Charlie has a quiet strength about him. Charlie loves to laugh, and has an awesome (yet sarcastic) sense of humor. Prior to his diagnosis he was an avid lacrosse player, and loves to watch games and string/dye his own lacrosse heads. He is also interested in rally and motor sports. He has always loved being in the woods and the beach. In his down time, you can usually find him scouring the internet for funny youtube videos.
Early this year, Charlie started having balance and coordination problems, nausea when laying down, slurred speech and facial weakness. On February 2, 2016 Charlie was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma), which is an inoperable, aggressive tumor in the brainstem for which there is no cure and only experimental treatments to buy time.
DIPG is a brain tumor that can be found in the brain stem. The edges of the tumor is “infused” throughout the brain stem which makes surgical removal impossible. DIPG is a very fast growing tumor and symptoms can appear almost overnight.
Charlie went through 30 rounds of radiation at our local hospital, and then was enrolled in a clinical trial of an experimental oral chemotherapy drug. We travel back and forth 10 hours each month to a hospital in Cincinnati as part of the trial. We are lucky to have been in the trial for 12 courses, and to have several stable MRI’s since starting the trial. Traveling far from home for treatment is difficult, but we are blessed to have found such a caring and compassionate team in Cincinnati.
Charlie has right arm and leg weakness, and he has pain and joint changes in his left hip and knee due to long term steroid use (steroids help with some of his other DIPG symptoms). He currently uses a walker to get around and a wheelchair for longer distances. He struggles with fatigue and decreased appetite, but pushes himself to go to school, physical therapy and out with friends. He never complains about his situation and always tries to be positive.
Charlie is thankful that he has had a good life so far, and thinks of all the younger children who have cancer and don’t get the chance to grow up. He is active in advocating for research funding and attended Cure Fest rally in Washington DC.
Hope session by Paige Everson.