I was honored in 2016 by the VHL Alliance. I'm truly humbled...
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| Dr Bradley Straatsma (he diagnosed my mom in 1962) |
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| My children |
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| My son introducing me |
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| My speech |
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| Team VHL |
WOW!!!!
1. THANK YOU
a.
VHL ALLIANCE, Ilene, Susan and Heidi
b.
Family and friends
c.
Team VHL
i. These ladies helped raise over $40,000 for the VHL ALLIANCE
and will be running/walking at the Baltimore Marathon on October 15.
d.
Jeff. THANK YOU. You didn’t sign up for any of this…I
appreciate your never ending support, spending countless hours at doctor’s
visits, surgeries and making breakfast burritos at 2am. You’re always there
easing my mind when we wait for results and you never hesitate to jump on the
Suellen train, to wherever it’s going. I
love you, more than you know.
2.
I am beyond tickled, humbled and
feeling a bit unworthy of such an honor.
I’m grateful that you thought of me. But all I set out to do was
celebrate my mom.
3.
I never intended bringing the
spotlight onto myself, I never sought accolades, I just wanted to leave my mom
a legacy that she’d be proud of.
4. I also never set
out to be a fundraiser.
a.
Muhammed
Ali said: Service to others is the rent we pay for our space here on earth.
b.
Being
of service has been my mission for the last 6 years. That maybe, my small
gesture could make a difference. We have
to find a cure.
c.
As
I look out at all of your faces, I’m reminded that we all have a story…and
yours isn’t much different than mine.
d.
My
intent is to touch your hearts, motivate and hopefully inspire…
5. VHL or von Hippel
Lindau
a.
No one in my family had ever heard
those words before 1962.
6. In 1962: We
would leave home in the morning and play all day and be back when the
streetlights came on. John F. Kennedy was president, gas was .28 per
gallon. Those were days.
7. She was almost 25 years
old, 5’2” and barely 100 lbs. She had
auburn hair and green eyes, she was kind, generous, creative, smart and
fearless and beautiful. She never
complained about the hand she was dealt.
She was our mom.
a.
It was July 1962, when she woke up without the
vision in one eye. I was 5 years
old. I understood what BLIND meant but
everything else was lost on this 5 yr olds level of understanding.
b.
My dad tried to explain what was happening in
our home and how our lives would change.
c.
But someone forgot to tell my mom…because on
that same morning, I was told to jump in the car, mom is driving you to school.
d.
I did jump into the car. I was standing on the floorboards in the back
seat, straddling the hump of a 1940 something Buick, holding onto the front
seat, just behind my mother’s right shoulder.
We pulled out of the driveway and I’m waiting for someone to remind my
mother that she couldn’t see. We drove
up to the stop sign at the corner of Hamilton and Phillips. We both looked both ways and BOOM. She drove over the curb. I thought we were all gonna die. I remember this being very traumatic for
me. I refused to ever get into the car with
her again.
e.
She laughed when telling this story…she said, I
had one good eye. But she didn’t drive
for much longer.
f.
My mom would learn braille, walk with a white
cane and cook. She got a Guide Dog named
Enid. She took classes at Mt Sac, she
rode the bus everywhere…she was so brave, she was amazing. She was our Hero.
g.
My family wasn’t much different than your
family in the 1960’s. Except my mom was
blind and she had this thing called VHL.
8. VHL
a.
We’d never heard that word before.
No one in our family had it. At that
time we were told it was just an eye disease and if you didn’t get it by the
time we were in our 20’s, we wouldn’t get it.
GET IT? An interesting choice of
words.
b.
We had annual eye exams.
c.
My mother was adopted by her step
father and didn’t know anything about her biological family.
d.
Many years later doing our family
tree, I found that her father died at 41 years old of a massive heart attack, a
few months after I was born. Her grandfather
had died from a stroke, her uncle was paralyzed. Still, none of this had been connected to
VHL.
9. Uncle Bill
a.
My mother’s brother, my uncle Bill
was diagnosed with Kidney Cancer in the early 1980’s.
b.
I don’t remember anyone saying it
was related to VHL.
c.
This was the first Kidney Cancer in
our family.
d.
My uncle passed away in 1981 at 41
years old.
10.
My diagnosis
a.
In 1993 we had changed insurance at work. I was going through the booklet, looking for
a PCP and I saw Dr Bradley Straatsma. He
was the doctor that diagnosed my mom. I
had just been checked 6 months earlier but I made the appointment anyway.
b.
Dr Straatsma is a very kind, soft
spoken doctor. He is one of the founders
of the Jules Stein Institute at UCLA, where we’ll be tomorrow. He said he remembered my mom.
c.
It wasn’t long before a steady
stream of doctors, interns, and residents came to look at my retinas. I guess they don’t see too many VHL Patients.
d.
I was in a dark room. They had taken photos and they were now up on
the light wall. Rows of yellow/orange
globes with red lines that looked like lightning strikes and little clusters of
blood vessels.
e.
The walk back to my office was a
blur. I didn’t cry, I wasn’t afraid or
worried. Honestly I was more concerned
about the conversation I about to have with my mom.
f.
I set at my desk for a while before
calling… I’m a mom, I knew how I would
feel, hearing this news.
g.
I heard her sigh…Tears streamed down
my face. I told her I was ok and that I
would be ok. I wanted to jump through
the phone to comfort her.
h.
I was 35 years old. Within a week, appointments were made for my
brother and sister and our kids.
i.
My brother was diagnosed that
day. Dr Straatsma offered to treat him
at no cost because he didn’t have health insurance.
j.
As parents, we hope to pass along
certain familial traits…VHL is not one of them.
11.
The following year, my sweet, beautiful
Shana, just 19 years old had been having a series of headaches. They’d give her a shot and send her home. We weren’t alarmed, migraines ran in the
family. But this time…it was different,
she was having trouble standing and her vision was blurred.
a.
CT Scans would show 4 cysts blocking
the flow of fluid from flowing freely between the spine and brain.
b.
I tried so hard not to cry as my
little girl spoke with the hospital clergy and we signed custody documents,
giving me custody of her 2 small children. In case surgery didn’t go well. This is a ritual we’d practiced again and
again over the years.
c.
I remember kissing my daughter and
telling her that I loved her and that everything was going to be ok. I’d be waiting right here when she got
back. I stood in the middle of the
hallway as they wheeled her away, not knowing if that was true.
d.
This was the first brain surgery in
our family.
e.
The surgery went well…the neurosurgeon
asked if Shana has been out of the country because the cysts looked like
parasitic cysts. I asked him if it was
VHL? He didn’t know. A few days later Shana had another surgery to
place a shunt.
f.
We had excellent insurance and I was
allowed to stay with her. She was there
for 3 weeks. Later surgeries, different insurance, she’d stay 3 or 4 days.
g.
On the day we left the hospital,
they changed her bandages and clumps of her long beautiful hair fell into her
lap. We cried.
h.
This was the first brain surgery in
our family.
i.
Shana has had 7 brain surgeries and
they are currently watching a new one along with a pheo and kidney cysts.
12.
Shana’s son Davonte has had both
adrenal glands removed due to pheo’s. He
was just 13 yrs old when an ER doctor said he had high blood pressure. They told Shana to take him to his PCP but
never mentioned it was urgent or an emergency.
Three weeks later, his BP was 187/110 and he was taken to Children’s
Hospital in Orange County. They were
planning on surgery right away…I contacted the VHL Alliance because I read in
the newsletter that you have to be blocked before doing surgery on a patient
with a Pheo…they put me in touch with Dr. Michael Yeh (who you’ll meet
tomorrow) and he conferred with the doctors at CHOC. The surgery went well. Davonte’s last surgery was this past May. He is learning how to manage without adrenals
and a lifetime of steroids.
a.
BTW: Dr Yeh is part of the VHL
Clinical Care Center at UCLA. He is an
amazing gifted surgeon.
b.
This is the first Pheo in our family
13.
We always believed that VHL was an
eye disease. We didn’t know there were
brain and spinal tumors, pheos, kidney cancer or pancreatic cancer.
a.
The VHL Allance has always been
there to help us navigate our way through the maze of diagnosis. They not only help fund cancer research, they
provide patients with information and resources. A lot of us have to advocate for ourselves
and family members. We must educate our
health care providers…The VHL Alliance gives us tools to help us.
b.
In our family, most of us were
diagnosed through eye exams.
c.
My son Roland, who you met a few
moments ago, was newly wed and expecting their first child and decided to have
a DNA test to be sure. He didn’t have
any symptoms and had had regular eye check ups.
d.
When the results came in….he had
everything VHL had to offer. Retinas, brain, spine, adrenal glands, kidneys and
pancreas.
e.
When he should have been enjoying
being newly wed and expecting a little boy.
He was scheduling surgeries.
f.
Eyes were lazered, followed by a
bilateral adrenalectomy, then a whipple (he was in the hospital for 23 days), he
had two surgeries to remove kidney
tumors… (I posted his experience day by day on my block: http://vhlmymomandme.blogspot.com/mymomandme)
g.
He is currently managing without adrenal
glands. Not to mention taking vitamins
and minerals to offset a missing pancreas, staying away from kids with the
sniffles, managing everyday stresses, medicine interactions and heaven forbid a
crisis.
h.
This is the first Whipple in our
family
i.
BTW, Thank you Susan for being my GO
TO PERSON for Adrenal issues.
j.
Roland’s son not quite 2 years old
was diagnosed with VHL.
14.
My entire family has been affected
by this dreadful disease. I’ve talked
about my kids and grandkids but I have many cousins with VHL.
15.
I am not defined by VHL. It’s something I think about everyday but I
would never talk about it. That changed
in 2010. That’s when I started to tell
my story. I’ve learned that every one of
us has a story.
a.
My mother had always wished that she
could do more than her $25 annual donation.
b.
She was 71 years old. She was
courageous, larger than her 5 foot frame, her hair is grey now and so are her
eyes…from the cataracts. She isn’t but 5 feet tall and probably weighs just a
bit over 100 lbs. She never complained.
16.
In a hospital room at Arrowhead
Community Hospital we all stood around her bed.
She was sedated and tied down.
The nurse said she was pulling at her IV. I don’t think that was true…her fingers were
her eyes.
a.
I kissed my mom and told her that I
loved her…I told her that I would be right here when she got back.
b.
As she was wheeled out of the room,
I asked the doctor “what about the pheo?”.
He said not to worry the anesthesiologist would be taking care of her.
c.
Later I thought to myself, what was
the anesthesiologist gonna do?
d.
We were sent to the surgical waiting
room. The surgery was to take 5 hours.
At the 5 hour mark, I saw a nurse running down the hall. I got a lump in my throat. He disappeared for a moment and then came
into the waiting room. We all stood
anxiously waiting to be told that we could see her in recovery. Instead he says that my mother lost a lot of
blood and they were performing life saving measures. I think he was asking if they should
continue….
e.
Shana had gone to find her sister. We were still standing in the middle of the
room. I could see Shana on her knees,
praying in front of the elevator, I could see the doctor walking toward us. How was she?
He was speaking but I couldn’t comprehend the words. My daughters were now in the room and
everyone was crying… I told her I was going to wait right here until she came
back. She never came back.
f.
We suffered a great loss that
evening. She was our rock, she was the
glue…I’ve never hurt like that before. I
miss her every day.
g.
My mom always wanted to do more, to give
more. She said it was our duty, our obligation to do what we could.
h.
My intent here isn’t to make you
sad…I’m hoping our story motivates you to help us find a cure.
17.
On Mother’s Day 2011 we coordinated
the first Mom’s Day Run to honor my mother, to pay tribute to a woman who was
so kind and generous, to leave her a legacy.
We had no experience putting on an event like this…but we’d run many
races and knew what we liked and didn’t like about some of those big
races. So we took the best parts and put
on a little home grown 5 and 10k.
a.
48 friends and family came out, my
husband and I were up at 2am making homemade breakfast burritos for the
participants. We raised $1500.
b.
This was our first organized
fundraiser.
18.
I was just a daughter grieving for
her mother and wanting to leave her a legacy. And I hope that someday we find a
cure.
a.
Now, I tell anyone who will listen,
about VHL. We put on several fundraising
events throughout the year. 2 fun runs,
yard sales and pancake breakfasts. My
staff includes my husband, my 7 children, a couple grands and the Team VHL
ladies.
b.
My mother said: its’ our duty to be
good stewards within our community.
Raising awareness is one simple way.
c.
It’s important to do what we
can. To find a cure. So that our children and children’s children
won’t have to worry about MRI’s, CT Scans, PET Scans, tumors and
surgeries.
d.
Honestly, a cure today probably won’t
help me or my children…but, It might help my grandchildren and yours…and future
generations.
e.
We are all VHL Warriors: if you’re a
patient, you are a warrior, if you are caregiver, you are a warrior, if you
know someone with VHL, you are a warrior, if you raise money for VHL, you are a
warrior. YOU ARE A WARRIOR.
f.
I’d like to present a challenge, to
make a difference. Between now and the next Family Meeting, I’d like each of
you to make one little step towards finding a cure. This can be a small thing or an enormous
thing. Each and every one of you can make a difference. Even if it’s in the smallest of ways: Wear your VHL Warrior shirts and folks will
ask what is VHL?
g.
Fundraise! No amount raised is too
small. Have a yard sale or car wash, a
bake sale, a 5k…or poker or golf tournament.
A research grant might be just $200 short…you’d make a difference!
19.
My family has a saying…whenever one of us is
waiting for results, we say: we’re not going to worry until we have something
to worry about. We try our best to stay
positive and hope for the best, and I think that helps. And if we get a bad
result, we pull ourselves up by our bootstraps, rally the troops and deal with
it as it comes. We are VHL WARRIORS. And
we will NEVER GIVE UP.
This Sunday, is an opportunity to Raise Money and Awareness.
Please join us at the Team VHL 5K fun run/walk on
Sunday.
Registration is $25 and you’ll get a VHL Warrior Shirt.
I’d love nothing more than to see a sea of VHL WARRIOR
shirts walking down the WOOD CHIP TRAIL.
