Wednesday, April 11, 2018

Processing

I disagree with Elizabeth Kubler Ross.  I think the first stage of grief should be "processing".


Steven had his first post-op visit with Dr. V yesterday.  

He is healing well in the world of scars and wounds.

He expressed concern about the continued dizziness and nystagmus.

The wonderful Dr. V explained that it was the result of the stroke that my sweet, sweet son suffered.

This is the first that we had heard of this stroke.

I, per our agreement circa 2007, stayed in the waiting room.

I have no idea if the stroke happened during the surgery or immediately after the surgery.

It showed on the MRI that is routinely done 12 hours after the surgery.

The radiology report states "an acute infarction within the medial left cerebellar hemisphere within a PICA territory adjacent to the resection cavity with surrounding edema".

I have already googled most of the terms that I didn't already know.

He will be seen again in six weeks.

Dr V told Steven that more recovery is still possible.

The next appointment is May 22nd.

My sweet son is a crazy madman when it comes to determination and fortitude, so I'm being a crazy madman mother and searching for exercises he can do to reduce dizziness and nystagmus.

And I'm processing the idea that my sweet, sweet son had a stroke
and the reality of this disease,
and the possibilities of his recovery
and the plan of ways to help him.





Saturday, March 24, 2018

Life

Von Hippel Lindau disease is tough,

Steven is one month out of his most recent surgery.

He is not yet able to drive because of the resulting dizziness.

His eyes continue to lose focus because of the nystagmus.

I noticed last night that his gait is definitely off.

He is healing much more slowly than I expected.

My fear is that this is not simply a "healing" process this time but a permanent reaction to multiple tumor resections in the same area of the cerebellum.

and it never ends.

People ask how Steven is doing.

I try my best to explain the intricacies of his life at the moment.

I cannot truly describe the degree of dizziness or lack of coordination.

I can barely grasp the level of grief that I feel when I see my son struggling.

I truly don't know how to portray with words  my son's determination and grit.

I can't begin to describe the desolation of this disease.

The truth is that unless you live the life of multiple brain tumors, 
you will never understand it.

But we are stronger than any mutant gene.

We live in happiness
for time with family
for simple moments together
for good food
for peace.

We live in joy
for cherished moments
for scars that show miracles
for bodies that heal
for better days
for living.

We live in hope
for more healing daily
for less disease progression
for better days
for a cure.

We have hope.

For happiness leads to joy
And joy leads to hope
And hope is all we need.




Monday, March 05, 2018

Bits and Pieces
My sweet son is home now.
He is much more wobbly than I expected. Steven typically comes out of the hospital so strong and sturdy (with the exception of the brain stem tumor). He has lost a bit of balance this time, and he is using a walker for a short time until that balance returns.
His eyes are also suffering from nystagmus.
Both of these issues should resolve with time as the post-surgical swelling in the brain goes down.
While I am living with past traumas and future fears,
Thursday, deep in the middle of the night, we were told that because of the location of the tumor, Steven would need to have a swallow test in the morning (Friday morning). I froze...because while my brain knew that removing a tumor that was touching the brain stem (but not part of the brain stem) could cause "brain stem" problems from post-surgical swelling, my heart was not ready to hear this.
He passed the swallow evaluation.
Steven lives with hope.
This life gets very tough sometimes. At one point during the stay in the ICU, I was trying to boost his spirits and I mentioned to Steven that based on his MRIs, he should have a good 5 to 10 years before he has to do this again. He said, "Well I expect a pill by then."
A medical treatment for VHL related tumors is needed!
He is the strongest, bravest person I have ever known.
My sweet son is also the most determined person I have ever known.  Just as he did in 2014, when brain surgery left him unable to swallow, Steven is taking this walking set-back by storm.  He is determined to walk a little more each day without a walker.  He is also determined to walk a lot more each day with the walker!
We need a cure!
Steven has a great team behind him. 
Mary is learning the ropes of helping her brother heal. She did her second round of "surgery night" with me in the ICU. The last one, in 2016, was when Steven had hydrocephalus and was on a vent for the first 12 hours after surgery. This time he was fully awake and in severe pain. Both situations showed her to be the rock that I knew she is.
The nurses at TGH, both in the ICU and on the neuro-floor, were amazing as usual.
Dr V described this tumor as "a beast" under the microscope.
He also described the the removal of this beast as "by the books".
But even with an amazing team surrounding him, this is brutal for my sweet son.  Brain surgery is brutal. Opening someone's skull with a drill and maneuvering through brain matter with a blade is horrific. It is barbaric at it's most basic level. But brain surgery for VHL related brain tumors is the only treatment available at this time.
WE NEED A CURE!!

Surgery

Somone recently told me that I would begin forgetting the details of Steven's journey as the years go on...so now I'm going to record every detail!

Steven had a "routine" surgery on February 22nd to remove a tumor/cyst from the right hemisphere of the cerebellum.

Background: 

The tumor has been there since the early years.  It did the usual plodding growth that all hemangioblastomas seem to do in Steven's brain...a millimeter here, a millimeter there.

In December 2016, during his routine MRI at the NIH, a small cyst was noted on the tumor.  I'm not sure if the small cyst was noticed by me or by the renowned radiologist in Building 10, but it was noted none the less.

In December 2017, during his routine MRI at the NIH, it was noted that the tumor/cyst was pushing and half occluding the fourth ventricle.  Surgery was recommended to prevent hydrocephalus.  Steven was given a broad window of time, and he booked this surgery for the end of January, 2018.

January also happened to be a month for a 6 month followup with the amazing Dr V here in Tampa.  Dr V has always kept Steven on a yearly schedule of MRIs and clinic appointments, but this appointment was scheduled for 6 months because Dr V noticed this cyst on the scan the previous July.  Steven scanned early in the day and met with Dr V during the afternoon of the 16th.  He presented the information from the drs at the NIH to Dr V, and Dr V concurred.  Because of the partial occlusion of the 4th ventricle, this tumor needed to be removed.

Steven chose to do the surgery here in Tampa with Dr. V.  The date set for the surgery was February 22nd.

Surgery:

The surgery was early in the morning of the 22nd. We met Steven in admissions at TGH, and we all trudged up to the 2nd surgery area.  The nurse there told us to wait in the 3rd floor waiting room, as Steven needed a pre-op MRI, and that was where the MRI machines were.  We were still sitting there at 6:45 am, unattended and seemingly unnoticed, and the surgery was scheduled for 7:30!!  Steven was becoming very agitated, so I went back down to the 2nd floor surgery area.  The nurse there promised that people knew that Steven was waiting on the third floor.  Sure enough, by the time I got back up to the third floor, someone had come to get Steven.

We were all able to see him in the pre-op area.  Poor Mary had to leave for a presentation in her political science class!! Steven was taken away around 8 for his surgery.

My parents, Dale and I returned to the third floor waiting room.  It is more calm and serene and less crowded than the second floor.  Around 1 or 1:30 Dr V came in to tell us that our sweet boy was being stitched up and doing fine.  He had few words, other than that the surgery went as planned.

We were told that in about an hour or so we could see Steven in the recovery area. We all trudged back down to the second floor waiting room...and waited...and waited.  While I'm not sure of the exact timeline here, I believe it was around 3 or so before we were able to go back and see Steven in recovery.  He was, understandably, groggy and not very responsive to us.  The nurse tending to him did mention that he had stopped breathing several times, but he was able to get Steven breathing again by rousing him.  I am beginning to think that this is Steven's "go to" behavior after anesthesia.  Because of the breathing issues, the nurse held off on early pain medicine.  Our sweet son was hurting!  We were also told that there were no beds in Neuroscience ICU, and Steven would have to remain in the recovery area until a bed opened up.  (I didn't realize, but certain areas of recovery are considered an "intensive care unit".)

A parent from my school walked past us, as Mary and I were standing over Steven, and asked if I was a teacher at her son's school!  Small world!!

My parents, Renee and Dale all had a chance to go back into the recovery area and see Steven, then they were ushered on home.  There was no point staying.  We did not have "easy access" to stay with Steven and tend to his needs as we do in the regular ICU.

Mary and I hung out in the 2nd floor waiting room...making camp so to speak.  I was getting very "teary" about the possibility that I would only be able to see Steven for 5 minutes every hour that night...and only after asking for an escort back to his bed!

Thankfully around 6:30, a bed opened up and Steven was moved to the Neuroscience ICU.

4 Days

 With the exceptions of the removal of a tumor from the brain stem in 2014, Steven always stays four days in the hospital. The stay in the ICU varies...it used to be 1 day, in 2016 he stayed all 4 days,  and this time he stayed until Saturday evening.

The Neuroscience ICU is a strange and frightening place.  Beeps are going off everywhere, and since the glass doors to the rooms are often open, you can hear every machine beeping within a 20 foot radius. 

Steven's first night was filled with horrible pain and a nurse more occupied with bowel movements than pain control.  He was on a morphine infusion every two hours.  The nurse tried each time to get him to take an oral medicine (not sure which one...) and an oral laxative, because she was worried about morphine causing constipation.  I told her many time that Steven has a 90% chance of vomiting after brain surgery...she kept trying.

Finally around midnight, Steven took the oral pain medicine, smashed and mixed with a small amount of applesauce.  He kept it down.

About an hour or two after that, the nurse mentioned that Steven had a swallow test in the morning.  This tumor, while not on the brain stem, was deep  in the cerebellum and was pushing the brain stem.  At the mention of the swallow test, I told the nurse that Steven would only use morphine infusions to control pain, and nothing else would be offered via mouth until he passed that swallow test.

He passed the swallow evaluation the next morning.

Steven had an MRI around 3:30 a.m.  I remember the neurosurgeon on duty pulling the pictures up on the bedside computer, and I remember smiling in my sleepy daze, at the sight of a missing tumor.

Friday (day) was spent with more visitors (Nana and Renee), more evaluations (swallow, residents, the ICU critical care doctor), some sweet patient care from a woman named Morgan, sitting in the chair, and several medicine/fatigue induced naps.  Dr V came to see Steven.  He again mentioned that the surgery was "by the books".  He also mentioned that this tumor was "a beast" under the microscope.  Steven talked to Dr V about some vision problems.  He was having severe double vision at this point and nystagmus.  Dr V assured him that the vision issues were likely a result of the swelling in the brain around the cranial nerves, and it would resolve with time.  Steven managed a few very short walks on the ICU floor as the day went on.  It was a crazy busy day for the nurses, so I managed the walks. 

Friday evening I came home to shower, change clothes, and hurry back to the ICU.

Friday night was a much more peaceful night.  While sleeping in the ICU is never robust nor prolonged, Steven and I both managed a decent nights sleep.

Saturday morning I watched the Gasparilla 15K and 5K from Steven's window.  The finish line was just off to the right!!  He was a bit dizzy and didn't make it over to the window.

Physical therapy and occupational therapy came to do some evaluating.  They noted some weakness/lag in Steven's right leg and face and the general stumbling when walking. They also noted the nystagmus. A social worker came by. I  believe her main objective was to make sure that Steven had a safe place to go to when he was discharged.  She may have also been checking that he had someone with him and wasn't going to an empty apartment.  I am not sure! An ophthalmololist came by to check Steven's optic nerves.  All was well in the eyeball, but he did get a good reminder that he needs to schedule a complete retinal check with Dr Paven at USF.  He was now chair bound because of the dilated pupils.

Around 6 pm or so the day nurse mentioned a transfer to the regular neuro-floor.  Steven was moved to the 9th floor, west pavilion, soon after.  He had a nice private room and a television that required watching several medical infomercials before any other channels were accessible. 

I went home to sleep.

Sunday morning was routine...visits from nurses, the neurosurgical nurse practitioner, dietary, and odds and ends. 

Steven was discharged sometime around 2. 

These are the details that I never want to forget!!


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

Simply


Steven
     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.


Bills
     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.


Hope
     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 

 https://www.gofundme.com/stevenmedicalfund 

and please pass the word!



                                           "Not if but when..."

Saturday, February 13, 2016

Unbowed

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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