Nick Snow died in 2006 at the age of 16.

But a battle the Nevada Union High School student began in 2003 — to allow all children diagnosed with serious illnesses to receive both hospice care and treatment for their illness — is coming to fruition now.

“It's happening,” exulted Nick's mom, Shannon Snow of the San Juan Ridge.

Show has been working since 2006 with Children's Hospice and Palliative Care Coalition to pass the legislation and implement a pilot program.

“I wish (Nick) could be alive to see this. He worked so hard to get this going — and we did it!” Snow said.

Five months after Nick died from an intestinal infection (he had fought cancer for six years), Gov. Arnold Schwarzenegger signed the Nick Snow Children's Hospice and Palliative Care Act.

Very few children receive hospice care because, to qualify under the current system, their parents and doctor must state the child likely has fewer than six months to live — and the child must stop all treatment intended to cure the disease or prolong life.

“Basically, you had to give up — and parents won't give up,” Shannon Snow said.

Under the Nick Snow Act, California was authorized to submit a federal waiver that will enable children to receive potentially curative treatments as well as comfort care and family support services provided by a hospice team.

But it is only now that the first five pilot programs are getting under way. Projects were launched Thursday in Alameda, Santa Cruz, Monterey, Santa Clara and San Diego counties.

Next year, pilot programs will be launched in Humboldt, Marin, Orange, Sacramento, San Francisco and Sonoma counties; Fresno and Los Angeles counties will follow in 2011.

“Five counties are enrolling families today,” Shannon Snow said Thursday. “Families will get their care team at diagnosis, and that team will be the same as the hospice team. They also will have a nurse coordinator to help them. It's just a much more compassionate way to deal with long-term, life-threatening illness.”

The program will be open to children who meet medical criteria and have Medi-Cal coverage. The patient will be assigned to a care coordinator who will do an in-home palliative care assessment and create a family-centered action plan.

The waiver will not change any of the services that the patient is receiving at the time of referral and will provide additional services, which might include respite care, expressive therapies such as art and music, family training and bereavement services.

Nick Snow was diagnosed in 1996 at age 6 with neuroblastoma, a cancer of the nerve tissue. He underwent chemotherapies, surgeries, four types of radiation, a bone marrow transplant and many experimental therapies. The cancer finally went into remission in 2002.

Nick actively began working to change the federal laws regarding hospice care after a “chance meeting” with the founder of the Children's Hospice and Palliative Care Coalition, Shannon Snow said.

“He said hospice wasn't working for kids, we have to change it,” his mother said. “Teenagers are always making a federal case about everything, and he did — he changed a federal law. He was an amazing, amazing person.”

In 2003, he went to Washington, D.C., to ask Congress to change the rules.

“I just pressed his suit and drove him places,” Shannon Snow said. “He was the one who knew all the laws.”

Nick died April 2, 2006, from an infection.

“When he died, it was very unexpected, and I had to get up to speed so I could continue this,” Shannon said.

Since that time, Shannon has been heavily involved in putting the pilot programs together, meeting with officials from MediCal, Medicare and California's Children's Services.

“We have to prove it's cost-neutral, but we're going to show it's cost-effective,” she said of the waiver program. “And it will be a more compassionate model for children.”

Nick's death underscored how vital the program will be, Shannon said.

“The last 24 hours of Nick's life cost the state nearly $100,000,” she said. “If a waiver had been implemented and he had been in the program, we could have done everything for a maximum of $500.”

Because Nick had been sent home and then had to be life-flighted to UC Davis Medical Center, with all the attendant emergency care and tests, the costs for his care sky-rocketed, Shannon Snow said. A care coordinator could have helped them either make a decision to hospitalize him sooner — or let him die in peace, at home.

“All we knew to do is go to the emergency room,” Shannon said. “And once that ball is rolling, you can't unroll that ball. This way, families won't have to panic and opt for care that's really not necessary or helpful.”

While the pilot program will unroll over the next two years in just 13 counties, Snow intends to continue the fight.

“We're going to keep pushing. We want this in all the counties in California and then we're going state to state,” she said. “We're going to keep going. We're not going to stop.”

For more information, visit NickSnow.com.

To contact Staff Writer Liz Kellar, e-mail lkellar@theunion.com or call 477-4229.