Daily Press

Taylor-made hope

GIRL'S STRUGGLE INSPIRED THOUSANDS

The story of a Hampton 10-year-old who fought a deadly brain tumor touched people across the United States and world.

BY MONIQUE ANGLE
247-4731

Published May 12, 2004

HAMPTON -- Taylor Marie Adkins spent her short life trying to avoid being in the spotlight. She shied away from too much attention, embarrassed when friends and family doted on her.

But 10-year-old Taylor's smile ended up drawing the attention of thousands of people across the world as she battled for her life against a large, fast-growing brain tumor.

One of her teachers set up a Web site so people could check on her condition and offer words of encouragement. Aided by word of mouth and a newspaper article about her, word of the Web site spread.

People from as far away as Japan and Switzerland - more than 75,000 hits in all - dropped by www.amiraclefortaylor.com.

On April 30, the Hampton fifth-grader died.

As she fought the tumor, thousands of greetings poured into the site, with prayers, thoughts and messages of empathy.

"Although we have never met you, Taylor, we have been touched by you, through the many people who love you," a Hampton reader said on the site. "I know you are a special gift from God."

Another said, "It has already been said that she is running, playing, and you know, I can see her sitting in God's lap telling jokes and playing games! I never knew Taylor or the family, but you have profoundly affected my walk with Christ. That was her purpose, after all." Before the brain tumor, Taylor never had any health problems, except for a few allergies. Around Thanksgiving of 2002, she started having headaches and blackouts. Doctors were baffled.

In December of that year, after stumbling off a school bus at Gloria Dei Lutheran School, Taylor went into the hospital.

Doctors thought she had a brain hemorrhage and said she wouldn't make it through the night. About three months later, they diagnosed a fast-growing tumor.

"She hit (the tumor) head on," said her mother, Amy Thorstad. "She always fought with a sense of humor. She was always trying to make someone laugh."

Mary Capone, her teacher, created the Web site shortly after Taylor got sick. Capone said Taylor's mom didn't want people to forget to pray for Taylor.

A fan Web site for her favorite band, Creed, posted a link to Taylor's site and asked fans to send Taylor cards. She got dozens of care packages from across the country, with Creed CDs, T-shirts and other mementos collected by fans.

Taylor underwent chemotherapy and radiation, and despite her weakness, she wanted to make it to the fifth grade.

"She always wanted her backpack," said her father, Keith Adkins, noting that his little one was a spelling whiz.

"She did homework on the way to Duke (for treatment)," added Paula Adkins, Taylor's stepmother.

She passed the fourth grade and moved on to the fifth grade.

In March, the day after she attended a school fund-raiser, she woke up with a strange cough. A bladder infection had struck her body, and the medication to fight the tumor had left her body exhausted. The infection spread to her lungs, and she had to be put on a ventilator.

She couldn't talk with the breathing tube but gave her friends and family waves and thumbs up.

Taylor's life was celebrated last week at a memorial service attended by hundreds of Hampton friends and relatives, who gave the family photo frames to highlight Taylor's life. A week after the service, the photos are stacked in high piles on a pool table in Thorstad's home.

There's a picture with Taylor dressed in a pink Barbie pullover, with a matching pink helmet for rollerblading. Then, there's Taylor dancing with a bright red feather boa, and one where she is posing maturely for a school photo with a sparkly necklace.

"She danced through her whole life," her grandmother Jean Lawrence said.

There are tons of memorial flowers scattered through Thorstad's home, sent to the family after Taylor's death. Many of the arrangements are in hues of purple, a prominent color on Taylor's Web site.

And there are the butterfly decorations.

On her Web site, Taylor is smiling, surrounded by butterflies. Somehow, the butterfly became her symbol.

So when she died, someone donated a butterfly bush in Taylor's memory. Another family donated a butterfly house. And friends of Paula Adkins ordered butterflies, which were released in a garden at Taylor's beloved school.

But as all of the butterflies flew away, one stayed for a while. It found a purple flower to lounge on. Family and friends thought it was a miracle, and everyone scattered to find a camera to photograph it.

By the time the camera was found 10 minutes later, the butterfly was still waiting.

"I thought, Taylor's probably saying, 'Come on Ma,'" Thorstad said, giggling.

After the butterfly was photographed, it flew away.

The butterfly bush and house will go in the school's courtyard, just a few feet from where Taylor first collapsed as she left the school bus.

"She was our miracle," Thorstad said. "We want to plant in the middle in the courtyard, not as something sad, but as a celebration of a new life."

Hampton girl copes with growing tumor

By Peter Hull
Daily Press

Published August 12, 2003

HAMPTON -- Nine-year-old Taylor Adkins is tired. Tired of people staring and pointing fingers. Tired of the whispers behind cupped hands.

"What's the matter with her?"

"Why does she look like that?"

Taylor has a brain tumor - now the size of an egg - that continues to double in size every three weeks. The tumor sits on her brain stem, affecting the part of her brain that controls movement. By December she lost the ability to walk, and by June her "right hand has turned to junk," she said.

Side effects from a cocktail of drugs have caused considerable weight gain from an increased appetite and puffing of the cheeks and neck.

For now, Taylor's family and friends are concentrating on her quality of life, not quantity. With the help of the Make-A-Wish Foundation, Taylor hopes to travel to Disney World with her family and to meet her hero, Mark Tremonti, guitarist with the rock band Creed.

Her fingernails are painted white and the letters C-R-E-E-D F-R-E-A-K adorn a finger each. And for now, Taylor's on a high after she received a telephone call from Tremonti.

Like many children her age, she enjoys trips to the mall with her friends or a day out with her family. But after a recent visit to a local theme park, she decided it was time to speak up for herself.

"I don't like (the theme park) anymore," she said. "I don't like the kids there. Everywhere we went, the kids were looking at me, and I don't like that. I'm not really different. It's too many people. I'd rather them not look at all."

And thanks to Mary Capone, one of Taylor's teachers at Gloria Dei Lutheran School in Hampton, Taylor can keep in touch with whomever she wants and without a single stare or pointed finger.

After Taylor fell ill, Capone said she was inundated with inquiries about her progress. As a computer teacher at Gloria Dei, Capone decided to start a Web site where people can read updates of her treatment and post messages of support.

"People kept saying, 'We need a miracle.' So I bought the domain, amiraclefortaylor. com, and it just snowballed," Capone said. Now, in addition to regular updates, Taylor's site sells T-shirts to help promote her cause.

Originally, the shirts were to read, "I've got a brain tumor, what's your problem?" said Amy Adkins, Taylor's mother. But Taylor said it's not something they should laugh at. So the shirts simply say, "Say a prayer for Taylor."

Capone was at the school during the afternoon of Dec. 13, 2002, when Taylor stumbled off the school bus complaining of a headache. Suspecting a brain hemorrhage, doctors told her parents she'd probably not make it through the night, but after a series of operations she was able to return home in February. But within a week she was back in the hospital, and after a brain scan, her doctors found a tumor.

There were five possibilities, doctors told Taylor's family. Four bad, one really bad. On March 13, Taylor and her family received the news they feared the most: Taylor had the worst, most aggressive tumor.

Further surgery and an eight-week stay at the $9,000-a-day Children's National Medical Center in Washington, D.C., have failed to halt the tumor's growth.

"The doctors said it was like taking a trip without a road map," Capone said. "They didn't know where they were going."

Doctors at Duke University Medical Center in Durham, N.C., said they were unable to help, so Taylor and her family continue to search for a cure.

"At this stage they're trying anything and everything," Capone said. "That's all they've got left to do."

Now Taylor is on a $4,600-a-month drug cocktail designed to inhibit the tumor's growth. And while her family considers their options, Taylor continues to keep up to date with her schoolwork.

She's still an honor roll student and hopes to be back for the start of the school year. Since losing the use of her right hand, the hand she used to write with, she's taught herself to write with her left hand.

Gloria Dei ends at fifth grade, and even if she can only attend on a part-time basis, Taylor hopes to graduate with the rest of the class of 2004.

"I don't know why this happened to Taylor, but I thank God every day that we've got through it," Amy said. "I wish I knew how she stayed so happy. If I did, I'd patent it."

Peter Hull can be reached at 247-4731 or by e-mail at phull@dailypress.com