Saturday, February 13, 2016


January, 2015

It's been four long months since the surgery to remove a hemangioblastoma from my sweet son's brain stem.
So much has changed.
My sweet son can now swallow and sustain his body with real food. His autonomic nervous system is showing signs of great improvement, with less issues with dizziness, blood pressure, heart rate and body temperature.
He is beginning to wean himself from the medicine that he takes to help with these issues.
He is also beginning to move on with the life he left behind four months ago.
And yet so much remains the same.
This disease carries on in its insidious way in my sweet, sweet son's body. What started as four hemangioblastomas ten years ago has turned into 20 central nervous system tumors.
He has had two tumor on his retinas treated in the past ten years. His pancreas continues to be muddled with odd cysts. His kidneys continue to show the a few cysts, bilaterally, on scans. A small solid tumor also now resides in his left kidney.
Renal cell carcinoma.
One small and crafty gene continues its path of destruction.
But our hope also remains steady. 
We still give thanks for the every day,
We still have joy in the moment,
And we believe in the cure.

And my sweet son remains unbowed,
With his grace,
And his determination,

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