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Never stop fighting-NEVER give up

Quote: "Never stop fighting, never give up!"

I’m Nick Casillas, I’ve have been an Ewing’s sarcoma survivor in remission for 29-years. I was diagnosed with bone cancer in 1993 at the age of 9, after experiencing intermittent foot, ankle and joint pain on and off for the better part of a year. I still remember waking up one morning for school and being unable to bear weight on my right foot. Who could have fathomed that a seemingly benign ache and pain would result in a year plus battle for my life. As an active youth, heavily involved in year-round athletic pursuits, parallels were immediately drawn between my inability to walk and a sports-related injury of some kind. Even though there was not one specific incident myself or my family could point to. After visits to the pediatrician, resulting in crutches, mandated bouts of couch bound inactivity, days off from school, holdouts from recess and what seemed like endless amounts of applied rest, ice, compression and elevation, things did not improve. As soon as the pain subsided after being sidelined for prolonged periods of inactivity, I would be right back to where I started as soon as I was cleared to go out and run, walk and play. Every time I was let loose to go catch, throw and run after baseballs, footballs, and basketballs, like clockwork, I’d be again tethered to that forsaken icepack with an ace bandage wrapped around my ankle elevated on a pillow right back on the couch. Every time I’d get back on my feet, I’d soon meet my same demise, pain that would boil over to a point where I was again, unable to walk, run or play with my friends and family. It was finally determined that I needed to see a foot and ankle specialist after a couple weeks of this on and off activity restriction was not producing the results, we’d hoped to have seen in treating a simple sprain or strain. I was formally diagnosed with plantar fasciitis or inflammation of the tissue in the foot usually caused by excessive activity and overuse soon thereafter. Though, typically only seen in middle aged and older adults, it seemed like the explanation that made the most sense at the time because experiencing pain and inflammation in and around the morning after sleeping off a day of activity was a known symptom. My new regime now included a walking boot, insoles, physical therapy, massage, and a newfound intensified focus on RICE (rest, ice, compression, and elevation). I was again put on lock-down from participating in the 2-3 recess periods every other 3rd grader was afforded and all after school sports programs were off the table until we could get our arms around the problem at hand. This went on for the better part of a year before my Parents, in particular my mother had finally determined something was not right. Through her in-depth research into a digitally based CD-ROM encyclopedia, yes this is not a misprint, I said CD-ROM based encyclopedia. This was essentially before the rise of the internet as we know it to be today. The internet as a knowledge sharing resource in 1993 was extremely uncommon in your everyday home, let alone it being at your fingertips via your cellphone like it is today. Online access was sparse, the internet was in its infancy and did not have the depth and breadth of knowledge available like it does today. It was more popular to get information online in chatrooms as opposed to peer reviewed literature published in medical journals, cited articles, or access to websites solely dedicated to diagnosing illnesses. This was all unheard of back then, making my mother’s research and dedication to fact finding all that much more remarkable. She determined there was something else going on here and advocated for further testing that, at the time, was deemed to be a waste of resources and rooted as baseless claims made by an overbearing mother with nothing better to do than abuse important people’s time. It was that persistence that resulted in a photoshoot courtesy of the MRI’s & CT technology at the time, that produced a referral from that foot and ankle specialist within 24-hours to an Oncologist and Orthopedic Surgeon. As a young child, I did not know what any of this meant, but my parents knew otherwise. It was a whirlwind to say the least, in a 24-hour period my life was flipped upside down, one minute I was an athletic, spirited 9-year-old with the world in front of me, the next minute, I was still 9 years old, but now fighting for my life. I was handed an all but certain sentence to countless rounds of chemotherapy, the near 100% chance I would lose my leg to an amputation as the price I had to pay to save my life and most importantly, the prospect of never walking quite like I had, up to that point, and running, forget about it, realistically my best days were behind me. For a kid who solely identified as an athlete first and foremost, this was like hearing there was no Christmas. I did not know a world where I wasn’t running after something.

Little did I know, I’d be running harder and faster than I ever had over that next year trying to save my life. There was a lot of change that that took place in my life, Seattle Children's Hospital became my second home, I set the trend for working remote prior to it being cool, as a 3rd grader rarely setting foot in my elementary school classroom, I even lost my hair. As if all that change was not bad enough, I’d begun to isolate myself out of pain, shame and fear of the unknown because I was now different. As a kid who always wanted to fit in, Ewing’s sarcoma was about as far away as you could get from fitting in. My family, friends and community rallied around me, even though most of the time I didn’t want anything to do with them. It was a painful, arduous road, looking back on it I wish I handled it differently, but everyone grieves in their own way. For the next decade I seldom spoke about my experience, rarely letting people into my journey and certainly never telling them my story.

Fast forward almost ten years, this was never more evident than my time as one of my high school’s starting running backs on the football team. It’s funny now, but back then what seemed like a routine play where I had the ball, resulted in my prosthetic foot failing, it broke under the force and weight of my tacklers. So, there I was, lying on a football field in a stadium full of people under the Friday Night Lights. As the trainers sprinted to where I laid with a hand on my injured leg, I was immediately poked and prodded, they reached for my leg and began to gently turn and twist the limb that appeared almost detached at the joint. In a calm voice I politely asked for “help off the field” I said that “I needed to get to my car to grab my other leg.” as I had another prosthetic in the parking lot as a backup for this very reason. Right then and there the training staff had diagnosed me as an incoherent patient who was clearly in shock and delusional, spouting nonsense, who might actually lose his limb based on the eye test diagnosis of the seemingly gruesome injury at hand. It was at that moment I told them I wore a prosthetic, much to their surprise, there was levity in that moment, everything was going to be okay. Not just okay in the sense that the trainer’s patient was not going for a ride in an ambulance that evening, but I was okay after spilling my secret that I had carried because I didn’t want to be treated differently.

At the end of the day, I’m one of the lucky ones, I don’t have much if any pain when I walk or run. When I’m out golfing or at the gym and someone asks what’s the deal with my knee brace, they’re shocked to hear I wear a prosthetic and often times are in disbelief because that’s not what they picture an amputee looking like. Heck, I can’t blame them, when I was 9, I wasn’t what I pictured either when I was told I’d lose my leg.

What a whirlwind and here I am today, telling a small rambling run-on sentence story hoping it helps others who are going through something similar. I have a lot to be thankful for, those doctors, nurses, support staff, counselors, teachers, and prosthetists that didn’t give up on me and saved my life. My parents, siblings and extended family supported me when I was at my lowest and advocated for me even when I couldn’t for myself. I owe my life to about 50 people or so, last I counted, if not closer to 100. I have an amazing support system today in my wife, 2-year-old daughter, with another girl on the way, a bunch of close friends that I’ve known in some cases for almost 30-years and of course my parents, siblings and extended family on both mine and my wife’s side. The NW Sarcoma Foundation is doing great work to provide hope, education and support to the fight against sarcoma cancer’s to anyone affected in the PNW. I’d like to thank them for their advocacy, they’re doing great work in the community and I’m proud to volunteer for such a great cause.

Cheers to everyone fighting this ugly disease, those connected by it, and here’s to finding a cure! Thanks again for your support!

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