Saturday, February 13, 2016


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,


My sweet son...
So many scars...
So much strength.

Good News!

November 19, 2014

Steven passed his swallow test at the NIH yesterday!  Mary and I picked him up late at the airport, just in time for all of us to crash into bed!

I'm off today, and I just enjoyed the absolutely best birthday lunch with my sweet son at Panera Bread.  It was belated for him, but perfectly timed for me.

It took Steven two hours to eat his potato soup, and his salad came home in a box.  It was, however, the best "long lunch" I have had in forever!

Senior homecoming.

Senior homecoming.
She's a senior!

Be still my heart!

One Month

Its been a month since the surgery to remove the tumor on my sweet son's brain stem.

He's had some pretty intense side effects from this surgery, mainly the loss of the ability to swallow.  He also has continued problems with his autonomic nervous system.  He still has difficulty standing without feeling like he will pass out.  Steven has learned to deal with it without actually fainting, but it is frustrating and limiting.  He also has issues with his body temperature, his pupils dilating, and other odd autonomic nervous system functions. It is at times overwhelming and often heartbreaking.

I'm worn.

But it's always appreciated and forever humbling to know that he survived such an intense surgery and he will soon again gain control over this ravishing disease.

He truly is our hero.

The VHL community are heros to us also. Friends that we've never met messaged me constantly with reassuring words during some of the darkest hours I've ever known. The love and support from our friends in the VHL community continues. They know and understand like no one else can.

This is without a doubt a daunting experience.

We are hoping that the next thirty days bring more healing. But if it doesn't, we know that we will learn to adapt, accept what may be, and begin to heal our worn, torn hearts.
Just as healing a broken body is a process, so is the healing of a broken heart. And maybe we never heal to be the same person that we were before. I hope our hearts will heal to be stronger...and more compassionate. Maybe our hearts will heal to have unimaginable courage.
Maybe as our spirits heal, we will be a little better than we were before.
And maybe our hearts will learn to be thankful always for the small miracles.

For thankfulness leads to joy.And joy leads to hope.Hope is all we need.

The Tube

October, 2014

We are learning how to provide optimal nutrition to Steven through the tube without resorting to the Ensure method of feeding.
Apparently eggs, pancakes, and fruit salad, when puréed and blended with coffee and milk, don't do well with feeding tubes. Neither does any sort of pasta or potatoes.
That said, we are doing a fairly good job at pureeing chicken (beef is not so easy to blend), eggs, fruits, vegetables, greek yogurt and olive oil (extra fat!) to keep our boy "fed".  
He has lost about twenty pounds since the surgery.  Five of those pounds were lost at home after we ditched the Ensure Plus (extra calories) feeds and moved on to food feeds.  Those five pounds, however, are well worth the lack of digestive problems, extra color in his cheeks, and an immune system that beat the bout of flu that went through our family in October!
We are learning as we go.

Building 10 at the NIH

October 4th, 2014

So long Building 10.  It's been real.


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