Survivorship

Kathy Johnson

When Kathy Johnson was just shy of her eighth birthday, her legs became covered in bruises. She began bleeding randomly. Inexplicably tired, she took three-hour daily naps. Kathy’s concerned mother brought her to their Lewiston, Idaho, doctor, who delivered a frightening diagnosis: acute myeloid leukemia.

Told she had cancer and that she would be going to Seattle Children’s Hospital, Kathy did not understand her prognosis. "I thought cancer meant you were going to die," she said. "I thought they were sending me to this place, and I was going to go lay in a bed and die. I didn’t realize I could be treated."

Kathy Johnson

Kathy and her mom temporarily relocated to Seattle, where two months of chemotherapy put her leukemia in remission. After another round of chemotherapy, Kathy was supposed to receive a stem cell transplant from one of her siblings. But the transplant option—her best shot at a lasting cure—evaporated when Kathy developed a serious fungal infection, aspergillosis.

The infection spread rapidly throughout her body. "They took out the middle lobe of my right lung, my appendix, my spleen, and part of one of my kidneys," she said. "It went everywhere. It was through my bones."

Kathy took experimental medications not yet tested in children to try to get rid of the tenacious infection. After months of treatment, the aspergillosis still wasn’t cleared, so Kathy was sent home to Idaho with medication. "They didn’t really think I was going to make it at that point. They figured either the aspergillosis would take over, or the leukemia would come back, and they wouldn’t be able to do a transplant," she said.

Astonishingly, the aspergillosis eventually formed scar tissue around itself and ceased to be an issue. Her leukemia never returned.

Unsurprisingly, Kathy’s childhood experience led her to a nursing career. "I remember how supportive and loving my nurses were. They were definitely patient advocates," she said. Kathy, now 25, works as a labor and delivery nurse at a Seattle area hospital. "It’s perfect. It’s exactly where I’m supposed to be."

When Kathy moved to Seattle in the past year, she sought follow-up care through the Survivorship Clinic. "It was very helpful," Kathy said. "My provider was able to get me in contact with everyone I needed. It was great to have recommendations about who to see—specialists familiar with cancer survivors."

Kathy found it helpful to talk through her concerns. "There are some doctors who don’t really listen to you, but the Survivorship Clinic felt very supportive. It gives me peace of mind to have a plan."

Kathy was referred to a specialist for reproductive testing. "I wanted to have realistic expectations before ever trying to have kids," she said. "They said everything looks normal." She has high blood pressure from her cancer treatment, as well as osteonecrosis in her joints (parts of her bones did not get blood and died). "I might need to have joint replacement some day, but for now, it’s not anything I can’t live through," she said.

Aiming for optimum health in the decades ahead, Kathy tries to eat healthy and exercise. She also carefully watches her skin after having moles removed.

Kathy said surviving childhood cancer helps her to not take things for granted, and it’s also made her more aware of her body. "With leukemia, the concern is secondary cancers, but I’m trying not to live in fear," Kathy said. "If it happens, I’ll deal with it. Having my health monitored definitely lessens that worry."

Fred Hutchinson Cancer Research Center is a world leader in research to prevent, detect and treat cancer and other life-threatening diseases.