Diagnosed: November 22, 2023
About Kevin
Kevin is a spunky, articulate, empathetic, and creative boy who has always stood out for his keen awareness of the feelings of others—both people and animals. He is incredibly smart, reading at levels far above his grade. His articulate nature and creativity shine through in everything he does. Kevin’s journey from the first signs of illness to his current treatment has been a challenging and emotional roller coaster for him and his family.
Kevin loves games like Pokemon and Minecraft, where he creates intricate worlds filled with pet Axolotls, cats, and dogs. His Minecraft server is a testament to his creativity and care for animals, with beautifully built enclosures for his virtual pets.
Kevin also has a passion for Legos. He tackles sets designed for much older builders with ease, often outshining even his mom with his building skills. Kevin also adores his real-life pets, his dogs Kirby and Arven, who are a constant source of joy and companionship.
Signs, Symptoms and Diagnosis
In July 2023, Kevin’s vibrant personality seemed muted, and he began experiencing nightly headaches. By August, his eye started to move abnormally, prompting visits to the eye doctor. Despite multiple consultations, his condition worsened, and by his eighth birthday in late October, his clumsiness had noticeably increased. An emergency MRI was scheduled after he exhibited stroke-like symptoms in November, leading to his diagnosis.
The day Kevin was diagnosed was the hardest day for his family. Learning that their bright, promising child’s future had been altered so drastically was devastating. The doctors advised them to focus on building memories, as no treatment could change the prognosis. Kevin was sent home with steroids and the instruction to enjoy the holidays, despite a treatment plan set to begin post-Thanksgiving. This was an emotional roller coaster for the family, grappling with the reality of DIPG.
Guidance, Support and Hope
Feeling isolated and overwhelmed, Kevin’s mom sought professional guidance. She discovered the Chad Tough Foundation, the largest DIPG organization in the US, and found the DIPG Navigator to be a perfect fit for their needs. She also reached out to her therapist to navigate the emotional challenges of this journey.
Kevin began a 6-week course of radiation shortly after his diagnosis and is currently participating in the Indoximod drug trial. He undergoes regular MRIs every 2-3 months, remains on steroids with a gradual weaning plan, and will receive an additional 3 weeks of radiation at the 6-month post-radiation mark. This comprehensive treatment plan is closely monitored and adjusted as needed to provide the best care for Kevin.
Despite the challenges, Kevin’s strength and the support of those around him are a source of hope and resilience. His family is dedicated to creating lasting memories and cherishing every moment they have together. Kevin’s journey, marked by his remarkable personality and interests, continues to inspire those who know and love him.
