finish line. The energy she’d gained from the sight of her family carried her almost painlessly for the next four miles. She ran uphill through Newton, downhill past Boston College and into Brookline. She ran down Beacon Street, sensing that the end of the race was near.

Then her body gave out. She couldn’t feel her legs or her feet. She didn’t know where she was or what she was doing. She didn’t think she could finish. So she turned to another member of her family for help, the one member who wasn’t on the sidelines to cheer her on, but the one who had been with her the entire day.

Sandy looked to the sky and asked her daughter Kayla for strength. Kayla had passed away the previous May, eleven months earlier, after a two-year battle with cancer. She was only five when she died, but Sandy had learned from her strength.

“She was never sick, through all the chemo. No matter what chemicals they were pumping into her body, she was never sick. She’d sit there in the hospital with that tube running into her arm, and she’d be playing, singing, coloring. Her roommate would be sick as a dog, but not Kayla.

“One time, she was home from the hospital and we thought she was doing really well, and the doctor called with her blood counts. Her levels were so bad that we needed to bring her in right away and the doctor was worried that she was too sick for us to handle at home. He asked if she was in bed or throwing up and when I told him she was outside riding her bike, he couldn’t believe me. That’s just the kind of girl she was,” Sandy says later, reflecting on the marathon.

“So at mile 24, I thought about that, about the miracle that she was. And that’s how I finished.”

Four hours, 32 minutes and 39 seconds after she crossed the starting line, Sandy finished her first—and likely her last—Boston Marathon. Despite the pain in her body, pain that would allow her to only walk sideways for the next two days, she was ecstatic. After the marathon, Sandy was happier than she’d been since Kayla’s death, possibly happier than she’d been since before Kayla got sick.

*****

Sandy had never been a distance runner. In 1998, when her two daughters were healthy, she didn’t have the time to think about running marathons. She was busy changing diapers and coordinating carpools. She looked like any other working mom—brown hair cut short, for practical reasons more than for style. Her large brown eyes were warm and caring, a window to her emotions. Her face was creased with lines, but she didn’t hide them with makeup. She was too busy, her days were kept full with the business of ordinary life. Until everything changed.

In July 1998, Sandy found out that her oldest daughter, three years old at the time, had cancer. She had noticed a lump in Kayla’s stomach, and thinking it was probably a hernia, no cause for alarm, brought her to the doctor. They found out that the lump was a cancerous tumor, a cancer that had already spread to her kidney.

The Aiellos, Sandy, Chucky, and their younger daughter Mandy, as well as their extended family, spent the next two years in and out of hospitals, but always believing that Kayla would recover. Her disease went into remission twice, but always came back. It returned for good at the end of 1999, and the news came as a shock.

“We thought the disease was gone, that Kayla had beaten it,” Sandy says.

Kayla had just turned five and the family had celebrated her October birthday with a trip to Disney World. Her hair was growing back, and for the first time she was healthy enough to attend school, a pre-school near her parent’s home in Waltham. She was strong enough to serve as a cheerleading mascot for the local Pop Warner football team.

A photo taken that fall shows her smiling, with a thick head of hair just long enough to curl around her face, wearing her football sweater and pressing her red pom-poms to her hips. At the time, Sandy and Chucky thought the photo showed their healthy daughter, someone who had conquered cancer. They never dreamed this would be the picture on the cover of the program handed out at Kayla’s funeral mass just months later.

Kayla endured another round of chemotherapy, but to no avail. In the spring of 2000, the doctors informed Sandy and Chucky that there was nothing further that could be done to save their daughter. They decided to take Kayla home to finish out her life.

It was during Kayla’s final bout with the cancer that Sandy began running. Kayla spent her days on the couch in the family, connected to a morphine pump. The small house was full almost every day, with friends and family stopping by to check on Kayla and Sandy. From the kitchen, just down the short hall, Sandy could see her daughter’s blankets, the small shape that lay underneath them.

Anywhere she went in the house she could still feel Kayla’s presence. Upstairs in her bedroom, she could hear the low voices coming from the family room. She could hear the constant beeping of Kayla’s monitors and machines. To escape, she began walking. She was seeking some sort of shelter, a refuge from the nightmare in her home. Her anger drove her to run. Overcome by anger and sadness, she simply ran until her energy was gone, until she didn’t have the strength to feel anything.

Kayla died at home on May 26, 2000, surrounded by her family. She was at home for nine weeks before she passed away. On her last day, she asked Sandy to gather the entire family.

“She waited until everyone was around, her grandparents, her aunts and uncles, all her cousins. Then she looked at me and said, ‘I love you, Mom’ and closed her eyes for good,” Sandy recalls.

To deal with her grief, Sandy ran.

And ran.

And ran.

“It was either that or drink,” she says.

*****

Sandy ran for months, running circles around her neighborhood, pounding tracks into the streets of Waltham. Running aimlessly. Running to escape. Running to forget.
She realized she could tire her body, but not her mind, and she knew she needed a mission. Her mission, of course, was Kayla. In October 2000, Sandy decided her mission would also be the Boston Marathon. A family friend had run the year before in Kayla’s name to raise money for the children’s cancer unit at Massachusetts General Hospital, where Kayla had been treated. Now, after Kayla’s death Sandy decided that it was her turn. She enlisted the help of Paul Molinari, a friend of her husband’s, who had run marathons before. He coached her on long-distance training runs and ran the entire marathon at her side, without an official number of his own.

From October to April 2001, Sandy raised almost $30,000 for Mass General. She thought of the marathon as a way of saying goodbye to the hospital and to its staff who had been Kayla’s constant companions for much of her life. Crossing the finish line was the end of that chapter of her life.

But Sandy knew it wasn’t the end of her grief, and to her surprise, just days after the marathon, she felt as low as she ever had in all the days of Kayla’s illness. Her body felt fine physically, but emotionally, she crashed. She was unable to get out of bed, uninterested in work or family. She realized that she needed another project, a way to keep Kayla’s memory alive.

That’s when Sandy became a parent advocate for the Hospice for Kids program at Waltham’s HealthCare Dimension, the group she credits with allowing Kayla to die at home, with all of her family around her. Sandy began speaking to parents and to doctors about the benefits of sending terminally ill children home from the hospital and realized that she found solace in telling Kayla’s story. She realized that the more she talked about Kayla, the better she felt.
She told Kayla’s story to the Massachusetts State Legislature, speaking about the insurance reforms that were needed to make home hospice care a viable option for more patients. She told Kayla’s story to any reporter that called, and there were quite a few.

And she told Kayla’s story to her friend Steve Whittemore, though she didn’t have to tell him much. He had been with her and Chucky through much of it. Steve had known Sandy and Chucky since high school, when they all attended Watertown High 20 years earlier.

A few months after Sandy finished her marathon, Whittemore was sitting in his Belmont home surfing the Internet. When he came across a Web site soliciting nominations for Olympic torchbearers, he immediately thought of Sandy.

“They wanted to know about someone who inspired you,” he said recently. “The next day, I sat down and wrote the hundred word essay, but I could have gone out a lot longer.”

He didn’t need to; in early September of last year, Sandy was notified that she had been selected to carry the Olympic torch when it traveled through Massachusetts in December.

*****

The air was frigid and the sky was still black when Sandy’s alarm started buzzing on December 28, 2001. 4:00 am, the red lights flashed. Time to get up. Sandy wanted to stay in the warmth of her bed, but she got up and found the white running suit the Olympic committee had given her. She laced up her running shoes, grabbed her hat and gloves and drove herself to the Copley Marriott hotel in Boston.

At 5 am, she sat down for coffee with a woman named Louise, the first of the 12 other torchbearers that she would meet that day. Over coffee they traded stories; Sandy told Louise about Kayla. Then Louise, who was 80 years old, told Sandy about her daughter who had been kidnapped, raped and murdered several years earlier in Arizona. Louise had started a road race in her daughter’s name, and still ran regularly. In fact, she told Sandy, whenever she entered a road race, which she did a couple times a year, she was likely to finish first in her age category, because she was usually the only runner in that group.

After they finished their coffee, Louise and Sandy met the rest of the torchbearers. They gathered in a group and shared their stories. Among them was Lisa Hughes, a newscaster for a Boston TV station, who was running in memory of someone who had died on September 11. There was also a 19-year-old mother who had started a program to keep kids off the streets and a man who had just learned how to walk again after battling a cancerous tumor that had crushed his spine.

Together, they sat in the hotel’s restaurant that morning, before the sun had risen, and watched a video that explained the history and significance of the Olympic torch. They learned how the torch had traveled from Greece and the route it had taken to reach Boston. And that’s when the magnitude of the day really began to sink in for Sandy.
Awed by the task ahead of her, she climbed into a van with the rest of the torchbearers and watched as the first seven men and women carried the torch their two-tenths of a mile. She watched the man with cancer, a man whose name she would not remember, but whose strength she would recall with tears in her eyes, slowly walked his leg of the relay.

And then, at 7:15 am, it was her turn. The relay had taken them to Charlestown at this point, and Sandy would carry the torch within the sight of the USS Constitution. Nervously, she climbed from the van and grasped the 33-inch torch, a mass of glass and silver nearly half as tall as her petite frame. As soon as she began jogging, she forgot about everything else. She didn’t feel the artic chill in the air or hear the cheers from the crowd along the road.

Right now, at this moment, I am the only person in the whole world carrying this torch, she thought. Me, Sandy, she thought, carrying the Olympic torch.

Looking up at the flame, she began to notice the scenery. She saw a crew of Big Dig workers and nearly began to cry herself when she realized that they had paused in their work to watch her, and that one of them was actually wiping away a tear. She saw Mandy and Chucky cheering her on, standing near almost 60 of her friends and family members who had made the early morning trip to Charlestown. Chucky had propped Mandy up on his shoulders to get a better look at her mom, though Mandy’s face was barely visible through her tightly wound scarf and bright pink hat. Chucky, too, had pulled his parka up near his face, and pulled his black knit Patriots cap down near his eyes. That’s how Sandy knew it was cold, though she never felt the air temperature.

“It was the most incredible three hours of my life,” Sandy says. Although the torch relay lifted her spirits even higher than the marathon, Sandy didn’t come crashing down afterwards. Instead, she focused her energy on her newest project, another way to keep her daughter’s memory alive: the 5-Kayla.
The 5-Kayla was the road race Sandy decided to found to raise money for the Hospice for Kids program, where Sandy continued to work as a parent advocate. She had also returned to her full-time job as a manager at Lightbridge Technologies in Burlington, but her energy and her emotions were really focused on her work with Hospice for Kids.
The 5-Kayla will be run for the first time this coming Mother’s Day, May 12, and will culminate with a family festival in the center of town. Before the 5K race, there will be a one-mile run-walk race for the kids, the Mile Mandy.

“I need to keep both my daughters involved,” Sandy explains. “I can’t ignore Mandy in my efforts to keep Kayla’s memory alive.”

*****

Sandy looked up at the crowd and walked nervously to the center of the parquet floor. 16,000 faces looked down at her from all over the Fleet Center. The raucous crowd was interested in the basketball game between the Celtics and the Knicks, interested in getting their faces on the giant Jumbotron screen hanging from the ceiling. Many weren’t even paying attention to the small woman who stood at center court, holding tightly on to her Olympic torch.

A few weeks earlier, in the beginning of January, Sandy had received a call from the Boston Celtics’ press office. They had heard about the 5-Kayla and Sandy’s efforts to promote the race, and they wanted to honor Sandy during an upcoming game as one of the team’s “Heroes Among Us”, a program was designed to recognize local citizens. Sandy jumped at the offer. Chucky had been a season ticket holder since 1976, and she knew he’d be thrilled at the chance to sit courtside and meet some of the players.
So on January 16, 2002, Sandy and Chucky drove into the city. Mandy had opted to stay home with a sitter, not interested in watching a basketball game. They were taken into the team’s business office, where they sat at a large table made out of the same parquet used on the Fleet Center floor.

Chucky went into the men’s room and laughed at the door frames that were nine feet high to accommodate the players. They walked out through the tunnels used by the team, right onto the parquet floor. Chucky shook hands with Paul Pierce and Antoine Walker and watched them warm up. Sandy posed for a publicity photo with Paul Pierce and Marcus Camby. The very top of her curly hair barely reached to the middle of their chests, but her huge smile was as big as either of theirs.

Then the game began, and Sandy and Chucky watched the Celtics take an early lead. In the second time out of the second quarter, the announcer walked to the center of the floor to introduce Sandy to the crowd. So there she stood, looking at all the faces, unable to believe that anyone would be interested in her story.

“We have a very special woman here with us tonight,” he said, his voice barely discernable above the noisy crowd. And then he began to tell Sandy’s story as she stood by his side. Wearing jeans and her Olympic warm-up jacket, she looked tiny in the center of the floor. As he told the crowd about Kayla’s death and Sandy’s running, more and more people began to listen. The crowd quieted down slightly as he explained how Sandy had carried the Olympic torch and how she was founding a road race in her daughter’s memory. When he was done, the applause began. Sandy stood there on the floor, taking it all in, looking up as the crowd began to stand and cheer, a cheer that spread all the way to the very last row in the top of the arena.

The Celtics went on the beat the Knicks and the crowd went home happy. But had the Celtics lost, Sandy and Chucky would have still gone home glowing. The night was simply another extraordinary event in their lives, events that had happening almost regularly since they had lost their first daughter.

They would give up all of it—the awards and honors, the Olympic torch and the handshake with Paul Pierce—to get Kayla back, but that, of course, is not possible. So they go on with their lives as best they can, with Sandy stopping to tell Kayla all the details.

Every day, Sandy visits Kayla’s grave, just a short walk from their home in Waltham. The cemetery is visible from their driveway, and Sandy stops by there every morning at the end of her run. She sits in front of Kayla’s pink tombstone, with its design, hand-carved by an artist in New York. She looks at the sleeping angel, its wings drawn using dental instruments, and tells Kayla about everything. About the marathon and the Olympic torch and the Celtics game. About everyday events. About Mandy’s accomplishments at school, about Miss Caroline, who was Kayla’s teacher before she died and who now teaches Mandy. She tells her how much they all miss her, and she goes home. Because while she strives to keep Kayla’s memory alive, she still has a family who needs her and a job that she has to go to everyday.

********

It is February 2002, almost two years after Kayla’s death. Sandy pulls her blue Chevy into her driveway, coming home from another day at the office. The lines on her face are deeper these days, and her warm brown eyes are nearly always moist with a tear that threatens to spill over at any minute. Sandy finds that she isn’t getting as much work done these days, but since Kayla’s illness her heart has never really been fully into her job at Lightbridge.

She often finds herself sitting at her desk, day dreaming about what could have been. About Kayla, who should have lived far longer than her five years. About the life that she would have had. She looks at a picture of her daughter, smiling broadly, gripping tightly onto those pom-poms that she loved, wearing the cheerleading sweater she was so proud of. She thinks about how Kayla would have looked in high school, perhaps she would have been a cheerleader there, too. She thinks about first dates that will never happen, mundane fights over curfews and chores that she’ll never have. She thinks about a wedding that could have been, how happy she could have been watching her daughter walk down the aisle.

But she puts those thoughts aside, and goes about the day-to-day tasks of her job, and then gets in her car and drives home. And this day, she sits in her driveway, thinking again about that future that could have been, that should have been, and then thinks about Mandy. Her precious Mandy, now five, the same age Kayla was when she died. But Mandy is healthy, Sandy reminds herself, as a fleeting fear grips her. She worries that Mandy, too, will become ill and will be taken away. But that thought is brief and her worry then turns to herself. Sitting in her car, she is frozen with the fear that something could happen to her, that she will get cancer and die, that she will be in an accident and will leave Mandy all alone.

She thinks about Mandy as she walks to her door, looking at her tidy beige house, the house that has seen more than its share of sadness. Walking inside, she looks at the oversized kitchen table, where just a few weeks ago, Mandy and a friend were playing house.

The two girls had set up their imaginary world under the table, where they sat and talked about going to school and to work. They cooked an imaginary dinner in their imaginary kitchen. Then they went to a wake. The two girls walked down the hall into the den, the same den where Kayla had died while Mandy watched, and went to the wake. They never said whose wake it was, but walking back to the kitchen, to their imaginary house, Mandy talked about how nice the wake had been. “Didn’t she look lovely?” she asked her friend. “So beautiful. I hope you remembered to say goodbye.”

Sandy thinks about all the goodbyes that Mandy has had to say—to grandparents, great grandparents, and a sister—even though she has yet to fully comprehend the meaning of death. If you ask her about Kayla, Mandy will say that she has a sister who lives in heaven now. Like the rest of the family, she talks about Kayla as if she is here in this house, maybe just upstairs sleeping. Kayla’s presence is never far away.
Sandy thinks about Mandy and knows that not everything has been taken from her. She will see first dates and broken hearts and silly teenage arguments. But not yet. Mandy is only five, and though she may have seen more than she should, she is still young.

It is almost Valentine’s Day and Mandy wants to make a card for her dad. Sandy gets out coloring paper and markers and helps Mandy spell out the hard words. Chucky sits down the hall in the den.

“Dad, you can’t come out here. Don’t come out here! Don’t come out!” Mandy shrieks, giggling, though her father shows no signs of moving.

“Okay, Mandy doll, you twisted my arm. I’ll just stay here in my recliner all night,” he answers back, feigning disappointment.

“How do you spell Dad?” Mandy whispers to her mom, though her voice clearly carries to the den. “How do you spell Valentine?”
A loud burst of laughter erupts from the den.

“What’s so funny, Chucky?” Sandy calls.
“That Drew Carey, he just kills me,” Chucky answers.

Sandy shakes her head, but smiles. She looks down at her daughter and knows that this is her life now. She has a long road ahead, and it won’t be easy.

“My life is like a roller coaster, it’s up one day and down the next,” she says later that night. “I know that I still have a lot of hills to climb, but as time goes on, they get less and less steep.”

She knows she has many hills in front of her, but she’s already planning ways to conquer them. Sandy is busy planning the upcoming 5-Kayla road race, which she hopes will become an annual event. She is thinking about running next year’s Chicago Marathon. She doesn’t want to run Boston again—she wants the memory she has of that experience to stay unaltered—but she knows she needs another challenge. Another task, another project, another story to tell Kayla.