Lots of people think pediatric cancer, especially DIPG, doesn’t impact young adults. Max was diagnosed at 22 years with an extremely aggressive tumor, and he fell into that fuzzy area of being both pediatric or adult medically. From the moment of his diagnosis, we were thrust into chaos, should he be treated pediatrically or as an adult? He was deteriorating before our eyes and he ended up starting treatment as an emergency case. For him, for us his family, we were stuck in that horrible limbo of watching him slip away and there was nothing anyone could do. For me, he was my child, no matter his age. One day he was forging his path, working and living halfway across the country, the next moment he was transported back east for treatment and into my care.
Max never liked being called a warrior or a fighter. He didn’t like the language we use around disease and cancer, the implication that when he died, it was somehow his fault, that he didn’t fight hard enough to win. He was incredibly courageous and brave though, more so than all of us. He went through all the treatment presented to him, suffered through the pain of radiation in your brain (downplayed, I think, by doctors about how you will feel each day having that done to you), dealt with chemo and the side effects, and the long term steroids that dramatically impacted his quality of life.
Most of all, he faced his own death with grace, soothing the rest of us along the way, always more worried about us than he was about himself. When that tumor reared it’s ugly head again, it was worse than before. He passed away 14 months after diagnosis.
Max was funny and smart, kind and good. He was our gentle giant at 6’ with a bright red beard. He treated everyone with loving kindness and tried to make everyone feel seen and valued, from strangers on the street, passing by with a compliment or just saying hello, to his friends, always giving anything he had to anyone in need. He loved sports, hiking, music, movies, and anime. He loved spicy food and the Grateful Dead; he dreamed of traveling the world and hoped to one day be a high school youth counselor or psychologist, because he felt like he would be able to help kids. Because he understood, because he had an open heart, because he once struggled and just wanted to be seen and valued for who he was.
We miss him so. There is a void in our lives and in our family.
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