Joshua Smith

In December 2020, while shopping for Christmas presents, I received the call that my father had passed away. It was a shock because a few days before, I spoke with him, and he didn’t mention anything ailing him. With my mother passing 10 years before that, I was responsible for all the arrangements for my father's passing. I was flying back and forth from Atlanta to California to take care of that while also dealing with other stress at home and at work. I worked two to three jobs at a time to make ends meet, and I began feeling headaches every day, all day. I tried Tylenol, natural remedies, and several migraine medicines, but nothing worked. I would take several medicines every four hours just to remain functional, but the migraines would not go away.

On Father's Day of 2021 I became dehydrated, passed out, and suffered a concussion from the fall. I went to the emergency room where (after several hours of testing) it was discovered that I had what they thought was a brain tumor. At that time, I was told that the tumor was the size of a pea and not cancerous. As the year went on, the headaches became worse, sometimes crippling me to the point that the only thing I could do was fall on my knees and pray for better days. As the pain became more severe, I knew I needed to go to a doctor. I began testing with Piedmont Healthcare neurologist Tyler Kenning, who determined that the tumor had grown to the size of a walnut and would need to be removed. Dr. Kenning later discovered that the tumor was cancerous, and that after surgery I would need to undergo radiation with Dr. Mark McDonald at the Emory Proton Therapy Center to reduce the size of the tumor and reach areas that the surgical procedure could not. The tumor was in an odd place, growing outward from within a bone, with the possibility of attaching itself to my nervous system. Because of the location of the tumor, Dr. Kenning and Dr. McDonald held virtual meetings with experts from the Cleveland Clinic and the Mayo Clinic to determine the best steps moving forward. After the surgery with Dr. Kenning in May 2022, I had radiation therapy five times a week, every week until September 2022.

I feel that I am in a good place now. I still have migraines here and there, but they are rarely as severe as before the surgery. I have begun taking medication to address the remaining migraines and I have checkups at the Emory Proton Center to make sure that the remaining tumor does not grow. Like many chordoma survivors, I feel that my condition is different from most cancer survivors, as I can’t say that I am in remission; it’s moreso that I am in a state of maintaining and hoping that the tumor does not grow. I will remain hopeful and prayerful that one day my tumor will be completely gone. I have changed occupations from working as Digital Content Manager for Congressman Hank Johnson, to now working as a Social Media Specialist for Georgia Tech’s Ivan Allen College of Liberal Arts. Congressman Johnson recently re-introduced a resolution to increase awareness of chordoma. He initially introduced the resolution in December 2022, and you can watch his floor speech here.

The whole experience drew me back to God: I’m thankful for him giving me strength to make it through. I am thankful to my girlfriend Cotoya Bone, who was always there for me in my time of need, as well as my close friends and family members who helped me get to my radiation appointments, gave me encouragement, and prayed for and with me throughout this process. Of course, I am thankful for my doctors and all the staff at the Emory Proton Center for helping me and remembering personal things I shared with them along the way. They also assigned me a social worker who gave me access to organizations that assisted me in several different ways, such as the Atlanta Cancer Care Foundation, Pennies with Purpose, and the Glenn Garcelon Foundation. The surgery, radiation and other related costs really added up and I am on several payment plans; it looks like I will be paying for this medical debt for several years to come.

I am thankful for all the resources and the encouragement that the Chordoma Foundation provided to me, for giving me a listening ear and a shoulder to lean on. I am looking forward to any future opportunities to raise awareness and support the Foundation as I move forward in life.

If you stay the course, chordoma will show you how strong you truly are both mentally and physically. In the words of the late civil rights legend John Lewis: “Never give up. Never give in.”