Why I Climbed on Board Dragon Master Foundation by Alexander Moore
July 25, 2011. That’s the date when everything changed for me and my family. I was thirty-one years old, worked from home at the time, and was sitting in front of my computer when my wife Amy (who happened to have called in sick to work that day) walked over to my desk to show me a text message. As she placed her phone in front of my face, a strange indescribable feeling fluttered in my head. I closed my eyes and put my head down because I couldn’t handle the sensation. As Amy asked me what was wrong, my head flew backward, and I blacked out. The next thing I knew, I was waking up on a gurney in the hallway of an emergency room. My first thought when I came to was, “Oh, this isn’t good.” A paramedic told me I was at St. Joseph’s Hospital in Burbank, CA and before he could tell me anything more, I threw up all over the floor. I had no idea what happened and all the paramedic could tell me was that Amy had called 911 and when they arrived at our place they found me unconscious.
When Amy showed up at the ER a few minutes later, she told me she thought that I had had a seizure. I was so stunned. Other than having a mild case of asthma as a kid and a few gnarly sinus infections as a teenager I never had any real medical problems. My first thought was the seizure was probably caused by exhaustion. I had not been sleeping well and been working around the clock at the time. I also thought that maybe my diet of mostly fast food had finally taken its toll on me. I was unprepared for what the ER doctor told me an hour or so later. After looking at my cat scan results in front of Amy and some other friends who had come to check on me, he said “You have a mass the size of a golf ball on your right frontal lobe.” Shock fell on everyone in the room.
Cut to a week later, I had an “aggressive biopsy” (surgery) performed on my head and found out that I had Stage 3 Brain Cancer. I was told that they were able to remove as much of the tumor as they could “see”. Further treatment was going to be required and the outlook wasn’t positive. I am so grateful for what my assigned Radiation Oncologist told me during my consultation with him. He said with great conviction, “I will not treat you until you go to UCLA. They have the guru of brain tumors there. You’re going to want to hear what they have to say before doing anything further.” I heeded his demand, met with Dr. Timothy Cloughesy (the guru of brain tumors he was talking about) at UCLA and got some hard to take news. After delicately explaining to me that there was still over 50% of my tumor left, I was told that they weren’t sure if they could remove it with surgery. Dr. Cloughesy put his hand on my back and said, “The good news is that we won’t have to wait too long to find out, this afternoon our brain tumor board is meeting, and I will bring your case to them to discuss.” I learned right then that the brain tumor board was a group of brain tumor experts (neurologists, neurosurgeons, neuro-oncologists, and radiation oncologists) that met on a weekly basis to discuss patients and research. The next day I found out that not only was surgery possible but there was a good chance they could remove almost all of the tumor.
To make a long story short, I had the surgery where my surgeon Dr. Isaac Yang was able to remove 99% of my tumor then went through the standard treatment of radiation and chemotherapy (Temodar) to get the rest. Here I am, 7 years later, with just a scar and a “complicated” comb-over to show for it.
In the midst of the diagnosis and treatment, I started a blog with the main purpose of keeping family and friends updated, but it soon became an important outlet for me. It was through that blog that I met Amanda Haddock. We shared a love of Star Wars and her teenaged son, David, was battling a very serious form of Brain Cancer at the time. A year later, he sadly passed away and something about his death triggered me in a way I didn’t see coming. I wrote an angry Facebook post about it that was shared by a lot of people, and I realized at that moment I was destined to become an advocate for Cancer research. What made me so angry about David’s death was that (besides the fact he was so young) there was just very little research done about the particular form of Brain Cancer he had. That was simply unacceptable to me. Over the two years I was going through treatment and recovery, I met a lot of people who had dealt with Brain Cancer, either themselves or with people they loved, and I quickly realized how lucky I was to be at UCLA and how rare such high-quality care was. I learned that where you lived could determine your prognosis when it came to Brain Cancer. That also became unacceptable to me. Then I learned that so much cancer research in this country was siloed and collaboration between research entities was not common practice. That was the final straw for me. Even though I understood there were probably some complex reasons for why things were the way they were, it didn’t make it right. It seemed to me to be a 20th Century way of doing things and we were more than a decade into the 21st century. This was simply put — a moral issue!!!
Some time shortly after David died, Amanda and her husband, Richard, were visiting Southern California and we met for lunch. We realized during our time together that we were all feeling the same convictions. We also all shared a passion for technology and talked about the need for a tool that could help incentivize and encourage collaboration and also make it accessible to everyone. A few months later, I got a call from Amanda that she and Richard were starting a foundation (Dragon Master) and asked me to become a board member. It was the easiest yes in my life. That was back in 2013 and early on we’d discuss how it would take bold thinking like JFK and landing on the moon to change things. We started using the term moonshot and wouldn’t you know it, the Cancer Moonshot was launched a couple of years later. The Cancer Moonshot is very much aligned with the vision of Dragon Master Foundation.
When we first started, we thought we would have to be the ones to build the collaborative tools ourselves but then we found out about the CBTTC (Children’s Brain Tumor Tissue Consortium) who had not only already built some of the tools but were well on their way to open source collaboration when we climbed on board as a supporter of them. The CBTTC is mostly funded and supported by a group of smaller foundations like Dragon Master, which is very appropriate considering that we are all pushing for researchers to combine resources and work together.
It is bold change that we have been pushing for at Dragon Master Foundation, and there are encouraging signs that the needed change is happening. We are finally seeing breakthroughs for treatments for DIPG and GBM, the form of Brain Cancer that David had, and we’re helping fund the first clinical trial that will be using and sharing data in real time (here is a link to blog post about why that is a big deal). Even with all that progress, there is still a lot of ground to break and lives to save. Which means things aren’t moving quick enough. But the progress we have made is a reminder that the time and effort we’ve put forth thus far has been worth it.
The Haddocks, myself, and millions of others are a part of a club we never wanted to be a part of. I often remember the story about the night I came home from the hospital after my first surgery as a reminder to myself of making the most of the situation we have all found ourselves in. I was laying in bed, mourning the carefree life I had enjoyed just a week earlier, I couldn’t sleep so I turned on the TV and an episode of Game of Thrones was playing. The show had just premiered a couple of months earlier. I hadn’t been watching the show so I had no context for what was happening on screen but I was struck by the image I was seeing when I turned it on. A baby dragon rested on the shoulder of Daenerys Targaryen, the bleached blonde indentured wife to a savage warlord, who was not yet the warrior queen she was destined to be. I was seeing the moment she became the “mother of dragons” and in my head, I had a fleeting thought, “I will tame the beast”. That’s when I became determined to not only conquer Brain Cancer but to thrive and help others do the same. When Amanda told me they were calling the foundation “Dragon Master” with the mission of taming the beast that is cancer, I couldn’t believe the serendipity. It’s not hard for me to say that I genuinely wish I hadn’t ever been on this journey, but it’s also not hard for me to say that I’m grateful that I am. It may seem paradoxical, but I’ve called it my new normal since that night and I can’t wait for the day that the new normal for everyone is that cancer is no longer a death sentence.
