It’s been nearly two years since I’ve updated this blog, and it’s been a hell of a ride; and continues to be so, as there’s currently the COVID-19 pandemic getting some serious traction in LA (and thus the entertainment industry), forcing some major (hopefully temporary) shifts in what constitutes business as usual for myself and others.
But it’s not like I’m unaccustomed to adapting to adversity. Sometimes shit happens and you have to go with a different strategy. That’s survival. This post is about how my career and life were nearly derailed by a worst-case absolute nightmare scenario, and will delve deep into my personal life.
Shortly after my last post in June 2018, my daughter, Kiki, who was just 14 months old at the time, was diagnosed with Stage 4 High-Risk Neuroblastoma (Nb). This is a rare-upon-rare cancer, and there’s only 700 cases of Nb in the US every year. The Stage 4 designation is a 50/50 prognosis, which is very grim, and came as an absolute shock to be revealed by ultrasound in our seemingly perfectly healthy daughter.
Neuroblastoma is a cancer of immature nerve cells. It’s almost exclusively pediatric and originates on the adrenal glands in most cases. It’s also one of the most aggressive cancers out there, and combating it requires equally aggressive countermeasures: an 18-month continuous gauntlet of chemo (6 cycles), surgery, two (2) stem-cell transplants with high-dose chemo, 18 rounds of radiation, and 6 months of immunotherapy. Obviously, my heart, my mind, my soul sank after hearing everything my precious baby would have to be put through in order to try and save her.
After essentially signing my daughter’s life away on countless medical releases and watching her become a human pincushion, something happened that I couldn’t have anticipated. All my mental constructs of what was right and wrong, what mattered and what didn’t, and my personal sense of self were destroyed. No pride, no walls, no ego anymore. I was defeated. And it was liberating. With nothing left of myself to hold onto, or defend, I became inexplicably empowered, to do anything and everything necessary to save my family. Success or failure, no one who knew my situation could judge me, turn a deaf ear, tell me no, or limit my resolve, including myself. As my wife focused on our daughter, I made sure I was focused on my wife, and then by extension, I reached out to literally everyone I knew, and asked them to help support ME, and to further spread the word if possible. Thus we swiftly had a giant pyramid of support rallied to our cause, with work colleagues, friends of friends, extended family at the bottom, and close friends in the middle, immediate family near the top, and my daughter at the pinnacle.
I had to make some big career moves. I needed all the help I could get. I incorporated, which meant opening up my work and personal finances to professional CPAs, something I’d been anxious about for a while. I joined the union, so I’m now a card-carrying member of the Art Directors Guild Local 800, something I’d never thought I’d bother with, but now I can work on union projects and access those benefits, most crucially the healthcare. There was no guarantee for my wife to continue with her work’s health benefits, so I had to make sure I could cover us, should the worst happen. It was all so daunting, and mind you, while I’m literally running around LA going to jobs, working my ass off, wading through traffic and making calls, spending 3-4 hours a day in the hospital visiting my suffering family, and then crashing into bed, utterly alone, in my clothes, lights still on, for maybe 3 hours of sleep, back up at 5 am to race to the hospital and help any way I can before work, and repeat. For 18 months. It was hard. I was hard focusing on work and providing for my family while my daughter was being poisoned by chemo, blasted by radiation, recovering from surgery, nearly dying twice, and whimpering through the pain of immunotherapy for so long. It was the hardest thing I hope I ever have to endure.
But it wasn’t all bad. I saw the “good” in humanity every day, with people reaching out endlessly to voice their support, sending prayers and good vibes and helping prop us up wherever things seemed to falter. I owe a lot to the kindness of strangers. I did a lot of growing, getting to know the real me, and learning how to be human, specifically, how to be more empathic with people. I realized that everyone is going through something, and we’ve all had to persevere through hard times, and have had to rely on others for help. I used to think it was best to hide whatever problems I had in my life, because showing weakness would result in others viewing me as a liability, but it turned out that sharing our weaknesses with others is an important part of social bonding, and by opening up to my clients and colleagues, I bonded to them in a way that made my work and personal life far more meaningful than it ever had before. It’s completely changed the way I approach my work relationships now. And it was GOOD for business. I actually had my best year ever, amazingly, and though it required me to leverage every ounce of social and work credit we had, we got through this dark period intact.
As of February 2020, My daughter Kiki is nearly 3, and nearly 6 months out of treatment. We don’t use terms like “cured” yet, it’s just too soon to know. But her oncologist is pleased so far, and we are slowly but surely phasing her into as normal a life as we can manage, enrolling her in dance classes and preschool, and still taking it one day at a time. We’ve recently additionally been blessed with the birth of our new son Robbie, a treasure and hope for new beginnings.
So far, 2020 is off to a rocky start, but not just for us, but for the whole world it seems. Fear of COVID-19 is spreading faster and farther than the disease itself, like a cancer, if you will, causing widespread severe repercussions in every industry, and time will tell how this will shake out. I hope that sharing my story might provide some inspiration to those reading, to find inner resilience, and courage to reach out for support when needed, and strength to adapt and change and grow accordingly to the needs of what may come next.
If my story had you compelled, oh man, this is just the index card version. Our entire saga played out publicly with regular updates on social media via gofundme, facebook, and Instagram. If you would like learn more about that incredible journey, I encourage you to visit our gofundme page (no obligation to donate) for the complete story, and certainly connect on facebook as well, where I like to post about my personal life and interact with our friends and supporters. My Instagram is more art-oriented, but a good third option if that’s your preference in social media.
I wish you and your loved ones well. Stay healthy as best you can.
Next up, more blog posts about storyboards.
