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Sep. 30, 2022

TOPIC: Patient Stories, Voices of Rare Cancer

Honoring Steven Matthews This Rare Cancer Day

Posted by Rohan Narayanan

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.

The Chondrosarcoma Foundation is sharing the story of firefighter Steven Mathews in honor of Rare Cancer Day.

Steven Allen Mathews was born in Athens, Georgia on December 25, 1976, and spent most of his childhood in Oglethorpe County. Upon graduating from high school, Steve enlisted into the United States Air Force, where he spent his time as a diagnostic computer technician for the defense program working on the B-2 Stealth Bomber. He served four years on active duty and six years in the reserve. 

After leaving the Air Force, Steve worked for Bell Atlantic/Verizon for 10 years before returning to Oglethorpe County. He then enrolled in technical school, where he graduated as an Advanced EMT. While in technical school, Steve met his wife, Beth Shook in 2011, and they married in 2012. During the 9 wonderful years Steve and Beth were married, they had two amazing boys, Tucker and Parker. He joined the Gwinnett County Fire Department in 2012 and served there for eight years before his diagnosis. 

Steve was diagnosed with chondrosarcoma in February of 2020. His first surgery in March of 2020 removed a tumor from his left hip, as well as replacing his left hip, femur, and knee. Steve had to undergo a second surgery to remove affected lymph nodes. When he went for his three-month scans, the cancer had returned in the left leg and had metastasized to his lungs. He was referred to a medical oncologist and immediately started a clinical trial on the medication, Tibsovo, which had no effect. 

The next option was chemotherapy, and Steve began treatments of Ifosfamide in September 2020. By January, the tumor was so large, and the pain was so severe, he had to have his left leg amputated. The tumor had also grown into Steve’s abdomen, forcing the doctors to remove part of his intestines. Next, he began taking the clinical trial drug, Votrient. In April, he was informed he had kidney failure because the cancer had grown around his ureters. He had to undergo another surgery to insert nephrostomy tubes. The oncologist then tried immunotherapy, but despite this effort, Steve declined rapidly. On June 12, he was rushed to the hospital because he was incoherent and had severe pain and passed away the next day. 

Steve was a man of faith and a fighter who loved his country, sports, outdoors, and friends, but most of all his family. He impacted many people through his kindness and compassion for others. He was a dedicated public servant with an amazing work ethic. He was respected and loved by all who knew him and will forever be missed. His goal and determination after diagnosis was to pay it forward and bring awareness to soft tissue and bone cancers. 

The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD here.