RALEIGH -- As Diane Moore guided her daughter on the terrifying journey from cancer diagnosis to death, she found that even the impossibly difficult is easier with help.
Operating on a sock monkey could prepare Colleen Moore for the procedure that would put a tube deep into her chest. Even telling the 9-year-old that her journey would soon end was possible when someone could give Moore the right words to use.
But throughout her ordeal, Moore also found that many cancer-stricken children and their families don't get enough help dealing with the emotional moments large and small that go along with cancer treatment.
So just months after Colleen's death in 2008, Moore founded Striving for More, a nonprofit group that provides emotional and spiritual support for children and families at the Triangle's two pediatric oncology programs at Duke Medical Center and UNC Hospitals.
She takes no salary as director of the nonprofit group, and in recent months she has donated a percentage of her salary to the cause from her job as a vendor manager at Railinc, a railroad information service. But she says she has been rewarded with the peace that comes from knowing that her daughter's death has resulted in something good.
"I'm doing what I've always supposed to have been doing," she says. "I found that inner happiness."
Moore tells the heart-wrenching story that spawned Striving for More with dry-eyed clarity and says her goal is not to send "warm fuzzies" to sick children. Instead, she has traveled the country in search of research-based methods and products that help families in concrete ways.
Striving for More provides books on talking to children about cancer, maintains several support groups, and funds a "Courage Beads" program at both hospitals, in which children receive different colored beads for each procedure and milestone that they string into long necklaces.
Moore hopes to soon fund a fulltime child life specialist at Duke, and she has a wealth of other programs in mind for the future.
"She has shown amazing dedication and a passion to help," said Dan Wechsler, chief of pediatric oncology at Duke University Medical Center. "She really devoted her entire self to this cause."
A family's ordeal
Moore has blue eyes and closely cropped hair - she shaved it for the St. Baldrick's cancer campaign but says she keeps it short because it starts conversations about cancer that allow her to talk about Striving for More.
She grew up in New Jersey, the youngest of three sisters. She started working for AT&T as a secretary when she was 18 and rose through the ranks - working at the help desk and finally as a senior business analyst, all with just a few community college courses.
She met her husband, Vince, while designing a cash register system for AT&T - she planned it, and he was the software engineer who made it work. He now works at RTP-based Nortel.
The couple followed her family from New Jersey to the Triangle in the mid-1990s and soon had two daughters.
Cancer was a familiar word in Moore's family growing up. Her maternal grandmother died of breast cancer when her father was 18, and her father died of cancer when Moore was pregnant with Colleen.
But nothing could have prepared her for the life-changing ordeal that began in 2007, when Colleen, then 7, started complaining of pains in her legs.
A series of tests eventually produced a tragic result. In 2008, they were told that Colleen had osteosarcoma, a rare form of bone cancer, and would die within a year.
Colleen underwent a series of chemotherapy and radiation treatments to keep the intense pain associated with bone cancer at bay during her final months. But managing her fear and sadness was an equally intense challenge.
Early on, at UNC Hospitals, a child psychologist visited Colleen every day. A child life specialist, trained to help children understand their treatments and express their feelings, was also a frequent visitor, along with a chaplain.
Supports were also in place for Moore, who learned how to answer Colleen's hard questions about her illness and attended weekly support groups with other parents.
How to explain death
In exploring different treatment options, she found a Houston doctor who specialized in osteosarcoma. The family moved to Houston briefly, until their doctor arranged for them to return to Duke, where Colleen could continue a similar treatment regimen.
There, Moore found the treatment she felt her daughter needed, but not enough emotional support. Gone were the daily visits by a child psychologist and the support groups.
The child life specialist was stretched thin among too many patients, Moore said.
Nine months into her treatment, the cancer had spread through Colleen's body. The end was clearly near. Her Make a Wish trip to the Bahamas was canceled.
Moore had told her daughter that she would never lie to her about her illness, that she would tell her when it was time.
She wanted help in delivering the news, but, she says, she couldn't find what she needed at the hospital. Instead, she sought advice from a friend of a friend, a pastor who had worked with hospice.
He told her that children worry about waiting to meet their parents in heaven. He walked her through the response: It will be like she gets off of a bus, and while she's greeting the people she knows there, another bus will arrive with her parents.
Her daughter asked that exact question, and Moore knew what to say. But the fact that others wouldn't know continued to haunt her well after her daughter died, even after she returned to her job as a project manager at Sony Ericsson.
"I couldn't stop thinking about those other families," she said. "I would go to work and think, 'What am I doing here? All of those sick children are out there and they need help.' "
After the layoff
Moore had been back at work only five days when she was laid off - one of hundreds to lose their jobs to company downsizing. She took the layoff as a signal to follow through with her desire to help other parents.
When she started to research the topic, she found that many hospitals offering extensive support programs do so with funding by private donors. Insurance companies rarely pay for such services, said Wechsler, Colleen's doctor at Duke.
Wechsler said that his unit does offer support services but that the improvements funded by Striving for More are also needed.
"It is absolutely crucial that these families receive psycho-social support in addition to medical treatment," said Wechsler, who serves on Striving for More's board of directors.
For Moore, her best tool in bringing that support to the families who need it is Colleen's story, which she tells in detail on her blog, at speaking engagements, and to anyone who inquires.
It was that story that drew Joaquin Aguayo to a recent charity event to present Moore with a donation from his employer, Go Realty. It wasn't a big donation, he said, his eyes still moist after meeting Moore. But he hopes it will be the first of many.
"This is the kind of story that kind of touches all of us at home," he says.
