NCI-CONNECT Rare Brain & Spine Tumor Network
 

PXA Tumor Survivor Starts Life Over After Learning He Was Misdiagnosed

April 1, 2019, by Darien, PXA tumor survivor

Darien

Darien with his parents

Credit: NCI-CONNECT Staff

Darien shares how he lived with what he thought was an aggressive brain cancer for eight years. Then, he got an accurate low-grade rare tumor diagnosis and made a fresh start.

I was 21 years old and a recent college graduate when I had my first petit mal seizure. My brain would take over everything in my body. It was like a movie screen turned on in the top left quarter of my vision and all my other senses turned off. I felt like I could see the future in fast forward but couldn’t talk or move.

The initial petit mal seizures each lasted about 10 to 15 seconds. To others, it looked like I was staring off blankly. The unplanned seizures and headaches with auras (strange feeling, experience or movement), continued to worsen over 9 months. I was too stubborn to visit the doctor.

Then, I had a grand mal seizure at my parents’ home in Virginia in February 2010. When I woke up, I was fighting the emergency medical team at the house. I didn’t want to get on a stretcher. It took a phone call my father, who was away on a business trip, to coax me to the hospital.

An MRI in the emergency room revealed a brain tumor. I did not hesitate to have surgery to remove it.

Surviving the Most Aggressive Brain Cancer

Two weeks after surgery, I was back to running and playing soccer. My life returned to normal. About a month later, I went in for a follow-up appointment.  

I was told I had glioblastoma, the most aggressive brain cancer. I don’t remember anything the doctor said before or after the words “brain cancer” or the way I reacted. But, apparently, I punched a hole in the wall.

I immediately started six weeks of radiation, followed by 18 months of chemotherapy. I then started a vaccine clinical trial at NIH in 2012. And for seven years, my brain cancer was monitored by NCI’s Neuro-Oncology Branch healthcare team.  

It was a weird scenario because I was doing so well. Everyone kept telling me that it was a miracle I was alive. After years of being told I was a miracle, I just didn’t want to hear it anymore. I was focused on living a normal and healthy life.

Going to NIH was an eye-opening experience. It is my second home. I  never felt sick or like being there was real life. I was a physically-fit law officer on a fast-track to be a Secret Service special agent.

Then, in 2014, I was rear-ended at a red light. An MRI showed my brain bleeding in my brain stem. My stroke-like symptoms worsened quickly, and I needed surgery. I was now considered terminally ill and it was unrelated to my brain cancer.

Discovering I was Misdiagnosed  

In 2015, I had surgery for my brain bleed in Arizona and rehab in Virginia. I returned to visit the neuro-oncology team at NIH for routine monitoring of my brain cancer. And I received life-altering news.

A neuropathologist at NIH had studied my tumor tissue and discovered it was not glioblastoma. Instead, I had a low-grade, slow-growing rare brain tumor called Pleomorphic Xanthoastrocytoma (PXA) tumor. The diagnosis explains why I was doing so well with what was supposed to be a lethal cancer.

You’d think I would be super happy. But I didn’t feel anything. I didn’t cry or scream. I was blank. People had been calling me a miracle for nearly a decade of my life. I didn’t know what to do or think.

The news for my parents was monumental. As my caregivers, they came with me to every appointment and procedure and provided emotional and physical support.

I know that I will be dealing with this brain tumor for the rest of my life. So, after the news, I decided to take my life into my own hands and start over. Now at age 31, I moved from my parents’ home to Texas to become a software engineer.

Adopting a Fighter Mindset and Choosing to Live

Early on in my cancer journey, I adopted a fighter mindset. I knew I had a choice when I was diagnosed. I could choose to feel sorry for myself or I could choose to live my life.

Darien

People kept telling me, “You’re so strong.” But I was living the way I always lived – a fighter.

I also had bad days. Cancer treatment made me feel ugly. My brain bleed caused my right eye to turn in temporarily and I couldn’t drive, run, or perform routine tasks. I now have a loss of balance, vision impairments, and partial numbness in my fingers and hands, but I don’t feel disabled.

What I want to tell people is you can’t control the rain, but you can control how you react to it. Just like cancer. It’s not your fault, but you have power over your way of thinking. Live your life.

Editor’s Note: Darien’s tumor tissue was studied as part of the NCI Neuro-Oncology Branch’s Natural History and Specimen Banking Study, which opened at NIH in 2016.

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