Santa Cruz Sentinel.com – Nobody thought much about the sight of two blond women crying in each other’s arms in the parking lot of Mountain Elementary School on the morning of Sept. 11, 2001 – By PEGGY TOWNSEND Sentinel staff writer.
Lots of people had cried that day at the news that three hijacked planes had plowed into the World Trade Center and Pentagon, and a fourth had nose-dived into a Pennsylvania field.
But this was different.
This moment would shift the lives of those two women, and possibly the lives of thousands of children and families, in a whole new way.
Nearly five years later, the two Soquel moms – Lori Butterworth and Devon Dabbs Maggard – are heading a program that is fighting to change the way critically ill children get hospice care and are rubbing shoulders not only with powerful politicians but also Hollywood heavyweights like Johnny Depp, Toby Maguire and the former head of the Screen Actors Guild Melissa Gilbert.
They have helped write a California bill that would begin the process of changing children’s hospice rules and will be the focus of a Senate hearing next month. They have organized a statewide coalition of health agencies to push for children’s hospice care, set up a model for the program here in Watsonville and now head an organization with a $500,000 budget.
And sometimes, they find themselves sitting beside a dying child’s bed or holding a parent whose daughter or son has just died, and weeping.
A NEW ENERGY
On the day they met, Maggard was a documentary filmmaker and Butterworth was the founder of a support organization for families of kids with cancer called Jacob’s Heart.
Both had been unable to contact relatives in cities the Sept. 11 terrorists had hit; both had broken down with worry.
It wasn’t long before they were huddled over cups of coffee, talking about their lives, their kids, about Butterworth’s work with children with cancer and then finally a topic that was to be at the core of their lives for the next five years – a federal rule which forces parents of terminally ill kids to stop any treatment intended to save their child’s life in order to qualify for the hospice care benefit.
Energized by the emotions of that day, the two women, who look enough alike that they could be sisters, decided to do a little research. Before they knew it, they were attending conferences, making calls to children’s hospital officials and renting a hole-in-the-wall office in Soquel to start their drive to change a 30-year-old federal rule that had been put in place mostly for adults.
The law said that in order for someone, including a critically ill child, to get the hospice care benefit – 24-hour on-call help from a nurse, a social worker, a chaplain and volunteers, along with respite care and pain management – they had to give up any treatment intended to cure or prolong their life and have a doctor say they had less than six months to give.
That makes sense for 90-year-old cancer patients, Butterworth and Maggard thought, but not for a 6-year-old with neuroblastoma or a 13-year-old with a failing heart.
“It’s inhuman to say to parents that you have to stop chemo so you can get hospice care,” Butterworth says, her eyes filling with tears as she tells of a father who couldn’t get hospice, so he had to give his daughter her daily injections himself.
“We knew if we could give a voice to this, there was a good chance people would rally around it.”
FIRE AND EARTH
Early on, a state health official had told the pair, “Ladies, you’ve got to be the squeaky wheel,” Butterworth recalls.
“So that’s what we’ve done,” she says.
They’ve called government officials, heads of charities, cancer specialists, insurance executives. “Smile and dial,” is their name for it.
Once the assistant of a powerful woman snapped, “it’s never enough with you people.”
Butterworth told her : “You know what, this is my job to advocate for these kids.
“I’m not doing it for me.”
Actress Melissa Gilbert, former president of the Screen Actors Guild and best known for her appearance on TV’s “Little House on the Prairie,” calls the women fearless and remembers her own first contact with them and their cause..
She was at Children’s Hospital in Los Angeles with Toby Maguire “Spiderman” and Leonardo di Caprio “Titanic” to give an honorary Screen Actors Guild card to a little boy named Dustin Meraz who dreamed of being an actor, but who was dying of cancer.
While kids on the ward swarmed the actors, a woman with brown eyes and shoulder-length blond hair slipped up beside Gilbert and in a rush of words told Gilbert about the children’s hospice project, about kids who died without care that could have kept them from suffering, about those who died in a hospital when they wanted to die at home.
“I remember I felt like I had been hit by a tornado. She left me breathless,” Gilbert says. “How could I say no?”
Gilbert agreed to be on the Children’s Hospice and Palliative Care Coalition’s Board of Directors, enlisting the aid of friends like actor Johnny Depp, who set off a firestorm of fund-raising simply by wearing one of the organization’s bracelets.
Soon, thanks to Gilbert, support began coming in from other Hollywood stars like Bruce Willis, Jeremy Piven of “Entourage,” Kiefer Sutherland, George Clooney and Tom Cruise, and Gilbert spoke out regularly on the issue, even attending medical conferences to educate herself on the issue.
“We tend to make heroes of people who score terrific numbers in sports games, or who make big money at the box office,” says Gilbert. “But women like Lori and Devon are the real heroes.
FOR NICK
Shannon Snow remembers how the two women came into her life as her son Nick was being treated for a cancer of the nervous system at Children’s Hospital in Los Angeles.
The boy with the coffee-latte colored skin and curly brown hair proudly told Butterworth he had “flunked hospice twice.”
The truth was, Snow says, that she arranged her own hospice-style care for her son, because getting the service would have meant he would have not been able to get the experimental chemotherapy she thought he needed.
She tells the story in a soft voice of how Nick had said he was tired of the chemotherapy, but had rallied with the group of volunteers and a nurse around him and how the final round of the treatment had been the thing that cured him of the cancer.
He was cancer-free when he died last month after surgery to repair a perforated intestine.
Nick was 16.
WHAT THEY HAVE DONE
Since Sept. 11, 2001, they have formed the statewide Children’s Hospice and Palliative Care Coalition, have helped author a bill to change hospice benefit rules for children in California, have set up a demonstration children’s hospice program in Watsonville called Partnership for Children and set up an online resource for parents of critically ill children at www.partnershipforparents.org.
WHERE THEY GET THEIR MONEY
Their $500,000 budget is funded by the California Health Care Foundation, Community Foundation, Hospice Foundation of the Central Coast, Newman’s Own, Santa Cruz Memorial, the Harden Foundation, D’Arrigo Brothers, Robert Woods Johnson Foundation and the sale of bracelets and donations.
ABOUT AB1745
Would require that the state apply for a federal waiver to allow children to receive the hospice care benefit. Some 10,000-12,000 children on public health programs in California would be eligible. Cost would be negligible because it would save on hospitalization and other costs. The bill passed the California Assembly last year on a 77-0 vote and is now awaiting Senate hearings.
For details or to order a bracelet, visit www.childrenshospice.org or call 763-3070.
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