Joshua Leon James Milner’s legacy is truly all of us that must remain in this world without him. There never was a light as bright as his and through us it will continue to shine. Throughout his illness, Josh refused to let his diagnosis define him and continued to live his life to absolute fullest; yet another testament to his natural zeal for life.

In 2021, Josh began his journey with clear cell sarcoma (CCS) when he was seen by a dermatologist for a lump on his hand that had been present for years, but he simply considered a cosmetic annoyance. Multiple diagnostic tests were ordered to understand what the growing lesion was and to differentiate it from what was initially thought to be melanoma in origin. This is a common misdiagnosis due to histological similarities, shared immunohistochemical markers, and similar clinical presentations. Only when molecular testing was performed to determine the presence of the specific EWSR1:ATF1 gene fusion, the hallmark biomarker of CCS, was his diagnosis confirmed, and the reality of his condition was realized. His case was transferred to a leading sarcoma oncologist at Winship Cancer Institute in his hometown of Atlanta, GA commencing the fight for his life.

In December 2021, Josh was advised of his treatment options which included simple surgical resection of the mass, partial or total amputation of the fingers or hand, and/or other neoadjuvant and adjuvant options like chemotherapy and radiotherapy, both of which have demonstrated minimal efficacy and impact on patient outcomes. Josh opted for the simplest option, targeted lumpectomy, to ensure that he would continue to have a good quality of life despite what was on the horizon. Josh underwent the procedure complete with skin grafting from his arm to cosmetically repair the tissue loss. In a hilarious turn of events, the skin used from his forearm contained a small tattoo that ended up on his hand and while he was initially angry, he went on to tell the tale to anyone who would listen. With his vibrant personality and passion for bringing joy to others, only he could make cancer funny to quell his friend’s and family’s fears. Lymph nodes were also resected at the time of surgery to determine if the cancer had already spread to the “body’s super-highway”. Fifty percent of the nodes sampled tested positive for the cancer and therefore he was diagnosed as having locally advanced disease, a diagnosis that brings with it high metastatic potential and poorer survival. This was devastating news for those who understood what it all meant, but Josh kept a positive outlook and always stated post-surgery that he was cancer-free. He was not nor would he ever be again.

Throughout 2022, Josh went on with his “cancer-free” life and his radiographic scans showed promise that the cancer was still dormant, being contained to the lymph nodes. In early 2023, however, his cancer came back and true to CCS, it came back with a vengeance traveling to his lungs. His locally advanced Stage III cancer was now confirmed as metastatic Stage IV with multiple lesions and surgical resection of the nodules was the only option offered at the time. Once again, he recovered well and scans demonstrated that the lung lesions were completely removed, however, more were to return in late 2023, triggering yet another invasive surgery. His spirit during this time remained strong, but those who knew him best could see the toll it was taking on his body. More scans, more lesions in early 2024 and Josh knew he had to try something different, something that may stave off the cancer without losing more lung tissue. After consulting with his oncologist in January 2024, he agreed to go on cabozantinib, a life-prolonging drug that had shown great potential in the metastatic CCS setting. Josh responded well for a few months albeit with some side effects that ultimately affected his sense of taste and appetite. His scan continued to look promising as the lesions shrunk, and he went back to his “cancer-free” lifestyle.

In April 2025, Josh began to dramatically lose weight, and a new back pain had emerged, one that would not subside with analgesics or physical/chiropractic therapy. Josh began to withdraw from his social life as his pain grew as he did not want to concern his friends and family. By July 2025, Josh had lost almost 30lbs and he was rushed to the ER to get updated scans. After much diagnostic workup, the scans showed that the cancer had spread…everywhere. His body was ravaged by the disease that had now spread into the abdominal and thoracic connective tissues, spleen, and into his bones which was causing catastrophic fractures. Everyone finally understood why he could not kick the pain, but he remained optimistic that his hero, his oncologist, would find a new solution. He was discharged from the hospital and put on nivolumab, an immunotherapy that was a last-ditch effort to prolong his days. Too little, too late, as Josh’s cancer did not respond, and his body had taken so many hits from which it could not recover.

Throughout July, friends and family provided him round-the-clock home care as his appetite, mind, and body faded. At the age of 48, Josh passed from metastatic CCS on August 10, 2025, surrounded by his loving family. Josh’s memory lives on in those that loved him. His passions were his family and friends, whom he loved fiercely, reading (especially Stephen King, a love he shared with his mother), unbelievably bad dancing, tacos, shed parties, and bourbon. He never missed crashing a girls’ night and somehow mastered the art of hibachi. There was no problem, large or small he wouldn’t help solve. Josh was our champion and our glue – loving, hilarious, and often extremely inappropriate in ways that became some of his most endearing qualities. A celebration of life will take place in Atlanta on October 19, 2025, where all who loved him are welcome to gather, remember, and honor the joy he brought into the world. For ever more, Josh, FSJ!

The Josh Milner FSJ Memorial Campaign

By Clear Cell Sarcoma Foundation

The Josh Milner FSJ Memorial Campaign