Meet Story Teller
Matt Tullis, Age 41, from Apple Creek, Ohio and now lives in Sandy Hook, Connecticut
Sidekicks Then: Theresa Brodkin, nurse manager in the 6500 unit, Dr. Alex Koufos, mom and dad.
Sidekicks Now: his wife, Alyssa, son, Emery (13) and daughter, Lily (10)
When he’s not busy overcoming obstacles: Matt enjoys writing, running and spending time with his family.
Did you know fact: Matt is a cancer survivor and has written the book, Running With Ghosts, about his experience and the people who impacted his life during his cancer journey.
Why Matt is a #ACHero: Matt was diagnosed with acute lymphoma leukemia (ALL) in 1991 and spent more than 2 years in treatment at Akron Children’s. Now an accomplished writer and father of 2, Matt is stronger for the journey and serves as an inspiration to those fighting the disease.
Matt’s Story: Matt Tullis will be the first to tell you he’s never been the same person since Jan. 2, 1991. He went from being a typical high school freshman to a teenager with cancer overnight.
“For the longest time I wanted to be who I was before I was sick and it’s taken me years to realize that’s completely impossible…but it’s not a bad thing,” said Matt. “The experience and the people I met along the way have shaped my life and my perspective on life in a very profound way.”
Prior to January 2, Matt had mono-like symptoms but, when he passed out at school, his doctor sent him to Akron Children’s for evaluation. Results from a bone marrow biopsy confirmed that Matt had acute lymphoma leukemia. He was admitted to the hematology-oncology floor and remained there for 67 days.
Matt began intense chemotherapy to help destroy his aggressive cancer. By late January, he started getting headaches and then a fever. A CAT scan revealed an infection had developed on his brain.
“Dr. Koufos was amazing,” said Matt. “The whole time I was at the hospital, all I could think about was how badly I wanted to go home. Dr. Koufos worked to get me day passes so I could go home for a few hours and lay on my own bed where no one was checking my vitals. He knew I mentally needed a break …I’m so grateful for his care.”
Matt kept up with his chemo treatments and physical therapy for his cancer and doses of antibiotics for the infection. Finally, in March, the infection was gone so he could go home and start outpatient chemotherapy.
In addition to coming in twice a week for chemo, Matt had 10 rounds of cranio-radiation. The strong combination made it difficult for Matt to concentrate at school so he missed the last half of his freshman year.
That summer, Matt’s pediatric hematologist-oncologist, the late Dr. Alex Koufos, talked him into attending Camp CHOPS where he could have fun and find support from other kids with cancer and blood disorders.
“I absolutely loved Camp CHOPS …I made some really great friends there,” said Matt. “I was a camper my first year and then a counselor from 1992-1995.”
Matt started his freshman year of high school again in the fall of 1991. “I tried to get back to normal…I made the baseball team that spring and got caught up academically so I was able to graduate with my original class in 1994.”
Matt’s last chemo treatment was March 18, 1993. To maintain remission, he came back to Children’s every 12-18 months for checkups until December 1997.
In 2006, Matt attended a cancer survivorship program to have his heart, bones and lungs checked to identify any long-term effects his chemo or radiation treatments may have caused.
As the years went by, so did Matt’s desire to care about his health. He started running in 2012 and lost 40 pounds. In 2013, his wife linked him up with Team in Training which gave him more incentive to run and train for a marathon.
“I chose the Akron Marathon as my first full marathon for a reason; I could see Akron Children’s Hospital at the finish,” said Matt. “When I ran through that finish line, I collapsed. I was overcome with emotion. I thought of all the people who got me through that race – nurse Janet, my friends Melissa and Todd, Dr. Koufos…”
Today, Matt is a husband, father, author, professor and runner who serves as an inspiration to other young cancer patients. His book — Running With Ghosts — is about his experience and the people who impacted his life during his cancer journey. It can be purchased on Amazon.