What is DIPG?
Updated: Oct 2, 2018
On Monday, June 18, 2018, Clare was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance. Approximately 300 children in the U.S. are diagnosed with DIPG each year. While DIPGs are usually diagnosed when children are between the ages of 5 and 9, they can occur at any age in childhood.
Unfortunately, the survival rate for DIPG remains very low. At this time there is no cure for this tumor. The below chart represents the survival rates for each type of cancer that affects children.
Clare had symptoms that could have been confused with other traits some toddlers exhibit, such as toe walking, clumsiness, some trouble swallowing, and she would not enunciate her words clearly. The symptoms may have began in March or April, but we didn't think much of any of them individually, as we just thought that it was normal for a toddler.
On June 17, Clare developed a fever and would fall after trying to stand up multiple times. She began to slur her words. After an appointment the following morning with her pediatrician, he referred us to the ER at Rainbow Babies and Children's Hospital. Throughout the rest of the day, Clare received her first IV, her first CT scan, and her first MRI. For every painful prick or poke, she was given multiple stickers and prizes. Sadly, all the tests pointed to the same diagnosis. So, we left the ER around 8:00 pm on June 18, 2018 with 37 stickers, several band-aids, a new cape for Clare, and a terminal cancer diagnosis.