Carson Hall was born in January 2012 and is the first born son to his parents. Carson loves to be active! He loves swimming in the summer, playing water balloons, playing on his swing set and most of all playing with his brother, Colton. He enjoys going to school and visiting the zoo – what little boy wouldn’t! Around the age of one, he began having respiratory issues, which were diagnosed as Viral Induced Asthma. However, he was otherwise healthy. He was meeting every milestone and was an extremely happy and loving child. There was no inclination that anything was, or ever would be, wrong with him.
In April of 2016, his parents started noticing changes in Carson. His behavior was different, his gait was off and he seemed dizzy a lot of the time. After weeks of persistent doctor’s appointments and phone calls, his behavior warranted a trip to the Emergency Room. The ER doctor did not realize the severity of the symptoms he was showing and told his mother that nothing was wrong, other than possible vertigo. Fortunately, the ER trip expedited a neurology appointment. On May 11, 2016 he saw a neurologist that was concerned and ordered an MRI as soon as possible. May 12, 2016 Carson’s family received the devastating news that Carson had an inoperable tumor on his brainstem, which is almost always fatal. He had, on average, 9 months to live.
“We made an appointment for a second opinion because as parents you can’t believe someone is telling you that your child will not make it,” said Lindsay, Carson’s mom.
On May 13, 2016 the Halls learned the name of the tumor was Diffuse Intrinsic Pontine Glioma, DIPG, and the prognosis was indeed correct. Carson received the standard 30 days of radiation therapy, which was completed in July of 2016. Prior to radiation, he was unable to walk or feed himself and was also very hard to understand. Shortly after radiation, besides the side effects from the steroids, you would not know anything was wrong with him. His tumor shrank an amazing 50% and he was back to himself!
In February 2017, a routine follow up MRI showed tumor progression. At this point he was not showing any symptoms, but his family was told they would see them in approximately 6 weeks. The doctor was spot on. They started noticing increased symptoms about 6 weeks later. The Halls contacted Carson’s doctors and came to an agreement to do re-irradiation. Carson is now 17 months past diagnosis and is 100% a normal 5-year-old boy. He runs and jumps and plays. The best thing post-diagnosis that his family has done to make memories is to travel. His Make A Wish trip was a Disney Cruise and they have traveled to Mexico to go to the beach, one of his favorite things to do! He lost his first tooth and he started Kindergarten, both things they never thought they would get to experience with their son.
Carson’s mother says, “Although our future is unknown, we are choosing to live each day to the fullest. We are busy making memories that will last a lifetime no matter what our future brings. What we do know, however, is that childhood cancer is extremely underfunded. DIPG is unknown to most people. We need to raise awareness. We need to increase funding. Most of all, we need a cure. We have to continue to work together to advocate for our kids and continue to spread awareness. Not just for DIPG, but for all pediatric cancers.”