“When we are children, we seldom think of the future. This innocence leaves us free to enjoy ourselves as few adults can. The day we fret about the future is the day we leave our childhood behind”. –Patrick Rothfuss
Timothy Allen Powell Jr. (T.J.) was born in Carbondale, IL, on October 12th, 2009. As a child, he was happy and outgoing and loved playing sports and video games. At eight years old, three months after completing his second-grade physical, T.J. failed the eye exam administered at school. The optometrist said the left eye had little to no movement when looking left and recommended that we get an MRI done on the brain to check on this. We didn’t think anything of it; he had complained about his vision and difficulty holding a pen during homework, but what kid wants to do homework? Little did we know that it was so much more than a kid being a kid.
During this MRI, the doctors discovered that T.J. had a tumor located within the brain stem. On December 15th, 2017, we realized that T.J. would no longer experience childhood innocence and that his future would be the only thing any of us would think about for some time. On this day, our happy, outgoing 8-year-old had left childhood behind and became an adult.
The Neurosurgeon and Oncologist brought us into a room along with T.J.’s grandparents and aunt and proceeded to explain to us that T.J. had been diagnosed with diffuse intrinsic pontine glioma (DIPG), a terminal childhood brain cancer; they told us that all we could do now was to go home and make as many happy memories as we could because in 12-18 months he would no longer be with us. It was a matter of if the brain tumor would kill him, but when. We were told they could do radiation to shrink the tumor so he could get back to a somewhat normal eye movement and he can improve his balance, which was clearly getting worse. So, we made the decision to begin radiation, and he received his first round the week after Christmas and would discuss possible clinical trials once the radiation was complete.
After the radiation, the doctors said it had killed some of the tumor cells, and the tumor had shrunk enough to allow for T.J. to get some of his eye movement back, and he was walking more normally. However, we knew we still had the biggest fight of any of our lives ahead of us. It was time to look into clinical trials and do whatever it took for T.J. to live.
Fast forward six years; T.J. not only beat the odds of this horrible disease and is part of the LESS THAN 5% of children who make it past 18 months, but he continues fighting this horrible disease and has blown the odds out of the water by being the LESS THAN 1% of children who have made it past the 5-year mark. This fourteen-year-old MAN has now been through two rounds of radiation and multiple failed clinical trials, one of which put him on hospice because it harmed him so badly; he has endured more ups and downs than most adults in their forties and fifties could even imagine, and his tumor is considered stable and has been for the last year or so.
Unfortunately, his childhood was tainted by this terrible disease, but he is still the happy, outgoing, goofy kid inside that he was when he was eight years old. Because of a slight paralysis on the right side of his body, his love for playing sports has turned into a love for watching sports and collecting sports cards and memorabilia. While he STILL loves playing video games, it took some adjusting, and he has now mastered playing video games and using his cell phone with only one hand. He sometimes has more sad days than happy days and is learning how to be more outgoing and navigate life in a wheelchair. He still doesn’t understand why he is such a hero to our family, friends, community, and people worldwide, but we ensure him every day that he is a hero, a superhero, and we will ALWAYS be “Team Timothy.”
Hope is a feeling you lose when you hear the words DIPG coming out of your child’s doctor’s mouth, and it’s something I wish no parent ever had to experience, but know if ever those words have to be spoken to you, there is hope, there is a chance and the odds may just be in your favor. And if you hear those words or know someone going through this, mention T.J., mention this amazing, wonderful, beautiful story of this boy who beat the odds and somehow brought HOPE back into our lives.
Written by Rachel Jackson, mother of Timothy