The Turning Point ~ Article on Children's Hospice

[DeepinDepp]

May 21, 2006

The Turning Point
By PEGGY TOWNSEND Sentinel staff writer

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.

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.

Standing at their work stations at their new office in Watsonville, the two women say if they had known what lay ahead of them; if they had known how their lives would change directions on that clear September morning they might have been more worried.

"We said, 'let's just make some calls' and it snowballed before we even realized the magnitude of what were talking about," Maggard says.

"If we knew what was going to be involved, we would have been more daunted."

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.

Maggard had never heard of the rule.

"But it was an easy concept to grasp," she says.

"We thought it was an institutional and policy problem and therefore could be solved," says Butterworth.

"It didn't make sense to me that you lose support if you decide you want to live."

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.

"His daughter would cry whenever he came in," say Butterworth, the mother of two, "and so that memory he has is of his daughter, as she lay dying, crying every time he came in the room."

Maggard, who has three children, listens.

"Sometimes, it just needs one person to put a voice to an issue," says Maggard.

"We knew if we could give a voice to this, there was a good chance people would rally around it."

Fire and earth

Butterworth and Maggard wear earrings with different Chinese characters on each one.

One of the characters is a symbol for fire.

The other symbolizes earth.

They bought pairs of each and split them up, "to try to balance each other out," Butterworth says with a laugh.

Butterworth, who talks with the speed of a world-class sprinter, says she is the fire of the pair. Maggard, steady and calm, is earth.

"They're a dynamic duo," says Tree Dunbar, director of Clinical Services for the local Hospice Caring Project. "...Something happened when they found each other.

"It's like a big energy."

Those who know the women describe them variously as smart, selfless, ballsy, kind-hearted, tenacious, focused. "Like terrier dogs," says the mother of a boy who had cancer, "they don't let go."

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.

It was Butterworth.

"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.

"They change peoples' lives on a daily basis, not just for a couple of hours in a movie theater.

"I'm amazed by what they have achieved."

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.

For Snow, Butterworth and Maggard's efforts are invaluable.

"A parent with a sick child would never be able to do what these women are doing," she says.

She marvels at the fact that the two women are not involved in the cause because their children are ill, or because they have experienced the situation themselves.

"They don't have to do this," Snow says. "They must have incredibly large hearts."

Dr. Lonnie Zeltzer, director of the pain program at UCLA, applauded the women's efforts saying she sees regularly children whose parents refuse to give up treatment until the last moment. That means, she says, children don't get services that could alleviate their pain, they spend more time in the hospital or ER and families lose professional support they need to face the critical illness of a child.

Butterworth and Maggard, she says, "are both among the brightest, most energetic professionals I know."

Sitting in their new well-lit office with its stylish, modern furniture dotted with photos, handmade quilts and a pink angel lamp given to them by a young girl who died, Butterworth and Maggard tell stories of the children they have met through their work:

The 13-year-old whose third transplanted heart was failing and who had to fight to go home to die because the medicine that would keep her heart beating a little longer was considered "curative."

The 11-year-old girl with neuroblastoma who was so eloquent when she went to Washington D.C. to lobby for the hospice rule change only six months before she died.

And the 14-year-old girl who had called her hospice nurse on her cell phone in the middle of the night. "I'm dying and I need a friend," she said, "Will you come over now?"

"I see us as conduits," says Butterworth. "We can stand in the gap between need and the people who can fix it."

Even though even though their days are filled with cooking and car pooling, fundraising and phone calls, there is something, they say, that just keeps them going.

"It's not like we had a grand plan of how it was going to come it," Butterworth says. "It's like you get this notion in your heart and head that you can do it.

"... It's like you just get called to do something."

Contact Peggy Townsend at ptownsend@santacruzsentinel.com.

Lori Butterworth and Devon Dabbs Maggard

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 http://www.partnershipforparents.org" onclick="window.open(this.href);return false;" onclick="window.open(this.href);return false;.

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 http://www.childrenshospice.org" onclick="window.open(this.href);return false;" onclick="window.open(this.href);return false; or call 763-3070.

[Peachy]

"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.
.

Thanks for posting this article DiD - it warmed my heart. I am always speechless with admiration for people like Lori and Devon - the world just wouldn't be the same place without people like them. When I read reports like these I always feel completely selfish and inadequate compared with these angels who dedicate their lives to such wonderful causes. It also puts our own small worries and complaints into perspective. Bless Them.

[es]

thanks Deep for the article,I didnt know how the two ladies began and indeed quiet astonishing that they didnt have a direct expirience of their own.

great to see the cause gets press and hopefully more buyers for the bracelets and insight in things that has to be fixed/changed.

greets,
es

[DarkAngel]

Wow, thanks for sharing! Interesting to know a bit more about those two women. I can only agree with Peachy!

[Ingrid 3]

Ok , here I am crying again ... I had no idea about the federal rules , it breaks my heart to read that .
It's great to read about Lori and Devon and how it all began . Thank you for posting Deep .

[Anna]

Interesting read and too true that quite often people like these two never hit the lime light because their work isn't glamorous.
Hurray for Lori and Devon and all those other workers who don't get the credit they so deserve.

[lumineuse]

Thanks for sharing that, Deep. What amazing women! I am grateful that we have been able to support their work.

[San]

Thanks Deep for this article. I when I read it. San

[ThirdArm]

Thanks, Deep, for posting this article. I saw it in the paper yesterday, but had to wait till today to post it, if no one had before.

The reference to Johnny wearing the bracelet set off a 'firestorm of fundraising,' I immediately thought of us here at the Zone!

This is such a special calling, working with children at the end of life. The article made me tear up

[QueenofKings]

What a beautiful article to draw some more attention to Lori and Devon's valiant work. I got teary-eyed reading it. These 2 women are real heroes.

[DeepinDepp]

Thanks, Deep, for posting this article. I saw it in the paper yesterday, but had to wait till today to post it, if no one had before.

The reference to Johnny wearing the bracelet set off a 'firestorm of fundraising,' I immediately thought of us here at the Zone!

This is such a special calling, working with children at the end of life. The article made me tear up

Lori and Devon are amazing women. Thank you ThirdArm for originally posting the article that led us to Children's Hospice.

[part-time poet]

Thanks, Deep, for posting this article. I saw it in the paper yesterday, but had to wait till today to post it, if no one had before.

The reference to Johnny wearing the bracelet set off a 'firestorm of fundraising,' I immediately thought of us here at the Zone!

This is such a special calling, working with children at the end of life. The article made me tear up

Lori and Devon are amazing women. Thank you ThirdArm for originally posting the article that led us to Children's Hospice.

This is a wonderful story about Children's Hospice. I didn't know all the background of how Lori and Devon got started--it is amazing, how much they have accomplished. It shows how great things can come from two dedicated people with a good idea, passion, and energy.

Please notice that the Hospice's entire budget for a year is only $500,000--when you are talking about a charity that deals with multiple client families and offers shelter and medical care, this is a very small amount. That means that what the Zone offers in support really makes a difference for them. Your donations matter.

Thanks very much to the wonderful members of the Zone who have given so generously to the 2006 Birthday Project, and a special thanks to Third Arm for letting us know about Lori and Devon and the Children's Hospice. It is a pleasure to support such truly noble work.



Part-Time Poet