Chronic myeloid leukemia survivor
- Diagnosed with CML in 2004
- Gleevec moved CML into remission
- Cured with bone-marrow transplant in 2004
It may have been the worst April Fools’ joke ever; Valerie Johnson was diagnosed with chronic myeloid leukemia (CML) on April 1, 2004
“I went in to see my doctor for an annual physical,” Valerie recalls. “I was very excited because I’d lost 20 pounds. And in the general blood work they found that my white blood cell counts were super high.”
Powerful network of care
Living in Sequim, Wash., Valerie’s doctor sent her to a Seattle hospital to stabilize her disease. The drug called Gleevec put the cancer in remission. Then she made a choice to have a bone marrow transplant. Valerie then went to Seattle Cancer Care Alliance (SCCA) for a two-week evaluation to see if she would qualify for a transplant.
“The SCCA staff…you’ll never find anyone like them,” Valerie says. “You have a need and they fill it before you even ask for it. You have a question, they have the answers. They are so dedicated to their patients and try to not let fear set in.”
One of Valerie’s sisters’ bone marrow was a perfect match and she had her transplant on Aug. 25, 2004 at UW Medical Center.
Valerie spent a month at the SCCA inpatient hospital at UW Medical Center and then lived at a friend’s in Bellevue for two months while recovering from her treatment. Her friend actually quit her job to care for Valerie since her husband had to stay in Sequim to work.
“It wasn’t easy during that time,” Valerie says. “I developed cytomegalovirus (CMV) before I went into the hospital, but after the transplant it went full bore.”
CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. If diagnosed during transplant, it silently attacks the lungs.
After her 100 days after transplant, Valerie returned to Sequim and realized she was under the care of five doctors who were all working for her, looking out for her…caring for her. “And they all talked,” Valerie says. “My doctors in Sequim and at Olympic Medical Cancer Center talked to the doctors at SCCA. And I only have to go back into Seattle if there’s an issue. I am so grateful for SCCA and the medical staff at Olympic Medical Cancer Center, and of course, my sister Linda Kerns, to have a second chance in life.”
Olympic Medical Cancer Center joined the Seattle Cancer Care Alliance Network uniting their goals to provide the best cancer care available.
The clinical cancer care network at SCCA provides community-based physicians throughout the Pacific Northwest with access to the latest cancer diagnostic and treatment information including the latest clinical research protocols, current cancer care treatment guidelines, rapid second-opinion service, support in the development and use of research-based treatments at community sites, continuing medical education and training for community physicians, and current publications and research overviews of phase I, II, and III clinical trials.
Staying home for nearly a year after her transplant to avoid compromising herself because of her weakened immune system, Valerie says “it took a village to care for me. My husband had to do a lot of the nursing and had to work at the same time.” Valerie’s daughter and additional family and friends stepped in as well, giving a lot of their time to be there when she needed them.
Valerie now sees Dr. Mary Flowers at SCCA as part of the Long-Term Follow-up Clinic since having her transplant. “Dr. Flowers is amazing,” Valerie says. “She has the answers because she’s been an expert for so long.”
After being cared for by the medical staff in Seattle and Sequim, Valerie says, “it gave me the positive energy I needed to heal. I never felt alone and nobody should.”
In return, Valerie wanted to give other cancer patients and survivors the same positive energy. She has made it her mission to help facilitate the first women’s cancer support group at Sequim’s Olympic Medical Cancer Center. “Helping others on this cancer journey is so rewarding. We celebrated the group’s first year and the attendance calls for a larger conference room!” she says.
In addition to her support group work, once a month, Valerie hand-delivers Jake’s Crew “Life is Good” caps to cancer patients at Seattle Children’s. “Those kids are running the race to win,” she says. She’d love to work with SCCA patients as a support leader to show people how much easier they can make their transplant experience for themselves.