After a huge growth spurt, we noticed our 16-year-old’s shoulder was quite a bit higher than his other one. We took Justus to an orthopedic doctor who confirmed scoliosis, but asked for us to get an MRI to rule out anything more serious.
The afternoon after the MRI, the orthopedic doctor called to tell us Justus had a suspected chordoma of the clivus. I had never heard those two words before: chordoma and clivus. I grabbed a crayon that was nearby and a scratch piece of paper and wrote them down. The surgeon then told me if it was his son, he would take him to MD Anderson to be looked at. I instantly felt a blow to my gut because I knew what MD Anderson meant…Cancer.
At the time I had no idea of the severity or rarity of this tumor. I wish I would have never asked Google about this cancer that only affects one-in-a-million because I felt our world shift underneath my feet. I am sure between my husband and myself, we could have filled an ocean with our tears. We felt alone and didn’t know what to do.
I reached out to the Chordoma Foundation, who began sending me information. They also put me in touch with a Facebook group of other chordoma patients or family members of people who had been diagnosed with chordoma. It made us realize that even with a one-in-a-million cancer, MANY people are affected by it. I also saw many people affected by it differently, which really didn’t comfort me at all. At the same time, I was thankful that there were so many people who understood what we were going through.
We were able to get into MD Anderson after a couple of weeks had gone by. They explained the severity of this chordoma and the importance of the surgery. Our surgeon told us he really had only one shot to get it all for the best long-term prognosis. My husband asked him the what-if questions, which I was too afraid to ask. The surgeon looked at us and said, “Five years ago the surgery that I am going to do on your son wasn’t even possible, when we get to that what-if stage, who knows what will be possible!” For the first time in weeks, I felt HOPE.
Sixteen days after that orthopedic doctor called me, Justus underwent a fourteen-hour surgery. It was the longest, most grueling day of my life. We trusted that Justus was right where he needed to be and had faith that ultimately his life was in God’s hand. The surgeon got all of the tumor out.
Then Justus underwent seven weeks of proton therapy to make sure no microscopic remnants of the chordoma were left behind. The proton therapist doctor told me once that even though chordomas are a one-in-a-million cancer, half of his patients had been treated for them. It just confirmed to me the importance of seeing chordoma specialists, which is the very first thing the Chordoma Foundation told me.
Justus has to go back every 4 months to make sure this chordoma doesn’t return. We asked his surgeon what we needed to do to make sure Justus has the best outcome of life. He told Justus to enjoy every minute of life. It has been two and a half years since Justus’ chordoma was removed and there hasn’t been recurrence. He still has some pain in his neck and still gets headaches, from time to time. It doesn’t stop him though, he just completed his first semester of college on the Dean’s List. He rock climbs, goes out with friends, and appreciates his time with family. He is doing just what the doctor ordered — living life and enjoying every minute of it.
We invite you to share your Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. And if you need help navigating any part of the chordoma diagnosis, treatment, or survivorship journey, contact our free Patient Navigation Service.