Our Story, From Claire's Mom
First Signs
The first signs of Diffuse Intrinsic Pontine Glioma, or DIPG, were difficult to detect, but as a parent you know immediately when something is wrong with your child, but you don't know exactly what it is. At first, Claire became irritable, she started having trouble focusing in school, holding her pencil, and would get dizzy and fall at random moments.
About DIPG
DIPG is a cancer located in the part of the brain known as the Pons, a network of nerves that are responsible for all our basic functions, including the ability to see, touch, smell, and even walk. Even after extensive visits with countless specialists, her diagnosis didn't come until she was outspoken about losing feeling in her right hand.
Finding Sunshine
Parents are typically told that their children have 6-9 months to live upon diagnosis. Chemotherapy is seen as palliative and not life-extending option. While we still tried our best to find life-extending treatments, we ultimately believed preserving her quality of life in her last days was our best option.