Truman Tough Memorial Fund

If you’re lucky enough to have a child, you’re lucky enough. If you’re lucky enough to have a child whose smile lights up your whole world, you’re even luckier. As we reflect on our son’s life and the joyful adventure it held, we count ourselves among the luckiest of all.

Truman Scott Barnes made us parents during the hottest July on record in 2012. Even then he was tough. “Ball” was his first word – declaring at a young age his inherent love of sports. His face lit up the moment he entered a stadium or arena or stepped on to a field, court or pitch. Football, baseball, basketball, soccer… he was happiest when he was cheering or playing, and his enthusiasm for the game was infectious to even the most reticent fan. He was born to Cyclones and MSU Bulldogs fandom, reciting player stats and conference history by rote. He loved the Cubs. A day at the park was a good day, win or lose. Over the years he became a fan of many teams and players, and collecting sports memorabilia became another passion.

But, Truman’s first love in life was his family. He wasn’t shy about showing us affection. He enjoyed spending time together, whether it was a movie night in the backyard or a road trip to the Grand Canyon. The more family (or friends who have become family) involved, the better. He thrived as a big brother to his sisters, Darby and Sloan. He was protective and nurturing and so proud of them. The role helped him find his voice and fine tune his leadership skills. Even during the hardest days of treatment, Truman used his well-earned “Bravery Bucks” not on himself, but to buy his sister a doll. There was joy in taking care of his sisters, and joy was something Truman sought every day.

If Truman had a third love, it was his school. He loved learning and getting good grades. He loved music, learning to play the piano, guitar, and the saxophone. He was elected to the St. Augustin student council and participated in school events. He loved his classmates. He was just three months old when he discovered the unmistakable bond of life-long friendship. It was his connection to these friends that tethered our hearts and opened our world to what has become the strongest and most supportive community we’ve ever known. A place where we have forged our own life-long friendships.

There’s life before a diagnosis and then there’s every moment after. Balancing beauty and suffering, joy and pain, continues to be a daily occurrence. Truman’s diagnosis was tragic. His death was tragic. But Truman is not a tragedy. The way he handled his diagnosis revealed his immeasurable bravery and courage. The way he managed his treatments, successes and setbacks highlighted his unwavering determination and strength. This unbelievable, unimaginable cancer journey has shown us all what it means to be TOUGH.

Even in death, Truman continues to fight this unforgiving disease. His tumor has been donated to St. Jude and the Children’s Brain Tumor Network to continue the research in which he participated during their trial. Doctors and researchers around the country will use this gift to gain more knowledge and understanding of the disease and to accelerate new and improved treatments for pediatric cancers in the hope that no other family has to lose a child in this way.

Many friends, colleagues and acquaintances along the way have told us that Truman’s smile had the power to change your whole day. We carry that smile now in our hearts. Always finding joy in the day. Always being a champion for those who need a hand. Always striving to be a good friend and let people in. Always being “Truman Tough.”

A funeral will be held on Saturday, October 26th, 11 a.m. at St. Augustin Catholic Church, 545 42nd St., in Des Moines.

A Celebration of Life will follow on Sunday, October 27th from 1 - 5 p.m. at Barnes’ Place, 20932 350th St., in Adel. Please wear your TrumanTough colors!

A Truman Tough Memorial Fund will be established in the coming days. Our family is passionate about continuing the fight against childhood brain cancer, investing in cancer research, and supporting families in our community. In lieu of flowers, we request your support in this cause by contributing to the TrumanTough Go Fund Me account.