My name is Caitlin Presley Downing and I am 4 years old. I love to smile, go to school and put bows in my hair. I have an older sister, Courtney, an older brother, Cole and a younger sister, Campbell (affectionately nicknamed “Bull”).
January 13th of this year, I was diagnosed with a Diffuse Intrinsic Pontine Glioma. This is an inoperable, and untreatable brain stem tumor. Dr. Amy Smith is my pediatric neuro-oncologist and she is highly respected and super nice! She has given my parents a prognosis of about 8-15 months of survival.
This diagnosis came following only 5 short days of symptoms that progressively got worse until mommy took me to the doctor.
I recently finished 6 weeks of daily radiation treatments to shrink my tumor. This was successful. The radiation has made the tumor small enough that I am symptom free again. I don’t have crossing eyes, double and blurry vision. I am not dizzy, not falling down and not walking into walls anymore. I can jump, play and turn my head straight to look at things.
Unfortunately, this will not last. My tumor will grow back. It could be as quickly as 6 weeks, or could take 6 months. When it does grow back, Dr. Smith and other specialists have told mommy and daddy it will come back and angry and more aggressive than before.
Until then, mommy and daddy have asked everyone to help let my light shine….
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