“Diffuse Fibrillary Astrocytoma”

This is Neurosurgeon talk…..

What does this mean? Grayson has a primary brain tumor that developed from astrocytoma cells. Diffuse meaning it is what has been described as “sprinkling of cells or what looks like a sugar coating” throughout his brain, cerebellum and spinal cord.

Diffuse Fibrillary Astrocytoma is ranked as a grade II astrocytoma; with Pilocytic Astrocytoma features which is considered a benign variant with excellent outcome requiring surgery only. In contrast to this, this tumor is presenting as a malignant, diffusely infiltrating tumor and clearly does not fall under this simplistic category.

All Neurosurgeons we consulted with concurred that this tumor cannot be surgically removed.

This is Neuro-Oncologist talk……

Progressive Low Grade Astrocytoma/Disseminated Neuroglial Tumor

Grayson's MRI showed an infiltrative enhancing lesion involving the suprasellar cisterns, sella turcica and hypothalamus. Additionally, diffuse leptomeningeal disease around the brain stem and cerebellum was seen, on spine MRI, to extend down the spinal cord with diffuse, irregular, nodular enhancement of the meninges throughout the spine.

The best course of action and recommendation of all Neuro-Oncologists we consulted was to start a chemotherapy regimen that will at best, reduce the tumor; density and over all size, and at least stabilize it from further growth.

His chemotherapy regimen will continue indefinitely due to the fact that this is considered a chronic disease. What does this mean? There is no known cure for astrocytomas and the diffuse nature of this one makes it even more complex.

The Bottom Line……

Diffuse Fibrillary Astrocytomas are very rare tumors. There are over 120 different types of brain tumors and fibrillary astrocytomas are only 1.7% of them. Additionally, the diffuse nature of his tumor makes it even more rare. The statistics say that only 46% of patients will survive this tumor at 4.7 years and 0% will survive at 10 years.  We are likely beyond the 4.7 year mark which makes Grayson a survivor and we are looking forward to changing the long term statistics. He has gone through far too much, and fought too hard to give up now.

At the present time, more than 70 percent of childhood brain tumor patients will survive their disease, and the majority will suffer long-term complications; neurological, psychosocial and other medical complications.

Today in America 9 children will be diagnosed with a brain tumor.

Today in America 3 children will die from their brain tumor.

We continue to research all potential treatments for Grayson….we will find a treatment to conquer his disease, not only for him, but for all of the kids, their families and friends that are fighting this battle!

Grayson Alexander Arroyo-Smiley