A letter from Harper's family
In Loving Memory of Harper Marie – Forever 15, Forever Strong
“It is with broken hearts that we share the passing of our beautiful daughter, Harper, who left us on May 12, 2025, at just 15 years old, after a courageous battle with cancer.
Although her time with us was far too brief, Harper, a bright, kind, and fiercely determined soul, met every challenge with grace, laughter, and grit far beyond her years. Her compassion touched everyone who knew her. She approached each day with unwavering hope, an infectious smile, and a desire to make the world a better place, especially for other children battling illness.
Throughout her journey, Harper became a passionate advocate for childhood cancer awareness and support. Even during her toughest moments, she dreamed of helping others. That dream became the Harper Strong Foundation, in which she helped inspire and shape with her vision of hope, kindness, and her giving heart.
While we are devastated by her loss, we are also incredibly proud. We are proud of who she was, proud of what she stood for, and proud to carry her legacy forward.
The Harper Strong Foundation will continue in her honor, supporting families, supporting other non-profits that supported us, bringing smiles to children’s faces, and spreading the light she so brightly shone in her brief but powerful life.
To those who walked this path with us, thank you. Your love, prayers, and support gave us strength when we had none left. And to those who continue this journey with us, we invite you to help us honor Harper’s life by carrying her mission forward.
Let us not remember only the pain of her passing, but the power of her purpose. She may be gone from our arms, but never from our hearts.
With love and gratitude,
The Mathis Family
Justin, Shellie, Payton, and our beloved angel Harper”
Harper's Journey
Before Harper was diagnosed, she was extremely outgoing. She was an avid soccer player, with a fierce attitude and a very competitive nature. She earned the nickname “beast mode” when playing, because she always turned it up a notch when she hit the soccer field. Harper is funny, sweet, charismatic and full of pure goodness. Harper is a girl’s girl who loves going shopping, getting her nails done and hanging out with her friends. She has a group of friends that she calls her “besties” that she still holds close to her today. Harper’s caring, loving, giving and genuine spirit are the many things that people love about her.
Harper’s story began in May of 2020, at the age of 10, when she started sporadically vomiting. After 7 weeks of pediatrician visits, referral to a gastrointestinal doctor and 2 trips to the emergency room, it was on that second emergency room visit that the resident doctor had noticed fluid buildup in the back of her eyes. He ordered an MRI of her brain. After her MRI, on July 9th, 2020, we were given the news NO parent should EVER have to hear…” Your child has a brain tumor.”
Before and after Harper’s surgery, the hospital showered her with gifts such as Legos, arts and crafts, games, stuffed animals and blankets. These gifts kept Harper occupied during her hospital stay and kept her mind off what was actually going on around her. After the removal of her tumor, pathology came back with the diagnosis of Medulloblastoma, a form of brain cancer affecting around 500 children in the US every year. She started radiation 4 days before her 11th birthday. Because of the side effects of the radiation, Harper ended up needing a feeding tube. This happened the day before Thanksgiving. As a result, we ended up spending the holiday in the hospital. Once again, the hospital’s Child Life Specialist Team showed up with more gifts to take her mind off being in the hospital during that holiday. Harper then completed 30 rounds of radiation and 9 cycles of chemotherapy. Her chemotherapy cycles required her to go inpatient for 5 days during each cycle.
In September of 2021, Harper completed her treatment; we were overjoyed. She was able to go back to school in person and had just started to get back on the soccer field. Unfortunately, that joy was short lived. In April of 2022, at Harper’s 6-month post treatment MRI, she had relapsed. This relapse was intense, as she had now developed 7 new tumors and Leptomeningeal disease throughout her brain. As you can imagine, we were completely devastated. With no known cure for Medulloblastoma relapse, we were given the option of the standard relapse protocol (with no guaranteed success) or to enter a trial. Unfortunately, the only trial that was new and innovative at that time was in New York City at Memorial Sloan Kettering.
After much research and many meetings with the doctors at Memorial Sloan Kettering, Harper entered the trial. She was actually patient number 1 and, believe it or not, we were comfortable with that. It felt like it was meant to be. Harper entered this trial with the hope that, even if it wasn’t successful for her, she might be the one to make a difference in another child’s life. Harper had to undergo her second brain surgery to get an ommaya reservoir placed in her brain. This would allow the doctors at Memorial Sloan Kettering to inject liquid radiation directly into Harper’s brain. As intense as the procedures were for us to watch and her to endure, she handled them very well and with minimal side effects. After 2 injections of radiation and 9 months of high dose chemotherapy and continued tumor progression, we opted out of the trial and came back home.
In July of 2023, Harper enrolled in the Indoximod trial in Cincinnati, Ohio. This trial consisted of oral chemotherapy and oral immunotherapy medication. When considering “what to do next”, it was important to Harper that she wasn’t “hooked to a machine”. Harper wanted to go to school, hang out with her friends, and do typical teenage girl things. She was in that trial for 4 months when her disease continued to progress. At that time, they moved her to a salvage regimen. This included adding 2 additional chemotherapy drugs. In January of 2024, after 3 months on the salvage regimen, Harper developed 3 additional tumors; thus, making her ineligible to remain in the trial, due to the extensive progression.
At this time, we felt completely defeated. What do we do now? We insisted that our team at Cincinnati reach out to Dr. Johnson who is the creator of the Indoximod trial to see if he would be willing to take on Harper’s case through compassionate care. Within 24 hours, we had a teleMed call with Dr. Johnson and his team and went over Harper’s MRI. Dr. Johnson didn’t hesitate at all to welcome Harper into the trial. In fact, he had an additional trial in mind that added an additional immunotherapy drug along with everything else she was already taking. So, to us, this was the best option for her, and Harper was 100% on board. In March of 2024, she started treatment with Dr. Johnson in Augusta, Georgia. In July of 2024, Harper received her first stable scan. Then again in September of 2024, another stable scan.
Unfortunately, in October Harper experienced what we believed may have been her first seizure. Things began to progress rapidly after that. Her seizures didn’t present like most epileptic seizures. Instead, she would begin slurring her speech, her face would droop, and she would lose mobility.
We made our last trip to Georgia in January, and when we returned home things began to increase. After another MRI, we received the difficult news that the progression was significant and that it was time to begin multiple seizure medication daily.
As a family, we knew exactly what was ahead of us.
Meeting with both teams of doctors and hearing the word “hospice” was incredibly difficult. But Harper was our voice of reason. She was not scared.
She didn’t waver in her faith or in her decision. Harper told us she was done.
As parents, we spent five years exploring different treatment options to give her the best life possible—and I truly believe we did. During that time, we made it a point to grant her some beautiful wishes and spend meaningful, quality time together with family and friends.