Chandler, CNS HGNET-BCOR

A Hero in Any Playbook

Chandler Grey is just like any other kid in many ways; he loves Scooby-Doo, playing with Legos and learning about dinosaurs. But, unlike most 8-year-olds, Chandler has a high-grade neuroepithelial tumor of the central nervous system with a BCOR mutation – in other words, a highly malignant and extremely rare brain cancer.

A year prior to his diagnosis, Chandler began showing symptoms including nose bleeds, loss of balance, headaches, lack of appetite and a decline in energy. At first, his doctors saw no overarching illness, until one day, Chandler could not make even the smallest movements without intense pain. He had a fall a few weeks earlier and doctors thought there was a chance he was suffering from a severe concussion. Instead, a CT scan and MRI revealed the brain tumor.

This devastating diagnosis left Chandler’s parents confused, numb and full of questions. Why would this happen to our child? Is it our fault? Should we have demanded more testing earlier on? And most importantly, what do we do now?

Chandler went to Boston, where he had major brain surgery and spent a week in the ICU. The following months were spent with trips back and forth from Maine to Boston to receive proton radiation and intensive chemotherapy treatments. Adjusting to this rigorous schedule of treatment was difficult for the entire family. Chandler’s siblings had needs of their own and had trouble understanding the shift in attention. Chandler’s cancer diagnosis left the family feeling separated and isolated. Despite the confusion, hospital visits, hardships faced, and challenges, Chandler’s parents are determined to stay positive and never give up hope.

Chandler with keyboard“My guy possesses more strength than anyone could ever imagine and backs it up with a positive attitude, a huge smile and a kind heart,” said Chandler’s mom, Kristin Grey. “He has an incredible love for life and everything good it has to offer. His determination to survive is endless.”

Now a year since his original diagnosis, Chandler continues fighting and is still in treatment. Kristin notes that her son is only the eighth person to be diagnosed with this form of cancer, making the treatment process relatively exploratory.

His family hopes for the continued support and research to find a cure for children’s cancer, and Kristin shares the following advice for other families: “Let others help. Allow yourself to cry. Always find a positive, and… don’t take tomorrow for granted.”

Chandler with family

CureSearch research programs are focused on accelerating the development of new treatments for kids like Chandler. To learn more, visit curesearch.org/Our-Research-Strategy

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