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"The staff becomes an extension of your family. They worry and cry with you; they really do care. Cancer doesn't have any favorites --- from all walks of life, rich or poor --- we're all the same in a humble place. We can only try to help each other through it."
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For young people who have cancer, it's a family-involved struggle of courage and hope, which includes the extended family of caregivers who play such a large role in their healing and quality of life.
There's a big difference for the patients, family, and the staff when hospitals have a family-centered care environment. This involves special spaces built for the patients and families to enjoy together — gardens or playrooms, where patients can be kids and healing can be experienced in more ways than with medicine.
Besides a committed team of pediatric oncologists and nurses, it also includes social workers, psychologists, child life specialists, parent liaisons, and psychosocial programs to aid patients and their families.
Children's Hospital and Health Center of San Diego (CHHC) has such a family-centered care policy and environment.
Carley's Magical Gardens
All the cancer patient rooms at CHHC open out onto Carley's Magical Gardens, a series of three courtyard gardens that include: The Garden of Dreams, The Buggy Garden, and The Friendship Garden. These were all inspired by a toddler leukemia patient, Carley Jean Copley, who would often wander outside her room with her parents where she befriended bugs, spiders, and hummingbirds.
She lost her fight to acute myelogenous leukemia in 1996, but her spirit lives on in the gardens and in a storybook and compact disk that is given to each cancer patient in either English or Spanish.
The story guides patients through the art-filled, interactive play gardens — past a bronze Carley bending over a bug and her friend Francisco holding a turtle. The story tells how Carley and Francisco help animals as they go their merry way. When they get lost the animals come back to help them.
Patients and siblings can hide in the mosaic hummingbird nest. They can splash their hands in the river of dreams, explore the playhouse, sit with friends and family under the gazebo, lay down on a caterpillar bench that's sprouting wings, play behind animal masks that reflect themselves in silly mirrors, or sit on a throne fit for a king or queen.
A flutter of colorful sailcloth butterflies shade the patients. Lush vegetation and flowers surround them. Fountains and huge fireflies and dragonflies glow at night like comforting nightlights
Gardens Aid Patients
Cancer treatments range from overnight stays for chemotherapy or monthly cycles for bone marrow transplants, and they can last for a few months to two-and-a-half years, explained William Roberts, MD, pediatric oncologist at CHHC. For those chronic patients, "The gardens have clearly made a difference," he said.
"When patients are sitting in the bed all day, they tend to get weaker, and that also leads to depression," he said. "When they can get up and walk around, get a bit of exercise, feel the sunshine or sit in the shade, that helps from being indoors and in the hospital so much."
The gardens allow people to gather outside of their rooms. Roberts often sees families sharing a picnic out in the gardens. "That does a lot to allay fear and anxiety, as opposed to staying in the room where the blood was just drawn," he said.
There's also a playroom with toys and computers. Computers also help older patients keep up with homework assignments from their teachers. The gardens and playroom are important outlets for siblings as well.
The gardens also work magic on the staff. "We have high-stress jobs and to be in surroundings that are pleasant goes a long way," said Roberts. "The gardens help people get centered or stay calm, or feel some reaffirmation in their minds after going through something hard."
Nick Sloan Doesn't Give Up
In 1998 when Nick Sloan was nine and battling a brain tumor (medulloblastoma), he'd often sit out in the gardens whenever he felt terrible. As he felt better he'd go to the playroom, and his parents, Terry and Jim, could go get a quiet cup of coffee or a walk around the block. "It's important to give your kid a break from you," said Terry.
Surgery removed a tumor the size of a small lemon over his cerebellum. Radiation completely shrunk another tumor, and he had a year's regimen of chemotherapy. He's been cancer free since 1999.
From critical care to rehabilitation, the Sloans were thankful of the care they received from the entire staff. "The staff becomes an extension of your family," said Terry. "They worry and cry with you; they really do care. Cancer doesn't have any favorites — from all walks of life, rich or poor — we're all the same in a humble place. We can only try to help each other through it."
Hal Meltzer, MD, is Nick's beloved neurosurgeon. Meltzer has run with Nick every year at the Celebration of Champions Run benefit, and last year, Nick raised $2,000. Kids are pulled in wagons, pushed in wheelchairs, and some are carried; others run or walk the one-eighth mile course.
"It's nice that they have this relationship," said Terry. "Dr. Meltzer can see Nick's progress, watch him grow up, and be part of his life. He was huge for Nick, everybody was. If everybody didn't do what they did, we wouldn't be where we are now."
Child Life Specialists
Child life specialists enable children and families to cope in a positive manner. They get the patients busy in the playroom, in a happy environment, making crafts, or explain procedures to very young patients through medical play. They bring people in to sing and share animals. They have patients help other patients who are scared.
Nick, now nearly 14, has come away with his cancer experience celebrating life. "I appreciate things more. I think God has a plan for me. I understand a lot more…I know what it's like to need help."
"I know it's bad," he tells cancer patients, "but you've got to fight. Don't give up."
Outside Activities
Outside activities are important. Nick enjoyed many programs, including Camp Reach For The Sky, an American Cancer Society (ACS) weekly camp for cancer survivor kids. Once a week he participated in REINS, (Riding Emphasizing Individual Needs and Strengths), horseback riding for those with disabilities. He served as a volunteer helper.
Nick was selected twice to visit Silver Lining Ranch in Aspen, Colo., a childhood cancer camp created by former tennis pro, Andrea Jaeger. In the summer he went white-water rafting and hiking, and in the winter he enjoyed dog-sledding and skiing.
Each year, he went deep-sea fishing in the Catch A Dream event started by Amy Crisman, a pediatric oncology nurse at CHHC. In 1990, she also started a teen group called SOMBFAB (Some Of My Best Friends Are Bald).
Peer Groups Are More Than Fun
SOMBFAB was started with a letter of invitation written by the teens, "Dear Teenager, are you tired of puking your guts out with chemo, do you feel alone?" The response was great. Crisman still averages about 30 kids per meeting. Long past treatment, 20-year-olds still attend. They encourage the newly diagnosed patients.
Her co-director is Robby Medina, now manager of pediatric programs in San Diego for ACS, who first joined SOMBFAB as a 14-year-old, and is now 26.
One teen told Crisman, "SOMFAB is the only place where I can get away from my cancer — it's the only place where it doesn't matter." A lot of networking goes on. They play a game called "What's the stupidest thing anyone has asked you or said to you since being diagnosed?"
Some top picks: "Somebody asked me if I had a hair brush," and "A doctor asked me, does it hurt?"
"There was one kid whose family couldn't say the word 'cancer' out loud," said Crisman. "At the meeting two boys started joking about butt cancer, and pretty soon her eyes were huge, and she started laughing. So there's therapy going on that they have absolutely no idea is happening. They think it's all fun and games."
"It's been a tremendous success — the best thing I've ever done professionally," said Crisman, "and I'm extremely thankful to be part of it."
Giving Teens Independence
One of the major developmental milestones in adolescents is independence, and wanting to be with a peer group. "With cancer," explained Crisman, "they're so very different from their peers all of a sudden, and they're stuck with parents all of the time."
Because of these peer groups, "For kids who aren't going to do well, they've gone to a dance or a beach party," she said. "They've had some of these life experiences that are age appropriate for teenagers. And for the kids who are going to be off-treatment and do just fine, they've had the practice. So they're ready for their first high school dance."
Parents need support, too. Parent liaisons rotate services daily, troubleshooting problems, meeting new patients, connecting staff and parents. Twice a week families get together and get to know each other. One of the best supports is to meet other families whose child has the same diagnosis.
Memorial celebrations are held once a year to remember those who have died. Notes are written, attached to helium balloons, and released. Patients and families bring poetry and music to share.
The Gift That Keeps Giving
For Michael and Liz Copley, parents of Carley, who lead the fundraising, the magic was the synergy involved in the creation of the gardens. It was a whole-hearted community project, from those who donated $500,000; to the contractors and people who gave labor, supplies, and time; to the artists who passionately got involved with their skills.
Carley's Magical Gardens were the crowning achievement of the long-time hospital architect, Tony Figueras, who was diagnosed with a brain tumor in the middle of the project and died shortly after the ribbon-cutting ceremony.
"The biggest reward I get," said Michael, chairman of Children's Hospital foundation board of trustees, "is when I'm up there walking through the gardens, and I see other families enjoying it."
The Copleys feel this is vital to families. "We tried to incorporate life into our life with cancer," said Liz. "We let Carley still be a kid, get outside, and play and walk. That was really important."
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