Kenadie is a 3 year old little lady nearing the end of her 6 weeks of radiation treatment. She was diagnosed with DIPG on December 30, 2013. She woke up that morning, and had lost her balance and coordination. By the next morning, she had lost her ability to walk completely. Her MRI results showed that she had a 4.5 cm mass on her brain stem..she was immediately transferred to Scottish Rite: Children's Hospital of Atlanta, where during her 2 week stay, she underwent many test and a brain biopsy. She is a fighter, and is in high spirits as she fights for her life. It is our hope that this support will allow her to live the best life possible on her journey to kicking Cancer's butt! #screwCANCER #hopeforacure #defeatDIPGContact the Organizer
What is DIPG?
-A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.
Source: The American Brain Tumor Association
-The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children-David N. Korones.
-The standard treatment for DIPG is 6 weeks of radiation, which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.
Source: St. Jude's Children's Research Hospital
In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects, which would be unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions, resulting in partial paralysis, loss of voice and sight, and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. THE CURE STARTS NOW!!!!
Source: The Cure Starts Now
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