#Joe Strong 71

 
In the summer of 2022, Joe’s plans to attend college in the fall were abruptly replaced by taking on a courageous battle against DIPG – the deadliest form of brain cancer known to man. A battle that rallied an entire community around him, but heartbreakingly, a battle he would not win, as DIPG has a survival rate of less than one year for most patients.
Joe was the epitome of an all-around great kid. As kind as he was handsome and well-mannered, he was looking forward to enjoying his summer before going off to college. But towards the end of July, he started experiencing an odd facial tingling sensation accompanied by dizzy spells. He shared his progressing symptoms with his doctor who thought Joe was simply dehydrated. A second opinion led to the devastating discovery of a 2 centimeter-sized tumor in the pons of Joe’s brain known as diffuse intrinsic pontine glioma (DIPG). Due to its location in the middle of the brain stem, DIPG is highly aggressive and difficult to treat.

Joe began treatment with six weeks of radiation at Children’s Hospital in Pittsburgh, and a personal mantra that he was “letting God take the wheel on this one.” He fought so bravely, with dignity and unwavering faith. He was buoyed by both his inner strength as an athlete and by the loving support of his family and a close-knit group of friends who remained by his side as often as they could. After completing radiation he traveled across the country to Seattle, WA to participate in a promising CAR-T clinical trial. Regrettably, Joe’s tumor mutation was very aggressive and he showed signs of progression during his time in Seattle. The family chose to go back to Pittsburgh and participate in a different trial (ONC201) offered by Children’s National in DC. Unfortunately, once again Joe’s tumor progression was aggressive and swift, ultimately taking his life after only eight months, at age 19, on March 23, 2023.

Joe brought out the best in people. Everyone who knew him and even those who didn’t could see his goodness, his true zest for life, the bond he had with his friends, the 100% effort he gave to the things he was passionate about, and the kindness he showed to others, especially those less fortunate. Smart, funny, and easygoing, he leaves behind an inspirational legacy of never complaining, no matter how hard things got.
While we will never understand how or why a young man whose future was once so bright could suddenly go dark, we will fight through our grief to keep Joe’s memory alive and give his tragic loss meaning and purpose. We will share his story, talk about his goodness, and remember the light in his eyes, the laughter when he was surrounded by his friends, and carry on with Joe’s plan of letting God take the wheel. And perhaps in doing so, we can help other DIPG families forced to navigate this extremely difficult road.

The Purdue family is committed to raising money for research to cure DIPG, which is not yet well understood or funded, with only 200-300 cases of this pediatric brain cancer diagnosed annually.

No parent should have to watch their child suffer. No sibling should have to lose a brother or sister. No child should be robbed of growing up, finding love and having their own children to adore. No family should have their world shattered and be forced to cope and figure out a new way to live until we meet again. We must do better.