Dillon C's Story
Chris Card knows what it is to live without hope.
He did it for five years, after his wife and newborn son were diagnosed with HIV, the virus that causes AIDS, within a few weeks of each other.
"It was horrible," he said. His wife, Mary, died two years after her diagnosis, and Chris assumed his son was not far behind.
"They didn't give us any hope at all at the beginning," he said. AIDS research was still new at the time, in the early '90s, and pediatric treatment in particular was uncharted territory. "The prognosis for Dillon wasn't very good at all," Chris said.
Doctors treated the boy's initial symptoms - constant diarrhea and severe ear infections - but seemed puzzled about a plan to attack the disease itself.
"There wasn't anybody who knew what to do with him," Chris said, looking back at the difficult years before Phoenix Children's Hospital opened its clinic for patients with HIV and AIDS.
Chris spent hours reading about the disease, trying to make educated decisions about Dillon's treatment. But the research was often depressing, and information about AIDS was changing constantly.
"I never knew what to do or what to believe," he said. The one conclusion he drew was that Dillon's life would be a very short one.
Then they attended a camp sponsored by AIDS Project Arizona, where for the first time they met other children who shared Dillon's disease. Chris was stunned to meet an 8-year-old girl who had been HIV-positive from birth. Dillon was 5 at the time.
"I didn't know anyone could live that long - especially a kid," Chris said. "That was probably the first time I dared to have hope."
Another ray of hope appeared in 1994, when Phoenix Children's Hospital opened the Bill Holt Infectious Disease Clinic. The facility was the first pediatric clinic in Arizona for patients with HIV/ AIDS.
As soon as Chris talked with staff from the Bill Holt Clinic, he knew he'd found the right place for Dillon.
"There wasn't anything I asked them they didn't know about," he said. "That meant I wouldn't have to do all the homework anymore."He realized his days of digging through his own research were over.
"So I can take Dillon to the park, and you're going to do all of this (medical) stuff?" he asked, just to be sure.
Another landmark in Dillon's treatment came four years ago, when he began taking protease inhibitors. Considered the most powerful anti-AIDS drugs available so far, protease inhibitors prevent the HIV virus from replicating inside the body. For Dillon, these drugs, and the care he receives at the Bill Holt Clinic, have given him something his dad once considered impossible: a normal childhood.
At age 10, Dillon's disease is well under control. He takes various medications four times a day, and visits the Bill Holt Clinic every three or four months to monitor his overall condition. With an entire support team that includes nutritionists and social workers, as well as physicians and nurses, the clinic offers more than medical expertise.
A social worker talked with Dillon during one difficult period, looking for reasons why he had begun acting out. She learned something his dad had been unable to uncover: Dillon thought his virus was the devil, and that the devil was inside his body. With counseling, Dillon was able to set aside this terrifying myth and gain a better understanding of his disease.
Another staff member wrote a letter to Chris's employer, suggesting an adjustment of his work hours so that he could spend more time with Dillon.
"Just knowing that they're there means everything," Chris said. Once fiercely independent, Dillon's dad has found considerable relief in the support provided by PCH.
"I used to like to do things on my own," Chris said. "Now I feel like there's 20 lifeguards asking what I need.
"That's a real safe feeling."