How Giving Back Changed for Steve Hodges After A Leukemia Diagnosis

When Steve Hodges retired at the end of 2015 after 42 years in the corporate world, he dedicated his time to giving back. He was a hospice volunteer, and he helped people with dementia reconnect to their pasts through song. He enjoyed life with his wife, Pat, and their grandchildren. 

But in June 2022, Steve was unexpectedly diagnosed with acute myeloid leukemia (AML), and how he spent his time was about to change.

Embracing the present moment

Due to aggressive mutations, Steve’s AML required intensive treatments including two months of ablative and followed up with non-ablative chemotherapy, then a bone marrow transplant. After his transplant, Steve experienced severe graft-versus-host disease (GVHD) with multiple complications including sudden onset diabetes, adrenal insufficiency, skin cancers, a worsening of existing cardiovascular conditions, hearing loss, accelerated prostate cancer and persistent severe immunosuppression, with multiple hospital stays. While managing his health is a major part of daily life, Steve and his devoted wife and caregiver refuse to focus only on his illness. 

He takes inspiration from an older friend and North Carolina Symphony retiree who recently transitioned to a skilled nursing facility. Despite declining health, his friend models the power of focusing on the beauty in the present moment. 

“One hundred percent of the communications I have with her [...], are how great the lunch was that she just had, how beautiful are the flowers after all this rain, and the one I’ll never forget:, ‘A beautiful sunbeam just came through the window and landed on my lap.’ Despite few remaining physical capabilities, she is truly present in each moment.

HealthTree: Steve’s guiding light

Early in his diagnosis, Steve and his wife Pat discovered HealthTree, which quickly became a centerpiece of his survival and care. Through HealthTree’s short educational videos, ASH conference updates, webinars from notable physicians, personal health record data tracking, Patient Navigators, and Gather community events, the platform provides the tools and connection they need to navigate complex care. 

“The [personal health record has] a dynamite effect on the community,” Steve said. “I’ve got my records fully attached, because I know that clinicians and researchers look at the [health records] in order to fill out volunteers for clinical trials that are critical to develop new treatments for many.” 

Learn more about creating your Personal Health Record with HealthTree

Paying it forward as a HealthTree Coach

Wanting to support others walking a similar road, Steve trained as a HealthTree Coach. Drawing on his hospice volunteer background, he provides compassionate support to fellow patients, helping them advocate for themselves, ask the right questions, and seek second opinions. He plays piano for the Hematology/Oncology and Bone Marrow Transplant units. For Steve, helping others keeps him thriving.

“The volunteer work gets me out of the black hole that is my own medical issues, because if I sit and focus on my own medical situation, you know, it’s a black hole. You fall in there and never climb out,” Steve said. 

Find a HealthTree Coach

Steve’s advice for people with leukemia and their families

If you or a loved one have recently been diagnosed with leukemia, Steve suggests: 

• Learn about your diagnosis: Build a solid understanding of your diagnosis using trusted patient-first platforms like HealthTree. 

• Prepare for appointments: Medical visits are often short. Keep a running list of questions ready for your doctors, PAs, and nurses.

• Report every symptom: Never hesitate to share what you’re experiencing, no matter how minor it seems. 

• Lean on peer support: Connect with a HealthTree Coach who has walked in your shoes to help demystify the road ahead.

• Honor your caregiver: Recognize that loved ones carry a heavy emotional weight and need support too. 

Though life after a cancer diagnosis looks vastly different than expected, Steve’s story is a powerful reminder that adapting, serving others, and treasuring the present moment can illuminate even the darkest paths.