Angel’s gift for caring [Albuquerque Journal, N.M.]

Oct. 21--Six months after Angel Sandoval was born, her parents learned she had an inoperable brain tumor, an astrocytoma, which arises from the star-shaped cells that form supportive brain tissue.

Treating her tumor involves frequent trips to University of New Mexico Hospital for injected chemotherapy, MRIs to measure changes in the tumor's size, adjustments to the surgically implanted access port in her chest and shunt in her head -- always with her mother by her side.

Rather than complaining about the intrusive medical attention that hurts enough to make her cry, Angel, a dark-haired girl who turned 12 this month and sometimes misses sixth grade at Lyndon B. Johnson Middle School, handles it by focusing her energy on happier things.

She makes scarves for other children with cancer. She's making a necklace from the courage beads she gets when she gets injections, and she plays with her Moxie dolls -- pretty, plastic hairless ladies with long lashes, eye shadow and a range of scarves and hats.

And perhaps most impor- tant, she basks in the positive vibes from the team of Child Life specialists that works in a playroom near the Children's Specialty Clinic on the third floor at UNM Children's Hospital.

The playroom is a kid-friendly bedroom-sized space dedicated to distracting, supporting, educating and empowering children while they wait for procedures by offering therapeutic ways for them to spend their time. Five staffers work with outpatients like Angel and about 15 others work with children staying in the hospital, according to Jennifer Kean, supervisor of the Child Life Specialists team. The program has been in place for more than 30 years, she said.

The playroom has books, toys, kid-sized table and chairs, and board games. "We meet kids where they are, lift them up and build from there," said LaVita Burnley, a Child Life specialist and former school teacher and principal who has worked with Angel for almost four years. "Our role is all-encompassing, being there to support children and families in crisis."

Whenever Angel shows up, it's like a ray of light for the specialists, some who've received a hand-made scarf or two from her.

"She's one of the most outspoken, dynamic little people I've ever met," said Burnley, the recipient of two scarves. "It's been extremely therapeutic for her and a way to give of herself. She loves showing the doctors and nurses how far she comes with the scarves."

Special dolls

When Angel showed up on her 12th birthday earlier this month, after an MRI and before a neurologist used magnets to adjust her shunt, Burnley gave her a jar of bubbles to blow and encouraged her to pick a birthday present. Stored in a chest, presents are supplied by the Children's Cancer Fund, a nonprofit organization that has raised money since 1972 to provide gifts, gas cards and other assistance to families affected by cancer, said the fund's executive director, Dee Trujeque.

Brain cancer affects more children than other types except for leukemia. Of children from birth to age 14 who have cancer, 40 percent have leukemia, 27 percent have brain cancer, 9 percent have cancer of soft tissue, and 7 percent or less have lymphoma, kidney, renal, pelvis, bone, or joint cancer, according to a 2006 report released by the National Cancer Institute. Childhood cancers are rare, representing less than 1 percent of all new cancer diagnoses, according to a study produced by the American Childhood Cancer Organization.

The sort of cancer Angel has can cause headaches and vision problems. Angel has lost vision in one eye, which doesn't help when trying to dodge balls in her gym class.

Dolls available in the playroom help Angel explain things like that to other people. Six zipable soft dolls called Legacy Dolls, with ports and shunts like Angel's, sit on chairs in the playroom. The port implanted in Angel's chest allows medical personnel to give her injections, and the shunt in the back of her head drains fluids that would otherwise build up and cause headaches.

About two feet tall, the cloth Legacy Dolls allow kids to feel control when explaining their treatments to others, and they enable Child Life specialists to demonstrate to children the details of their procedures and how to cope with them, according to Kean.

Angel showed a visitor how to access the doll's port, as well as the replica of a shunt -- demonstrating procedures used on her.

"I showed my class at school what it was," she said, "and I'm going to show all the sixth-graders." A UNMH social worker and Child Life specialist went with Angel to help her show her classmates about her cancer care, using the doll as a tool, Kean said.

Since Angel was born, she's had to stay in the hospital about a dozen times, sometimes due to bad reactions to chemotherapy. She's had five surgeries -- one of them was a brain biopsy, another to put in the port, another to put in the shunt.

Several times a month, her blood gets drawn, and four times a year she has an MRI, where an image of her brain is taken to see if her tumor is shrinking. Recent MRIs showed it was, according to Angel's mother, Jess Vargas.

Financial struggle

On her birthday, Angel and her mother showed up at the hospital shortly after 9 a.m. Angel had the MRI, which took under an hour, and then they hung out in the playroom. She was still waiting for the neurologist to come adjust her shunt at 1 p.m. The closest she came to complaining was when she mentioned to her mother: "They poked me twice."

To that, Vargas replied: "I'm gonna karate chop 'em." They laughed and joked about whether Angel's hair should be loose or held in a ponytail. Vargas said five hours a week of appointments for Angel is a good week, but that she has waited for four hours on numerous occasions.

Vargas has four children: two other daughters, 8 and 9, and a son, 15. One daughter has epilepsy, and between her and Angel, Vargas receives about $1,600 a month in Social Security; the SSI insurance package picks up the cost of virtually all of their medical needs, according to Vargas.

Recently separated from her husband, Vargas moved with her kids into an apartment in southeast Albuquerque. Taking Angel to her appointments and caring for her other children leaves her no time to work. The only money coming in besides SSI is from her estranged husband, a barber instructor.

Before the split, the family lived in a house on the West Side.

Angel said in an earlier interview that she isn't as affected by her tumor as someone with a recent diagnosis. "I've been through it a lot," she said. "I was born with it."

But kids' words can hurt. "When I didn't have hair, a boy laughed at me. I kind of got upset," she said. Once, she said, she told someone: "You wouldn't want to be me."

Her 8-year-old sister, Allie, feels her pain. "I'm a little sad, because every time I see her take a shot and sometimes she cries and I feel bad."

Making scarves has become a cherished pastime for Angel. She uses yarn and a plastic loom rather than needles.

"I make them for some of the nurses and doctors I know, and for the patients," she said, speaking of children she meets at the hospital. "Since they're sick, I just want to give them something so they'll feel happy," she said, " 'cause maybe their family can't afford to get them a scarf."

Sometimes, she gives hand-knitted beanies to children whose hair has fallen out, she said.

During the wait for the neurologist, Angel cut her orange-frosted birthday cake and gave pieces to Burnley, her mother and visitors, who sang "Happy Birthday" and watched her blow out candles. Angel asked that a piece be saved for another one who wasn't in the room at the time.

"I'm bragging on her, but it's the truth," Burnley said. "She has this special way of caring for others while she's being cared for."

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