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By Amanda Shaker, Owen Petrzelka’s Mom and Family Partner

Facing DIPG in any environment is an absolute battle in the truest sense of the word. To do that alongside a global pandemic makes things unbelievably more complicated. My son was diagnosed, battled, and died all during COVID-19.

Owen was diagnosed just weeks after Illinois shut down – April 17, 2020. Doctors were awkwardly pivoting to telemed, and many were halting appointments until there was a greater understanding of what was happening in terms of the pandemic. It was clear Owen needed an MRI. I had been warned it may not be until August. I will never forget my exact words to the neurology department when I finagled my way to getting their direct line. “I have a child who could walk yesterday and cannot stand today. We’re coming in.” That was April 15, 2020.

Discussions around clinical trials to consider now had this added layer of reality – not only did we have to learn the treatment protocol, but also think about the distance and isolation Owen (and likely one parent) would experience. Going to another city for treatment meant Owen couldn’t see his friends or family – even if the visits now were backyard hangouts with masks or front-stoop waving. Those were meaningful moments in the very truest sense.

And any other city meant living in another locked-down location. It would be hard to sell treatment in Memphis, Ann Arbor, San Francisco, or New York as a fun adventure when there were no zoos to explore, no museums to check out, or must-do lists to conquer. It would be further isolation and, most importantly, while there’s a lot of hope in the future state of DIPG, it doesn’t change the current prognosis. The questions were always the same. How did we want to spend the limited time we had left with Owen? What did we want the rest of his life to look like for him? His joy in this very complicated terminal-diagnosis-in-a-pandemic world was our only focus.

Subsequent hospital visits were challenging. Often we were only allowed one parent, so trying to have candid conversations with Owen’s team was nearly impossible and often required follow-up phone calls the next day to understand what was happening. Sometimes we were able to secure two parents, and Adam and I could alternate between meeting with Owen’s medical team so that Owen was never alone while getting his treatment, and we could candidly share reports of his rapid decline or, eventually, meet with his palliative team.

While the pandemic complicated the logistics of a diagnosis such as DIPG, it also meant many people were working from home, so quick grilled hotdog lunches at cousins’ houses could be squeezed in between meetings, and his absence from soccer practice could be justified by the season being cancelled, not because he could no longer walk. It also meant anything we did was an absolute conscious decision, and all risks were weighed accordingly. An RV trip to see dear friends in Minnesota – yes, a priority. A block party with his entire class (masked) for his 6th birthday – yes, a priority. Making our home the water station for a ChadTough 5K run – yes, a priority. These were creating moments, both for him and for those closest to him who loved him immensely.

And then we had to face losing him. While we were able to have a small family-only service, it certainly was not the proper extravaganza Owen would have wanted. So, when it’s safe to do so, we will have a send-off fit for a ninja who fought with bold laughter, a quick wit, and a very kind heart.