The beginning of this video talks about the devastating diagnosis that is DIPG, Diffuse Intrinsic Pontine Glioma, a brain stem tumor. The video also highlights Claire's life and the light she shared with everyone.
DIPG paralyzed Claire's right side and made it difficult for her to talk and to swallow, but it did not take her spirit.
Please continue reading below to learn about Claire's diagnosis and why her appearance changed so much.
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DIPG, or Diffuse Intrinsic Pontine Glioma, is a rare brain stem tumor classified as a childhood cancer. The average prognosis after diagnosis is 9-months. DIPG has a 0% survival rate. There is no known cure.
DIPG wraps itself around the pons area of the brain stem. The pons is a major structure in the upper part of your brain stem. It is involved in the control of breathing, communication between different parts of the brain, and sensations such as hearing, taste, and balance. Claire experienced vertigo and imbalance shortly before diagnosis.
Standard treatment protocols may vary between hospitals, but usually begin with at least 30 days of radiation. Chemotherapy can begin shortly after diagnosis, but few studies have shown success at extending life expectancy. Most families are simply told to "make memories."
Some DIPG children, like Claire, require dexamethasone, a steroid that helps with the swelling in the brain caused by the Tumor. Most notably, the steroids cause rapid weight gain. In addition, it causes muscle weakness, nausea, dizziness, headaches, stomach pain, blurred vision, and swelling. After extended use, like Claire, steroids can cause Cushings syndrome, particularly the "moon face." Unfortunately, it is the only known steroid safe for pediatric use that is known to reduce swelling in the brain.
Childhood Cancers are vastly underfunded, with fewer than 5 new treatments approved for pediatric use in the last 40 years, compared to hundreds approved for adults.
Our goal in 2020 is to raise $50,000 towards childhood cancer research, effectively funding about 500 hours of dedicated research.