Inspirational Stories

Jess began volunteering with The Leukemia & Lymphoma Society (LLS) in February 2021. Jess is currently pursuing her Patient Advocacy Certificate and found an opportunity to join LLS as a volunteer to gain more experience working with the Patient and Community Outreach Department. Although she is a newer LLS volunteer, her journey to finding her passion for patient advocacy started seven years ago. In 2014, Jess was diagnosed with myelodysplastic syndrome (MDS). MDS is more common in men than in women. Most cases of MDS are found in people in their 70s or 80s and are uncommon in people younger than 50. Jess was only 37 at the time with a four-year-old and an eight-year-old at home. She learned she would need a stem cell transplant and was fortunate enough to have not one but both of her brothers as a match. Jess shared that there is only about a 25% chance for siblings to be a match. Her younger brother became her donor, and on July 15, 2014, Jess had her transplant.

Jess described herself as “lucky” in the transplant world. She had great support from her family and was in good shape as she headed in for her operation. She had few complications following her transplant, however, she still found herself in the hospital for a month. Jess’ positive attitude and determination made her give herself a challenge for her time on the transplant floor: walk three miles a day. She described the transplant floor as a hard place to be with people fighting for their lives. So, Jess decided to use her daily walking goals as a mental escape.

Following her recovery, Jess wanted to share her experience and offer support to other transplant recipients. She began connecting with other young recipients through her friends and family which led her to start volunteering at the Oregon Health Sciences University where she received her transplant. With the goal of giving back, Jess worked to create the Movement Program inspired by her own experience walking the transplant floor and a similar program at another hospital. The program inspires patients to make small goals to keep moving during their time in the hospital and celebrates their achievements with stickers and colored bandanas to decorate their rooms.

Jess has loved her experience with LLS and finds her patient and family outreach work super rewarding. She helps inform patients about the services available and oftentimes shares her own experiences when applicable. Jess has participated in educational programs through webinars and is excited to continue giving back through LLS.

Written by LLS Story Volunteer, Lindsey DiCesare