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Keeping the Faith

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Submitted by:
Roger, Lisa and Brooke Ward

Jace is our 21 year old DIPG warrior now in his 14th month since diagnosis. Recently his symptoms have begun to return. There is no standard treatment available anything from here on will be Phase I trial. Jace has endured biopsy, radiation, a year of imipridone therapy. In one trial he will be patient #2, in the other patient #1. Jace understands, without groundbreaking trials there will be no cure to DIPG. He is older than most DIPG patients and has a better chance of blazing a trail which he wears as a badge of honor. Jace is resilient. He has never asked Why me. He takes each day in stride with the motto #I can’t die, I’m busy. When Jace’s hopes of becoming a lawyer seemed less likely, he found his voice speaking for younger children with DIPG. He has spoken at the NIH demanding the right to share his data, at a White House briefing on the need for focus to fund the fight against on the #1 killer of children – brain cancer. Most recently, he was behind the efforts to raise $400,000 to support two rounds of funding for Expanded Access to the trial drug ONC201 making it possible for 60 children and young adults to access the otherwise unavailable drug. Jace sends video messages to young children with DIPG, encouraging them to brave the radiation mask like a super hero, to push through and love their own bravery. Jace cares deeply about those around him. He chooses to be with friends and family over wish trips. He chooses to continue his senior year of college and to work establishing a CBD lab instead of other pasttimes. Most importantly, daily he chooses to protect those closest to him from our fears regarding his tumor. Jace encourages us to have faith that God will see us through. Jace is the glue of our family. His easy going compassion makes us each feel special daily. Jace pushes to be very independent. He approaches his illness with such courage willing to battle for the best quality of life. We are proud of Jace. We are #Tough2gether.