When carson was 5 months old he started have strange unexplainable symptoms. We went to the er and got told he had thrush. Things didnt seem to get better so we took him to see his pediatrician. He sent us to a local haspital for a cat scan. We found out on Oct 24 2011 that carson has a pretty large Ependymoma brain tumor in the back left side of his head. It was pushing his brain stem over and blocking fluid passages in his brain causing him to have pressure build up in the brain. On Oct 27 th carson had surgery to attempt to remove his tumor. After 12 hours or surgery and the need for blood twice during surgery his surgeon removed about 95 percent of the tumor. The surgery left carson with nerve and muscle damage. He has a left side facial droop and a paralized left vocal cord. This caused him to have issues swollowing and protecting his airway. He then got a g tube placed for nutrition and required the use of oxygen when sleeping. Carson has just finished 30 days or radiation treatment and has big improvements in eating and developing. We find out on April 2nd if he is cancer free. Its been so hard to be a young mom and have a child with cancer. Thing are looking up and we are staying strong. : )
Carson has since had 5 recurrent tumors. He was diagnosed with recurrance in September of 2013 and received a trial therapy. He was tumor free until April of 2014 when he recurred in the same location again. He received another 30 round of radiation at that time. In May of 2015 the tumor had grown again. He received gamma knife radiation in July of 2015. In June of 2016 his stable tumor grew. He did a chemo trial therapy that failed. He had surgery to remove his tumor in late August. He recently took part in a vaccine trial therapy in Pittsburgh. That also failed. Carson currently has 5-6 small tumors. We are awaiting word on further treatment options and are taking things into our own hands with a holistic approach. We are running out of options and his disease continues to progress!
Carson's disease took his life on January 24th 2017. He earned his wings surrounded by the people who loved him most. He got to be held and loved by mom and dad in his final hours and minutes here with us.
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