Olivia DeJong is a nineteen-year-old living with a rare form of bone cancer called chordoma. Diagnosed days after her birthday and weeks into her freshman year of college, Olivia was constantly caught between classes and hospital stays. Olivia ended her first year of college with a 3.93 cumulative GPA and in partial remission!
What was your cancer diagnosis and how was it discovered?
I was diagnosed with clival chordoma in September 2020, which is a very rare type of bone cancer that occurs anywhere along the spine, which also includes the sacrum/tailbone and the skull base, called the clivus. Symptoms were first noticed in late August of 2020 when my mother noticed my left eye didn't track all the way when I looked toward my left. An appointment with a neuro-ophthalmologist was made and the doctor quickly realized further testing would be necessary. After this further testing, it was concluded that I had a palsy of my sixth cranial nerve, which is actually common in the elderly and those who have had strokes; I was eighteen and had never experienced a stroke, so the doctor ordered a chest x-ray, bloodwork, and an MRI to see if there was an infection/virus or a tumor that could be causing this palsy. Less than three hours after the MRI was taken, we got a call saying that a brain tumor was found, and it was likely a chordoma.
What is the biggest piece of advice you have for newly diagnosed patients?
For newly diagnosed patients, I want to stress the importance of putting yourself first. Normally, I love to help and serve others, and it was really difficult for me to accept the help that was being given to me, both by the medical staff and my church/family/school community. At the time, I was also still dating my high school boyfriend, and it took me months to realize that I couldn't help him cope and process my cancer while I was trying to keep myself afloat. I still feel horrible that I had to break up with him six months post-diagnosis, but I know it was for the best, especially for me. So, be selfish!! Take that nap or day off, eat that snack, talk to whom you want to talk to, etc. At this time in your life, give yourself permission to put yourself first.
What is the most important thing you learned from your cancer experience?
First, I learned so much about what I wanted out of life; before I was diagnosed, I was very agreeable and would make compromises easily; while I am still this way, I am far better at making my needs equal to those around me.
What was the most difficult aspect of organizing your care/community?
Because I was so young (diagnosed two days after my nineteenth birthday), I never had to deal with my community; there were many people that surrounded my family and me that organized a meal train, a GoFundMe, a CaringBridge page, and more. I would say the support that came in was quite overwhelming (and still is!), so I would often feel inadequate of the help and resources I was receiving. However, I would put my younger siblings and parents into perspective; while I had endless food and support in the hospital, my family didn't. So, being able to have that support, even just for my family, was really wonderful and helpful to keep us afloat, especially as my parents trekked back and forth to the hospital every day.
What are three words you would use to describe your cancer experience?
Tireless, long, surviving!
Are there products, services, experiences or physicians that you couldn't be without?
First, my physicians: Dr. James Chandler is my neurosurgeon, and he is just amazing! He's very patient and truly wants the best for his patients. Dr. Gondi, my oncologist, handled my radiation treatments. Dr. Gondi had great bedside manner and was available for me physically and emotionally through my treatment. I also have been treated by an ENT, a few neuro-ophthalmologists, and an endocrinologist, all of which were through Northwestern Medicine in Chicago, IL. I also have a wonderful chordoma community via a FaceBook group that has been incredibly helpful in navigating the best doctors, suspicious symptoms and side effects, and more.
Interested in connecting with Olivia?
Follow her on Instagram @chronically.chordoma or send her a message at odejong01@gmail.com
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