January 5, 2012 – February 10, 2018
Diagnosed: May 12, 2016
Written by Carson’s family
Carson Matthew Hall was born January 5, 2012. He was the first born or Lindsey and Matthew Hall. He was relatively healthy throughout his life with the exception of viral induced asthma. Carson was a very happy child, with a vivid imagination and large vocabulary for his age. He loved to dance and sing, play games, swim, be outside, and the BEACH! May 6th, 2015, he became a big brother to Colton, and he absolutely adored him from day one. As Colton grew, Carson would include him in everything he did, and he was Colton’s biggest fan for everything he did. We so looked forward to the bond those two boys would have their whole lives.
Unfortunately, 7 days after Colton’s first birthday, Carson was diagnosed with DIPG. After several doctors’ appointments and a trip to the ER, we were finally referred to a Pediatric Neurologist who ordered an MRI to confirm our suspicions that something was wrong. Carson was admitted to Wesley Children’s Hospital for the MRI on May 11, 2016. The MRI didn’t happen until around 8pm and lasted 2 hours. We then had a long restless night waiting for the results that were given to us the morning of May 12, 2016. We were told Carson had a brain stem tumor. That he could do the standard radiation therapy to potentially buy us some quality time, but that ultimately this would take our son’s life in an average of 9 months.
I wasn’t satisfied with the diagnosis we received, who would be? We spent the day trying to get records to Children’s Mercy in Kansas City for a second opinion while Carson spent the day playing with the Child Life Specialists and visitors that came to see him. We were discharged around 8pm that evening and had to be in Kansas City the next day at 11am. Unfortunately, the Pediatric Neuro-Oncologist confirmed the diagnosis, only it was at this time that we learned the actual name, DIPG. He concurred that radiation therapy was the first step and gave us information on clinical trials. We decided to undergo radiation back in Wichita, but under the supervision of Dr. Ginn from Children’s Mercy.
After the standard 30 sessions of radiation therapy, Carson quickly returned back to himself, which is known as the honeymoon period. We chose to live by the theory of “making memories” with him. So, we went on our Make a Wish Disney Cruise, a couple of trips to the beach in Mexico, and two more Disney Cruises. During that time Carson’s symptoms did return, and he underwent another 7 sessions of radiation therapy almost exactly a year after the first round. He was lucky enough to get a second honeymoon period, which is what allowed us to make so many wonderful memories with him.
His symptoms returned for the third time, and became very evident on the last Disney Cruise we were on. I was in denial, but Matthew saw it. I finally admitted to him that I saw what he saw. His symptoms did not hinder any of his abilities to have the best time ever on the cruise, so we made the absolute most of that trip, knowing in our hearts it was most likely the last we would ever take with him.
After that trip, we continued to soak up every moment with Carson. Unfortunately, his symptoms became debilitating and he lost the freedom to be himself; he became trapped within his own body although his mind was fully aware of what was happening. He took his last unassisted steps November 25, 2017 and his ability to speak and move his left arm quickly followed. Carson used his own form of sign language to communicate with me, and I typically was able to quickly figure out what he wanted or needed and he repeatedly used the same signs, making it easier for me to continue to know what he needed. More often than not, he asked for ice cream! One thing that Carson never lost was his amazing smile and I am forever grateful for that.
On February 10, 2018, in our arms, Carson took his last breath and went to Heaven. We are at peace knowing he is no longer trapped in a body that no longer could provide for him. He isn’t shy about showing us signs he is still near. We know he is a guardian angel for his little brother Colton and little sister Stella, and keeping a watchful eye over all of us.