Two-year-old Jace Spears zipped across his backyard in Fawn, running between the tire swing, the slide and a myriad of tricycles.<\/p>\n
His older brother, Connor, 11, trailed behind, asking Jace about the Spiderman costume he would wear for trick or treat.<\/p>\n
The gravity of the scene wasn\u2019t lost on Jace\u2019s parents, Bryan and Lindsay. Their toddler wasn\u2019t expected to make it this long.<\/p>\n
Jace was diagnosed in 2025 with an atypical teratoid rhabdoid tumor (ATRT), a rare and aggressive cancer that forms in the brain or spinal cord. It primarily affects infants and children under 3.<\/p>\n
\u201cHe\u2019s kickin\u2019 butt,\u201d Bryan said, from their home along Burtner Road.<\/p>\n
\u201cIt wasn\u2019t long ago they told us there was nothing they can do, but he\u2019s made it longer than they thought.\u201d<\/p>\n
Five-year survival rates for ATRT range from 40% to 50%, with lower survival rates in children younger than 3 or cases with metastatic spread, according to the National Institutes of Health.<\/p>\n
More than 90% of cases are caused by a mutation or loss of a tumor suppressor gene. Symptoms can include rapid onset of headaches, lethargy and poor balance or coordination.<\/p>\n
Lindsay Spears first noticed something was off with her son in winter 2025.<\/p>\n
\u201cHe showed some weakness in the right side of his face and he kept tilting his head, but otherwise he was fine,\u201d she said. \u201cWe thought it might be Lyme disease.\u201d<\/p>\n
\u201cThen one day, he stopped walking,\u201d Bryan said. \u201cHe just wanted to be cuddled nonstop.\u201d<\/p>\n
A visit to UPMC Children\u2019s Hospital revealed a diagnosis that shocked them.<\/p>\n
\u201cThey came out and said, \u2018There\u2019s something in his head,\u2019\u201d Lindsay said.<\/p>\n
Jace was put into a medically induced coma while doctors drained fluid from his brain. He underwent surgery, chemo and multiple stem cell transplants. The toddler was in his last month of treatment when he relapsed in 2025.<\/p>\n
The family traveled to Philadelphia, where they stayed for seven weeks at the Ronald McDonald House while Jace received a course of proton radiation at Children\u2019s Hospital.<\/p>\n
\u201cHe did great, just like he had before,\u201d Lindsay said. \u201cDuring chemo, they were telling us to do what we could to keep him comfortable and he was running around. He had no side effects from the radiation either.\u201d<\/p>\n
In September, Jace relapsed for the second time and was taken off his steroids.<\/p>\n
Again, he failed to decline as expected.<\/p>\n
The Spears family has resisted the idea that the cancer returned.<\/p>\n
\u201cLook at him,\u201d Bryan said. \u201cThey\u2019re telling us he\u2019s going to deteriorate but he\u2019s running around and smiling.\u201d<\/p>\n
\u201cI have faith that they\u2019re wrong.\u201d<\/p>\n
Lindsay believes that it could be necrosis, or damaged tissue, causing fluid to build. Jace\u2019s next scan is scheduled in December.<\/p>\n
Until then, he was prescribed medication called Avastin, which alleviates fluid and cuts off a tumor\u2019s potential blood supply to slow any spread.<\/p>\n
Depending on the results, the family is considering a multi-treatment trial in San Francisco aimed at evaluating novel therapies for children with cases of ATRT. It is conducted by the Pacific Pediatric Neuro-oncology Consortium.<\/p>\n
\u201cI was too scared to research it in the beginning but when they presented it as if there\u2019s nothing else they can do, we couldn\u2019t take that as an answer,\u201d Lindsay said.<\/p>\n
The family thanked the community for stepping up to help. Bryan, a truck driver, has been able to maintain his work schedule but Lindsay has had to take a leave from her job at Giant Eagle in New Kensington.<\/p>\n
\u201cThe help from family, friends and strangers has been amazing,\u201d Lindsay said. \u201cIt\u2019s been the only way we\u2019ve been able to get along.\u201d<\/p>\n