A small bump appeared next to Justin’s left nostril in the fall of 2020, his senior year of college. Within a few weeks he was diagnosed with stage one, group three, embryonal rhabdomyosarcoma. At the time of diagnosis, the cancer was confined to the area between his nose and the roof of his mouth. Unfortunately, his cancer did not respond to chemotherapy, and he ultimately endured 22 rounds of chemotherapy, 33 rounds of proton radiation, two radical resections of his upper jaw and palate, before attempting five additional targeted medications (monoclonal antibodies and inhibitors). In the fall of 2022, after two full years of treatment, and approximately 275 nights in the hospital total, Justin enrolled in a CAR-T trial, which was unsuccessful. In the spring of 2023, he was told there were no options. So, he enrolled in hospice and ultimately died from rhabdomyosarcoma at the age of 24 on March 23, 2023.
As a senior in college at Asbury University, Justin noticed a small bump next to his left nostril. He was busy applying for graduate school and attempting his third bid for nationals as a collegiate distance runner. He visited a campus doctor, who initially treated for a possible infection with antibiotics. A few weeks later he was diagnosed with embryonal rhabdomyosarcoma located in the nasopharyngeal area. He was 21 at the time. While he was initially diagnosed at the Lexington Clinic in Kentucky where he was attending college, he was ultimately treated at Cincinnati Children’s Hospital. He underwent extensive staging at Cincinnati Children’s, including bone marrow biopsy, sentinel lymph node biopsy, and removal of suspicious spots in his lungs for examination.
Justin continued to complete his final college courses while he began a rigorous course of chemotherapy (vincristine, dactinomycin and cyclophosphamide, also known as VAC). After four rounds, it was determined that his tumor had grown under treatment. It was like a gut-punch to find out that the treatment had been ineffective. His team switched to a more aggressive chemo regimen of doxorubicin, etoposide and ifosfamide. After one round, the tumor was surgically removed in a procedure known as a maxillectomy, which resulted in seven days in ICU at University of Cincinnati Medical Center. In the spring of 2021 and just three weeks after this dramatic surgery, Justin graduated from college to a standing ovation of his peers. Following the surgery, Justin was prescribed additional rounds of this protocol along with 33 proton radiation treatments to the area. Ten months after his initial diagnosis, his doctors declared him NED (No Evidence of Disease). Unfortunately, two weeks after the end of treatment he developed a high-grade fever which resulted in a 21-day hospital stay. He was ultimately diagnosed with a fungal infection that had invaded nearly every organ and muscle in his body, including his lungs.
At the time of the resection, the medical team pursued genomic sequencing, which revealed a TFCP2 mutation. This mutation has been found to be highly resistant to treatment in other patients, so his medical team pursued an aggressive maintenance therapy of six months of irinotecan and temozolomide, along with the drug Lorlatinib to specifically target his tumor. He began this treatment in the fall of 2021. He felt well enough to begin coaching a local high school cross-country team and he returned to work at a local autism clinic as a small group instructor, which gave him an enormous sense of purpose. Optimistic about his future, Justin applied and was accepted to Xavier University in their License in Mental Health Counseling program.
Ten months after he was declared NED, Justin relapsed for the first time at the site of the original tumor. His medical team immediately went back to work on this stubborn local relapse, and Justin endured a second maxillectomy, this time leaving him with only one tooth on his upper jaw. The team was able to secure clear margins, which provided him with a great deal of hope. This second tumor underwent extensive testing, and his team tried three unique combinations of drugs, with no impact.
So, in January of 2023, Justin agreed to attempt a Phase One CART trial at Seattle Children’s Hospital. A lifelong fan of the Seattle Seahawks, he soaked up as much joy as he could by attending two home games and meeting several of the players. Unfortunately, the trial was not successful for Justin, and he was given weeks to live. He returned home in the spring of 2023 to Hospice. He spent every moment he had left by spending time with the people he loved. Justin died from rhabdomyosarcoma on March 23, 2023, two years and four months after his diagnosis at the age of 24.
Justin approached his cancer diagnosis and treatments with persistence, faith, and fortitude. He was determined to live his life to the fullest throughout the entire ordeal. Not a fan of being called a hero or a warrior, Justin attempted to just “do the treatments” and keep living his life.
In the fall of 2021, when he learned he was in “remission”, he openly shared with his friends and family on social media that he was “incredibly grateful for every single prayer, conversation, text, gift, donation and call that helped him”. He knew the journey wasn’t over yet, but he also assured his friends that the one thing cancer could not take from him was his smile, despite having most of his teeth removed along with his tumor. Even with an incredibly optimistic mindsight, he admitted that the whole situation was quite difficult. In the fall of 2022, when he relapsed for the second time, he wrote this in his personal journal:
“It’s back. Again.
I know I hardly share about what cancer treatment has been like, but since I was told I was in remission a year ago, it’s come back twice. I’ve tried my hardest throughout my fight with cancer to stay positive, to pour into others the way I’ve been poured into, but some days I realize I’ve got nothing left to pour out. As an optimist, I’m trying my best to see the good in this, but there is no good in cancer. It takes and takes and takes until I’ve got absolutely nothing left to give.”
After a frank conversation with his oncologist, in which he learned that he would unlikely survive rhabdomyosarcoma, Justin once again wrote his heartfelt thoughts in a journal, but this time with a sense of determination to live his life with an intense sense of purpose:
“There is no cure…nobody is giving up, but it was also made clear to me that unless someone discovers an outright cure for rhabdo, I’ll die in a few years. I refuse to let that news break me though. Life is only worth living if you make it worth it. Right now, I vow to live every single day I have left to the fullest. I vow to love with my whole heart, laugh with every ounce of air in my lungs, run ‘til my legs give out, and squeeze every drop of goodness out of this load of lemons life has dropped on me…”
True to these words, Justin lived every single day to the fullest. He committed to donating his tumors to medical science, spent his days with those he loved most, kept on laughing every day, and even planned a picnic for his family less than two days before he died.
For most of Justin’s treatment, he maintained a strong focus on his initial career calling: advocating and teaching those on the autism spectrum. He didn’t initially feel called to advocate for better treatments for childhood cancer. However, having some experience with social science research, he inquired about research efforts for rhabdomyosarcoma, and became determined that his own tumors would be used to further the field. So, he donated tissue samples and participated in ground-breaking trials for the disease. After learning that he only had weeks to live, he became angry and cried. He shared his deepest frustration with the lack of fairness regarding the lack of overall focus to find more effective, less toxic treatments for childhood cancer in general, and specifically rhabdomyosarcoma. His biggest concern was not for himself, but for the younger children and their families who face this terrible disease. As a result, he asked to have Spoon’s Arc created to raise funds and invest in research that could help lead the way in providing hope for future families and children impacted by the disease.
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A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
Two charities with one mission.
Alice’s Arc: Registered in England & Wales
Charity Number : 1164253
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