The family was vegetarian, common among Seventh-day Adventists, and Eunice had to find ways to keep her son from losing weight. Eating was difficult for him—even with the pancreatic enzymes he took, his body had trouble assimilating fats and vitamins. “She’d make homemade bread and fill both sides of the bread with peanut butter, and I would have peanut butter raisin sandwiches,” Sackett says. He still eats those today. “She’d make homemade grape jelly, anything to get calories in my body.”
Eunice worked part time as a music teacher at her son’s school, in part because she wanted to get to know his teachers and friends. Privately, she worried about John and Audrey. “I can remember a couple of times when their dad and I just laid on the bed and cried,” Eunice says. “But we couldn’t give in to that.”
Music became a big part of Sackett’s life. His family observed the Sabbath every Friday evening, praying and singing together while Eunice played the piano, going through the hymnal page by page. As a child, Sackett didn’t have the respiratory problems he has now—he sang so much that he learned to sight read, and once performed a solo at church. “I remember wanting to be a conductor for the orchestra,” he says. “To this day I think, ‘Oh man, if I didn’t do this, I’d really enjoy that.’ ”
One day when Sackett was in fifth or sixth grade, he left his classroom to go to the bathroom, something he had to do more often than the other kids, and his teacher told his classmates that he had CF, and that people who had the disease died by the time they were 12 years old. That day at recess, a young girl walked up to Sackett and told him what the teacher said. “Are you gonna die on your 12th birthday?” she asked.
He doesn’t remember if he answered her. “I just remember that after school, ironically, I ran home. I ran down Linden Avenue in Glendale, and then up a very steep hill, Corwin Avenue. And then into our house,” he says. “And mom was in the kitchen and I said, ‘Mom, you gotta tell me the truth—I want to know.’ ”
He can still picture the linoleum on the kitchen floor as he waited for her to answer. “No, you’re not gonna die on your 12th birthday—you’re doing better than average,” he remembers his mother saying. “You have a very serious illness, so I don’t know how long you’re gonna live, but there’s one thing I want you to know for sure, and that is that God has a special purpose for you.”
EVERY LEADERSHIP MEETING at Shady Grove starts with a reflection, prayer or devotion. It’s a faith-based hospital: The gift shop closes early on Fridays in honor of the seventh-day Sabbath. Sackett tells stories from the Bible in orientation. When a nurse recently introduced him to a young father who was dying of cancer, Sackett stood by the man’s hospital bed and asked if it would be OK to pray with him and his family. The man passed away soon after.
“Health care is big business, but it’s an intimate business,” Sackett says. “We’re there for the start of life and we’re there for the end of life. And it’s not a job for any of us—it’s a calling.”
One new employee at Avista quit after orientation, telling Sackett, “You’re way too religious.”
A few months ago, when it was Sackett’s turn to open a leadership meeting, he showed colleagues a picture of his sister Audrey. He thought he would be able to talk about her, but he got choked up.
The disease was tougher on Audrey than it has been on him—she was sicker and spent more time in the hospital. “She called me late at night one time and said, ‘John, I just want to tell you that if you ever have to go on a ventilator, it’s not horrible—it’s OK,’ ” Sackett says.
His sister married and adopted a son, and was the first female elder in her church. Sackett stayed in close touch with her. He went to see her in Seattle in the spring of 1996, when she was nearing the end of her life. A lung transplant had been her only chance of survival, but now her relatives, who’d gathered at the hospital, had just found out that she was too sick to receive one. Doctors were keeping her comfortable.
The family had spoken with Audrey about what would happen when this time came. “We believe in heaven, and she strongly believed in heaven, and so we decided we needed to go ahead and let her die,” Sackett says. “The biggest issue at the time was: Do we take her off the morphine, wake her up so she can be conscious and tell her that’s what we’re gonna do—or do we just let her die? My dad said, ‘Let’s just let her die—don’t wake her up,’ but her husband said, ‘No, I have to tell her.’ ”
Sackett’s brother, Wally, brought his guitar into Audrey’s hospital room and the family sang hymns to her—she lifted her hands to show them she was listening. The next day, they said goodbye. Sackett stood at the head of the bed. The family decided that he, as the oldest brother, should give the nurse permission to start the morphine again and let his sister go.
“That’s a very sacred process,” says Sackett, who recently attended the wedding of Audrey’s son. “Happens in our hospital every day.”
After Audrey died, Eunice worried more about her son. “I think that was the first time that he was really face-to-face with his own mortality. To watch her deal with the dying process was very hard on him,” Eunice says. “I know he was seeing himself.”
Sackett, shown here with patient access representative Elida Pineda, likes to walk around the hospital and talk to employees. Photo by Michael Ventura
SACKETT DOESN’T ASK his doctors how long they think he has left. He used to, he says, but he always got the same answer. Ten years. “I’ve lived my whole life having 10 years,” Sackett says, “but it creates a vibrancy in life that most people don’t have.”
Sackett has heard that he’s one of the oldest living survivors of CF but he’s never asked his doctors if that’s true. (It isn’t.) “What happens if they say, ‘Yeah, you’re it, man. You’re the oldest guy,’ ” he says. “It’s like, OK, I’m next in line.”
New therapies are aggressively treating mucus buildup and the bacteria that cause infections, and some are targeting the specific protein that causes certain forms of CF, allowing a subset of patients to live longer, more manageable lives. One potential drug therapy, now being reviewed by the FDA, has demonstrated an improvement in lung function among patients with Sackett’s genetic mutation, Delta F508. The most common mutation associated with CF, Delta F508 is known to cause a severe version of the disease.
“Our real hope is as we get new therapies, we start them at a younger age and that prevents this progressive scarring and decline in people’s lung function,” says Michael Boyle, Sackett’s doctor.