Friday, June 24, 2016
StevenSteven was diagnosed with Von Hippel-Lindau disease (vhl), a genetic cancer disease, in the spring of 2005. He was sixteen years old at the time and faced his first surgery to remove a brain tumor as a sophomore in high school.
In the the eleven years since, he has had three more surgeries to remove brain tumors, all related to vhl. The most recent surgery was in May of 2016. In this time span, a multitude (more than 20) of small brain tumors have appeared on Steven's scans. He has also been diagnosed and treated for two tumors on his retinas. His kidneys are now also showing the ravishes of this never ending disease.
Yet through it all he has remained positive, sweet, and never complaining.
BillsSteven is an adult now. He is making his way in the world in a manner that we all would hope our children would. He is responsible, determined and level headed in all aspects of his adult life.
He is, however, saddled with numerous medical bills from his most recent brain surgery. Money raised here will help pay off the bills accrued during this most recent surgery and bills to come in future surgeries.
HopeOur hope is a cure for Von Hippel-Lindau disease. Until that day comes, our hope is for help for Steven in paying off the medical bills that he has.
and please pass the word!
"Not if but when..."
Saturday, February 13, 2016
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,
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!
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.
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.