Santa Cruz County, CA – Hand painted clay pots fill the yard surrounding Lisa and Nancy Buell's Santa Cruz home. Each came from one of their annual pot painting parties. "We have no rhyme or reason to it. People start painting and other people start painting on to it, so it just holds everyone's thoughts and feelings," said Lisa Buell. Some pots are broken in pieces and carefully wedged in the dirt. Others are filled with tall, lush plants. Each stands as a tribute to their daughter Madison. "One weekend she started kind of bearing down like she had gas and started getting a little fussy and we got really concerned because it just wasn't her disposition and took her into the doctor. And it turned out that she had primitive neuroectodermal tumor in her pelvis. And our world just completely changed," said Buell.
It was 1996 and Madison was just 5 months old. Like many local kids facing life threatening illnesses she got treatment in the Children's Hospital at Stanford. And when the Buells came home they handled most of her care. "We didn't know that we shouldn't have been," said Buell. "We're brand new Moms and our child is sick and you take care of your child that's sick. And so yes we have to give her shots and flush her IVs and clean," she added.
This is just one of the many challenges parents face according to Devon Dabbs, Executive Director of the Watsonville based Children's Hospice and Palliative Care Coalition. It's taking the lead on a new pilot program called Partners for Children. Starting in the New Year, it will provide community based palliative care to reduce suffering as families continue with curative treatment. "It's really trying to build this safety net for the families, and allowing Mom and Dad to be Mom and Dad," said Dabbs.
Under the program, families will have local care coordinator who can keep track of hospital treatments and appointments. They'll also get help from a Home Health Care or Hospice Agency where they can have a 24-7 on-call nurse and emotional support.
Basically, the families that qualify for this program won't have to seek out services on their own; help will simply be there. So over the next three years, the pilot program will launch in 13 counties with Monterey and Santa Cruz among the first. Eventually Dabbs would like to see it go statewide. "I truly, truly believe that the children will respond better to treatment. That their families will be better supported. And we're always hoping the children will improve and get better. But it's a reality that some children die and when they do die, I think we have a huge responsibility to really be there to support the children and their families," said Dabbs.
It's the kind of care that the Buells never knew was out there. "So when the cancer came back and they said we're so sorry, call us if you need anything. We believed that there really wasn't anything they could do. So we went home. We took Maddy home," said Buell. For the next 5 months, they went to the beach, the park and had their first pot painting party. They also cobbled together their own kind palliative care. From day one, friends helped out. And then a local doctor stepped in with house visits and he assigned a nurse to their home. That's where Madison passed away when she was 2 years old. "And it was beautiful and it was horrible. But it was mostly just really beautiful. So it was quite a gift that he helped to give us. But I'm glad we got the support," said Buell. These days the family keeps Madison's memory alive by sharing stories with her younger sister and brother who were born in later years. And Lisa works with Children's Hospice and Palliative Care Coalition helping other parents of children with life threatening illnesses. "She's alive, really alive in the work that I do. And so it feels like a really nice way to honor her spirit and her memory," said Buell.
To learn more about the new program, use the link below.