A Mother’s Story

When you hear a diagnosis of a brain tumor for your 7 month old “healthy” son, it is surreal. That is until surgeons, oncologists, endocrinolgists, hemotologists and many other unheard of doctors come to visit you in the Pediatric ICU. I can remember that day like it was yesterday, only it was five years ago. My son, Campbell, was diagnosed with a Pilocytic Astrocytoma, Glioma Brain Tumor on April 2nd 2008. The Neuro-Surgeon removed more than 80% of the tumor and believed it to be benign. Three months later the tumor had grown back to its original size with a cyst attached to it and malignant. Campbell had another Craniotomy and began weekly chemotherapy until the the cancer was gone.

Campbell endured 2 and a half years of weekly chemotherapy, and showed everyone during this time how amazing he was!!! Half way through the 2 years, Campbell had a neurotoxic reaction to one of the chemotherapy drugs which caused him to lose some function in his left foot. It was at this time where we drew concern for him, as there are not many new drugs for pediatric patients today, and there haven’t been for the past twenty years. I remember back when Campbell’s oncologist suggested a newer drug that would be a perfect fit for Campbell, but because of it’s cost, it would take time to get it to him. Finally, it did. It is my pleasure to say that the new chemotherapy, after another year, has put Campbell into Remission! There were no words we had for the happiness we felt at that time.

Unfortunately, that happiness was short lived. Eight months into Campbell’s remission, we learned of his relapse and we also learned of his lack of options. I remember the despair I felt, I remember loss of hope I felt, and most importantly I remember how scared I was that Campbell would die.

There are not many sentences that I replay in my head over and over again, but there is one that I replay daily. Sometimes twice a day.

Spoken from Campbell’s oncologist: “Sherry, just because we can’t fix Campbell doesn’t mean someone else can’t. I will find an option for him.”

I hear those words every day, even now – almost two years later. That is exactly what he did; find an option for my little boy. Was it hard? Yes. However, it worked and Campbell’s tumor has been stable for over a year.

It is so important to continue to find new options for these little ones, it is so important to help them live to become the adults they deserve to be!

Sincerely,

Sherry Taft

Mother of the Brave Campbell Taft