On December 4th, we took Hayes to Wolfson Children’s for what appeared to be a nerve injury. He was weak on the right side and having trouble gripping. After hours of tests, an MRI showed a mass in his spinal column along the back of his neck. The tumor was putting so much pressure on his spinal cord, it was causing weakness on his right side. He was scheduled for surgery the next morning to remove the bulk of the mass. The tumor was believed to be a benign neoplasm the doctors had seen before and even the biopsy during surgery came back benign.
On December 9th, 2017 Hayes was diagnosed with Chordoma. Chordoma is diagnosed in just one in one million people. Less than 5% of those cases occur in children.
Chordoma is a type of cancer that occurs in the bones of the skull and spine. Chordoma tumor cells arise from cells of the notochord, a cartilage-like structure that acts like building blocks for the development of the spine during fetal development. Chordoma is part of a family of cancers called sarcoma, which includes cancers of the bones, cartilage, blood vessels, muscles, and other connective tissue.
Hayes will travel across the country for specialists to review his case and determine the course of treatment.