The recommended treatment was to allow the patient’s body time to reset itself.
“We were thrilled that it was a minor ailment, not a long-term impact diagnosis,” said Lucas’ mother, Sara Telfer.
But to the Telfers’ dismay, time did not heal Lucas. His tremors increased and new symptoms appeared. He lost the ability to walk, his eyes movement became erratic and his speech regressed. Additional testing resulted in a new diagnosis. Lucas had neuroblastoma, a pediatric cancer. His body’s immune system fought the cancer but, in the process, also attacked his brain, causing opsoclonus myoclonus ataxia syndrome, or OMAS. OMAS is an autoimmune disorder that can be triggered by a tumor or neuroblastoma.
Sara and Gavin Telfer realized that whole blood would be used during their son’s surgery to remove his tumor and that Lucas would need IVIG treatments for the foreseeable future.
“All we really knew about it was it was a blood product,” said Gavin, Lucas’ dad. “At that same time, you hear about shortages of blood and plasma. IVIG is made predominantly out of plasma donations. That was probably the moment we really started to pay closer attention and to do a little bit more research.”
Sara added, “That was going to be a big part of his life and his story. That really drove the point home for us. A lot of people were asking how they could help. We couldn’t think past tomorrow, in terms of how people can help. But blood donations felt like a very tangible thing. We’d ask, ‘Can you donate blood? Can you donate plasma? Can you do platelets?’”