Caitlin's song
She was a happy little girl. Soon she would start kindergarten. Then one day ...
By ANNYSA JOHNSON
Oct. 18, 2003

She is going on a journey of changing forms. Human people call it dying. But the time will come when we will recognize her in another way. Maybe it will be in a song from the wind. Maybe it will be in the dance of the butterflies.

- "Gentle Willow"
It's hard to imagine Caitlin Martens will be so subtle.

Remembering Caitlin


Photo/Family
Caitlin Martens and her dad, John, take a spin on a personal watercraft at the family's lake cottage in Brillion. It was at the cottage in late May that Caitlin first showed signs that something was amiss. An MRI would reveal that Caitlin had a brain tumor.



Photo/Jack Orton
John and Peggy Martens talk about their daughter Caitlin, who died this month from a brain tumor. The Martenses share the sofa in their West Allis home with Mickey Mouse dolls that belong to Caitlin and her sister, Mary, from their Make-A-Wish Foundation trip to Disney World.



Photo/Family
Caitlin Martens (left) and her twin sister, Mary, at home on the first day of kindergarten.


Quotable

She'd pick up her bad hand and wrap those little fingers around it and say her prayer. And I'd think: Oh God, why are you doing this to us?

- Peggy Martens,
Caitlin's mother


Artwork/Caitlin's classmate
Caitlin's classmates at Irving Elementary School in West Allis sent her cards while she was hospitalized.



Artwork/Rahim Babwari
A card from Rahim Babwari, who doted on her. She was his best friend, he'd say. If she was out of school, he guarded her favorite floor puzzle like a sentry.


Care For Caitlin

The Martens' friends will host a benefit from 1 to 8 p.m. Oct. 26 at Matty's Bar & Grille, 14460 W. College Ave., New Berlin. Tickets are $30 in advance, $35 at the door. For more information, call (414) 349-8437.

Just 5, she loved tearing up the lake on a Jet Ski with her dad and jumping off the side of the pier on the family's annual trip up north. She loved the color purple and her dog Murphy and puzzles and ice cream and crafts - anything with beads and glitter. As her mother said, she was "just a happy little girl who lived."

And died. From a tumor that invaded her brain.

The funeral was Tuesday.

The people who helped care for Caitlin at Children's Hospital of Wisconsin, who see life and death more than most, say a child's death is the one thing no one ever gets used to.

It's one of life's gravest injustices. And it often happens with little more acknowledgment - beyond the heartache of family and friends - than a paragraph in the obituaries.

This is one child's story.

Peggy Lyons and John Martens were high school sweethearts, who started dating on his 16th birthday. So when they married 10 years later, theWest Allis couple didn't wait long to start a family.

Mary Katherine and Caitlin Anne were born on March 27, 1998. It was Great-grandpa Lyons' birthday, and he always considered them his present. They loved hiding his cane or pulling his hair from behind a recliner.

Like many twins, they dressed alike - same outfit, different colors - but their personalities were distinct. Mary is more sensitive, temperamental, easier to cry; Caitlin was no-nonsense and to the point, often punctuating her sister's outbursts with an eye roll and an "Oh, brother."

Many mornings, Mary would rush to Caitlin and smother her with kisses. Caitlin would feign annoyance and push her away.

Still, the girls had a closeness that only twins know.

"No matter where you took them," Peggy Martens said, "someone would always say, 'Oh, how nice . . . They'll always have each other."

Hours after her mom recounted that, Caitlin was gone.

The Martenses were at the family's lake cottage in Brillion in late May when Caitlin first showed signs that something was amiss. She woke one morning slightly dragging her right foot.

Her mom thought it was those high-soled shoes she'd bought her; her dad suspected she might have pulled a muscle.

"But she told us, 'My leg isn't working right,' " John said. "And that's when we took her in."

Back in the city Monday morning, doctors X-rayed her right hip, knee and ankle. Nothing. They followed Tuesday with an MRI of her spine. Again, nothing.

By Wednesday morning, the weakness had traveled to her right arm, and her pediatrician scheduled an MRI of her brain for Thursday.

"That's when they told us she had a brain tumor, and it was inoperable," Peggy said.

A biopsy the following week confirmed that Caitlin had what's known as glioblastoma multiforme, an aggressive tumor that grows through the tissue and sneaks its way along blood vessels, making it difficult to remove.

At the time, the parents were told Caitlin had a 40% chance of living a year. A new baby is due in November. Maybe she would live to see it.

Peggy and John tried to be as honest as they could with the girls from the beginning.

After the MRI, the neurosurgeon held up the image for the twins to see and told them, "This is Caitlin's brain. This is what doesn't belong and what we're going to try to get rid of."

"Little kids know," Peggy said. "You have to tell them the truth. But we've kept it on their level."

Outpouring of support
The doctors started Caitlin on an aggressive round of radiation and chemotherapy, requiring daily trips to Children's Hospital in Wauwatosa.

She took steroids to reduce the swelling around the tumor, antibiotics and breathing treatments to prevent pneumonia. There was physical therapy, occupational therapy, weekly blood draws.

At the same time, the parents tried to keep Mary's life as normal as possible, taking her to gymnastics and softball and play dates with friends.

Offers of help poured in.

Family and friends took turns watching Mary.

Teachers and staff at West Allis Central High, where Peggy teaches English, showered Caitlin with books and toys, and gave generously to a fund set up by Principal Jack Padek to defray the family's expenses.

Peggy and John's volleyball teammates arranged for meals to be delivered three days a week, and later hatched a Care for Caitlin fund-raiser planned for Oct. 26.

The bosses at Staff Electric, where John works as an electrician, told him to take whatever time he needed. Family comes first, they told him. The work will always be there.

The folks at John's union hall, many of whom he did not know, passed the hat, raising more than $1,000 for Caitlin and another child. Co-workers pleaded to help in some way.

"They say, 'What can we do? We'll mow your lawn, anything,' " John said. "But you just don't know what you need."

The Make-A-Wish Foundation sent the family to Disney World. A highlight for Caitlin? Ice cream every day - 7 a.m. if she felt like it.

The couple had always done things on their own; they never envisioned themselves accepting financial help.

"It's hard just to take it," Peggy said. "But we do. It's very humbling."

At the center of it all, Caitlin rolled with the ups and downs.

"How are you doing today?" people asked constantly.

"All right," she would say. "Just tired."

Her patience was never more apparent than at the dinner table. Saddled with a voracious appetite thanks to the steroids, Caitlin clamored to get there first, then waited for the others to say grace.

"She'd pick up her bad hand and wrap those little fingers around it and say her prayer," her mom said, tears welling in her eyes.

"And I'd think: Oh God, why are you doing this to us?"

By mid-August, Caitlin was tiring quicker and sleeping more. But she didn't want to miss her twice weekly trips to physical therapy. They had become a highlight, not so much for the strengthening exercises but the friendship she'd developed with therapist Diane Feldt.

Feldt is prone to fall for her children.

"They can't get better if they think you're just going about your job," she said. But there was something special about Caitlin. "She's just so easy to know," she said.

The next day, an MRI revealed that the tumor had grown significantly.

Peggy and John decided to halt treatment.

"We had asked them early on, when we first started radiation, that if it gets to the point where there's nothing they can do, will they please be honest with us," Peggy said.

"That's when they sat us down and reminded us of that conversation."

Innocence of children
Peggy took an unpaid leave from teaching. And the girls began 5-year-old kindergarten - Mary at Franklin Elementary, Caitlin at Irving, where kindergarten teacher Barbara Johnson had experience in special education and the single-floor layout made wheelchair access easier.

Peggy asked Johnson whether she could stay with Caitlin in the classroom. She didn't want anyone else tending to her daughter's bathroom needs. "And I just wanted to spend as much time as I could with her," Peggy said.

Johnson was reticent at first and asked Peggy to give her a week alone with the children. Then she thought about it overnight.

"If she needed this time with her daughter, who was I to say no," Johnson said.

Early on, Children's Hospital child life specialist Eileen Clark came to class. Her first question was: How is Caitlin different?

The children looked around, struggling for the answer. Finally, one hand shot up and the child announced, "Her sister's with her today."

"Children don't see those things," Peggy said. "They're born so innocent."

Clark explained to the children that Caitlin was sick, but that no one could catch it. She brought a fabric bone stuffed with "cells" to explain how cancer sometimes attacks bodies. And Caitlin lifted her hair to show the bump beneath, where her shunt was.

As the days passed, the children seemed to look past the slack in Caitlin's limbs, the swelling in her head, the wheelchair she sometimes used. Although the tumor affected her mobility, Caitlin's intellect remained sharp.

One little boy, Rahim Babwari, doted on her. She was his best friend, he'd say. If she was out of school, he guarded her favorite floor puzzle like a sentry.

"That's Caitlin's puzzle," he'd admonish anyone who tried to open the box. "She's going to do it when she gets back."

On what would be Caitlin's last day at school, the class took the first of its monthly field trips to Meadowmere, an assisted living center. Johnson's idea is to break down generational barriers. Central to the experience is a discussion of death.

The children come to understand it's a part of growing old.

Strength and heartbreak
Caitlin Martens died late in the evening on Oct. 9.

In the days leading to that moment, Peggy and John kept vigil in her hospital room. Waiting. Watching as their daughter slipped into unconsciousness. Consoling those who had come to console them.

Their daughter Mary was dealing with the situation in her own 5-year-old way. One day she dressed herself in Caitlin's clothes; other days, she would linger on the edge of the hospital room.

"I told her it was OK to tell Caitlin you love her. It's OK to touch her," said Julia Van Der Woude, a 22-year-old Marquette nursing intern who came in on her days off to play and talk with Mary. Van Der Woude lost her own twin brother to leukemia, when they were 8 years old.

As open as they tried to be, Peggy, now eight months pregnant, and John could not bring themselves to tell Mary that her sister was going to die. They could hardly deal with it themselves. They hung back when the child life specialist suggested Mary go down the hall with her to color and read.

And talk.

On the last day of her life, Caitlin was bundled in blankets, a brown-and-white stuffed dog in one arm and a pink bear in the other. Her breathing was labored, but the morphine and oxygen kept her comfortable.

Colorful balloons lined the ceiling; a giant paper heart with children's names adorned the window.

Karen Martens, Caitlin's grandmother, read to her from "Gentle Willow," a book for children about dying. Caitlin's family believed she could still hear them. Her grandmother read in a warm, expressive voice as if the two were snuggling on a porch swing.

John and Peggy welcomed a steady stream of visitors. Caitlin's great aunts, Peggy's parents, John's foreman - who has twin girls of his own - doctors and nurses all made their way to the room. There were tears, but also smiles - even laughter - as they passed around photos and shared Caitlin stories.

"That giggle. I'd give somebody a million dollars just to hear that right now," said Feldt, Caitlin's physical therapist. She sat on the edge of a chair, gently rubbing Caitlin's legs through the blanket. "My hands are cold, Caitlin," she said. "Warm them up."

Before leaving, Feldt leaned over, kissed her cheek and said tenderly, "Love you. . . . See ya later, alligator." It was the second of three visits she made that day.

Peggy and John seemed strong, heartbroken but solid.

"I don't want to be angry. It takes too much energy," Peggy said, crying finally. "I'd give anything to have her back the way she was. But that's not going to happen. . . .

"She's probably up at the great up north now. She's jumping off the pier now."

'Our sweet friend'
Barbara Johnson's kindergartners gathered on the carpet for story time. And Johnson steeled herself for a lesson she'd rather not give.

They've had some time to prepare for it. The children knew Caitlin was hospitalized, and some had asked if she would die.

"That is a possibility," Johnson had said.

A few were waking up at night crying, their parents said. The floor puzzle was still off limits to anyone but Caitlin. And Rahim was miffed that they couldn't all just rent a bus and visit her.

Johnson picked up the book, pages high so they could see the pictures, and began to read. The story told how butterflies and fish and birds and plants - and people - all live. And all die.

No matter how long they are, or how short, lifetimes are really all the same.

They have beginnings, and endings, and there is living in between.

Johnson closed the book, and still her students sat quietly.

"I have some very sad news," she began. "Our sweet friend Caitlin died yesterday."

There was a momentary gasp, and then a trickling of emotions. And questions. And memories.

At the back of the group, Rahim sat motionless, his hands in his lap. He listened a while, then slowly dropped his head.

A small boy reached over and slid his arm across Rahim's back.

Then the boy leaned forward, and with his other hand wiped Rahim's eyes.

From the Oct. 19, 2003 editions of the Milwaukee Journal Sentinel