Friday, June 24, 2016

Just So You Know

...this is personal.
I, along with the majority of our nation, watched the election results this past Tuesday until the wee hours of Wednesday morning.  

But for us, it wasn't about political positioning, yellow journalistic falsities, lobbying to maintain a status quo, or even the brutal words and barbaric statements.  

This election, for us, was about one candidate promising to revoke the Affordable Care Act during his first 100 days of office if he was elected President.

It was personal.

Millions of people in this country have what is termed a pre-existing medical condition. This conglomerate mess of maladies varies from something relatively minor, such as an old sports injury, to an illness of great impact, such as heart disease or cancer.

Cancer, the mother lode of pre-existing conditions, affects roughly 11 million Americans.

And all people with von Hippel Lindau disease, regardless of the state of their health, fall under the category of "cancer."

So this need for election was personal to our family.
Early in 2008 we were faced with a possibility of Dale's company shutting down the plant in Tampa.  Steven was a college freshman at this time, and he was still covered as a dependent on Dale's employer-provided health insurance. When we learned of the possibility of the plant being closed, I began to pay close attention to leaflets that came in the mail advertising inexpensive health insurance for our college student.  

I wanted to insure health insurance for Steven if Dale should lose his job.

As each pamphlet that arrived in the mail, I naively called the number listed on the back and waited my turn in queue to speak to a representative.  Each time I was asked a series of questions about Steven, beginning with general questions about age and healthy living habits and ending with a list of pre-existing conditions.  The last illness that was on these lists was always "cancer".

I answered honestly...I always explained that I really didn't think my son had cancer, but he did have a genetic disorder that predisposed him to cancer.  After a few more questions, regarding what this illness was and if Steven had any surgeries or tumors because of this illness, each and every representative told me that my poor son would not be able to buy into health insurance.

This devastated me each and every time.

In a country that bases it's principles on "promoting the general welfare", my sweet son was denied the ability to buy health insurance that he so desperately needed.


This is personal.

Health insurance companies are not here to save lives. They are in the business of making profits, huge profits. People with cancer are a liability to insurance profits, a huge liability. Before the health care reform of 2009, insurance companies routinely denied private health care plans to individuals with a cancer diagnosis.


In September of 2014, our son had a surgery to remove a tumor from his brain stem.  While the surgery was a success, it left him with some rather debilitating impairments.  He was unable to swallow and was fed through a tube inserted into his stomach through his abdomen.  His autonomic nervous system was left in shambles.  He was unable to stand without fainting. He could not regulate his body temperature.  His pupils didn't constrict or open according to the amount of light shining on his eyes.  

He was a mess and needed several months of recuperation for these issues to resolve.

During that time of recuperation, our sweet son turned 26 years old.  While we celebrated that birthday with quiet wonder at the miracle that he was alive, we were also petrified at the thought that our son, who still depended on us for health insurance, was now of an age that would automatically remove him from our plan.

Because of the health care reform of 2009, however, we needn't had worried.  Quickly and without issue, Steven was able to buy into a health plan that was in a price range that his father and I could cover.  The health care reform act of 2009 gave Steven the right to buy insurance, a right that most of this nation takes for granted.  It also gave us peace of mind.

This was monumental.
Our sweet son is quickly approaching an age and stage in life which will prevent him from being covered under our employer-provided family plan. So I started testing the water, so to speak, of buying an individual health insurance plan for Steven. But despite my best efforts of searching for alternatives, he was routinely denied coverage by all health insurance companies that we contacted.

And with a quick swipe of a pen, a new president, with an agenda that most people don't even understand, will take this right away from him.

From Steven's perspective, and the personal situations of 11 million others, the need for health insurance reform is,was and always be huge.
There are many resources right now that can explain the nuts and bolts of the Affordable Care Act in ways that I would never be able to nor attempt. While I still think that the plan would be better with a public option, for my very sweet, personal reason, the bill that was passed years ago is not the demonic creature that many claim it to be.

I realize that it raised premiums for all.  Again, a national health care program, along the lines of those provided by some other nations, would be the best alternative.  Simple taking the ability to buy insurance away from millions of Americans is the worst alternative.

"How we walk with the broken speaks louder than how we sit with the great"  Bill Bennot


     Steven 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.

     Steven 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.

     Our 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.  

     Please visit 

and please pass the word!

                                           "Not if but when..."

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,


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.


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