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Nicholas DiGuilio


In 2010, when I was 22 years old, I developed the inability to sit for extended periods of time with pain in my lower body. I convinced myself that it was an old athletic injury and that it would go away.

A year later, the pain increased from once or twice weekly to daily. Eventually, I sought out a doctor who was willing to remove my tailbone after looking at an MRI and noticing some localized swelling. Upon removing my tailbone, he found a mass lying underneath it and sent it out for biopsy to the Mayo Clinic. A month later, they called and said that it came back positive as chordoma and that they already scheduled an immediate appointment for me with a specialist in my area.

After that appointment, I didn’t feel very confident, since the practice had only seen chordoma once before. I took the next few days to research and realized I was across the river from one of the most prestigious hospitals, known for saving lives. I quickly made an appointment at Memorial Sloan Kettering with Dr. Boland and his team. I was told that I would have to put a lot on hold in the meantime, but my goal was to make the process go as smoothly as possible, as my time was coming up to be hired as a firefighter after a multi-year wait. On March 12th, 2012, I had surgery to remove my sacrum and any remaining parts of the chordoma.

2024 marks 12 years since my surgery, and nine years of being a career firefighter. No one thought that I would have moved towards my dreams as quickly as I did. My own experience with overcoming that hurdle is one reason that I do not accept subpar work or effort from others around me.

It was really helpful in my journey that I felt a lot of confidence in Dr. Boland and his entire team. They never showed a sign of doubt that they would be successful and that one day I would be back to my normal self.

The most important thing I learned through my experience is that nobody is invincible. I thought nothing like this could ever happen to me. I also was never the type of person to seek help from others because I thought it would show weakness, even though deep down, I knew I needed guidance. This journey showed me how to open up, see other views, and experience things in a new light. Even if you think you're by yourself, you’re never alone on the road to recovery.

The Chordoma Foundation had valuable information and resources on their website, even back when I was diagnosed. Every year they gain more and more insight to share with others, whether they are new patients, long-time patients, or even family members of survivors.

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