Our Amazing Connor Man. Our Superhero. Our Everything. A personality and smile that would capture the attention of the whole room. Intelligent, athletic, a big heart, and a sense of humor well beyond his years. From the day Connor was born he taught us to be present in all aspects of life. His excitement and energy for everything he did was contagious. He would often say “this is the life!” This Texas boy loved watching and playing all sports, especially baseball and basketball. He also enjoyed legos, trains, puzzles and cooking with his Daddy! At just 4 years old, his favorite shows included Chopped and Beat Bobby Flay on the Food Network channel. One of his favorite things to do was “play” Chopped with Mommy and Daddy.
Connor also loved everything superheroes! On his first day of preschool, his teacher asked him what he wanted to be when he grew up. Connor’s answer, “Batman, of course!” And from that point on, he was forever our Connor Man.
Our lives were changed forever only a couple of months later. On December 15, 2014 Connor was diagnosed with DIPG, and we were told he only had months to live. Only days earlier, Connor was riding his bike around the neighborhood, playing short-stop on his t-ball team, and enjoying life as a preschooler. But within a couple of days after his diagnosis, our extremely active little boy was unable to walk and move the right (dominant) side of his body. He also had difficulty talking and swallowing. He started treatment immediately at MD Anderson, but his condition continued to rapidly decline. On Christmas Eve, with only two rounds of radiation completed, the doctors told us it was unlikely he would make it through the night. The radiation treatments had caused additional swelling around his brain. Against all odds though, Connor somehow survived that night. He faced multiple other complications throughout his treatment, but we never gave up hope.
After braving 30 difficult radiation treatments, and a 52 day stay at MD Anderson, Connor miraculously made it back home on hospice care. At this point in his DIPG journey, he had completely lost his ability to speak and move, his moments of consciousness were brief and rare. In early March, Connor had his first post-treatment MRI. The scans showed his tumor was slightly larger. The doctors were unsure if the increase in size was due to swelling from the radiation or if it had grown. The scans also showed Connor had hydrocephalus, which is fluid buildup around the brain caused by the tumor. In order to alleviate some of the pressure and in hopes that Connor would regain some of his motor functions, his doctors recommended an Endoscopic Third Ventriculostomy (ETV). Connor was still unable to swallow or eat on his own. During the same surgery, a gastrostomy tube (G-tube) was inserted into Connor’s abdomen to replace his nasoduodenal (ND) tube. We would use his G-tube for several months to both feed and administer his medications. Connor referred to it as his Iron Man button. Less than 24 hours after his surgery, Connor giggled at the movie we were watching. It was the first time we heard our little boy’s voice in over 2 months. In the coming weeks, Connor continued to make incredible progress. He endured speech, occupational, and physical therapy three times a week in our home. We were in awe of his amazing strength and determination. Next it was smiling, then talking, then more mobility in his upper body and being able to sit up on his own. It had been 2 ½ months since Connor had been able to eat solid food, but at his check-up with the neurosurgeon, he emphatically told his doctor he wanted a cake pop and mac n’ cheese. Our little boy was back! This time is what is referred to as the “honeymoon stage” and it lasted for less than three months. While he never regained his ability to walk or use the right side of his body, our Connor Man was resilient in every sense of the word, and he adapted rather quickly to his “new normal”. Not all children with DIPG get this precious time.
On July 15, 2015, exactly 6 months to the day of when he was diagnosed, an MRI confirmed the tumor had grown. However, our superhero, The Amazing Connor Man, never lost his resolve. Every morning he would say he had a good night, even if he had gotten sick, or had had difficulty breathing. He never complained and he would focus on the things he could still do and took great enjoyment from that. As his condition continued to decline, and his symptoms became more severe, we decided to celebrate his 5th birthday three months early. It was the last time he would see many of his closest friends and family.
Our beautiful little boy gained his angel wings on October 29, 2015, just weeks shy of his 5th birthday. His only brother, Ryan, was born six days later. We promised Connor Man we would continue his fight to Defeat DIPG. We donated his tumor to research at Texas Children’s Hospital in Houston, and the DIPG Registry. Connor Man’s light burned brighter than most, and he exemplified what it means to live life to the fullest. Our Amazing Superhero showed us the meaning of unconditional love and brought so many people together.
Connor Man is LIGHT. He is HOPE. Our Connor Man is LOVE.