|   Monday, July 23, 2012

Charlie is a bright, friendly and utterly charming little 4 year old with a "monster" that lives in his little head.... a terminal brain tumor...Diagnosed with “diffuse intrinsic pontine glioma” or "DIPG”, Charlie was initially treated with radiation and steroids, but to no avail. This is a tumor that WILL take his life and sooner, rather than later.

"Right now, Charlie is in the ironically named "honeymoon period" of his disease. Like any normal 4-year old, he is bright, cheerful and full of life and love. All that is noticeable is a motor impairment in his speech ability, even though he talks non-stop and his cognition is above average. Already he has beaten the odds of a predicted nine month survival after his radiation and steroid treatment last year, but the tumor still lurks, unreachable, inoperable and fated to grow again at some unknown date.

Treatment possibilities have been explored, some tried. The focus now is on providing the best and happiest quality of life in the time remaining.

The disease is cruel, not merely terminal, but one where the sufferer often retains full cognitive awareness when motor functions fail in the final period."

In grappling with the horror, John and Abigail are determined that more help should be available for other families who face such a situation in the future. As a partial, but needed, distraction from the painful reality of the present they have put their efforts into fulfilling the cause of forming a foundation dedicated to families going through this horrible nightmare. Read more HERE about their foundation and the quest to conquer this disease and help families cope with this devastating diagnosis.

I ask myself daily.... why do people have to go through this? Why does this happen? What can I do to help?

What do you ask? How are you affected? Think about being handed something like this... what would you do?
If you dare, please take some time to read Charlie's Mom's journal and the letters she's writing to Charlie as they move through this nightmare of impending death. They are touching, heartbreaking and moving... click HERE to visit Abigail's Journal.