Marilee was enjoying an idyllic retirement with her husband John on 36 acres of woodsy quiet property in rural Indiana. While John was embracing his inner farmer, Marilee was exploring pastel painting, happily caring for two of her grandchildren three times a week. She had no idea she was sick.
“I was out painting with one of my friends,” she remembers. “I had a really big bruise on my arm—it just didn’t look right.” After an examination and blood work, the doctor called to tell Marilee that her platelet count was dangerously low and she should go to the emergency room right away.
Marilee spent a week at the hospital where she received a bone marrow biopsy and was referred to an oncologist. But it would be three nerve-racking weeks before she was able meet with the doctor and receive her life-changing diagnosis: chronic myelomonocytic leukemia.
Construction had just begun on Marilee’s art studio. Feeling so weak and with her future so uncertain, she remembers thinking she might never be able to use it. “My doctor told me the only way I’d see my grandchildren grow up was for me to have a bone marrow transplant,” she says. Having gone to church her whole life, Marilee took comfort in prayer. “It’s the realization that you have no control,” she shares. “The doctors can tell you your treatment but they can’t predict your outcome. I prayed a lot—I prayed and I prayed—it was all I could do.”
In September 2017, Marilee’s marrow donor match was found and she received her transplant. Unfortunately, she suffered a very bad (and very rare) reaction so it turned out not to be the day of celebration she had expected. After her condition stabilized, she moved in with her son so she could be closer to the hospital for the critical 100-day post-transplant recovery period.
Marilee wasn’t feeling great, and while she really didn’t expect to be, at a follow-up appointment, she found out why—her donor engraftment had gone from 100% to about 40%. After another bone marrow biopsy, the doctor called Marilee with the devastating news: She had acute myeloid leukemia. Once again Marilee was admitted to the hospital, and once again she required chemotherapy treatment and a bone marrow transplant.
Given Marilee’s traumatic first transplant experience, she was understandably apprehensive. Fortunately, her original donor agreed to donate marrow again and her second transplant went as smoothly as it could—this time she was able to go straight home from the hospital.
During her post-transplant recover, Marilee says she felt foggy and fatigued. She thought to herself, “Will I ever cook again?” Until at one point she just woke up. “I felt like Rip Van Winkle—like everyone around me had had a life and I had been absent for a year and a half.” Marilee finally felt like painting again, feeling more focused and serious about her art. If I don’t do it now, when am I going to do it? she thought. “I’ve been given this time—I should spend it wisely.”
Up until the pandemic, Marilee had been doing her best to make up for lost time, socializing with her girlfriends, cooking, working on her pastels, and spending time with her kids and grandkids. Last November she became a Be The Match® Peer Connect volunteer, sharing her experience with patients and families who are on the bone marrow transplant journey. With leukemia and two marrow transplants behind her, Marilee says she’s able to see beauty again. “At the end of a hard journey, there is good that is there. In hindsight now, I can see it.”
You can help more patients like Marilee see goodness by making a gift to Be The Match® today. To see more of Marilee’s beautiful pastel work, visit MarileeKosterman.com.
