Ty, a rambunctious toddler with curly blonde hair, has an infectious smile.
He never had any developmental delays or medical issues prior to his diagnosis. However, Ty was never a good sleeper. He woke up frequently throughout the night crying, but we could always soothe him back to sleep. We discussed this with his pediatrician and even had him scheduled for a sleep study. After a week straight of increasingly sleepless nights, we took him to the emergency room. He was crying, but couldn’t tell us why. We just couldn’t stand it anymore.
Ty didn’t have any neurological symptoms. The doctors at Cohen’s Children’s Hospital in Long Island, NY didn’t seem very concerned, but they did an MRI anyway. Since his case was not urgent, we stayed inpatient for another night because we were waiting for MRI/anesthesia availability.
Ty slept beautifully at the hospital. We could not wait until the hospital visit was over—hoping to go home looking like silly, worried parents.
We packed up our things and waited to go home. My husband was standing in the hallway when the neurology team headed toward our room. “Is it good? Can we go?” he asked with a smile. “No?” With that he turned to look at me in slow motion and the walls began the melt. The sounds in the room became muffled. The world around us was falling to pieces.
The devil was unveiled on a computer screen, right there in front of us. The MRI image showed Ty’s profile with a tumor, about one inch in diameter, growing from his clivis and pushing against his brainstem, affecting his sleep. Lying down increased the pressure on his brainstem and was causing intermittent head pain.
The following week we traveled to speak with several of the nation’s best pediatric neuro-surgeons. We talked about the different approaches, ranging from cutting through his upper jaw to trying an endoscopic approach through his nose and mouth. We spoke to strangers whose children were going through similar surgeries and followed through on countless recommendations.
Within a week, Ty began to fall apart before our eyes. Ty’s speech began to slur.
He lost the ability to drink from a straw, then from a sippy cup. His head began to hurt all the time. We decided to rush him into surgery with Dr. Steve Schneider at Cohen’s Children’s Hospital just days later. Dr. Schneider, a well-known endoscopic brain surgeon, made us confident that this would be the best approach for Ty.
And so our journey began. We hope you will continue to follow his roller coaster journey here on www.superty.org and like him on Facebook at www.facebook.com/thelittlefighter.
Ty is a fighter.