“You are one in a million.”
When I read those words, they don’t make me think of the lottery. When I hear the words, “one in a million,” I think of a rare form of cancer called Chordoma.
In 2015 I was diagnosed with this rare form of cancer. A tumor had grown on my skull base and it had probably been there for some time. I knew something was wrong when woke up one morning and could no longer see out of my right eye. What I didn’t know is that morning would be the start of something that would change the way I viewed life, love, and relationships, forever.
Chordoma is diagnosed in roughly one in a million people per year. It is a form of cancer that arises from remnants of the notochord of a fetus. Chordoma can occur at any age and anywhere along the spine. When you Google a bit, you will find that the median survival rate in the United States for Chordoma is 7 years.
All of these facts are not as important as they are overwhelming. Reading some of the limited research and facts on chordoma can be pretty grim. This is part of the reason why I am grateful that I came across a Facebook group called Chordoma Support and Survivors. When I first joined this group, there were about 1,800 members. Now there are about 2,600. This isn’t exactly good news, but I don’t think it is anything within our control. When I joined this group, I did not expect that I would meet people that would become more like family. I was not prepared for what I would witness and become a part of.
Because Chordoma is a rare form of cancer, many of those diagnosed take part in clinical trials as their sole means of treating the disease. I too took part in a clinical trial in Texas. It was during this process that I met a woman named Grace. Grace’s son Conner was 14 months old at the time, and he was also diagnosed with a Clival Chordoma.
Conner and I had similar treatment schedules, and we were a part of the same clinical trial. I was living in a medical apartment alone, while I waited for a close friend to move in. I had to leave my daughter with her grandparents because as much as they wanted to be there physically, it was just not feasible for our family.
Grace and Conner became part of my family. She welcomed me into their circle, and I learned more about the value of life than I could really ever hope to explain or convey. Grace never lacked room in her heart for me. She had her family were facing things that I don’t know I can truly explain or understand. Yet, in spite of everything, she found time to include me and show compassion for my situation.
Her son Conner couldn’t speak yet, so Grace and I would often talk about some of the symptoms or side effects of treatment I was experiencing. She always said this was helpful for her family to better understand what her son was feeling, but I am not sure I will ever feel like I said anything that will ever amount to the blessings she and her family gave me.
That being said, cancer, specifically childhood cancer is hard to put into words. Grace and her family did everything they could for their son. I watched her hope and pray. I watched all of the members of our little Facebook group hope and pray with her. Grace stood by her child’s side. She moved through things with a strength I am not sure any of us will ever be able to describe in words. Grace is one of the strongest women I have ever met. As a mom, I don’t know that I could ever be that brave. What I do know is that there are some facts about childhood cancer that do not and cannot stand up to the bravery of women like Grace.
There is a website about childhood cancer,The Truth 365. Its main focus is to shed light on facts about childhood cancer. According to this website, the National Cancer Institute dedicates only 4% of its budget to childhood cancer. This fact is heartbreaking to me because I watched Grace and her family wait to be accepted into clinical trials and programming that we hear about every day. I watched her petition specialty children’s hospitals and wait for a spot to open up for Conner.
The saddest fact is that Conner did not live to receive the benefits of any of these organizations. Grace buried her son when he was just 19 months old.
We Have to Do Better
It was just shy of what would have been both of our six-month checkups. We had finished treatment just a week apart. To this day, I don’t understand why Conner and I were not BOTH there to celebrate together. I don’t think I will ever have the words to talk about childhood cancer in a way that fully describes the magnitude of the weight that diagnosis carries. I can only say one thing for certain. In order to match the bravery of mothers like Grace and warriors like Conner, we have to give children the best opportunities each and every time. I hope that for Conner and women like Grace, we can all come together and do better than just 4%.