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January 29, 2009 – March 21, 2016

Diagnosed: December, 2015

Written by Mary Ann Bragg, Carson’s mom

Carson Reid Bragg was born January 29, 2009. He was the first and only child born to Mary Ann Bragg. He was always a relatively healthy, very rambunctious and strong willed little boy full of life. He loved chocolate ice cream and sharing with his adorable fat cat “Hogarth”. Carson was the true definition of a water baby! He loved being in water. It did not matter if it was in the tub, in a pool, in the river, or even in a mud puddle in the yard. He loved being outside and building fires with his papa. Carson never knew a stranger and was always willing to tell someone about Dinosaurs and Sharks. He loved reading books to his nanny as well as having her read to him. Carson was a class clown in school and loved making people laugh. He always wanted to make people happy!

In December of 2015, my family and I received a diagnosis that would ultimately shake and shatter our entire world. The day started like any other day, we woke up and got ready for school and work. My mother and I worked in the school system where Carson went to school. We had a smooth morning! Shortly after we started our school day, we received and email from Carson’s teacher of him complaining of yet another headache. My mother and I decided to take Carson to the Children’s Hospital in Augusta to have him examined. We wanted answers to his constant headaches and his eye turning in towards his nose. All sorts of tests were ran but with one look from a neurologist, she knew something was off just by looking at how his eye turned in towards his nose and ordered an MRI to be done ASAP. The doctors telling me to go back to his room instead of the recovery room was, up to this point, one of the scariest moments of my life. In that moment, the doctor told me that my child had cancer. That this type of cancer would ultimately take my son from me was the most life shattering moment of my entire life. In the days that followed this diagnosis, my family and I tried our best to make sure Carson was as happy as he could be. We formed a plan of action in attempt to make the absolute most of whatever time we had left and to give him as much symptom relief that he could get. We knew that it would not cure it or make it go completely away but we hoped that it would give him just enough relief that he would be comfortable. We wanted him to feel as normal as he could for as long as we could.

In January of 2016, Carson was actively taking radiation treatments 5 days a week and taking enough medication for a grown person. We noticed Carson started acting a little strange compared to “normal” behavior, we brushed it off thinking it was yet more side effects of the radiation or the amount of medicine he was taking. Then one snowy night just weeks before his 7th birthday we had to rush him back to the Children’s Hospital in Augusta. We did not know it then but he was retaining fluid on his brain, which was causing him to be extremely lethargic. He had to have a shunt placed to drain the extra fluid from his brain into his belly to be absorbed back into his body naturally. After the procedure, we spent a couple days in the NICU. This was a scary few days. Carson finished his radiation treatments and came home days before his 7th birthday. We celebrated the best that we could. We was just so grateful that he was able to celebrate another birthday here with us.

February of 2016 was yet another trying month. The tumor on his brain stem was not growing and not progressing however, Carson had to go back up in dosage on some of his medications after making what we thought was good progress as far as coming off some of the medication. The amount of steroids he had to take every day was unreal for a child so young. Carson slowly started losing movement of the lower portion of his body. He was not walking anymore and was fully dependent on his wheelchair to get around. He was slowly starting to loose muscle mass of his legs and constantly said he could not move them. On my 30th birthday, we were at yet another doctor’s appointment in Augusta and found out that he had a second tumor on his spine. This second tumor is what was causing the paralysis of the lower half of his body. Due to the position of the second tumor compared to his first tumor, radiation was not an option. Chemo was not an option either because it would make him sicker.

March of 2016 was by far the hardest month of my entire life. Monday, March 21, 2016 shortly after 5 pm, my Munchkin gained his angel wings. He took his last breath surrounded by family in the comfort of his home. My mother read him his favorite book one last time and within 15 minutes, he was at peace and no longer had any trace of cancer in his body. He was finally free of all of his pain and no longer suffering. He was finally able to be that perfect little boy he always was. He was able to run, he was able to play, and he was able to just be a kid again. I remember the days before, making the phone calls to family and friends from out of town to let them know that time was drawing near and they needed to come say their final good byes. Carson touched so many lives in his short 7 years on this Earth. Carson will be forever loved and missed by so many people.

 

 

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DIPG is a devastating and aggressive brain tumor typically found in children.

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