Showing posts with label Steven. Show all posts
Showing posts with label Steven. Show all posts

Friday, June 24, 2016

Just So You Know



November, 2016

...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.

Denied.

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.

Routinely.

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

Friday, November 11, 2011

A Day Late


...and a not a dollar short!...

Yesterday was my sweet son's birthday.

Though we called him bright and early yesterday morning to sing happy birthday, I am a day late in wishing him a world-wide-web happy birthday.

He's a poor, struggling law student now, so his dad and I "padded" his checking account a bit.

So he is no longer a dollar short!



He also asked for a recent picture of his dogs, and I do my best to make birthday wishes come true!

Sunday, August 21, 2011

Law School

True Stories
For the Record.

Steven bumped into a fellow law student while leaving his torts class the other day. The other student looked at him and asked, "Did you have intent"?

For the record, my sweet son appreciated the humor in this statement.



It seems that many of my sweet son's fellow law students are driving Porsches and other fancy stuff.

How do they do that?

For the record, my son has a 1999 Mercury.

Thursday, August 04, 2011

News from Building 10

The Good News

The cyst is the same as it was last May with Dr. V.

It's just a small blimp at the bottom edge of the brainstem tumor.

The Bad News

We didn't get to see the famous Dr. L. In fact, even when things are moving and shaking and looking surgery-bound in my sweet boys brain, we've never seen Dr. L.

We also didn't get to see the fellow until 12:05. (I understand waiting patiently...but we are also on a shuttle/plane schedule!)

I did quickly ask, as the fellow quickly assessed my sweet son's neuro function, if this has ever been seen before with VHL brain cysts, and it hasn't. I was also able to quickly ask if the fellow had an explanation for the disappearing cyst, and he said, "The cyst might have ruptured."

And then we left!

If I hear "we don't know" even one more time...
I'll explode.

News from the Inn

We just can't help it!

Every time we've checked into the in for the past six years, yes! six years!, I've used the elevator to carry baggage to the room.

I can't help it!
Whether it be from the typical early flight, the two hours in the air, or the monotony of long hours of waiting in the airport, I'm exhausted by the time we reach the inn.

My sweet son, on the other hand, has raced up the stairs for six years, yes! six years! He has boundless energy, takes the steps two at a time, and likes to goad me for my travel weary ways.

He can't help it!

And he beats me to the second floor every time!
We've played with rules and changed approaches, but without unforeseen circumstances like a stampede of five year olds or a broken tibia, I doubt that I'll ever beat Steven to the second floor.

I just can't help it!

Steven's itinerary from the nurse at NIH allowed him reimbursement for a hotel room this trip. Because my sweet son now receives these itineraries himself, and because of his general lack of planning, we didn't know that we had the opportunity to stay at a hotel this time until well after we were checked into the Inn.

My sweet son is honored that he is being acknowledged for the adult that he is, and he will gladly stay at a hotel next time.

I'll be sad when the "race to the room" doesn't happen any more.
I'm tired of these big changes.

We just can't help it!

I hope my sweet son will treasure the memories of "the race to the room" half as much as I will.

Tuesday, August 02, 2011

We Leave Tomorrow Morning

We're NIH bound in the morning, via the Baltimore airport and the lovely NIH shuttle service.

Steven's itinerary for tomorrow includes phlebotomy, a nice dinner of his choice, and a very late MRI.

Thursday morning we'll see the brilliant doctors in neurosurgery and try to reach some conclusions about this missing cyst. I plan on seeing the most scans and seeking answers.

We'll be home late Thursday evening.

Friday, July 15, 2011

Brotherly Love?

They're home now.


We're not,

and I miss my boys.

I'm a self-admitting neurotically-obsessive mess of a mom.

Thursday, July 07, 2011

Words Heard

...before you leave on a 1100 mile adventure...


"Do they have a rainy season in Pennsylvania?"

"No. They have a snowy season in Pennsylvania
."

Pray for this sweet son of ours.
I am afraid that he will traipse the campus in sneakers during that first snow storm!

Monday, June 27, 2011

Summer

The best part of summer




has been staynig up late and
watching scary movies every night.

Every night!

I do believe that I'm going to miss summer come mid-August.

...sigh...

Saturday, June 04, 2011

Words Heard

...when great minds meet...

"You know, Abraham Lincoln was a great president."



"I know, and Martin Luther King Jr. was a great doctor."

Saturday, May 14, 2011

Nothing

...but a missing cyst and clandestine plans...




Missing Cysts

Last December, during a routine scan here at home, a cyst was seen in my sweet son's brain, attached to a tumor and snuggled against the brain stem.

In late December Steven started an oral prescription medication for hair loss.

In February the cyst and accompanying hiccups were noted by the brilliant doctors at the NIH. These doctors, who study VHL more intensely than anyone else, suggested immediate surgery. My sweet son, because he was in the middle of the last semester of college and didn't want to ruin his plans for an August start at law school, asked if the surgery to remove this tumor could wait until May.

After a long and convoluted conversation about symptoms, dangers, and outcomes, all agreed that Steven would wait until May, return to the NIH, have this nasty tumor removed, and start law school without any hiccups or VHL worries.

On the way home I began talking to my sweet son about the importance of keeping his local neurosurgeon advised of these plans. So Steven made an appointment with this Dr in mid-March, and I accompanied him.

Dr. V saw the cyst, commented on symptoms, and asked why the drs at the NIH would recommend surgery when the only symptom is hiccups. We explained what the good drs at the NIH told us. To the best of our muddled understanding, the drs at the NIH are finding that brain stem tumors almost always need to be removed, that beginning symptoms are a precursor to horrible side-effects of the tumor, and that they feel now that it's better to remove these tumors before the horrible side effects occur, as swallowing problems, numbness in limbs, and constant nausea don't always cease after surgery.

Dr. V listened intently, nodded his head a few times, and told Steven to re-scan in May and come back to see him.

Which bring us to the most recent scan of my sweet son's battled brain.

The cyst has all but disappeared.

No miracles, folks, as a miracle would mean that the cyst had completely disappeared. A miracle to us would be a brain free of disease or a gene that corrected itself. A miracle would be a drug that prevented further surgeries.

This is just a cyst that has followed a path not seen in VHL and diminished to a size that is barely visible.

After looking at the recent scans, that were sent overnight to the NIH, a resident dr working in neurosurgery at the NIH phoned my sweet son. This dr mentioned that the difference in the cyst doesn't appear to simply be a different cut of the MRI machine. This dr asked Steven if he has had radiation to that tumor, in an attempt to explain this finding. Steven, of course, replied "no", but he did mention this medication for hair loss that he's been taking since late December. The resident told my sweet son that his scans would be reviewed the next day by the lead drs in VHL studies at the NIH. The next day, in a flurry of missed calls and email correspondences, Steven was told that VHL brain cysts don't simply disappear or diminish significantly in size. He was also told that these drs won't answer any questions about what could make this cyst diminish so brilliantly until his next appointment in August, because cysts attached to tumors in the brain of a VHL patient simply don't diminish significantly. These doctors also deferred to Dr. V in regards to surgery plans. Dr. V, of course, doesn't see surgery as an option now. He would prefer to watch this tumor closely and be informed of the next MRI from the NIH. This MRI will happen in August.

August is also when my sweet son starts law school.

My son, to say the least, is frustrated. He's frustrated because his plans for this summer, including a meaningful internship that he had to pass up and exciting travels that couldn't happen, were cancelled, based on a brain surgery that was all but written in the books. He's abundantly frustrated that even the most brilliant drs in this field don't have answers for him. He is most frustrated that he's now expected to start law school with what we consider a very unstable tumor.

And we, by association, are frustrated.

Clandestine Plans

I teased a bit back in late December, amid the tears and disbelief that accompany a bad scan, that this prescribed medication that my sweet son was taking to treat hair loss might be the answer to prayers for thousands of VHL patients.

I was simply teasing.

After seeing the latest scan, however, I began thinking about the timeline of the changes in the cyst and the medication, the fact that this medication inhibits the formation of certain male hormones, the common but unproven belief that VHL tumors respond negatively to hormones, and the response from the NIH doctors that VHL brain tumor related cysts don't simply go away on their own.

And I brilliantly decided that the decrease size in the brain stem cyst was directly correlated to the taking of this medication.

And I suggested to my sweet son that we now work on proving causation between the medication and the cyst in the little lab that we like to call "the upper left shelf of the corner kitchen cabinet".

I hope this is the miracle pill.






Saturday, May 07, 2011

For Aunt Jan

Take lots of pictures before the big event...

because it's difficult to get a good picture at the ceremony!

Monday, May 02, 2011

The Week in Preview

Monday: Go to work, pick up my girl at school, stop by the grocery store, cook dinner, wash dishes, do a load of laundry.

Tuesday: Go to work, run home and warm the left-overs, wash dishes, attend a school affair, do a load of laundry.

Wednesday: Go to work, pick up my girl from school, run to the university and see my son for a few minutes, pick up dinner, eat dinner, wash dishes, do a load of laundry.

Thursday:
Attend the graduation ceremonies of my oldest son,
celebrate,
savor the memories,
acknowledge his accomplishments,
appreciate the sweetness of this semester,
shed a few tears and use a few tissues.

Friday
: Go to work, bask in the beauty of grace, pick up my girl from school, shed a few happy tears, stop by the grocery store, bask again, cook dinner, shed a few more tears, wash dishes, do a load of laundry, bask in the beauty of grace one more time, watch a movie, fall asleep at peace.

Saturday, April 23, 2011

Conversations

"Mom, I'm really busy studying today. Can Dad and David run to Lowes and get the free trees for EarthDay?"

"Free trees? Wow!"

"Yeah, they'll be great for the backyard."

His father was not amused by the size of the "tree".
His brother was.
And his puppy considered this "tree"..."lunch"!

"Steven, is 'The Avengers' coming out in theaters this summer?"

"No, Mary...how do you know about 'The Avengers'?"

"Because you took me to see 'The Hulk' that one summer and you told me all about the Avengers."

"Well, 'The Avengers' doesn't come out until next summer, but this summer we can see 'Thor' on May 6th and 'Captain America' on July 22nd."

And my super-hero-loving, movie-going son graduates from college in two weeks. I think I know how he plans to spend the months before law school starts. Now if only a Batman and Spiderman movie would premier this summer, his life would be complete!

"Dad, tell mom that she doesn't need to come for this MRI."

"Ok."

"Ask her if she'll be there for the appointment."

Always my sweet son.
Always.


Sunday, March 06, 2011

Did You Know

that my
sweet smiling,
book reading,
peace loving,
disease fighting,
deep thinking,
soft speaking,
cause finding,
soccer playing,
movie watching,
scar wearing,
knowledge bearing,
environment saving,

son

also
plants gardens?

Sunday, February 27, 2011

FYI

Just so you know:



Getting accepted to law school




for the second time in two weeks







is pretty amazing,





and so is celebrating with your family!





Just so you know:

-My sweet son is now expecting an acceptance letter
on every Friday for the next six weeks!

-Steven has an appointment with Dr. V,
here in Tampa, in late March,
and he will begin to make decisions about surgery
to remove that nasty brainstem tumor then.

-We're being brave,
expecting the best,
living in hope,
and ordering graduation announcements
tomorrow!


Friday, February 18, 2011

Flexible

My sweet son has learned to be flexible,
living with this disease.

He understands that surgery is pending,
and he won't be allowed to travel this summer,
let alone run with the bulls.

He accepts these disappointments
with such grace and maturity.

Usually.

But now my sweet son is insisting
on a graduation gift to Pamplona
and a chance to run with the bulls

after

he graduates

LAW SCHOOL!!!!!

(He has received his first acceptance letter!)



Thursday, February 03, 2011

Preliminary Report

It looks as if
my sweet son
will not be
running with the bulls
this summer.

Wednesday, February 02, 2011

Against All Odds

Against all odds
my sweet son and I
flew on two different airlines,
into two different states,
at very different times of day,
and we both arrived on time!

Against all odds,
the DC airports seem to be covered
with a small pocket of tepid air
that is surrounded
by a maelstrom of ice, snow and sleet!

Steven has an early MRI in the morning,
followed by a visit the next day
with the brilliant neurosurgeons,
who will help us make plans
to allow Steven
to
dream his dreams,
and
live his life
against
all
odds.

Sunday, December 26, 2010

Sustenance

My sweet son likes to say that he comes home for the food.

I always thought he was teasing,

but maybe he's not.

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