When Shauna was diagnosed with MDS, she knew she would have to leave her home in Alaska for treatment. She chose to move to North Carolina where her extended family lived. With access to specialists there, and having a supportive network, this proved to be an excellent plan.
Shauna began the ATG protocol in 2016. After completing this treatment, she remained transfusion-dependent. Yet she never gave up. Then, in September, 2017, she began a treatment regimen with Decitabine. This regimen lasted for a full year. Then she was prescribed Cyclosporine, but she was still transfusion-dependent in 2019, requiring blood in 8-10 week intervals.
In 2017, Shauna took action to live life to the fullest, no matter how long her life would be. She entered the Ms. Full-Figured North Carolina Pageant, winning 1st runner up Ms. Exquisite Full Figured North Carolina!
The pageant required a regular commitment to volunteering. Not to be underestimated, Shauna signed up with the local Volunteer Fire Department. She studied and earned certification in Fire Fighting, and subsequently earned her EMT certificate as well. Whether fighting fires on the front line, providing emergency care, or assisting with clerical tasks, Shauna became a valued member of this volunteer-only Fire Department.
While waiting for a new drug approval (Reblozyl) she was monitored carefully by her specialist. On the verge of qualifying as Intermediate-Risk MDS, she began eating a healthier diet and simultaneously experienced menopause. She needed fewer transfusions but remained transfusion-dependent.
Then, in 2020, Shauna got sick. She assumed it was Covid (during the height of the pandemic,) but pneumonia caused by a staph blood infection with a pulmonary embolism was the cause. Treatment required hospitalization in crisis care. Eight days, two transfusions, and many antibiotics later, she was allowed to come home with IV antibiotics for three more weeks.
After this crisis, Shauna’s blood counts returned to a more normal state. With monthly counts of 10-12, she began seeing her specialist only annually. Although Shauna still had bone pain, treated with painkillers, she suffered less from fatigue. She returned to a more regular, predictable, life.
Shauna’s journey to remission suddenly became essential. Her father had a medical crisis, “he coded,” she said, becoming his caregiver after his 163-day hospitalization. His health improved somewhat between January and October 2024, so her caregiving role shifted to support. She also helped in caring for her grandchildren. She served other roles at the Volunteer Fire Department, becoming a trainer and clerical volunteer.
Shauna was once told her life expectancy was only two years. She told her doctor, “If I’ve only got two years, I’m gonna make it the best two years of my life!” That was in 2015, nearly 10 years ago at the time of this posting.
What should other patients remember after diagnosis? When telling her own story, Shauna embraces living with no regrets. She's proud of herself, wanting to make her family proud. She refined what was important to her. Knowing she is in remission but not cured, she continues to make each day count. She says it’s never too late to turn your life around, but most importantly, “Never lose faith!”