Belle Vernon mom savors each day despite uncertain future

Inspired by Randy Pausch, 29-year-old focuses on what she wants for her family

May 12, 2013 12:24 am

Pam Panchak/Post-Gazette

Kate Crawford gives a push to her son, Stephen, 3, and daughter, Lily, 4, while her other daughter, Grace, 4, waits her turn as they try out the newly installed playground equipment in the backyard of their Belle Vernon home.

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By Anya Sostek / Pittsburgh Post-Gazette

This Friday, Kate Crawford's twin daughters will get manicures. They will wear fancy gowns. Her son will wear a tuxedo. And they will parade across the Belle Vernon High School auditorium to join the pre-prom Grand March.

Her daughters, Lily and Grace, are 4 years old. And their mother would like a peek into the future, to see what it feels like to watch them go to prom.

Ms. Crawford, 29, whose stage IV breast cancer has spread to her liver, spine, shoulder, ribs and pelvis, is an optimist. But -- having coped with more bad news in the past six years than many people see in a lifetime -- she's also a realist.

She has been told that she has a 30 percent chance of surviving five years. Sitting on the couch of her Rostraver home, she does the calculations aloud. In 10 years, her daughters will be 14. Prom is still three years after that. "Thirteen years, that's pushing it," she says. So Friday it is. "If I can see them now," she says, "that's just as good for me."

Since 2007, Ms. Crawford has watched her first daughter survive only three days, given birth to premature twins, and had such a traumatic birth of a premature son that she required seven blood transfusions.

In the process, she has become very good at coping with the bad. While pregnant with her son and taking care of 1-year-old twins, she founded a nonprofit organization called Project Sweet Peas to provide support to parents of premature babies. In just three years, it has helped more than 6,000 parents in 20 states.

Post-cancer diagnosis, she's turned the positive projects toward her own family. Inspired by Carnegie Mellon University professor Randy Pausch's story in "The Last Lecture," she wrote up a "Mommy Bucket List" to provide a road map for fun in her family's future, regardless of whether she's around to enjoy it:

• "Teach them to read."

• "Take kids camping across the country."

• "Meet a New York police officer ... in New York."

• "Watch them go to prom."

Life after loss

Ms. Crawford long ago lost track of the number of ultrasounds she has had in the past few years. But this story starts with one. It was 2006. They were pregnant. But a spot on the ultrasound indicated a hole in the baby's diaphragm -- a condition they initially were told had a 50 percent fatality rate.

As the pregnancy progressed, the baby girl's prognosis appeared to be good. But when Shannon Crawford was born in January 2007, she also had a serious heart defect. She died after living three days in Magee-Womens Hospital's neonatal intensive care unit.

"We shoved as many memories as we could into those three days," said Ms. Crawford, a portrait of Shannon hanging above their couch in the living room. The same image is tattooed on Steve Crawford's shoulder.

A year later, they learned that Ms. Crawford was pregnant again, only to miscarry 12 weeks later.

Fully discouraged, they found out just months later that they were expecting again, and this time the surprise on the ultrasound was that they were having twins. Lily and Grace were born six weeks early in August 2008.

For two weeks, Ms. Crawford once again returned to her babies in the NICU at Magee, a place that after Shannon's death seemed scary and grim. The girls came home and thrived after their hospital stay and when Ms. Crawford became pregnant again, she started thinking about ways to make the NICU a better place to visit.

"When you are in there, you are walking into a war zone -- there's just death and disease, sounds and sirens," she said. "You feel so alone."

It started with care packages that she put together and delivered to Children's Hospital, stocked with items like toothpaste and preemie baby clothes.

Project Sweet Peas now has chapters in 20 states, encompassing 30 hospitals, including all three Pittsburgh NICUs. It has a preemie clothing exchange, an "adopt a NICU parent" program and care packages for short- and long-term NICU stays, grieving parents and older siblings. Every Halloween, Ms. Crawford glues together hundreds of costumes -- butterflies, pumpkins, pea pods -- for babies too tiny to fit into anything store-bought.

The Halloween costumes are a huge hit, said Lisa Graper, a nurse at West Penn Hospital who worked until last month as the manager of the NICU. She called Ms. Crawford's efforts extraordinary, noting how much comfort Project Sweet Peas brings to parents in a stressful situation.

"It brings a joy to something that is otherwise very difficult to experience," she said. "The families feel like there's someone who really relates to them."

Ms. Crawford's son Stephen was born seven weeks early in December 2009 -- she hemorrhaged in the middle of the night and required several surgeries. Her son required weeks in the NICU and has had several lasting complications attributed to his early birth.

Prompted by the story of a friend who had been battling breast cancer, Ms. Crawford did a breast self-exam last August. She felt a hard mass, which she thought was probably a clogged milk duct.

Two weeks later, her son was hospitalized and diagnosed with weaknesses in his body and speech issues that required therapy six days per week. Meanwhile, Project Sweet Peas was growing rapidly and Ms. Crawford was busy with her twins as well.

"I let my issues go to the back burner," she said. "I had so much going on."

She didn't visit the doctor until December, when her breast started to hurt and she came down with a cold. She was quickly sent for a mammogram and an ultrasound, and it was clear something was wrong.

"We have had many, many, many ultrasounds," she said. "When you see blackness on the screen, it is not good. That means no light is getting through. I knew right then it was cancer."

Her initial diagnosis of stage II cancer worsened within weeks, when doctors realized the extent that the cancer had spread through her body. Late last month, she learned that the cancer was likely caused by an extremely rare genetic condition called Li-Fraumeni Syndrome, a cell mutation that predisposes children and young adults to cancer.

Her whole family will be tested soon to see whether they also have the condition.

Treatment of metastatic breast cancer has improved dramatically even in just the past few years, said Adam Brufsky, medical director of the Women's Cancer Center at Magee and one of Ms. Crawford's doctors.

"It really has changed -- it's really not the death sentence it used to be," he said, noting that chemotherapy and other drugs can be much more individually targeted. "We know we can't cure it but at least we can better control it for many, many years."

Seizing the day

It's a question that Ms. Crawford and her husband are asked frequently: "How do you walk around with a smile on your face?"

For both of them, the answer goes back to Shannon's death.

At one time, both of them had been firefighters and EMTs. They met while working in security for U.S. Steel. After Shannon died, Mr. Crawford decided to pursue a lifelong goal of becoming a police officer. Life was too short, he thought, to postpone his dreams.

Through his job as a police officer, he meets plenty of people who make the wrong decisions. For him, it's a reminder that life is full of choices.

"People ask, 'I don't know how you're smiling,' " he said. "What's your choice? I deal with people who take their bad experiences and use them as an excuse for the rest of their lives."

Ms. Crawford acknowledges that immediately after her diagnosis, she went back to the dark and depressed place she had been after Shannon's death, wondering what she had done to deserve this. But that didn't last long. She decided to stop trying to figure out the morbid calculus of good deeds and bad luck. She'd love, of course, to be cured of cancer, but now she's just focusing on savoring each day.

"I pray that God grants me a miracle, but again, the odds have never been in my favor," she wrote in a journal that turned into a blog (www.thechroniclesofcancer.blogspot.com). "Remember, I ain't no Katniss Everdeen," the heroine in "The Hunger Games."

Almost immediately after writing her bucket list and putting it on her blog, she was overwhelmed with gifts and donations. She has met Bubba, a popular disc jockey on 100.7-FM, and told her story on the radio. She has been to a Christian concert and has taken her family to a Pirates game. And Belle Vernon High School is participating in the pre-prom parade.

Her son is improving greatly and is down to two therapy sessions a week for his speech. At age 3, he has the expressive language of an 18-month-old.

Today, she'll walk with a group at the Race for the Cure in Oakland for Mother's Day -- a day that has been bittersweet for her since Shannon was born and remains so this year.

"It is always on the back of my mind on special occasions," she said. "What if this is my last Christmas, or the last one where I'm able to do things? What if I'm sick next year? We're going to go down and do the race and not worry about it."

She not only wants to raise money for breast cancer research but to spread the news of her story to people who might find it helpful to get through problems in their own lives.

"I have a good story to share," she said. "We have been through so much stuff as a young family and we're still here. We're OK."

Anya Sostek: asostek@post-gazette.com or 412-263-1308.
First Published May 12, 2013 12:00 am