After the initial brain surgery, followed by radiation, the only proven way, of any kind, to control this disease is surgery. We continued to look for options, of which were a few at best! Thomas enrolled in an innovative phase 1 trial. We were so hopeful! Honestly, hope is what got us through all of this. Unfortunately, the treatment didn't work. Thomas’ disease progressed. With each surgery, Thomas had a hard time walking because the area that controls movement and coordination is the cerebellum. Thomas would work hard to relearn how to walk with intense physical therapy, but with each surgery his body got weaker. In true Thomas fashion, he found other things to excel at like cooking, music, and video games. He enjoyed spending time with family and friends and his trusted companion, Snowflake. He would wheel around the neighborhood in his golf cart, and when he beeped his horn, his friends would come running out! He loved going out to dinner at his favorite hibachi restaurant with his buddies!
We continued with a mix of treatments but his tumor was relentless. Thomas never complained! Thomas, at a young age, had earned himself a nickname, Thomas the Bull! Because he would bull his way through any obstacle with determination and resilience! Boy, we never knew how much he would need that! All the while with a smile on his face! He enjoyed every second he was on this earth and didn't let it go to waste for only he knew how hard he worked for that time here! Thomas' journey eventually brought us out of the country since we had exhausted all options that fit with what we as family wanted for Thomas. Nothing we were doing was guaranteeing a cure, heck it wasn't even guaranteeing months. We knew the reality of this cancer, and we realize we had no control but what we could control was quality of life. We could control the decisions we made with treatment based on what his day in and day out life would look like, since we didn't know if anything would work only hoped it would.
Thomas eventually passed away on July 7, 2016 at the age of 12. He will forever be 12! We are heartbroken as a family and feel Thomas' absence constantly! His smile would light up a room! A mother of another child with cancer told me after Thomas had passed away that Thomas brought sunshine to the dark dreary hospital. Thomas also provided hope! His kindness would warm your heart! His humor would make your cheeks hurt from laughing! His knowledge would boggle your mind! Numerous friends of Thomas' told me, "Thomas was the smartest kid I knew and he didn't even go to school that much!"
Thomas always saw the best in people. He loved and loved to be loved! He was always optimistic. In fact, he had a sticker on his iPad that said "Happiness can be found in the darkest of times, if only one remembers to put the light on" He taught us so many important life lessons that we will forever hold on to and continue to try to embody.