Our 6-year-old son Parker fought DIPG for 13 months after his diagnosis. We spent that year undergoing surgeries, radiation, traveling, MRIs, PET scans, ICU stays, fighting insurance, taking chemo, and countless doctor visits.
Parker was an extremely bright, funny, and special little boy who loved living his life. He was looking forward to growing up; he wanted to be a park ranger—or sometimes he would say police officer or fire fighter. He loved building legos, soft blankets, riding bikes, watching movies, playing with friends, and eating cookies & ice cream. DIPG robbed Parker of his childhood, dignity, independence, and ultimately his life on 02/20/2017. His mom, dad, and little sister miss him terribly every minute of each day we have to live without him. We love him more than words can describe.
When you live in a world where everyone around you, including all the top healthcare professionals, can only look at you and say “I’m so sorry” instead of offering solutions, you spend the rest of your life trying to process what happened and how everything went so wrong in your life, and more importantly the life of someone so precious.