tag:blogger.com,1999:blog-4278966170902751752024-03-13T06:44:31.712-07:00VHL, My Mom and MeThis is a blog about VHL, My Mom and Me...and the rest of our family who have VHL. We are sharing our stories our experiences and hopefully you will laugh and sometimes cry with us too.VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.comBlogger49125tag:blogger.com,1999:blog-427896617090275175.post-67231535723976714632017-01-03T09:23:00.003-08:002017-01-03T11:27:42.981-08:00VHL ALLIANCE AWARD<br />
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I was honored in 2016 by the VHL Alliance. I'm truly humbled...<br />
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<tr><td class="tr-caption" style="text-align: center;">Dr Bradley Straatsma (he diagnosed my mom in 1962)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My children</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My son introducing me</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My speech</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Team VHL</td></tr>
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<br />
<div class="MsoNormal" style="line-height: normal;">
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<span style="font-size: large;"><br /></span>
<br />
<br />
<span style="font-size: small;"><b><span style="font-size: xx-small;"><span style="font-family: "arial" , sans-serif;">WOW!!!!</span></span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpFirst" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif;">1.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></b><b><span style="font-family: "arial" , sans-serif;">THANK YOU</span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">VHL ALLIANCE, Ilene, Susan and Heidi</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Family and friends</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Team VHL</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1.5in; text-indent: -1.5in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;"><span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span>i.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="font-family: "arial" , sans-serif;">These ladies helped raise over $40,000 for the VHL ALLIANCE
and will be running/walking at the Baltimore Marathon on October 15.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">2.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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. </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">3.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif;">4.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></b><b><span style="font-family: "arial" , sans-serif;">I also never set
out to be a fundraiser.</span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Muhammed
Ali said: Service to others is the rent we pay for our space here on earth.</span><span style="font-family: "arial" , sans-serif;"></span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span><span style="font-family: "arial" , sans-serif;"></span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span><span style="font-family: "arial" , sans-serif;"></span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My
intent is to touch your hearts, motivate and hopefully inspire…</span><span style="font-family: "arial" , sans-serif;"></span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif;">5.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></b><b><span style="font-family: "arial" , sans-serif;">VHL or von Hippel
Lindau</span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">No one in my family had ever heard
those words before 1962.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">6.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></i><b><span style="font-family: "arial" , sans-serif;">In 1962:</span></b><span style="font-family: "arial" , sans-serif;"> </span><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">7.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></i><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">My dad tried to explain what was happening in
our home and how our lives would change.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">e.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">She laughed when telling this story…she said, I
had one good eye. But she didn’t drive
for much longer.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">f.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><i><span style="font-family: "arial" , sans-serif; font-style: normal;">g.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></i><i><span style="font-family: "arial" , sans-serif;">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.</span></i><i><span style="font-family: "arial" , sans-serif; font-style: normal;"></span></i></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif;">8.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></b><b><span style="font-family: "arial" , sans-serif;">VHL</span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">We had annual eye exams.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My mother was adopted by her step
father and didn’t know anything about her biological family.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in;">
<span style="font-size: small;"><br /></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in;">
<span style="font-size: small;"><br /></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif;">9.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></b><b><span style="font-family: "arial" , sans-serif;">Uncle Bill</span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My mother’s brother, my uncle Bill
was diagnosed with Kidney Cancer in the early 1980’s.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">I don’t remember anyone saying it
was related to VHL.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">This was the first Kidney Cancer in
our family.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My uncle passed away in 1981 at 41
years old.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><b><span style="font-family: "arial" , sans-serif;">10.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></b><b><span style="font-family: "arial" , sans-serif;">My diagnosis</span></b></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;"> 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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">e.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">f.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">I set at my desk for a while before
calling… I’m a mom, I knew how I would
feel, hearing this news.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">g.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">h.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">I was 35 years old. Within a week, appointments were made for my
brother and sister and our kids.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">i.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My brother was diagnosed that
day. Dr Straatsma offered to treat him
at no cost because he didn’t have health insurance.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">j.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">As parents, we hope to pass along
certain familial traits…VHL is not one of them.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">11.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;"> 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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">CT Scans would show 4 cysts blocking
the flow of fluid from flowing freely between the spine and brain.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">This was the first brain surgery in
our family.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">e.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">f.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">g.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">On the day we left the hospital,
they changed her bandages and clumps of her long beautiful hair fell into her
lap. We cried.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">h.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">This was the first brain surgery in
our family.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">i.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Shana has had 7 brain surgeries and
they are currently watching a new one along with a pheo and kidney cysts.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">12.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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. </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">BTW: Dr Yeh is part of the VHL
Clinical Care Center at UCLA. He is an
amazing gifted surgeon. </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">This is the first Pheo in our family</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">13.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">In our family, most of us were
diagnosed through eye exams.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">When the results came in….he had
everything VHL had to offer. Retinas, brain, spine, adrenal glands, kidneys and
pancreas.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">e.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">When he should have been enjoying
being newly wed and expecting a little boy.
He was scheduling surgeries.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">f.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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)
</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">g.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">h.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">This is the first Whipple in our
family</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">i.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">BTW, Thank you Susan for being my GO
TO PERSON for Adrenal issues.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">j.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Roland’s son not quite 2 years old
was diagnosed with VHL.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">14.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">15.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;"> 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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My mother had always wished that she
could do more than her $25 annual donation.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">16.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">I kissed my mom and told her that I
loved her…I told her that I would be right here when she got back.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Later I thought to myself, what was
the anesthesiologist gonna do?</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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….</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">e.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">f.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">g.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My mom always wanted to do more, to give
more. She said it was our duty, our obligation to do what we could.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">h.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My intent here isn’t to make you
sad…I’m hoping our story motivates you to help us find a cure.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">17.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">48 friends and family came out, my
husband and I were up at 2am making homemade breakfast burritos for the
participants. We raised $1500.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">This was our first organized
fundraiser.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">18.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">a.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">b.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">My mother said: its’ our duty to be
good stewards within our community.
Raising awareness is one simple way.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">c.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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. </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">d.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">Honestly, a cure today probably won’t
help me or my children…but, It might help my grandchildren and yours…and future
generations.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">e.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">f.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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? </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpMiddle" style="line-height: normal; margin-left: 1in; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">g.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;">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!</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoListParagraphCxSpLast" style="line-height: normal; text-indent: -0.25in;">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif;">19.<span style="font-family: "times new roman"; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><span style="font-family: "arial" , sans-serif;"> 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. </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoNormal">
<span style="font-size: small;"><br /></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif; line-height: 107%;">This Sunday, is an opportunity to Raise Money and Awareness.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif; line-height: 107%;">Please join us at the Team VHL 5K fun run/walk on
Sunday. </span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: "arial" , sans-serif; line-height: 107%;">Registration is $25 and you’ll get a VHL Warrior Shirt.</span></span></div>
<span style="font-size: small;">
</span><br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: small; line-height: 107%;"><span style="font-size: xx-small;">I’d love nothing more than to see a sea of VHL WARRIOR
shirts walking down the WOOD CHIP TRAIL. </span><span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;"><span style="font-size: x-small;">
</span><br style="mso-special-character: line-break;" />
</span></div>
VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-41390872843655297792016-12-28T12:30:00.000-08:002016-12-28T12:30:45.419-08:00END OF THE YEAR, DONATE IF YOU CAN<br />
<span style="font-size: large;"><b><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><br /></span></b></span>
<span style="font-size: large;"><b><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">END OF THE YEAR....donate if you can.</span></b></span><br />
<br />
<br />
<br />
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</tbody></table>
<div id="yui_3_16_0_ym19_1_1482538058406_140337">
<span>
<div>
It was July 1962. 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.</div>
<br /><div>
She woke up one morning without the vision in one eye. I was 5
years old. I understood what BLIND meant but everything else was lost
on my level of understanding.<br /></div>
</span><span>
<div>
My dad tried to explain what was happening in our home and how our
lives would change. But someone forgot to tell my mom...because on that
same morning, mom said, "jump in the car, I'm driving you to school."</div>
</span><span id="yui_3_16_0_ym19_1_1482538058406_140336"> <br /><div id="yui_3_16_0_ym19_1_1482538058406_140335">
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. As we pulled out of
the driveway, I'm waiting for someone to remind my mother that she
couldn't see. We drove up to the stop sign, we both looked both ways,
and BOOM! She drove over the curb. I thought we were going to die. I
remember this being very traumatic for me. I refused to ever get into
the car with her again. <br /></div>
</span></div>
</div>
</span>
<div id="yui_3_16_0_ym19_1_1482538058406_140332">
<span id="yui_3_16_0_ym19_1_1482538058406_140331">
<div id="yui_3_16_0_ym19_1_1482538058406_140330">
<span id="yui_3_16_0_ym19_1_1482538058406_140334">My
mom would learn braille, walk with a white cane and cook. She got a
Guide Dog named Enid. She took classes at the local college and rode
the bus everywhere...she was so brave, she was amazing. She was our
Hero.
<div id="yui_3_16_0_ym19_1_1482538058406_140333">
<span> </span></div>
</span><br />My entire family has been affected by this dreadful disease including my kids and grandkids, as well as many of my cousins. <br /></div>
</span></div>
<div id="yui_3_16_0_ym19_1_1482538058406_140327">
<span id="yui_3_16_0_ym19_1_1482538058406_140329">
<div style="color: #3a3732;">
<strong>My family wasn't much different than other families in the 1960's. Except my mom was blind and she had this thing called VHL.</strong></div>
<div id="yui_3_16_0_ym19_1_1482538058406_140328">
</div>
<div>
We'd never heard of VHL before. No one in our family had it. Looking back over my family tree, I can see the signs.<span> </span></div>
</span></div>
</div>
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<tr id="yui_3_16_0_ym19_1_1482538058406_140311"><td align="center" class="yiv4320081459Content yiv4320081459MainText" colspan="1" id="yui_3_16_0_ym19_1_1482538058406_140310" rowspan="1" style="color: #59554d; font-family: Arial, Verdana, Helvetica, sans-serif; font-size: 10pt; padding: 8px 0px 9px 0px;" valign="top">
<div align="left" id="yui_3_16_0_ym19_1_1482538058406_140317" style="color: #4a4742; font-size: 14pt; text-align: left;">
<br /></div>
<div align="left" id="yui_3_16_0_ym19_1_1482538058406_140316" style="color: #4a4742; font-size: 14pt; text-align: left;">
The
VHL Alliance 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.</div>
<div align="left" id="yui_3_16_0_ym19_1_1482538058406_140315" style="color: #4a4742; font-size: 14pt; text-align: left;">
<br /></div>
<div align="left" id="yui_3_16_0_ym19_1_1482538058406_140314" style="color: #4a4742; font-size: 14pt; text-align: left;">
<div id="yui_3_16_0_ym19_1_1482538058406_140313">
I was just a daughter
grieving for her mother and wanting to leave her a legacy. Now I am a
VHL Warrior, working hard to support VHLA in finding a cure. That is why
I am proud to fundraise and give to VHLA. Would you please join me?
Donate today!<br /></div>
<div style="color: #f03fba; font-size: 12pt;">
<span style="font-family: Segoe Print, Comic Sans MS, Arial, sans-serif;">Suellen xoxo</span></div>
</div>
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<img alt="" border="0" height="5" hspace="0" src="https://imgssl.constantcontact.com/letters/images/sys/S.gif" vspace="0" width="1" />VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-44962429594187385292016-12-05T12:05:00.001-08:002016-12-05T12:11:02.258-08:00TEAM VHL AT THE BALTIMORE MARATHON<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">TEAM VHL AT THE BALTIMORE MARATHON</span></b><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Team VHL raised $48,983 for The VHL Alliance</span><b><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></b><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">We ran the half and the full and the BaltiMoron, we all had a great time.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Next year...The Extraterrestrial Marathon out near Area 51 in Nevada.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">INTERVIEW ON BALTIMORE TV - Wait for it...</span></b><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://www.wbaltv.com/article/vhl-warriors-support-cause-at-baltimore-marathon/6964737">http://www.wbaltv.com/article/vhl-warriors-support-cause-at-baltimore-marathon/6964737</a></span><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-2ZO-DzA9nxY/WEXG0HZbbVI/AAAAAAAAELI/0yP9KFUDGkgOfA2Hca99hRfqj3s8EgZagCLcB/s1600/BALTIMORE%2B-%2BTEAM%2BVHL%2BGOODIE%2BBAGS.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://4.bp.blogspot.com/-2ZO-DzA9nxY/WEXG0HZbbVI/AAAAAAAAELI/0yP9KFUDGkgOfA2Hca99hRfqj3s8EgZagCLcB/s400/BALTIMORE%2B-%2BTEAM%2BVHL%2BGOODIE%2BBAGS.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">TEAM VHL GOODIE BAGS</td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-hQXzOxiGko8/WEXG0AUE-0I/AAAAAAAAELA/C7l0UGr_5vAQZivzCEydsj2C2jYvdI-wwCLcB/s1600/BALTIMORE%2B-%2BTEAM%2BVHL%2BGO.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://1.bp.blogspot.com/-hQXzOxiGko8/WEXG0AUE-0I/AAAAAAAAELA/C7l0UGr_5vAQZivzCEydsj2C2jYvdI-wwCLcB/s400/BALTIMORE%2B-%2BTEAM%2BVHL%2BGO.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">AND OFF WE GO</td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-UWotY4jNi_A/WEXG0U7KV3I/AAAAAAAAELM/TkBrYRgKBqElUZkOljctGOcHYHWDJ7uugCLcB/s1600/BALTIMORE%2B-%2BTEAM%2BVHL%2BHOODIES.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="296" src="https://1.bp.blogspot.com/-UWotY4jNi_A/WEXG0U7KV3I/AAAAAAAAELM/TkBrYRgKBqElUZkOljctGOcHYHWDJ7uugCLcB/s400/BALTIMORE%2B-%2BTEAM%2BVHL%2BHOODIES.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">TEAM VHL</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-xA0m1XHFMRY/WEXG0cs5CtI/AAAAAAAAELY/LvaKAmdKDIImdTrIFw4YV0Rb0leyQYc2ACLcB/s1600/BALTIMORE%2B-%2BTEAM%2BVHL%2BON%2BTHE%2BNEWS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="262" src="https://3.bp.blogspot.com/-xA0m1XHFMRY/WEXG0cs5CtI/AAAAAAAAELY/LvaKAmdKDIImdTrIFw4YV0Rb0leyQYc2ACLcB/s400/BALTIMORE%2B-%2BTEAM%2BVHL%2BON%2BTHE%2BNEWS.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">TEAM VHL IN THE NEWS</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-40-QFo_BfG0/WEXG0UeaogI/AAAAAAAAELU/8nnvVCtyjUMyv3s10U_BVuvYHq7RObLGACLcB/s1600/BALTIMORE%2B-%2BTEAM%2BVHL%2BRACE%2BSHIRTS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://4.bp.blogspot.com/-40-QFo_BfG0/WEXG0UeaogI/AAAAAAAAELU/8nnvVCtyjUMyv3s10U_BVuvYHq7RObLGACLcB/s400/BALTIMORE%2B-%2BTEAM%2BVHL%2BRACE%2BSHIRTS.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">TEAM VHL RACE SHIRTS</td></tr>
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<br />VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-47448865417253649462016-12-05T11:46:00.000-08:002016-12-05T12:06:55.933-08:00VHL FAMILY WEEKEND 2016<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-1a0Mnl6Nul4/WEXDD2n8ZNI/AAAAAAAAEKg/9HpFxS0us7kpXhwqe7r0B9KKSUGVmPkPQCLcB/s1600/ROLAND%2BAT%2BTHE%2BVHL%2BCONF.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://4.bp.blogspot.com/-1a0Mnl6Nul4/WEXDD2n8ZNI/AAAAAAAAEKg/9HpFxS0us7kpXhwqe7r0B9KKSUGVmPkPQCLcB/s200/ROLAND%2BAT%2BTHE%2BVHL%2BCONF.jpg" width="192" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son Roland, introducing me</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-u9V6Ck6ju-w/WEXDEA8iA-I/AAAAAAAAEKk/XJBACw9wZKMb6vxBMIoN0XPEaU7AkaTZwCLcB/s1600/SUELLEN%2BSPEECH.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="148" src="https://2.bp.blogspot.com/-u9V6Ck6ju-w/WEXDEA8iA-I/AAAAAAAAEKk/XJBACw9wZKMb6vxBMIoN0XPEaU7AkaTZwCLcB/s200/SUELLEN%2BSPEECH.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Speech</td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-v4p83RjhnP0/WEXDD4D5OdI/AAAAAAAAEKs/GvJjXsm9H64LscpjCndRmHpGPVm3lOU3wCLcB/s1600/DR%2BSTRAATSMA.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://2.bp.blogspot.com/-v4p83RjhnP0/WEXDD4D5OdI/AAAAAAAAEKs/GvJjXsm9H64LscpjCndRmHpGPVm3lOU3wCLcB/s200/DR%2BSTRAATSMA.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Dr Bradley Straatsma</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-W08l7576eYs/WEXDDyynG9I/AAAAAAAAEKc/bALM2HIV7wUa7cPl2rLvLtC9sEW83CcdwCLcB/s1600/KIDS%2BAT%2BTHE%2BVHL%2BCONFERENCE.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="176" src="https://3.bp.blogspot.com/-W08l7576eYs/WEXDDyynG9I/AAAAAAAAEKc/bALM2HIV7wUa7cPl2rLvLtC9sEW83CcdwCLcB/s400/KIDS%2BAT%2BTHE%2BVHL%2BCONFERENCE.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My kids</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-f5PpfehdJ6Q/WEXDEJ5A28I/AAAAAAAAEKo/t48BzUFKEHIGTrOWNG5yymsduibwbBSGgCLcB/s1600/VHL%2BCONFERENCE%2B-%2BTEAM%2BVHL.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="261" src="https://4.bp.blogspot.com/-f5PpfehdJ6Q/WEXDEJ5A28I/AAAAAAAAEKo/t48BzUFKEHIGTrOWNG5yymsduibwbBSGgCLcB/s400/VHL%2BCONFERENCE%2B-%2BTEAM%2BVHL.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team VHL</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-Zgn8O23ZrbM/WEXDEf8W2aI/AAAAAAAAEKw/j6K_N-YWhLcr_NIBaF855Truhjn68yy7QCLcB/s1600/VHL%2BCONFERENCE%2B5K.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://2.bp.blogspot.com/-Zgn8O23ZrbM/WEXDEf8W2aI/AAAAAAAAEKw/j6K_N-YWhLcr_NIBaF855Truhjn68yy7QCLcB/s400/VHL%2BCONFERENCE%2B5K.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team VHL 5k at the VHL Family Weekend.</td></tr>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">VHL FAMILY WEEKEND 2016</span></b><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I was honored to be honored at this year's VHL Family Weekend. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I was so grateful to share this event with my family and friends.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Here are some of the highlights:</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">VHL SLIDE SHOW</span></b><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.facebook.com/1044101982/videos/10208653258702589/">https://www.facebook.com/1044101982/videos/10208653258702589/</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-size: small;"><b><span style="font-family: "arial" , "helvetica" , sans-serif;">SUELLEN'S SPEECH</span></b></span><br />
<div id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_41990">
<b><span style="font-family: "arial" , "helvetica" , sans-serif;"> PART ONE</span></b></div>
<div dir="ltr" id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_42001">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.youtube.com/watch?v=9BgE_CqSOKg" id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_43854" rel="nofollow" target="_blank">https://www.youtube.com/watch?v=9BgE_CqSOKg</a></span></div>
<div dir="ltr" id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_42093">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_42091">
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">PART TWO</span></b></div>
<div dir="ltr" id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_42092">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a class="yiv8817350830" href="https://www.youtube.com/watch?v=XzvSi2Suh8g&t=436s" id="yiv8817350830yui_3_16_0_ym19_1_1480891599994_42135" rel="nofollow" target="_blank">https://www.youtube.com/watch?v=XzvSi2Suh8g&t=436s</a></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">VHL CONFERENCE - EMILY B singing BRAVE</span></b><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.facebook.com/hi.its.suellen/videos/10209703038285392/">https://www.facebook.com/hi.its.suellen/videos/10209703038285392/</a></span><br />
<br />VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-63346554053265281602016-09-11T13:15:00.000-07:002016-09-11T13:19:53.362-07:00Busier then ever...<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-Ap-PVt7jKlo/V9W7sIAwrWI/AAAAAAAAC58/KISykvQNMvsC5jzrmBMP_ID9doR7gpupwCLcB/s1600/FB_IMG_1473027376117.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="142" src="https://3.bp.blogspot.com/-Ap-PVt7jKlo/V9W7sIAwrWI/AAAAAAAAC58/KISykvQNMvsC5jzrmBMP_ID9doR7gpupwCLcB/s320/FB_IMG_1473027376117.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team VHL 2016</td></tr>
</tbody></table>
<br />
<br />
You think that once you're retired, you'll have more days to run, to lay out by the pool...hang out with the kiddos. Not.<br />
<br />
This has been a usy few months. We put on two races. The RUNdezvouz and The Mom's Day Run . A yard Sale and a Pancake Breakfast.<br />
<br />
Raising money and awareness for VHL. This year, so far, we'ved raised $45,000 for The VHL Alliance. Funding cancer research and providing patient service.<br />
<br />
Then we have The VHL FAMILY WEEKEND.<br />
<br />
And 18 incredible ladies are running The Baltimore Marathon!<br />
<br />
We've fundraised like crazy....most have trained, putting in the miles...me? Not so much. Sometimes life gets in the way...Im still going but will probably walk most of it. And Im ok with that...we will have a great time.<br />
<br />
In the meantime most of my kids are in the holding pattern, waiting for scans, or results or just keeping an eye on those buggars tha keep coming back over and over again...<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-RQBnaVCdfOQ/V9W8OrNFg2I/AAAAAAAAC6A/PSLq18ZtCBYvUOsdT64L_Eu_Jl2bpUbpwCLcB/s1600/FB_IMG_1462761302707.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="146" src="https://4.bp.blogspot.com/-RQBnaVCdfOQ/V9W8OrNFg2I/AAAAAAAAC6A/PSLq18ZtCBYvUOsdT64L_Eu_Jl2bpUbpwCLcB/s320/FB_IMG_1462761302707.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Family after The MOM'S DAY RUN </td></tr>
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<br />VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-65844147345820246692016-02-26T14:40:00.001-08:002016-02-26T14:40:53.782-08:00KIDNEY TUMORS are Almost Always CancerI HATE VHL!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-2FCtHVr7KBw/VtDUXsZ5nPI/AAAAAAAAAO0/nXIPJxLg1ws/s1600/IMG_0461.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="124" src="https://3.bp.blogspot.com/-2FCtHVr7KBw/VtDUXsZ5nPI/AAAAAAAAAO0/nXIPJxLg1ws/s320/IMG_0461.JPG" width="320" /></a></div>
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<br />
I remember growing up and hearing the word: VHL. I don't think I truly understood what it meant until my daughter, my oldest child needed emergency brain surgery.<br />
<br />
My mother lost her sight when I was 5 years old. She was totally blind after they tried to re-connect her detaching retina. It was 1962ish...<br />
<br />
Nothing else came up relating to VHL until my Uncle Bill was diagnosed with Renal Cell Carcinoma...from VHL. We lost him in 1981.<br />
<br />
I know that I can deal with anything VHL throws at me. I'm strong and I have tremendous faith and will battle until the end. But nothing...and I mean NOTHING can prepare you to watch your child suffer such pain and endure so many surgeries. Or struggle within the health care system, begging your insurance company to approve treatment or scans or surgeries. WHY DOES IT HAVE TO BE SO DIFFICULT???<br />
<br />
My children are my life...and I will do whatever I can to help, to be there, to hold them as they deal with the next blow. It kills me every time.<br />
<br />
My son had an ablation done last August to remove a kidney tumor. And just last week he had a tumor and a cyst removed via laparoscopy. The CANCER word is frightening...and we are waiting for the results but already know that it's cancer. <br />
<br />
My daughter waits for her son's surgery to be approved. We are and it's scheduled for February 23rd. They call and confirm in the morning the day before...only to cancel later that afternoon because of some insurance SNAFU. ugh!!!! Davonte will have his remaining Adrenal Gland removed. They found the new tumor last summer...and there might have been a chance to salvage his remaining Adrenal Gland had they acted right then...but no, phone calls, referrals, letters and more couldn't make the insurance company move any faster. All hope at salvaging it are fading away...a lifetime of steroids for this 21 year old young man.<br />
<br />
My daughter has her own health issues to worry about...she has a brain tumor that needs to be removed but can't because she also has a Pheochromocytoma. Back and forth with the insurance company and worrying about her son's health...<br />
<br />
What do you have if you do not have HOPE? <br />
<br />
VHL SUCKS<br />
VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-21348314978070869042015-12-14T17:36:00.006-08:002015-12-14T17:36:56.853-08:00VHL WARRIOR: 23 Days of Whipple Madness<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-s67cxKjpAGE/Vm9udRv9ZEI/AAAAAAAAAOg/U1NNu3djaXQ/s1600/12341540_10207426940984382_8489957138040717236_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> </div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-S-ZG4wBbjRQ/Vm9sf1TJC6I/AAAAAAAAANg/ayqlW5stJbE/s1600/12342424_10207426941624398_151236944463765426_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="http://4.bp.blogspot.com/-S-ZG4wBbjRQ/Vm9sf1TJC6I/AAAAAAAAANg/ayqlW5stJbE/s320/12342424_10207426941624398_151236944463765426_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feeling Better</td></tr>
</tbody></table>
<span style="font-family: "Arial",sans-serif;"></span><br />
<span style="font-family: "Arial",sans-serif;">My son had his Whipple on
Monday, March 30, 2015, at <span class="highlightnode">UCLA</span>. We read everything we could
find on the Whipple Procedure and recovery. My son had prepared himself for the
epidural and a lot of pain. In prep, nothing but clear liquids leading up to
surgery.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">Shortly after arriving at <span class="highlightnode">UCLA</span> they informed him that he would not be getting
an epidural due to tumors on the spine. Said it might be risky. </span><br />
<span style="font-family: "Arial",sans-serif;"></span><br />
<span style="font-family: "Arial",sans-serif;"><strong>THE SURGERY</strong></span><br />
<span style="font-family: "Arial",sans-serif;">Dr Hines said
he did well during surgery. Was impressed by his anatomy. This <span class="textexposedshow">is probably because they do this type of surgery more
often on older people. My son is 32 yrs old.</span><o:p></o:p></span><br />
<br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif;"><strong>Day 1</strong></span></span><span style="font-family: "Arial",sans-serif;"><strong>:</strong> In ICU, kinda loopy and in a lot of
pain. He had a button to push when he needed pain meds but misunderstood that
he could push it as often as he wanted to. He estimated he was pushing the
button about once per hour. Did much better when he pushed the button when ever
he wanted. Slept on and off all day. Meds: They have him on a "study"
drug to help prevent leakage, this makes him nauseous, so they give him meds to
prevent nausea, this drug also elevates blood sugar, so they give him insulin.
Plus steroids (he had bi-lateral adrenalectomy in December 2014), Antacids,
Magnesium and pain meds. No rooms yet.</span><br />
<span style="font-family: "Arial",sans-serif;"></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-UP4CQogW5EE/Vm9sp4fb3jI/AAAAAAAAANo/uPqscFKQwxA/s1600/12341216_10207426941344391_3759471631926770164_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="315" src="http://4.bp.blogspot.com/-UP4CQogW5EE/Vm9sp4fb3jI/AAAAAAAAANo/uPqscFKQwxA/s320/12341216_10207426941344391_3759471631926770164_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Push the Button!</td></tr>
</tbody></table>
<span style="font-family: "Arial",sans-serif;"><o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><strong>Day 2:</strong> Dr Yeh (head of
endocrinology) visited and made sure he had a room. Moved to the 8th floor with
view of the Bruins Practice Field. (shhh, he's a Trojan fan). Nurses said to
start walking...he's not so excited about this and waits till afternoon. He
walked about half way down the hall and back. He's not dizzy, just a little
weak. He'll try to go further tomorrow.<br />
He's restless and can't get comfortable, still experiencing a bit of nausea but
it comes and goes in waves. <o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><strong>Day 3:</strong> Doctors say he is doing
well. They remove the bandages, the incision looks good. Want him to walk more
to stimulate intestines so that they can start introducing liquids. Still in a
bit of pain, sleeping on and off all morning. He walked a bit further this
morning. Took a sponge bath and says he's feeling better. He threw up, it was
mostly bile. I guess since, he's not eating, there is nothing for the bile to
do. He was afraid of throwing up, worried about sutures. But said it was not as
bad as he imagined it would be. The nausea goes away quickly. He walked a
little more in the afternoon. He tried a sip of water...threw up again but not
sure if it was from the water or just the nausea again. Was awake for most of
the afternoon. Says he feels way better.</span><br />
<span style="font-family: "Arial",sans-serif;"></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-trvOtTk8i8k/Vm9syVAvaEI/AAAAAAAAANw/Ydb1dfrQrbw/s1600/12346322_10207426939184337_2509687455181435407_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-trvOtTk8i8k/Vm9syVAvaEI/AAAAAAAAANw/Ydb1dfrQrbw/s320/12346322_10207426939184337_2509687455181435407_n.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Incision looks good, drain still in.</td></tr>
</tbody></table>
<span style="font-family: "Arial",sans-serif;"><o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><strong>Day 4:</strong> My son really looks
good, little pain, walking ok. He has been sipping water and doing fine. But
the "study" drug (wish I could remember the name of it) makes him
nauseous. As soon as they give him the shot he throws up. Darn it, they just
brought him Jello, Juice, Broth and Tea. He threw up mostly bile (they've re directed
his digestive system). He was able to finish the Jello and then the guy with
the XRay machine came in <span class="textexposedshow">and the doctors said
NOTHING BY MOUTH. ugh! Thought we were making progress.</span></span><br />
<span style="font-family: "Arial",sans-serif;"><span class="textexposedshow"></span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-s67cxKjpAGE/Vm9udRv9ZEI/AAAAAAAAAOg/U1NNu3djaXQ/s1600/12341540_10207426940984382_8489957138040717236_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-s67cxKjpAGE/Vm9udRv9ZEI/AAAAAAAAAOg/U1NNu3djaXQ/s320/12341540_10207426940984382_8489957138040717236_n.jpg" width="196" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking the halls of UCLA with a lot of meds.</td></tr>
</tbody></table>
<span style="font-family: "Arial",sans-serif;"><span class="textexposedshow"></span><o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">So, he has to wait till
tomorrow to try the Jello again. The XRay showed that his stomach is distended.
They described it as full of gas and that sometimes it takes a little longer
for the stomach to "wake up" after surgery. So that's what they think
is going on. My son was nervous that they might have to do more surgery. But
that wasn't the case...just a lot of waiting. I guess this why Whipple Warriors
lose so much weight. <o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><o:p><span style="font-family: Times New Roman;"> </span></o:p></span><br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif;"><strong>Day 5</strong></span></span><span style="font-family: "Arial",sans-serif;"><strong>:</strong> They made him wait another day to eat
jello and broth. They did two more XRays and the doctors have two different
thoughts. 1. says that his stomach is distended and should wait to eat. 2. says
that the stomach always swells after surgery and go ahead and eat. I don't like
two different ideas. He did ok, till dinner and threw up again when they gave
him the "study" drug. They let him continue with the jello and broth.
He has his color back but is losing weight.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><strong>Day 6:</strong> More Jello, Broth and
Juice. He really wants a cheeseburger. But, he knows he has to take baby steps.
Today is the last day with the "study" drug. (pasireotide sp?) This
drug helps prevent the pancreas from leaking. Not a lot happens at the hospital
on the weekends. ~ More tomorrow.<o:p></o:p></span><br />
<br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif;"><strong>Day 7</strong></span></span><span style="font-family: "Arial",sans-serif;"><strong>:</strong> Not much pain, incision is healing
nicely. After a couple of days of Jello and Broth, he ordered a Roast Beef
sandwich. <o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">I called the kitchen and said:
I'd like a Roast Beef sandwich with white bread, cheese (Oh, you can't have
cheese) and lettuce and tomatoes and avocado (Oh, you can't have avocado) and
mustard and a fruit cup. He has to watch the fatty foods for awhile while his
digestive track heals.</span><br />
<span style="font-family: "Arial",sans-serif;"></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-CHjS-Nb40Us/Vm9tMPrxMkI/AAAAAAAAAOA/FemR_YbjCXc/s1600/12390838_10207426940584372_362137727091400283_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="284" src="http://1.bp.blogspot.com/-CHjS-Nb40Us/Vm9tMPrxMkI/AAAAAAAAAOA/FemR_YbjCXc/s320/12390838_10207426940584372_362137727091400283_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hard Boiled Egg...didn't stay down</td></tr>
</tbody></table>
<span style="font-family: "Arial",sans-serif;"><o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">10 days without real food was
really hard for him and I wish I had a photo of his face while he watched that
Roast Beef Sandwich walk into the room. The nurse came in shortly after and
asked where the sandwich was....lol. I think it lasted like 2 bites. Pasta and
marinara sauce for dinner...not too tasty but it's food. And it's staying down (so far).<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">He still has to finish healing
and figure out what foods he can and can not eat. He might get to come home
tomorrow. <o:p></o:p></span><br />
<br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day 8</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>:</strong>
So...he was scheduled to go home today.<br />
But he threw up, is in pain (when he wasn't having much to begin with) and his
white cell count is up. More tests.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">Good News: CT scan looks good.
White cell count came down a little. Will watch it. Drain comes out today.
Going home tomorrow.<o:p></o:p></span><br />
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: Times New Roman;"></span></o:p></span><br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong> 10:</strong>
The doctors dont know whats going on. Threw up at 6pm yesterday, 3am and 6am
today. White blood cell count is up...not going home today.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong> 11:</strong>
White Blood Count is normal today. They want to keep him through the weekend
because he threw up again. Going to do a stomach flush? He is in good
spirits...and has an appetite.<span class="highlightnode"><o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong> 12:</strong>
Not going home today. Trying to figure out why he keeps throwing up.<o:p></o:p></span></div>
<br />
<span style="font-family: "Arial",sans-serif;">Its <span class="highlightnode">day
12</span> and we are still in the hospital. Mostly because he is still
vomiting. We are still trying to figure out nutrition, what works and what
doesn't. <o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">He also doesn't have adrenal
glands and is on steroids for the rest of his life. (due to <span class="highlightnode">VHL</span>). <o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">The docs here say to eat
whatever he wants, so far that's not working. Going to try Ensure to get some
nutrition in him.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><o:p><span style="font-family: Times New Roman;"> </span></o:p></span><br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif;"><strong>Day
18:</strong> <em>(I lost day 13-17?)</em></span></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">We're still at the hospital.
Everything looks good except his stomach is not working. Delayed Gastric
Emptying. They are confident it will correct itself. He may go home Saturday
with PICC Line / PPN.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">He is doing ok, in good
spirits.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;"><o:p><span style="font-family: Times New Roman;"> </span></o:p></span><br />
<span class="highlightnode"><span style="font-family: "Arial",sans-serif;"><strong>Day</strong></span></span><span style="font-family: "Arial",sans-serif;"><strong> 19: </strong></span><span style="font-family: "Arial",sans-serif;">Last night he had a low fever
(infection?) and a fast heart beat. They did an EKG. This morning they did
blood and urine cultures and an Xray with contrast. All other numbers and
levels look normal. The low fever is a concern for infection, but they can't
find it.<o:p></o:p></span><br />
<br />
<span style="font-family: "Arial",sans-serif;">His stomach is emptying!
Finally! They want to wait a couple more days before he starts eating solid
food. Moving in the right direction.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong> 20:</strong>
Bacterial infection, possibly from PICC Line. Boo.<span class="highlightnode"><o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day 22</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>:</strong>
E-Coli In his blood found at the PICC Line insertion point. Blood work is coming back
negative. Will be on antibiotics for 2 more weeks? Had a blueberry pancake and
hardboiled egg...so far so good. Home, maybe end of week.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span class="highlightnode"><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>Day 23</strong></span></span><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><strong>:</strong>
Homeward Bound! With a daily visit from a nurse. The nurse injects a high power antibiotic to get rid of the E-Coli.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"></span> </div>
<strong><span style="font-family: Arial;">WHIPPLE ATTACKS</span></strong><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;">My son is 4 weeks <span class="highlightnode">Post Whipple</span>
(P-Net, VHL). So far, so good...but about once per <span class="highlightnode">day</span>
he gets an excruciating cramp right under his sternum that totally drops him to
his knees. It lasts a minute or <span class="highlightnode">two</span>, his
abdomen is tight to touch. It comes in a wave, increasing in intensity. Dr says
it's his intestines recovering from surgery another doctor said it's his muscle
wall recovering. We've been keeping a journal, doesn't appear to be food
related, it comes very randomly, sometimes skipping a <span class="highlightnode">day</span>.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p></o:p></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p><strong>December 2015</strong></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p>These Whipple Attacks slowly went away. Some folks have them forever...and my son gets one in a blue moon. He still hasn't gained all the weight back...but he eats whatever he wants. </o:p></span></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p>He had a Tumor Ablation in his kidney to remove a tumor (Renal Cell Carcinoma) and will have another surgery to remove the two remaining tumors in the other kidney.</o:p></span></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p>After that...regular scans.</o:p></span></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-BW5pCEm9uZg/Vm9uQvWmCtI/AAAAAAAAAOM/av_P8vRzW88/s1600/12369046_10207426941864404_6683355651958695864_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="273" src="http://1.bp.blogspot.com/-BW5pCEm9uZg/Vm9uQvWmCtI/AAAAAAAAAOM/av_P8vRzW88/s320/12369046_10207426941864404_6683355651958695864_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr Livhits interviewing my son for a VHL Documentary.</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-leye4u6Igbk/Vm9uQzXwZ-I/AAAAAAAAAOQ/eFaAURHfncc/s1600/12376014_10207426942184412_2583222720753364025_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-s67cxKjpAGE/Vm9udRv9ZEI/AAAAAAAAAOc/Ij2xMqjFpHA/s1600/12341540_10207426940984382_8489957138040717236_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> </div>
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<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p><span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%;"><o:p></o:p></span></o:p></span> </div>
VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com2tag:blogger.com,1999:blog-427896617090275175.post-46463295753449825582015-01-10T11:51:00.003-08:002015-01-11T16:06:50.859-08:00JUMBLED MESS<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-gaiKzZFuiDI/VLGC-znMbpI/AAAAAAAAAMc/mSzY_CQPkb0/s1600/suellen%2Brun.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-gaiKzZFuiDI/VLGC-znMbpI/AAAAAAAAAMc/mSzY_CQPkb0/s1600/suellen%2Brun.jpg" height="320" width="301" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is how I keep my Sanity</td></tr>
</tbody></table>
<br />
<b>HOPE </b><br />
<br />
I wish I were a better writer, I wish I could convey my thoughts through the typed words on this screen. I lay awake at night and the words, the message just flows...then when I try to type, it's just a jumbled mess.<br />
<br />
Here we are...the New Year and everything that it brings. Like pushing the Refresh Button on this computer, starting a new goal and saying it out loud. Losing weight, running more, a marathon...<br />
<br />
I want to say that, I HOPE. I want to be able to continue to HOPE. I want to believe that there is HOPE. I get stuck in that in between space sometimes...and HOPE seems so far away. But it is the HOPE that keeps me going. I HOPE, I PRAY that one day there is a cure.<br />
<br />
<b>BILATERAL ADRENALECTOMY</b><br />
Both of Rolly's adrenal glands had to be removed. This means a lifetime of steroids, a medical alert bracelet and being very in tune with your body....watching for changes, for colds and flues, for sick kids....being really careful.<br />
<br />
December 16th was Rolly's surgery. We were all at UCLA at 5am. Rolly and Liz, me and Jeff, Shana, Tiana, Davonte and Neysi all in the waiting room called Maddie's Room (who is Maddie, I wonder what is her story). As I sit here looking at all the faces around me, I realize that we are not the only ones waiting in the waiting room, waiting for word about our loved one, nervous, worried, anxious...<br />
<br />
There is a man at the desk, who asks our patients name, so they can keep us updated. And there is a board with numbers on it...we are assigned a number and it changes color when the patient is admitted, when they move to the pre surgery suite, then go to surgery, recovery and so on....we stare at that white board with the numbers on it....<br />
<br />
Liz and Rolly are in the pre surgery suite. Liz comes out and we all go in to see him. He is nervous, I tell him they will give him something to help relax in a minute. I love you, I love you, too...Liz goes back in until they whisk him away to the surgery suite...and we wait.<br />
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We go to the cafeteria, the gift shop, walk the halls...anything to pass the time...but we always make our way back to the white board with numbers on it...hours will pass before Dr. Yeh (head of endocronology) comes out to speak with us. He says Rolly is doing well, they are half way done. Good news, we use this as a gage for when surgery should be done.<br />
<br />
It was sometime after 2pm when the person at the desk (it's a woman now) comes over and lets us know that surgery is done. We wait awhile and Dr Yeh comes to tell us that Rolly did well and he is in recovery, we should be able to see him in an hour or so. He also draws an image of the surgery he'd just done on his surgical pants. He was able to salvage a small (really small) portion of adrenal gland, we're hoping for good blood flow...then maybe we'll only need to supplement the cortisol. Cortisol is the hormone that the adrenal gland makes to help the body manage stress.<br />
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We wait to go to recovery...we keep asking but, they say he is asleep and they don't want to wake him. It's 6pm before we can see him. He's kinda loopy, he shivered and was cold, then he'd turn red in the face and be hot, and he was in pain, but not as much as he expected. I'm just happy to see him. He told me that he was so happy that he woke up. He was terrified that he wouldn't...the first thing he said to the doctors was, did you save any of my gland?<br />
<br />
Because they were able to remove this peach size tumor and the others (they found one more) via laparascopy, he will heal faster. He had five incisions in his abdomen. He also had an IV in his neck. That was a little scary, he was having an alergic reaction to the plastic tape. There were blisters under and around the tape on his neck and on his arms. Since the IV in his neck is a direct line to his heart, they don't want to break the blisters and must keep the area really clean. The blisters would last a week.<br />
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Rolly was up walking the next day and he measured his healing by the laps around the nurses station. He was in good spirits and discharged 5 days later.<br />
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We had our Christmas on Dec 26th, Rolly looked good and said he felt tired but he was doing well.<br />
Since he has a sit down type of job, he was able to go back to work pretty quick....and then....<br />
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<b>BLESSINGS </b><br />
Baby Michael Joseph was born on New Years Eve. He was due in mid-January but decided to come a little early. What a blessing and what a beautiful gift to Rolly and Liz...they needed a blessing right then, they needed this tiny bundle of joy to take their minds off of the last couple of months. So much pressure and stress on these young newlyweds...He is perfect!!!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-VpAIzrqglQ8/VLF4eF2sj8I/AAAAAAAAAMM/jxSn6EWEvwE/s1600/MICHAEL%2BJOSEPH.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-VpAIzrqglQ8/VLF4eF2sj8I/AAAAAAAAAMM/jxSn6EWEvwE/s1600/MICHAEL%2BJOSEPH.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Michael Joseph Tolentino, 12/31/14 6.5lbs 19.5in</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
I think Blessings come when we need them most. My son and daughter in law haven't been able to enjoy being newlyweds or being pregnant. They were tossed into this big JUMBLED MESS called VHL. I can't imagine the pressure or the stress that Liz is enduring (all while being pregnant)...but I have to say that I'm so glad my son has her...she is so strong, she loves him so much. She is a GODSEND.<br />
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As we welcome this new addition...we are given new HOPE and a new reason to FIGHT and we prepare for the next round of surgery.<br />
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<br />
<b>The Whipple.</b><br />
The goal of the Whipple procedure (pancreatoduodenectomy) is to
remove the head of the pancreas, where most tumors occur. Because the
pancreas is so integrated with other organs, the surgeon must also
remove the first part of small intestine (duodenum), the gallbladder,
the end of the common bile duct and sometimes a portion of the stomach.
In the reconstruction phase of the operation, the intestine, bile duct
and remaining portion of the pancreas are reconnected.<br />
The Whipple procedure is a difficult and demanding operation for both the person undergoing surgery and the surgeon.<br />
<br />
They will do a modified version of this surgery, leaving the duodenum.<br />
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Recovery is tough with this surgery. 3-6 weeks. The incision will be from his left nipple to his navel. He will be in the hospital from 7-10 days.<br />
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The next surgery is to remove the tumors in his kidneys. They are cancer but, VHL Patients need to manage multiple surgeries, so they wait till they are 3cm before removing them. This because, as a VHL Patient we know we will have multiple tumors and cysts on our kidneys and the kidneys can only tolerate so many surgeries. 3cm is the threshold for removing these tumors, because the risk for metastisis is much greater after 3cm. One of Rolly's tumors is 3cm...it has to be removed. If it metastisizes it will go to the brain, lungs...and the odds of survival are very low. The number one killer of VHL Patients is Renal Cell Carcinoma (kidney cancer).<br />
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We will HOPE and continue to PRAY for a CURE and pray that Rolly heals well and can go on to enjoy his beautiful family.<br />
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<b>DAVONTE</b><br />
Today, my daughter called me with results from Davonte's latest tests. He has another Pheochromocytoma. Davonte had a partial adrenalectomy, seven years ago. He had cut his knee at school, was taken to the ER and they said his blood pressure was really high. 150/100. A thirteen year old's blood pressure should be 90/60. Pheo's can cause high blood pressure, stroke and heart attack.<br />
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The ER doctor told my daughter that Davonte had high blood pressure and to take him to his primary care physician. No one said it's an emergency, so three weeks later he got to see his doctor...Davonte's blood pressure was 187/110. He was rushed to CHOC (Children's Hospital in Orange County)...I'm yelling Pheo to anyone who would listen. They dismissed me...I'm telling them we have VHL, it's a Pheo. 6 hours later, they tell us he has a Pheo and they want to schedule surgery right away. NOOOOOOO! You CAN'T OPERATE on a patient with a Pheo!!! I'm telling them that they must block him first. I call UCLA and beg Dr Yeh to talk to these doctors. He did and they now were going to give Davonte alpha blockers for about 2 weeks.<br />
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Alpha Blockers, block the adrenal glands from firing off during surgery. The tumor on the adrenal gland is called a Pheochromocytoma (Pheo), it sucks adrenalin from the gland and if it were to fire off during surgery, there would be an immediate crisis on the table. This is how my mother died...during surgery to remove a brain tumor, her pheo fired off and she crashed. There was nothing they could do.<br />
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Davonte did well during surgery and post op. His scans up until now have all been clear. But over the last few weeks, he's been feeling off. Tired, sleeping alot...sweating. We all new what that meant. He took the 48 hour urine test. Measuring the catacholamine levels. His are very high. Now, we must find an endocronologist.<br />
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We'd love to take him to UCLA. They have a VHL Clinic there. A team of doctors all familiar with VHL and all of the parts of the body affected, Neurosurgeons, Endocronologists, Retinal Specialists etc. ...but, UCLA does not take Davonte's insurance.<br />
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Finding a surgeon with VHL knowledge and experienced in Adrenalectomys with a Pheo is tough. Finding one who takes my grandson's insurance....(frightening) I'm praying Dr Yeh can find us someone who meets all of the above criteria...otherwise, we are taking a huge risk. PRAYING, HOPING that we find the right person.<br />
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<b>SHANA</b><br />
My daughter has a new brain tumor. We have to wait for her latest test results to determine if she has a Pheo before taking care of the brain tumor. We WAIT, we HOPE, we PRAY.... My daughter has been put through the ringer. Her first brain surgery was when she was 19 years old...she has had 7 brain surgeries to date. She manages her own health, and her son's. Sometimes it can be overwhelming, especially when you have to navigate through the insurance authorizations and doctors misdiagnosis. Sometimes she just throws up her hands...it can be so frustrating. Shana through her own fears, is the first person to show up when someone is down. She is so like my mom.<br />
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I feel totally helpless sometimes, most of the time. I gave this dreadful disease to my children, my grand children. Watching them endure the tests, the anxiety, the fear is so difficult...and I try to keep a strong front to carry them through the maze of doctors, insurance, authorizations...sometimes, I have to fight with the insurance companies to get the approvals for some of these tests, procedures and surgeries. Some one, in an office somewhere gets to decide what doctors we get to see. We beg to see VHL Specialists. Then they refer us to doctors who've never heard of VHL.<br />
<br />
Recently, my labs came back with suspicious activity. We followed up with a MRI and found tumors. I asked my primary care physician to see Dr Yeh at UCLA. He said, no, lets do another test. The tumor disapeared? Is it there? is it not? Now, I'm really concerned. Can I go see Dr Yeh? No, let's do a CT Scan. No, it's not there. How can the radiologist see a tumor and give it's dimensions and it disappear? I fight...knowing that this type of tumor is slow growing and I have time to fight...but imagine the patients who say "ok doc" and go about their business only to find that they are now Stage IV and they can't do anything about it. We FIGHT, we HOPE, we PRAY!<br />
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I've made it my mission in life to FIGHT, to HOPE, to PRAY for a CURE! I know that some of my friends, and some family too, get tired of my Facebook Posts about a race I'm coordinating to raise money and promote awareness about VHL. They get tired of my asking for money while I fundraise to find a cure.<br />
<br />
I know they do not understand what it's like to go to the doctors and trying to educate them about how to manage your own health. They don't know what it's like waiting for the scan results every few months, what it is like to be so scared when you get the crumby results...and arguing with my insurance company or the doctor...<br />
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I want to LIVE, so I will FIGHT. i want my kids to live, so I will FIGHT. This disease affects less than 10,000 in the United States. It's rare. No one has heard of it...many doctors do not know about VHL.<br />
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I know that I will one day die from VHL. I know that this is a fact. I can live with that knowing that I did my best to raise awareness and raise money to fund cancer research so that MAYBE, my grand kids will live VHL free. That is MY MISSION. I will run, I will coordinate races and do whatever I can do to raise awareness. Because I promised my mom...and I plan on keeping that promise till the day I die.<br />
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So, if you're reading this blog post today...think about donating $5 or $10 or whatever you can to find a cure for those affected by VHL.<br />
<br />
<a href="http://www.tinyurl.com/vhlwarriorsuellen">www.tinyurl.com/vhlwarriorsuellen</a><br />
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Thank you so much for your love and support. Thank you for reading my ramblings.<br />
<br />
xoxo<br />
SuellenVHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com4tag:blogger.com,1999:blog-427896617090275175.post-4393283916973367242014-11-04T10:42:00.002-08:002014-11-05T18:00:01.192-08:00GOOD NEWS, BAD NEWS.<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-jkj6mPQfdgw/VFkd4-ZeBYI/AAAAAAAAALs/vkNzrKUSnBc/s1600/Rolly.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-jkj6mPQfdgw/VFkd4-ZeBYI/AAAAAAAAALs/vkNzrKUSnBc/s1600/Rolly.jpg" height="213" width="320" /></a></div>
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Having VHL, you expect to get tumors and cysts. Everywhere. <br />
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Every year you get scanned and you prepare for the worst. I know that I can handle any issues as they come up. I know it's coming and each year, as I deal with this and that, I know the odds are thinning. When is the BIG DEAL gonna show up? Another year and I Thank God.<br />
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My kids get scanned and once they get results, I'm the first call. MiMi, all clear. I hold my breath till I get that call...and then a big sigh of relief and Thank You God! <br />
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Then Rolly. We didn't know, I kept telling myself, No, he doesn't have it...we'd have known by now. There would be symptoms. Something. He is young, he is strong, newly married, expecting a baby boy in January...life looked pretty sweet. <br />
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Liz pushed for a DNA test. That would be the definitive answer. Yes or No. I kept asking, any news? Any results yet? The longer it took, the better I felt, no news is good news, right?<br />
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We knew he probably had a Pheo (pheochromocytoma). We didn't know how many or how big. The other stuff was revealed last Thursday and confirmed by Dr. Michael Yeh yesterday. <br />
<span id="yui_3_16_0_1_1415050932985_83471" style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><br /><span id="yui_3_16_0_1_1415050932985_83478" style="background: white;"><span style="color: blue;">History of von Hippel-Lindau syndrome with the following findings:</span></span><br />
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<span style="background: white;"><span style="color: blue;">1. Bilateral enhancing solid renal masses, concerning for renal cell carcinoma, with additional bilateral cystic lesions. </span><span style="color: black;"><em>(these masses are Renal Cell Carcinoma and are less than the 3.0cm guideline for metastisis. VHL patients knowing they will have many kidney cysts and tumors through out their lives will "budget" surgeries using the 3.0cm rule. The kidneys can only tolerate so many surgeries.)</em></span></span><br />
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<span id="yui_3_16_0_1_1415050932985_83476" style="background: white;"></span><span style="color: blue;"><span style="background: white;">2. Bilateral heterogeneously enhancing adrenal masses, the largest of which measures 7.6 cm on the right and 3.4 cm on the left, concerning for pheochromocytomas. Two additional left suprarenal masses identified, possibly adrenal or extra-adrenal in </span><br /><span id="yui_3_16_0_1_1415050932985_83482" style="background: white;">origin and may represent either pheochromocytomas or paragangliomas. <em><span style="color: black;">(Pheo's are bad, really bad. They can cause heart attack, high blood pressure and stroke at any time. If you have a Pheo and go into surgery, that Pheo could fire off and cause a crisis. ie: major uncontrollable blood loss. They have to be removed immediately).</span></em></span></span><br />
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<span style="background: white;"><span style="color: blue;">3. Heterogeneously enhancing 3.7 cm pancreatic head mass, possibly representing a nonfunctional neuroendocrine tumor. <em><span style="color: black;">(Nonfunctional tumors do not make extra amounts of hormones. Signs and symptoms
are caused by the tumor as it spreads and grows. Most nonfunctional tumors are
</span></em><a class="Summary-GlossaryTermRef" href="http://www.cancer.gov/Common/PopUps/popDefinition.aspx?id=45772&version=Patient&language=English"><em><span style="color: black;">malignant</span></em></a></span><span style="color: black;"><em>
cancer.).</em></span></span><br />
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<span style="background: white;"><span style="color: blue;">4. No evidence of metastatic intra-abdominal disease. </span><span style="color: black;"><em>(this is good news).</em></span></span><br />
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<span style="background: white;"><span style="color: blue;">5. Recommend dedicated brain and thoracic/lumbar spine MRI to evaluate for hemangioblastomas and/or metastatic disease.</span></span><br />
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The Pheo's must be removed before any other surgeries. The Bilateral Adrenalectomy is scheduled for December 16th. Rolly will be taking Alpha Blockers twice per day until surgery. This will block the adrenal gland from producing adrenalin. He will be taking vital signs twice per day and email the Dr every three days to monitor how he is doing.<br />
<br />
Rolly can live without adrenal glands but must take synthetic hormones for the rest of his life and wear a Med Bracelet stating he is Cortisol dependent and has not adrenal glands. This is forever.<br />
<br />
There is a tiny chance that they may be able to salvage a portion of the one adrenal gland, but they won't know until they get in there. There is an artery close by and it may survive but then you risk the chance of another Pheo. You don't necessarily need adrenal glands to get a Pheo. The Dr will make that decision later.</span><br />
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Having VHL, we are predisposed to RCC, (Renal Cell Carcinoma). I'm thankful that the Kidney Tumors are less then 3.0cm. 3.0cm is the size that Renal Cell Carcinoma is likely to spread. It's still cancer. We will be seeing a Kidney Specialist within the next week or so.<br />
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</span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;">Having VHL, we will get Pancreatic Cysts and Tumors. For the most part, we leave cysts alone until they start producing problems ie: digestive issues and pain. Tumors are another ball of wax. Expecially this tumor. P-Net is what they call it. Non Functioning Nueroendocrin Tumor. Most of these tumors are malignant. VHL Tumors on the Pancreas act like cancer but different. The size of this tumor is over the 3.0cm size and is of concern. If they have to remove it, they will do a Whipple Procedure.<br />
<br />
Whipple Procedure - The goal of the Whipple procedure (also known as a pancreaticoduodenectomy) is to remove cancer in the head of the pancreas or bile ducts. In the procedure, your surgical oncologist will remove the cancerous tissue, remove portions of the pancreas, bile duct, small intestine and stomach, and perform immediate reconstruction.<br />
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The recovery from this procedure has a whole host of other issues. My brain can't go there yet.<br />
<br />
Good news that there is no other signs of metastisis in the abdomen. They want to do a brain and spinal scan to be sure.<br />
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Roland and friends, at the age of 12, were playing with a BeeBee Gun and Roland got shot in the neck. I remember him telling me later that night, he was afraid he was going to get into trouble for shooting guns at each other (oh and he would have), so he told me that he thought the little nick in his neck was just a superficial wound. I believed him.<br />
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Here we are about to get an MRI and they ask if you have any metal objects on or in your body. My son, says; "Well, there might be". What??? They do an XRay and yes there is a BeeBee near the C4 Cervical Vertabrae. Now they have to determine whether or not this will cause problems in the MRI. So far, they think if it's in soft tissue, he should be ok. If it's closer to the bone...another story. We wait for a definitive answer.<br />
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<strong>I CAN BREATHE.</strong><br />
<br />
While all of this sounds horrendous and has scared me half out of my whits. I can breathe knowing the potential of Kidney Cancer is lower. That's a biggy. RCC is no joke and is the number one killer of VHL Patients.<br />
<br />
<strong>THIS IS THE LATEST ON MORTALITY.</strong><br />
<strong></strong><br />
<span style="font-size: x-small;"><em>Mortality/Morbidity: Due largely to the high incidence of renal carcinoma (kidney cancer), the average life expectancy of individuals with VHL disease is 49 years, although diligent surveillance may increase life expectancy. The mortality rate in carriers of VHL disease is high, with death occurring at a mean age of 41 years. Hopefully, the surveillance strategies will favorably impact this statistic. <br /><br /> The morbidity of VHL varies, depending on the particular organ system involved. <br /><br /> * The most serious sequelae of VHL disease involve malignant degeneration of renal cysts. Renal cysts are seldom clinically significant; however, they have an appreciable rate of malignant transformation, and renal cell carcinoma (RCC) is the leading cause of death in patients with VHL disease (35-75% prevalence in one autopsy series). Average age at which patients with VHL disease develop RCC is 44 years. These facts encourage the use of renal imaging on a regular basis.<br /><br /> * The second most common cause of morbidity and mortality in patients with VHL disease is CNS hemangioblastomas (brain tumors). The mean age at diagnosis is 29 years, and CNS hemangioblastomas typically are located in the cerebellum. While the lesions are rarely malignant, enlargement of the tumors within the confines of the CNS can result in neurologic compromise and death, if they are unresectable. Retinal hemangioblastomas, while not malignant, can result in considerable morbidity through retinal detachment or visual loss, which results directly from an enlarging lesion.</em></span><br />
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I can handle anything, when it pertains to me and my health. But when you watch your children in pain, or see the fright on their faces...it's awful. I've made myself sick this week with worry. Today, after being able to breath...my body aches. Every muscle hurts. <br />
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It's my job to be strong for my children. And I will. I'll be at every procedure, every surgery, ever consult... I ask questions, I ask hard questions sometimes, my kids know that I will always tell them the truth, no matter how painful or scary. My kids, while listening to the doctor, never take their eyes off of me. I know that my reaction is the barometer for them. If I panic or lose it...<br />
<br />
<strong>I CAN'T. I WON'T.</strong><br />
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I won't lose it. My friends have done a great job at lifting me up, starting prayer chains, giving me hope, keeping me strong. I need that to re energize myself before the next consult, scan or whatever VHL brings. I'm blessed with these amazing women who many of, have stories of their own. Some of them are going through life changes, are survivors or have health issues or are just making it day to day and they still supported me. Thank you. I can't say how much it all means to me but, Thank YOU!<br />
<br />
<strong>CONVERSTATIONS WITH MY SON.</strong><br />
<br />
Rolly is scared. He's watched from the sidelines as his grandmother dealt with blindness and his sister has had surgery after surgery on her brain, watching and waiting for results on other parts of her body. And he watch as Davonte had one of his adrenal glands removed.<br />
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He also reads all about VHL online. Good or bad??? I told him to cut it out...it's just gonna make you crazy. I told him he has to stop worrying. It doesn't change anything. We worry, when we have something to worry about. <strong>Am I gonna make it?</strong> <strong>Am I gonna live?</strong> <strong> I don't want Cancer! I don't wanna die!</strong> I address each one. <em>Yes, you're gonna make it, you are in the best hands possible.</em> <em>Yes, you're gonna live but you have to stay on top of VHL, you have to go to the Doctors regularly. We don't see cancer metastisizing yet and if does, we'll deal with it before it causes problems. You will die one day, but not any day soon.</em><strong> Who is going to be in the OR with me? </strong><em>A large team of specialists, you'll be in good hands. Rolly, when your brain takes you to that dark place, I want you to change the channel. Go to Channel Liz. Think about this amazing woman who loves you and is the love of your life. Think about meeting your newborn son. </em><br />
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Each question and concern will be answered. So far, he's ok. He started his meds today (Alpha Blockers)...with questions; <strong>Are you sure this is the right medicine? How is it gonna affect me? It said the side affects are..... What if I have a reaction? </strong><em>I answer every question. </em><br />
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<em></em> </span>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-82763304438303176742014-11-01T16:09:00.001-07:002014-11-01T16:09:08.528-07:00VHL REARING IT'S UGLY HEAD...<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-8wVtXoY0_Ug/VFVgebDyaEI/AAAAAAAAALQ/rE7uYrnbi30/s1600/rolly%2Band%2Bliz.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-8wVtXoY0_Ug/VFVgebDyaEI/AAAAAAAAALQ/rE7uYrnbi30/s1600/rolly%2Band%2Bliz.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rolly and Liz day before wedding. 8/9/2014</td></tr>
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I always had it in the back of my head...does Rolly have VHL? No! He didn't have any of the symptoms...well, maybe the sweating? But he didn't have any pain, no dizziness, no significant weight loss, no head aches, no nausea, no high blood pressure... My mom had it, her brother had it, I have it, my brother has it, my daughter and grandson have it, my nephew has it, my cousins have it. <br />
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He found out he had VHL after a DNA test...after the urging of Liz. They are expecting a baby boy in January and she wanted to know, for sure.<br />
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Rolly called me and said Mom...I knew it in my gut, I kept up the chatter, How are you? How is Liz?...he said "MOM". I have it.<br />
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Silence...deep breath, don't cry. It can't be too bad, we caught it early, didn't we? Ok, Ok, Ok don't panic, call and make appointments, for Referrals for Labs, Blood Work, Urine tests, MRI's, CT Scans, Ultra Sounds, XRays and Eye Appointments.<br />
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First he had a very small Angioma on his Retina. Zap it! Gone. Next!!! Urine test....blood in the urine. Arghhhhh. Can you see it? No...they saw it under a microscope...ok, then maybe we caught it early. Metanephine levels are high...that and the sweating, I know he has a Pheo. <em> Ok, Dee had a Pheo...we can do this</em>. They will give him Alpha Blockers to block the adrenalin for a few weeks before they can do surgery to remove it. <br />
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A Pheo <em>(Pheochromocytoma is a rare tumor usually on the adrenal gland which causes high blood pressure, heart attack and stroke).</em> You DO NOT want to go into any type of surgery with a pheo. We lost our mom this way. Ok, we can do this!!! Calm down, breath. Many conversations with my son...we can do this.<br />
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We know about VHL, we've watched our loved ones deal with VHL, there was always a possibility that you could have VHL, we can do this and we'll stay on top of it as we deal with each thing at a time. <strong>Don't worry yet...we'll worry when we have something to worry about.</strong><br />
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<em>Why didn't I make him go to the doctors sooner. Why wasn't he checked years ago. I was diagnosed in 1993. I didn't have any symptoms. Our insurance had changed and the doctor that diagnosed my mom was now in our plan...I went to see him. He found it immediately. So I think we just need to check the eyes. Everyone was checked and they found it in my brother. Roland had had many physicals for sports, he had his eyes checked, no one mentioned high blood pressure or anything unusual. The things he did have could happen to anyone. I think back and wish I'd just had his DNA checked (this is the only sure way of knowing). Shana was diagnosed in 1994, she had bad headaches and we found the tumors. We've dealt with each one as it came.</em><br />
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<strong>Ok...well now I'm F#$king Worried!!!!!</strong> <br />
Thursday, Liz asks me to come and talk to Rolly...he's nervous, he's scared...I can't let him freak out. He knows about the pheos...but I'm not telling him what we just found out. We will wait till we see Dr. Yeh (a specialist) so that any questions he has will be answered right then. This so sucks.<br />
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I drive to Santa Clarita to talk to my son. At that time, all I know about is the Pheos. We talk about what will happen, he tells me he's scared, he doesn't want it to be cancer, he doesn't want to die. Wait a minute, we don't know what you have, they haven't said anything yet. If it were an emergency, you would have heard by now. We talk about what they are looking for and the good thing is, it looks like we caught things early and we'll stay on top of it all from now on. <br />
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I've told him about the MRI's and the CT Scans and the Laser Surgery and everything has gone exactly as I said it would. <br />
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We get back from our walk and talk and Liz has a look, I ask her what? She said she sent me an email and it isn't good. Rolly is back in the room and we get ready to go out to eat. I'm nervous.<br />
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We have a nice dinner, I look at my son's face, I see how excited he is about his new life with Liz and the baby. He's so young...he's so happy. He is so scared.<br />
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I get home and rush to the computer to find this:<br />
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<span id="yui_3_16_0_1_1414879730308_2591" style="background: white; color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;">IMPRESSION:</span></span><br />
<span style="background: white; color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"></span></span><span id="yui_3_16_0_1_1414879730308_2581" style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><br /><span style="color: blue;"><span id="yui_3_16_0_1_1414879730308_2580" style="background: white;">History of von Hippel-Lindau syndrome with the following findings:</span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;"></span></span></span><span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><br /><span id="yui_3_16_0_1_1414879730308_2583" style="background: white;"></span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;">1. Bilateral enhancing solid renal masses, concerning for renal cell carcinoma, with additional bilateral cystic lesions.</span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;"></span></span></span><span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><br /><span id="yui_3_16_0_1_1414879730308_2584" style="background: white;"></span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;">2. Bilateral heterogeneously enhancing adrenal masses, the largest of which measures 7.6 cm on the right and 3.4 cm on the left, concerning for pheochromocytomas. Two additional left suprarenal masses identified, possibly adrenal or extra-adrenal in </span><br /><span id="yui_3_16_0_1_1414879730308_2585" style="background: white;">origin and may represent either pheochromocytomas or paragangliomas.</span></span></span><br />
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<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span id="yui_3_16_0_1_1414879730308_2586" style="background: white;"></span></span></span><span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;"></span></span></span><br />
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<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;">3. Heterogeneously enhancing 3.7 cm pancreatic head mass, possibly representing a nonfunctional neuroendocrine tumor.</span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;"></span></span></span><span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><br /><span id="yui_3_16_0_1_1414879730308_2587" style="background: white;"></span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;">4. No evidence of metastatic intra-abdominal disease.</span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;"></span></span></span><span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><br /><span id="yui_3_16_0_1_1414879730308_2588" style="background: white;"></span></span></span><br />
<span style="color: #363636; font-family: "Arial", sans-serif; font-size: 11.5pt;"><span style="color: blue;"><span style="background: white;">5. Recommend dedicated brain and thoracic/lumbar spine MRI to evaluate for hemangioblastomas and/or metastatic disease.</span></span></span><br />
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I'm frightened because they don't mention the size of the Kidney Tumors or how many. The rule of thumb is they remove them when they reach 3cm before they metastasize. That scares me so much. VHL patients are predisposed to Renal Cell Carcinoma (kidney cancer). We know we will have cysts and tumors throughout our lives and we manage them knowing that the kidneys can only tolerate so many surgeries.<br />
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The Pheo's are large and on both Adrenal Glands...we try and save as much of the adrenal gland as possible...synthetic hormones wreak havoc on the body. <br />
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Pancreas...I don't know what they are talking about: <span style="color: black; font-family: Times, "Times New Roman", serif;"><em>Heterogeneously enhancing 3.7 cm pancreatic head mass, possibly representing a nonfunctional neuroendocrine tumor.</em></span><br />
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I cry. I scream. I pray. I ask my friends to give me strength and hope. I stayed in bed for a whole day.<br />
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I feel better today...still worried and scared but ready to hear what the doctor says. Dr. Yeh is head of Endochronology at UCLA. He's done surgery on several of my family members. He has Rolly's scans and wants to see him right away. I'm confident with whatever Dr. Yeh's plan is.<br />
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I have to be strong for my son.<br />
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Thinking positive thoughts, hoping, praying...God please send a healing to my children...give it all to me. Please let them live a long healthy, happy lives. Please.<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-B_uF-6fKgYY/VFVju_fwKgI/AAAAAAAAALc/eYjSbp8eHgY/s1600/rolly%2Band%2Bliz%2B22.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-B_uF-6fKgYY/VFVju_fwKgI/AAAAAAAAALc/eYjSbp8eHgY/s1600/rolly%2Band%2Bliz%2B22.jpg" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Roland and Liz</td></tr>
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VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com1tag:blogger.com,1999:blog-427896617090275175.post-9731025030338078712014-03-09T14:43:00.003-07:002014-03-09T14:43:28.788-07:00VHL Sucks<span style="font-family: Arial, Helvetica, sans-serif;"><strong>LASER SURGERY</strong></span><br />
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<a href="http://4.bp.blogspot.com/-A3CgnkTJOK8/Uxza5RF4ufI/AAAAAAAAAJo/swSLKUQVhqw/s1600/angioma.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-A3CgnkTJOK8/Uxza5RF4ufI/AAAAAAAAAJo/swSLKUQVhqw/s1600/angioma.jpg" height="252" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">So I had Laser Surgery on January 24th to zap seven little "*hemangioblastomas". My doctor found 7 new ones but they were small and all responded well to the laser. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Hemangioblastomas are little knots of blood vessels. The laser cauterizes them. It's called photocoagulation. After the procedure, I go home and rest. The Doctor said "no restrictions" so I was able to run the next day. YAY! I did notice something new this time, I had little black dots and swirls, kinda like floaters in my right eye. But they have diminished.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">They also found cateracts. They aren't affecting my vision right now but when/or if they do, we will deal with it at that time. <em>Probably just old age.</em></span><br />
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<span style="font-family: Arial;"><strong>LOSING WEIGHT</strong></span><br />
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<a href="http://2.bp.blogspot.com/-ODWmwDeOZCA/UxzZge7zZYI/AAAAAAAAAJc/Cv6KQq55pg4/s1600/skinny.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-ODWmwDeOZCA/UxzZge7zZYI/AAAAAAAAAJc/Cv6KQq55pg4/s1600/skinny.jpg" height="239" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">I've been losing weight lately...I started a new diet in September and eliminated fast food, soda and sweets from my diet. Adding Homemade Harveys,(</span><a href="http://homemadeharvey.com/"><span style="font-family: Arial, Helvetica, sans-serif;">http://homemadeharvey.com/</span></a><span style="font-family: Arial, Helvetica, sans-serif;">) when I get a sweet craving. I eat them three times per day, they are yummy, no additives, kosher and one packet gives me 2.5 time the daily requirement of fruit. I've lost 25 pounds. Yay! But since my husband has been back from his latest business trip, I've fallen off the wagon...weird thing is, I'm still losing....hmmm? <em>It could be all the running I've been doing. I signed up to run my first Ultra Trail Marathon. (that's a race more than 26.2 miles). I wanted to challenge myself and I'm determined.</em> I ran 65 miles last week. (Imagine Forrest Gump) </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Now compared to other tries at weight lost, this has been a little too easy. ...there is a little voice in the back of my head saying I should go see the Endochronologist. <em>They did find cysts on my pancreas and kidneys. I'm a bit concerned at the borderline diabetic comment on my latest labs.</em> We will see.</span><br />
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<span style="font-family: Arial;"><strong>MOM'S DAY RUN</strong></span><br />
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<a href="http://1.bp.blogspot.com/-5vug2rNsQ_E/UxzYsy1gORI/AAAAAAAAAJQ/TnlJRn7C3mM/s1600/MDR+LOGO.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-5vug2rNsQ_E/UxzYsy1gORI/AAAAAAAAAJQ/TnlJRn7C3mM/s1600/MDR+LOGO.jpg" height="111" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">In the throws of training, and planning the 4th Annual Mom's Day Run. Hoping for another successful year. Raising money and awareness for VHL is the promise I made to Mom. This is "Her Day". I miss you mom. <3 </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><strong>MOM'S DAY RUN FACEBOOK PAGE HERE:</strong> <a href="https://www.facebook.com/MomsDayRun">https://www.facebook.com/MomsDayRun</a></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><strong>HATFIELDS AND MCCOY'S MARATHON</strong></span><br />
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<a href="http://2.bp.blogspot.com/-4CxEM1inBp8/UxzYjnA9plI/AAAAAAAAAJI/TQiPGUY5GME/s1600/hatfields+and+mccoys.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-4CxEM1inBp8/UxzYjnA9plI/AAAAAAAAAJI/TQiPGUY5GME/s1600/hatfields+and+mccoys.png" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">Next year we are gathering the troops for The Hatfield and McCoy Marathon. It starts in Kentucky and ends in West Virginia. Did you know that the McCoys had VHL? (</span><a href="http://www.vhl.org/wordpress/?s=hatfields+and+mccoys"><span style="font-family: Arial, Helvetica, sans-serif;">http://www.vhl.org/wordpress/?s=hatfields+and+mccoys</span></a><span style="font-family: Arial, Helvetica, sans-serif;">) Check out the marathon here: (</span><a href="http://p9.hostingprod.com/@hatfieldmccoymarathon.com/index.html"><span style="font-family: Arial, Helvetica, sans-serif;">http://p9.hostingprod.com/@hatfieldmccoymarathon.com/index.html</span></a><span style="font-family: Arial, Helvetica, sans-serif;">) We will be raising money for The VHL Alliance. Whoohoo!</span><br />
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<em><span style="color: black;"><span style="font-size: x-small;"><strong>*Hemangioblastomas</strong> (<b>capilliary hemangioblastomas)</b> are tumors of the central nervous system that originate from the </span></span></em><a class="mw-redirect" href="http://en.wikipedia.org/wiki/Vascular_system" title="Vascular system"><em><span style="color: black; font-size: x-small;">vascular system</span></em></a><em><span style="color: black; font-size: x-small;"> usually during middle-age. Sometimes these tumors occur in other sites such as the </span></em><a href="http://en.wikipedia.org/wiki/Spinal_cord" title="Spinal cord"><em><span style="color: black; font-size: x-small;">spinal cord</span></em></a><em><span style="color: black; font-size: x-small;"> and </span></em><a href="http://en.wikipedia.org/wiki/Retina" title="Retina"><em><span style="color: black; font-size: x-small;">retina</span></em></a><em><span style="color: black; font-size: x-small;">. They may be associated with other diseases such as </span></em><a href="http://en.wikipedia.org/wiki/Polycythemia" title="Polycythemia"><em><span style="color: black; font-size: x-small;">polycythemia</span></em></a><em><span style="color: black; font-size: x-small;"> (increased </span></em><a href="http://en.wikipedia.org/wiki/Blood_cell" title="Blood cell"><em><span style="color: black; font-size: x-small;">blood cell</span></em></a><em><span style="color: black; font-size: x-small;"> count), </span></em><a href="http://en.wikipedia.org/wiki/Pancreas" title="Pancreas"><em><span style="color: black; font-size: x-small;">pancreatic</span></em></a><em><span style="color: black; font-size: x-small;"> </span></em><a href="http://en.wikipedia.org/wiki/Cyst" title="Cyst"><em><span style="color: black; font-size: x-small;">cysts</span></em></a><em><span style="color: black; font-size: x-small;"> and </span></em><a class="mw-redirect" href="http://en.wikipedia.org/wiki/Von_Hippel-Lindau_syndrome" title="Von Hippel-Lindau syndrome"><em><span style="color: black; font-size: x-small;">Von Hippel-Lindau syndrome</span></em></a><em><span style="color: black; font-size: x-small;"> (VHL syndrome). Hemangioblastomas are most commonly composed of </span></em><a href="http://en.wikipedia.org/wiki/Stromal_cell" title="Stromal cell"><em><span style="color: black; font-size: x-small;">stromal cells</span></em></a><em><span style="color: black; font-size: x-small;"> in small blood vessels and usually occur in the </span></em><a href="http://en.wikipedia.org/wiki/Cerebellum" title="Cerebellum"><em><span style="color: black; font-size: x-small;">cerebellum</span></em></a><em><span style="color: black; font-size: x-small;">, </span></em><a class="mw-redirect" href="http://en.wikipedia.org/wiki/Brain_stem" title="Brain stem"><em><span style="color: black; font-size: x-small;">brain stem</span></em></a><em><span style="color: black; font-size: x-small;"> or </span></em><a href="http://en.wikipedia.org/wiki/Spinal_cord" title="Spinal cord"><em><span style="color: black; font-size: x-small;">spinal cord</span></em></a><em><span style="color: black; font-size: x-small;">. They are classed as grade one tumors under the </span></em><a class="mw-redirect" href="http://en.wikipedia.org/wiki/World_Health_Organisation" title="World Health Organisation"><em><span style="color: black; font-size: x-small;">World Health Organisation</span></em></a><em><span style="color: black; font-size: x-small;">'s classification system.</span></em>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com1tag:blogger.com,1999:blog-427896617090275175.post-72512651194591032014-01-03T10:38:00.002-08:002014-01-03T10:40:02.954-08:00I Can See Clearly Now....but...After getting Health Insurance...I've been getting scanned, xrayed, probed, poked and all that goes with it.<br />
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I have an HMO...so I have to jump through hoops. I had to ask my primary care doctor to get a referral to an opthamologist and then ask that doctor to refer me to Jules Stein. It's not as easy as it seems. The opthamologist, a local doctor, who I'm sure is a very capable doctor, saw me and made his recommendations which is not what my doctors usually say or do. He said he'd just watch them. My hair stood up on end. <br />
<br />
I guess I could just watch them...but my experience is...you watch them GROW and then it's possible that when you do start treating them, you don't get it all or they leak or hemorrhage or cause another set of problems. I asked for the referral and he says, I never send anyone over to Jules Stein. What???<br />
<br />
Yesterday we visited Jules Stein Eye Institute. I feel safe there, I feel like I'm in good hands. They know VHL, they know me. <br />
<br />
I get there early and they take me in right away...unusual, it usually takes forever, they are really busy. I told them that when I visited ER last year, they saw three new tumors in my right eye...and since I didn't have health insurance, I would have to wait...these little hemangioblastomas usually grow slow. I could tell right away, that the doctor saw them. I was dialated and then send up to take photos, and then another set with contrast.<br />
<br />
I then went back to see Dr. McConnell. She treats all of my family since Dr. Straatsma retired. Dr. Straatsma diagnosed my mom in 1962. She told me that there are 6 new tumors and she wants to laser them immediately...while they are small. They also noted the beginnings of cataracts. (no worries, they grow slow and are age related). She sends me up for more photos of the fundus? Four hours later...I'm done.<br />
<br />
Surgery is scheduled for Jan 24th. Their first opening was Thursday...but I have a race coming up and want to do that first. ha.<br />
<br />
While I get a little anxious having treatments and surgeries, this will be my 7th time. I know what to expect...it IS a process but it's over pretty quickly.<br />
<br />
My family has gone through HELL with VHL...I'm grateful that I'm still here and that I have my vision. For as long as I can remember, I've been afraid of the dark, one of my biggest fears is losing my sight.<br />
<br />
I watched my mother lose her sight at 25 yrs old, she raised three small children...and I can't imaging what she experienced personally. For me, she was strong and fearless...she never complained...she kept moving forward.<br />
<br />
My mother was a WARRIOR!<br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-jUpo5oT-Zvg/UscDAxnI9GI/AAAAAAAAAIs/5_0y7SCynuk/s1600/MOM.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-jUpo5oT-Zvg/UscDAxnI9GI/AAAAAAAAAIs/5_0y7SCynuk/s1600/MOM.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My mom <3</td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: 1em; margin-right: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-U51N9Y0t_mY/UscDH0DMOKI/AAAAAAAAAI0/tg8a1VF-SIs/s1600/UNCLE+BILL+AND+MOM.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-U51N9Y0t_mY/UscDH0DMOKI/AAAAAAAAAI0/tg8a1VF-SIs/s1600/UNCLE+BILL+AND+MOM.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Bill and my Mom, both VHL Warriors.</td></tr>
</tbody></table>
VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-55428395583256572262013-11-22T10:25:00.000-08:002013-11-22T10:26:46.277-08:00WHAT THE F&%$!!!!!!Having VHL, you get used to being poked and prodded, scanned, x-rayed with contrast and without contrast. I was diagnosed 20 years ago...<br />
<br />
I grew up knowing about VHL and the ever growing information that has been gathered over the years. Like, when my mother was diagnosed in 1962, we thought it was just an eye disease. So every year we'd get our eyes checked. The doctors at the time, said...if you don't show any signs of it by the time you are 20 yrs old, you won't get it. HA! You don't get VHL, you either have it or you don't.<br />
<br />
So we'd get our eyes checked regularly and passed the 20 yr old mark...and believed, hey! Maybe I won't "get it". Haha...weren't we surprised...and oh by the way...it's not just an eye disease...it's a syndrome affecting many organs in the body, CNS (Central Nervous System), Adrenal Glands, Kidneys, Pancreas, Eyes, Ears, Reproductive, Lungs...what else?<br />
<br />
In 1993, I was working for Warner Bros and we'd just gotten new insurance options. I had had my eye exam for the year, just 6 months prior and got the "all clear". As I flipped through the pages of doctors in my area, I notices that my mothers opthamologist was listed. So, I made an appointment.<br />
<br />
That appointment changed my life forever...I met with Dr. Bradley Straatsma, one of the founders of the Jules Stein Institute at UCLA. He found it right away. I knew something was going on, he was focused on my left eye....then he wanted to take photos of my retina, I had a sinking feeling...then the parade of resident's started. One after the other, they all were looking at my eyes. I knew it, they saw it...VHL had reared it's ugly head.<br />
<br />
After the parade, I was taken into a room that had all of the photos on the wall with lights behind them. Kinda neat to look at...they were yellowish round photos with red areas that looked kinda like lightening strikes but they were masses blood vessels. Dr. Straatsma showed me what he had seen and said I would need laser surgery. <br />
<br />
Then appointments were made for my sister, brother, daughters and son.<br />
<br />
I called my mother that day and gave her the news. I felt the weight of her disappointment through the phone. You plan on passing things onto your children...but not this. Not this.<br />
<br />
After all of the eye check ups, we found that my brother, Steve also had the angiomas on his retinas. Everyone else was clear...we would later find that my daughter Shana also has VHL. It has never materialized in her eyes.<br />
<br />
Fast Forward: Since that day in 1993, I've had 7 laser treatments and had about 10 years with no other angiomas. Then in December 2012, they found 3 new ones...I will have them lasered soon. I didn't have insurance at the time, so I had to wait. Angiomas are usually slow growing, so I'm hoping I'm ok. I have an appointment on Monday...a little concerned that through my insurance I have to go to an "in network" doctor first. My experience is, that most opthomologists haven't seen nor heard of VHL. I will be asking for a referral to Jules Stein.<br />
<br />
So, I have insurance! Yay! I had lab work a few weeks ago and learned I am borderline diabetic...gulp, that means I probably have tumor/cysts on my pancreas. I had the 24 hour urine test (still waiting for results) and MRI's done and just got the MRI report back yesterday. <br />
<br />
Having VHL, you expect to have manifestations of the various areas that VHL affects. It's a given. But when you see it in print...it's a different story. Up until now...I've gotten the "all clear" except for a little thing here and there since 1993.<br />
<br />
Yesterday, this is what I received in the mail: <br />
Radiologist recommends CT Scan of the pancreas.<br />
Here is the Radiologists findings:<br />
Within the pancreatic head, there is a T1 hypointense region (series11 image 34) measuring 1.2x.0.8cm. There is suggestion of mild arterial enhancement. The body and tail of the pancreas are not well visualized and may represent atrophy versus agenesis. The liver, gallbladder, spleen, and adrenal glands are unremarkable. There is a cyst within the superior pole of the left kidney measuring 7mm. A cyst with the inferior pole of the left kidney measures 4mm. A cyst within the mid to lower pole of the right kidney measures 8mm. No suspicious renal lesions are identified.<br />
<br />
There is not lymphadenopathy within the visualized portions of the abdomen. The visualized bowel are normal in caliber. There is no focal suspicious bone marrow signal. The abdominal aorta is normal in caliber. Incidental note is made of a duplicated inferior vena cava. The left sided inferior vena cava coalesces with the right vena cava at the level of the renal veins and there is a azygous continuation of the inferior vena cava. The hepatic veins drain directly into the right atrium.<br />
<br />
IMPRESSION: <br />
1. Suggestion of a 1.2x0.8cm mildly enhancing lesion within the head of the pancreas. However, this region is slightly limited in evaluation due to respiratory motion. A CT (pancreas protocol) is recommended for further evaluation given history of von Hippel Lindau and appearance of agenesis vers atrophy of the body and tail of the pancreas.<br />
<br />
2. A few bilateral renal cysts measuring up to 8mm on the right and 7mm on the left. No suspicious renal lesion is identified.<br />
<br />
3. Duplicated inferior vena cava which coalesce at the level of the renal veins and there is azygous continuation of the inferior vena cava. The hepatic veins drain directly into the right atrium.<br />
<br />
Ok, so...these are things I expect to have with VHL...but, WHAT THE HECK is wrong with my Vena Cava????? I Googled it and it sounds scary...especially if I ever need Renal Surgery. <br />
<br />
Calm down Suellen....hey, wait a minute!!! I've had hundreds of scans, MRI's, CT Scans and Xrays....wouldn't the Vena Cava abnormality have shown up???? This is a congenital thing, not something that JUST SHOWS UP?!? <br />
<br />
Breathe! ...I'm going to wait for the CT Scan results before freaking out. That's what I tell my daughter and I better practice what I preach, right? Breathe...<br />
<br />
Not going to worry about this until I'm told I have something to worry about. ...Breathe...<br />
<br />
I'm going for a run...somehow, running makes everything alright with me. Run, Breathe....I'm good.<br />
<br />
Someday, we will find a cure and I hope I get to witness that...Run, Breathe...I'm good.<br />
<br />
<br />
<br />
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<br />
<br />
<br />
<br />
<br />
OUR FAMILY VHL HISTORY<br />
<br />
<strong><span style="font-family: "Calibri","sans-serif";">VHL / FAMILY
HISTORY (Highlighted = VHL Diagnosis)</span></strong><span style="font-family: "Calibri","sans-serif";"> </span><o:p></o:p><br />
<br />
<o:p></o:p><br />
<br />
<span style="color: black; font-family: "Calibri","sans-serif";">William
"Will" Eggert Sierks (10/13/1893-5/7/1944)</span><o:p></o:p><br />
<br />
<i><span style="color: black; font-family: "Calibri","sans-serif";">VHL- no
diagnosis but cause of death was Adrenal Carcinoma </span></i><o:p></o:p><br />
<br />
<u><span style="color: black; font-family: "Calibri","sans-serif";">GRANDPA
WILL’S BROTHER</span></u><span style="color: black; font-family: "Calibri","sans-serif";"> Fred M. Sierks (-2/2/ 1916) </span><o:p></o:p><br />
<br />
<i><span style="color: black; font-family: "Calibri","sans-serif";">VHL – no
diagnosis but cause of death was exhaustion due to paralysis subsequent to
syringomyelia (cyst in spinal cord), with cystitis a contributing factor</span></i><span style="color: black; font-family: "Calibri","sans-serif";"> </span><span style="font-family: "Calibri","sans-serif";"> </span><o:p></o:p><br />
<br />
<span style="font-family: "Calibri","sans-serif";">Frederick William Sierks
(3/17/1917-7/6/1958)</span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL – never diagnosed.
Deceased. Blind, High Blood Pressure and Anxiety Attacks</span></i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">William
Roscoe Bovee (Sierks)</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><span style="font-family: "Calibri","sans-serif";">(1/19/1938-2/16/1981) </span><o:p></o:p><br />
<br />
<span style="font-family: "Calibri","sans-serif";"> <i> VHL-
Diagnosed in 1962 - Retinal Angioblastomas, Renal Cell Carcinoma (deceased)</i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong></span><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Amy
Bovee</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL – Diagnosed in 1980
– Retinal Angioblastomas, Endolymphatic Sac Tumors</span></i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Luke
Jenson</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL – Diagnosed in 1996
– Retinal Angioblastomas</span></i><strong><span style="font-family: "Calibri","sans-serif";"> </span></strong><o:p></o:p><br />
<br />
<strong><span style="font-family: "Calibri","sans-serif";"> <span style="background: yellow;"> Marianne Bovee (Sierks)</span> </span></strong><span style="font-family: "Calibri","sans-serif";">(7/31/1939-8/2/2010)</span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL- Diagnosed in 1962 -
Retinal Angioblastomas with full retinal detachment, Pheochromacytoma (never
removed), Hemangioblastoma on the brain stem (died in surgery)</span></i><strong><span style="font-family: "Calibri","sans-serif";"> </span></strong><i><span style="font-family: "Calibri","sans-serif";">(deceased)</span></i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Suellen
Ruth Garrison</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><span style="font-family: "Calibri","sans-serif";">(5/10/1958-)
</span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL- Diagnosed in 1993 -
Retinal Angioblastomas, Scar Tissue in Lungs, 3 cysts on Kidneys</span></i><strong><span style="font-family: "Calibri","sans-serif";">, </span></strong><strong><span style="font-family: "Calibri","sans-serif"; font-weight: normal; mso-bidi-font-weight: bold;">cysts on pancreas, (duplicated vena cava???)</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Shandria
Nicole Hicks</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><span style="font-family: "Calibri","sans-serif";">(3/20/1975-)</span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL- Diagnosed in 1994 -
Tumors/cysts in Cerrabellum (multiple surgeries 1994,1995,2000,2007, 2011), BP
Shunt, cysts on Kidneys, cysts on Pancreas, lung polyps</span></i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Davonte
Hicks-Parsha</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><span style="font-family: "Calibri","sans-serif";">(4/10/1994-)
</span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL- Diagnosed in 2006 -
Pheochromacytoma (adrenalectomy 2007)</span></i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<span style="font-family: "Calibri","sans-serif";">Kiedryn Dioneyse Hicks
(2/7/1978-) NO VHL<strong><span style="font-family: "Calibri","sans-serif";">
</span></strong></span><o:p></o:p><br />
<br />
<span style="font-family: "Calibri","sans-serif";">Rolando Juan Tolentino Jr
(3/17/1983-) UNKNOWN<strong><span style="font-family: "Calibri","sans-serif";"> </span></strong></span><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Steven
Robert Garrison</span></strong><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><span style="font-family: "Calibri","sans-serif";">(10/14/1959-) </span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL – Diagnosed in 1993
– Retinal Angioblastomas</span></i><strong><span style="font-family: "Calibri","sans-serif";">
</span></strong><o:p></o:p><br />
<br />
<strong><span style="background: yellow; font-family: "Calibri","sans-serif";">Adam
Joseph Chenkus</span></strong><strong><span style="font-family: "Calibri","sans-serif";"> </span></strong><span style="font-family: "Calibri","sans-serif";"> (9/21/1981) <strong><span style="font-family: "Calibri","sans-serif";">
</span></strong></span><o:p></o:p><br />
<br />
<i><span style="font-family: "Calibri","sans-serif";">VHL – Diagnosed in 1993
– Pheochromacytoma (adrenalectomy
1993)
</span></i><o:p></o:p><br />
<br />
<span style="font-family: "Calibri","sans-serif";">Victoria Michelle Garrison
(8/29/1982-) UNKNOWN<strong><span style="font-family: "Calibri","sans-serif";">
</span></strong></span><o:p></o:p><br />
<br />
<span style="font-family: "Calibri","sans-serif";">Robin Anne Garrison
(7/18/1962-3/21/12) <i>(deceased)</i><strong><span style="font-family: "Calibri","sans-serif";"> </span></strong>
UNKNOWN</span><o:p></o:p>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com1tag:blogger.com,1999:blog-427896617090275175.post-31355442422645640962013-11-22T09:37:00.000-08:002013-11-22T09:39:31.101-08:00CHALLENGESWe lost our Bobbie this year in a tragic accident. And as the Holidays approach, I'm reminded that our family is missing 2 important branches from our Family Tree.<br />
<br />
Not having my mother and my sister is something that not only makes me sad, so sad...I feel like there is a huge hole in my heart.<br />
<br />
I have so many regrets, so many things I wished I had said or done. I pray they knew how much I loved them.<br />
<br />
I get up every morning and pray that it won't hurt as much today. Today is November 22nd. 8 months ago my sister was walking down the street, when a carload of teenagers lost control of their vehicle and jumped the curb, severed a power pole, eject two of the teens, rolled over and struck my sister.<br />
<br />
I've visited the site, hoping to gain some kind of understanding of the "what's" and "whys". I still don't understand and that the investigation is still on going doesn't make it any easier. I'm hoping for some type of resolution...whatever that looks like. I also pray for peace for Tammy, the mother of Dylan who also lost his life. He was so young. My heart aches for her.<br />
<br />
There is a Palm Tree on Cedar Ave in Bloomington California...it's Dylan's Palm Tree...that Tammy so graciously shares with us. There is a picture of Dylan and Robin, ribbons, balloons and flowers. Tammy goes there almost daily. Our family has been there a few times. It's a sad sad place.<br />
<br />
I never imagined anyone in my family would have a memorial like this one.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-3EsQqNs_PkU/Uo-VFJ9FE6I/AAAAAAAAAH0/rorzWdTNsSc/s1600/neysi+robin.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="296" src="http://3.bp.blogspot.com/-3EsQqNs_PkU/Uo-VFJ9FE6I/AAAAAAAAAH0/rorzWdTNsSc/s320/neysi+robin.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Neysi having a moment.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-lEXxTpCcMXc/Uo-VLB7BmII/AAAAAAAAAH8/67WTItCyaUA/s1600/dylan's+palm+tree.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-lEXxTpCcMXc/Uo-VLB7BmII/AAAAAAAAAH8/67WTItCyaUA/s320/dylan's+palm+tree.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dylan's Palm Tree</td></tr>
</tbody></table>
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<a href="http://1.bp.blogspot.com/-VtU7kZXczVs/Uo-Tp9tRf_I/AAAAAAAAAHo/xw-FImEGFuI/s1600/Robin+slippers+2+(2).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-VtU7kZXczVs/Uo-Tp9tRf_I/AAAAAAAAAHo/xw-FImEGFuI/s320/Robin+slippers+2+(2).jpg" width="236" /></a></div>
VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-30701932729448880022013-05-15T21:49:00.002-07:002013-05-15T21:50:01.886-07:00MOTHER'S DAY<dt a5_="0" class="title"><a a5_="0" href="http://pages.teamintraining.org/los/nikesf13/MOMS-DAY-RUN-2013"><span a5_="0" class="heading">MOM'S DAY RUN 2013</span> </a>
<div a5_="0" class="separator">
<br /></div>
<div a5_="0" class="dateCreation">
May 16, 2013 by Suellen Lindquist </div>
<dd a5_="0"><b:xhtml a5_="0">
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<img a5_="0" height="152" src="http://pages.teamintraining.org/EtoolsBaseDir/2013/5/15/22/members/2452213/HONOR%20BOARD%202.JPG" width="160" /></div>
<br />
<div a5_="0" align="left">
Mom's DAY RUN 2013</div>
<br />
<div align="left">
My mom didn't know the legacy she would leave. She did say she
wished she could do more to raise awareness and money for VHL. </div>
<br />
<div align="left">
So after she passed away, I made a promise that I would do
this.</div>
<br />
<div align="left">
The Mom's Day Run was born on May 8, 2011. 48 family and friends
showed up to run or walk our little race. We raised $1500.</div>
<br />
<div align="left">
This year was our 3rd Annual Mom's Day Run and 161 people came and
we raised $4990! I walked out to the first turn. I wanted to take Starting Line
photos and catch shots of the participants as they passed me by. As I turned
towards the Starting Line, my eyes brimmed with tears. "Momma, can you believe
this?" "Look, what we've done." My heart was overflowing with pride. </div>
<br />
<div align="left">
I kept a promise...</div>
<br />
<br />
<br />
<br /></div>
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<dt class="title"><a href="http://pages.teamintraining.org/los/nikesf13/ROBIN"><span class="heading">ROBIN</span> </a>
<div class="separator">
<br /></div>
<div class="dateCreation">
May 16, 2013 by Suellen Lindquist </div>
<dd><b:xhtml>
</b:xhtml><div>
<div align="left">
<img height="204" src="http://pages.teamintraining.org/EtoolsBaseDir/2013/5/15/22/members/2452213/Robin%20and%20Mom%20(2).JPG" width="160" /><img height="203" src="http://pages.teamintraining.org/EtoolsBaseDir/2013/5/15/22/members/2452213/ROBIN%20AND%20ME.JPG" width="206" /></div>
<br />
<div align="left">
My sister Robin with my mom and me.</div>
<br />
<div align="left">
We lost my sister to a tragic accident on March 21, 2013</div>
<div align="left">
You never ever imagine getting "that call", that someone you love
has been killed </div>
<div align="left">
in a horrible accident. </div>
<br />
<div align="left">
My sister was walking down the street and was hit by a car that
lost control.</div>
<div align="left">
An awful accident.</div>
<br />
<div align="left">
My sister and I had a typical sister relationship. We shared a
room growing up, we shared secrets...she was my little sister and I miss her so
much.</div>
<br />
<div align="left">
<b>HERE IS THE SPEECH I READ AT HER
MEMORIAL</b></div>
<br />
<div align="left">
<i><b>ROBIN ANNE GARRISON</b></i></div>
<div align="left">
A box arrived the other day. …it was on the counter when I got
home. A little brown box about this big. It just sat there, this little brown
box. I knew it was coming…and that this was just one stop along way…</div>
<br />
<div align="left">
Robin was born on a Wednesday morning in the summer of 1962. Mom
didn’t want to wait at the hospital when she could wait out her labor at home.
She waited till the last possible moment before going to the hospital. She was
taken up to delivery while dad filled out the paperwork downstairs. ….Robin
didn’t wait…she was delivered before dad made it upstairs. </div>
<br />
<div align="left">
Robin came into the world with a yell. This tiny, crying,
screaming little being would be my little sister. More than that, she was our
baby sister. As older siblings, it’s a given that you look after the younger
ones. It’s an unwritten rule. So, I made sure she didn’t eat something she
wasn’t supposed to, or stick her finger in the light socket. I walked her to
school, and made sure she didn’t dress funny. We shared a room, we shared
secrets, we shared hopes and dreams. I enjoyed being Robin’s big sister. I liked
to believe that I could look after her, protect her…and keep her safe.</div>
<br />
<div align="left">
Robin was just 4 feet 11 inches tall, (but she would tell you 4
feet 11 ½ inches tall) . She was loud, but not in a negative way…being the
youngest, she just wanted to make sure she was heard. She never let you forget
that she was the youngest and she enjoyed all the perks with being the baby of
the family…and Mom’s favorite.</div>
<br />
<div align="left">
Some of you knew my sister as Bobbie. If you did, you were in a
select group of people. Shana, the oldest of her nieces and nephews started
calling her Bobbie, and it just stuck. All of the nieces and nephews called her
Bobbie. Some called her: My Bobbie.</div>
<br />
<div align="left">
If you were in the “My Bobbie” club, you might have had nick
names. Like, Honey Bunch, Sugar Plump and she’d end conversations with “Smooches
or Toodles”. With Bobbie, you shared exciting adventures. She was loud, she was
funny, she was creative, and fun. It didn’t hurt that she was just a little
taller than you were. She would build forts with sheets and pillows. She would
have water balloon fights, sometimes food fights. She made popcorn and let you
stay up late. She would let you watch shows your parents wouldn’t let you watch.
She would bake cookies and tell stories that made you laugh until you cried.
</div>
<br />
<div align="left">
She would often catch the kids trying to measure their own height
with hers. If you were taller than Bobbie, you were grown up. No matter how old
you were. No matter how tall you were, she would wrestle you to the ground and
sit on you, and yell “I’m Queen of the Mountain!”…and she was.</div>
<br />
<div align="left">
Robin was Queen of the Mountain.</div>
<br />
<div align="left">
I asked family members to give me one word that would describe
Robin. In this list, there is one word that will seem out of place. It isn’t…but
you’ll have to ask my Uncle Rob to tell you the story behind it. Here is the
list:</div>
<ul>
<li align="left">Endearing
<li align="left">Funny
<li align="left">Loving
<li align="left">Scrappy
<li align="left">Fiesty
<li align="left">Smart
<li align="left">Creative
<li align="left">Stubborn
<li align="left">Sweet
<li align="left">Loyal
<li align="left">Boisterous
<li align="left">Cowabunga
<li align="left">Fun
<li align="left">Awesome
<li align="left">Fearless</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</li>
</ul>
<br />
<div align="left">
My sister was the youngest and she used that to her benefit. When
we were younger and often times bored, we’d always look for something to get
into. Robin, always a willing participant would join in on the fun. Mostly
mischeavious fun but sometimes “we’re gonna get it kinda fun”. When things would
get a little dicey, while we were on one of these adventures, Robin (maybe the
smartest one of the three) would make it home before me and Steve to tell on us.
Mom would be waiting, hand on her hip, tapping her toe…and Robin with that big
old grin hiding behind her. Robin never got into trouble, at least that’s how I
remember it. She’d probably tell you different, because she was the good
daughter and mom’s favorite. Steve and I teased her merclessly, I guess that’s
what siblings do.</div>
<br />
<div align="left">
When we were in our teens, Robin was 16 yrs old, she had a credit
card, a bank account, she worked two jobs and was going to school. Out of the
three of us, I always believed she’d be the most successful. She was determined,
ambitious and confident. She held the world I her hand.</div>
<br />
<div align="left">
So, how do you measure success? Is it a piece of paper on the
wall? Is it your bottom line? Is it material things? I think Robin’s success was
in the relationships she made. Her nieces and nephews adored her. And she them.
</div>
<br />
<div align="left">
I read somewhere, that when you’re laying on your death bed, you
aren’t wishing that you had spent more time at the office, …I believe the things
that are most important are the relationships that you’ve built. It’s the hugs,
it’s the” I love you’s”…it’s the time spent. Robin gave that time...</div>
<br />
<div align="left">
I wish I had spent more time with my sister. I wish I had done a
better job at being a big sister. </div>
<br />
<div align="left">
I asked the kids to share a story about Bobbie. I wanted to share
more of who she was. But, there are too many storys to mention. The kids all
loved hanging out with Bobbie…she had the ability to make a lot of fun out of
nothing and they were the best times.</div>
<br />
<div align="left">
Robin was loved, she was cared about and she had a family who will
miss her so much.</div>
<br />
<div align="left">
A little brown box arrived the other day…and I will take great
care of this precious little box, until I carry it to its destination. I will
make sure you arrive safely, then release you into the sea. I will visit you at
dawn when I run along the shores, I will see you in the sunset as I walk along
the sand…and I will miss you every day. I love you Robin and will miss you very
much.</div>
<br />
<br /></div>
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<dt class="title"><a href="http://pages.teamintraining.org/los/nikesf13/My-Mom"><span class="heading">My Mom</span> </a>
<div class="separator">
<br /></div>
<div class="dateCreation">
May 16, 2013 by Suellen Lindquist </div>
<dd><b:xhtml>
</b:xhtml><div>
<div align="left">
<img height="159" src="http://pages.teamintraining.org/EtoolsBaseDir/2013/5/15/22/members/2452213/mom%20and%20me%20(2).JPG" width="181" /><img height="160" src="http://pages.teamintraining.org/EtoolsBaseDir/2013/5/15/22/members/2452213/shana.JPG" width="158" /></div>
<br />
<br />
<br />
<br />
<div align="left">
My mom was my hero. She lost her sight at the age of 25, she had 3
small children.</div>
<div align="left">
I don't remember her not being blind. I was about 5 years old and
I don't think I really understood what was going on...but I remember her being
brave and strong...and she kept moving forward. To me, she was
invincible.</div>
<br />
<div align="left">
Later, as I grew older, I would think about how hard life was for
her. Raising children is hard enough with your vision. We were brats and I know
we drove her crazy. We'd laugh about those days later but, when I had children
of my own...I imagined the terror she must have experienced. My mom was
amazing.</div>
<br />
<div align="left">
She was kind, she was gracious, she would give you the shirt off
of her back, even if she didn't have it to give, she would give.</div>
<br />
<div align="left">
We learned about VHL when we were kids...and VHL has evolved from
being "just an eye disease" to a "cancer syndrome" We were told if we had no
symptoms by the time we were 20 years old...we wouldnt "get it". Interesting
statement...because you don't "get it". You have it or you don't. </div>
<br />
<div align="left">
Fast forward to 1994...I worked for Warner Bros at the time. We
had just gotten a new insurance and I was browsing through the book and saw a
name I recognized. Dr. Bradley Straatsma (you can google him). He was the same
doctor that diagnosed my mother back iin 1962. I had just been seen by an
opthamologist a few months prior but made the appointment anyways. Not even an
hour into the appointment, I found out that I had VHL. We called in the entire
family to get scanned. My brother had it too. Dr. Straatsma would arrange the
surgery for my brother, since he had not insurance. We will be forever grateful
to Dr. Straatsma and all of the work he has done for us and other VHL patients.
UCLA has a VHL Clinic now...this has been a lifesaver.</div>
<br />
<div align="left">
UCLA is a teaching hospital, so when you have a rare disease...all
of the residents come in to take a look. I had my first surgery then. There
would be 7 more.</div>
<br />
<div align="left">
It's a strange feeling when you are diagnosed with a disease. I
mean, I always new of the possibilitiy but when you get the actual dianosis,
it's a totally different deal. I didn't cry, I didn't get mad, I wasn't
sad...not until I heard my mother's voice crack when I told her I too have VHL.
I think, she felt responsible... I didn't understand the totality of that moment
until, my daughter Shana was diagnosed.</div>
<br />
<div align="left">
There is nothing worse than knowing you've passed something like
this onto your child. And nothing can prepare you for the the terror that each
surgery brings. We say our prayers, I try so hard to be strong because my
children need me to be strong. They look to me for this strength. I cry when I'm
alone...I regroup and I keep moving forward. </div>
<br />
<div align="left">
We've since learned not to worry about what we can not control. We
have a thing in our family that: We do; not worry about it until we have
something to worry about. This means...that no matter how many scans they do, or
how many times they call you back for a redo, or no matter what kind of face the
DR makes...we do not worry until we have something to worry about. We are VHL
WARRIORS...we fight one battle at a time. That's what we do.</div>
<br />
<div align="left">
When Shana had her last surgery in April 2011, it was a terrifying
thing since we had just lost our mom to the same type of surgery. I prayed that
my mother would hold her in her arms, keep her safe and comfort her. When Shana
woke up she said: "Grandma was here, she brushed the hair from my face, like she
did when I was little". </div>
<br />
<div align="left">
And if...that SOMETHING comes up, we gather the troups, we huddle
together in prayer, we gain strength from each other and know, that my precious
mother is watching over us.</div>
<br />
<div align="left">
My family is but one...there are so many others out there fighting
the fight, no mater what type of cancer it is...no matter what illness. They all
need your help.</div>
<br />
<div align="left">
Please give what you can...every little bit helps.</div>
<br />
<div align="left">
Thank you xoxo</div>
<br />
<div align="left">
SIDE NOTE: <i>A few years ago my uncle put a Family DVD
together. There were snapshots and video's of our family going back to the 50's.
There was one shot, that is seared into my brain forever...a video, of my
mother. It was in the 60's, we were small and goofing off for the camera. And
then there was this one shot (video) where she was looking into the
camera...I've never known what it felt like to have my mother look at me. What a
glorious gift...I don't think my Aunt and Uncle even know...but I will treasure
that small gift for the rest of my life.</i></div>
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<dt class="title"><a href="http://pages.teamintraining.org/los/nikesf13/My-Fundraising-Page"><span class="heading">SUELLEN'S
FUNDRAISING PAGE</span> </a>
<div class="separator">
<br /></div>
<div class="dateCreation">
May 15, 2013 </div>
<dd a5_="0"><b:xhtml a5_="0">
</b:xhtml><div a5_="0">
<div align="left">
<b>KEEPING MY WORD</b></div>
<br />
<div align="left">
I promised my mom...that I would do whatever I could to raise
money and awareness for Cancer Research. Am I doing enough? I always ask myself
that question. Could I do more...? The greatest gift we can give is of
ourselves. Our time, our efforts... our help.</div>
<br />
<div align="left">
My mom passed away on August 2, 2010 from a Cancer Syndrome. Since
then, I've helped raise almost $10,000 for Cancer Research. I will keep my
promise to do whatever I can to raise money and awareness for Cancer Research.
</div>
<br />
<div align="left">
I am participating in the Team in Training, NIKE Half Marathon in
San Francisco. That's 13.1 Miles. I am running to help find a cure. I will run
in Memory of my Mom and in Honor of my daughter (who has the same
disease).</div>
<br />
<div align="left">
Did you know that Team in Training has raised over 1.2 Billion
dollars for Cancer Research with help from folks like you. You can donate now by
clicking the button and donate whatever you can...$5, $10, $20...no amount is
too small, because if we all give a little, it will turn into a lot.</div>
<br />
<div align="left">
Today, I will ask all my friends and family to please donate
whatever you can. The need is great, the cause is worthy and someday because of
your dollar...we will find a cure!</div>
<br />
<div align="left">
Thanks in advance for your love and support. </div>
<br />
<div align="left">
<3 4 Mom</div>
<br />
<div align="left">
xoxo, Suellen</div>
<br />
<div a5_="0" align="left">
__________________________________________________</div>
<div a5_="0" align="left">
This makes me want to STAND UP and FIGHT!. Fight for those
who can not, for those who won't and for those that don't know they have
something to fight for....</div>
<br />
<div a5_="0" align="left">
<span a5_="0"><b a5_="0">MAN IN THE ARENA</b></span></div>
<div a5_="0" align="left">
It is not the critic who counts; not the man who points
out how the strong man stumbles, or where the doer of deeds could have done them
better. The credit belongs to the man who is actually in the arena, whose face
is marred by dust and sweat and blood; who strives valiantly; who errs, who
comes short again and again, because there is no effort without error and
shortcoming; but who does actually strive to do the deeds; who knows great
enthusiasms, the great devotions; who spends himself in a worthy cause; who at
the best knows in the end the triumph of high achievement, and who at the worst,
if he fails, at least fails while daring greatly, so that his place shall never
be with those cold and timid souls who neither know victory nor
defeat.</div>
<br />
<br />
<div align="left">
<b>QUOTES ABOUT GIVING</b></div>
<br />
<div align="left">
I am only one, but I am one. I cannot do everything, but I can do
something. And I will not let what I cannot do interfere with what I can do.
~Edward Everett Hale</div>
<br />
<div align="left">
Nobody made a greater mistake than he who did nothing because he
could only do a little. ~Edmund Burke</div>
<br />
<div a5_="0" align="left">
Nobody can do everything, but everyone can do something.
~Author Unknown</div>
</div>
<br /></dd>
<br />
<br />
<br />
<br /></dt>
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VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-26681121320829558732013-02-03T16:33:00.002-08:002013-02-03T16:33:50.013-08:00Hello, It's Me - February 3, 2013<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-hf3DFKQek1Y/UQ79rUeVVeI/AAAAAAAAAGM/ZxQyPDUCEo0/s1600/mom.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-hf3DFKQek1Y/UQ79rUeVVeI/AAAAAAAAAGM/ZxQyPDUCEo0/s320/mom.jpg" width="306" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Mom and Uncle Bill</div>
<br />
February 3, 2013<br />
<br />
It's been a while since I've posted...and so much has happened.<br />
<br />
I think of Mom everyday and miss her so much. All those feelings come rushing back when I do...I should have been a better daughter, she deserved so much more than she received.<br />
<br />
So...till I'm no longer here, I will do whatever I can within my power to raise money and awareness for Cancer Research...and VHL. Because, I made that promise.<br />
<br />
My daughter, Shana and grandson Davonte both have VHL. I worry everyday, that VHL will rear it's ugly head again...it's difficult knowing it's lurking there. We are always waiting for whatever comes next. This past year has been a good year...nothing new has popped up. I hope it stays that way.<br />
<br />
I don't worry for myself as much as I worry for my children. I know it's there...I'm not afraid, I know I will have to deal with whatever it brings...but, I will worry when I have something to worry about. That's our family motto as it concerns VHL. We will worry when we have something to worry about...because worrying isn't going to change anything. <br />
<br />
My last check...they found 3 new tumors in my right eye. I'll be having laser surgery soon. Then...endochronolgy. (sigh)...I'll worry when I have something to worry about.<br />
<br />
I'm in MDR Mode now. I just sent out the SAVE THE DATE! Mom's Day Run 2013 will be on May 12th. We are hoping to pass the 200 mark. That's 200 run/walkers! I've set up the Registration Link and updated the Facebook Page. I will start sponsorship solicitation soon.<br />
<br />
REGISTRATION INFO FOR MDR: <a href="http://www.active.com/running/ventura-ca/moms-day-run---2013">http://www.active.com/running/ventura-ca/moms-day-run---2013</a><br />
<br />
PHOTOS FROM MDR 2012: <a href="http://www.facebook.com/#!/events/359846527371706/">http://www.facebook.com/<wbr></wbr><span class="word_break"></span>#!/events/359846527371706/</a>.<br />
<br />
MOM'S DAY RUN FACEBOOK PAGE: <a href="http://www.facebook.com/#!/events/359846527371706/?fref=ts">http://www.facebook.com/#!/events/359846527371706/?fref=ts</a><br />
<br />
I'm currently employeed with The Leukemia & Lymphoma Society. I work with Team in Training which is one of LLS's fundraising groups. I've fundraised with them for several events. And They've been really supportive with our Mom's Day Run. Hopefully we can grow the MDR and raise even more money this year. I think, keeping it a Home Town Event is what makes this event so appealing.<br />
<br />
I'm also working with VHL to have our very own 5k in September, in Ann Arbor Michigan at Gallup Park. I'm excited to be a part of this and hoping we can create a buzz...and have a TEAM VHL!!!<br />
<br />
<br />
Gotta Run,<br />
Suellen<br />
<br />
Marianne's Family<br />
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<br />
<br />VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-69723545594231838072011-07-31T13:17:00.000-07:002011-07-31T13:20:51.747-07:00Happy Birthday Mom! ~ July 31, 2011A year ago today, we spent your birthday together. You were surrounded by your children, grand children and great grand children. We never imagined that two days later you'd be gone.<br />
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<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-l1vIB-FF_jw/TjWxndxdihI/AAAAAAAAAFA/K9Yj-anDI-E/s1600/41143_1467467619345_1613204519_1075138_6695709_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://2.bp.blogspot.com/-l1vIB-FF_jw/TjWxndxdihI/AAAAAAAAAFA/K9Yj-anDI-E/s400/41143_1467467619345_1613204519_1075138_6695709_n.jpg" t$="true" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">July 31, 2010</td></tr>
</tbody></table> As I look at this photo...I remember. I remember that I was concerned. Something was wrong. I never guessed that VHL had reared it's ugly head. You were 71 years old and never complained of headaches or dizziness. It was Aunt Val who mentioned...maybe???<br />
<br />
The next day was the beginning of a horrific nightmare. This week has been difficult for your family. Not that we haven't been grieving for the last 363 days but because each day takes your farther and farther away.<br />
<br />
Remember, way back when...you read a book about Edgar Cayce. You were intrigued about his life and mission. I later read the book and we would have discussions about life and the hereafter. We talked about these things for hours and hours. <br />
<br />
Last week, I went onto the ARE website, dedicated to his readings and found one regarding "Coping with the Loss of a Loved One".<br />
<br />
It read: <br />
<h1 style="border-bottom: rgb(216,221,250) thin solid; border-left: rgb(216,221,250) thin solid; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 18px; height: 30px; margin-bottom: 1em; padding-left: 0.5em; padding-top: 0.5em; width: 500px;">Coping With the Loss of a Loved One</h1><div style="width: 96%;"><div class="small"><img align="right" alt="Doves Flying" hspace="2" src="http://www.edgarcayce.org/uploadedImages/Edgar_Cayce/Spiritual_Growth/life_issues/doves-flying.jpg?n=4209" style="height: 300px; width: 189px;" title="Doves Flying" vspace="8" />Of all the helpful information from the Edgar Cayce philosophy, one of the most comforting is the promise that life is continuous; our time on earth is just one aspect of a soul’s journey of growth and transformation through time. Not only will we meet our loved one again beyond the veil we know as physical death, but our relationship with them will continue as well.</div><div class="small">Cayce suggests that one of the greatest gifts we can give to someone who has passed on is to pray for them. And most importantly, to pray that they will recognize that they have moved on from earthly life, and now have the opportunity to continue their soul development in a different way. Cayce says that those we love on the other side are actually as close to us as our thoughts, and we can be most helpful to those individuals by focusing on the happy, joyful times together, and releasing – as much as we can – the sadness and grief we feel at their passing. </div></div><br />
We went to church today. Jeff delivered a beautiful Liturgy. In the prayer he asked for prayers for family members who were struggling with their health. I cried. A woman sitting next to me laid her hand on my arm. That touch meant so much. Just a touch from a stranger, who doesn't know my story. It was thoughtful and very nice.<br />
<br />
Edgar Cayce learned that we are here on this earth to love one another. Very simple...and today's sermon was about loving one another despite our differences. <br />
<br />
So today, I'll look forward...knowing you can hear me and try not to be sad. Mom, go forward, live, love and be joyful. I know you can see us...<br />
<br />
I love you, see you soon,<br />
Suellen<br />
<br />
EDGAR CAYCE<br />
<a href="http://www.edgarcayce.org/">www.edgarcayce.org/</a>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-57637112272486941142011-07-15T19:32:00.000-07:002011-07-15T19:32:28.249-07:00Kennedy's Book<span style="font-family: Arial, Helvetica, sans-serif;">I wrote a book about Kennedy asking "Where's Grandma?" It was shortly after my mom passed away and she asked her mom, "Where's Grandma?" It was a sweet and simple conversation by a three year old.</span><br />
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<div class="product_description"><span style="font-family: Arial, Helvetica, sans-serif;"><em>Kennedy, age 4, learns that her great grandmother has passed away and gone to heaven. Follow along as she deals with "grown up" emotions in her own special way. </em></span></div><div class="product_description"> </div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-3icKnbj6OsQ/TiD4ByDZDlI/AAAAAAAAAE8/Ge3Ch-QbVSw/s1600/320.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-3icKnbj6OsQ/TiD4ByDZDlI/AAAAAAAAAE8/Ge3Ch-QbVSw/s320/320.jpg" width="210" /></a></div><br />
<br />
<br />
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<br />
You can purchase by clicking this link:<br />
<br />
<a href="http://www.lulu.com/commerce/index.php?fBuyContent=10403227"><img alt="Support independent publishing: Buy this book on Lulu." border="0" src="http://static.lulu.com/images/services/buy_now_buttons/us/book.gif?20110624162023" /></a>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-61201777960578356662011-05-14T16:01:00.000-07:002011-05-24T11:03:56.094-07:00SHANA'S SURGERY ~ 4/25/2011<span style="font-family: Arial, Helvetica, sans-serif;">Whew!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">What a crazy couple of weeks.</span><br />
<br />
<span style="font-family: Arial;">It started...end of March. Shana wasn't feeling very good. Headaches, dizziness...the words that scare me the most. She went to the doctors, then you have to wait for a referral that never comes.</span><br />
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<span style="font-family: Arial;">On April 15th, she goes to the ER. Thankfully Tiana (my grand daughter) goes with her....and texts us on the developments. Then I get a call in the middle of the night...they are keeping her, there is a tumor and cysts that they need to remove.</span><br />
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<span style="font-family: Arial;">As I hang up the phone, a dark cloud comes over me. Remembering my mother's surgery last summer. Dread. Fear. Sadness. ...and worry for my daughter. What she must me going through right now. VHL Sucks!</span><br />
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<span style="font-family: Arial;">I never get back to sleep. I go downstairs and wait for the sun to come up. I pack and leave for the hospital. My husband is so very understanding, I kiss him good bye... </span><br />
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<span style="font-family: Arial;">Mama Bear takes over.</span><br />
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<span style="font-family: Arial;">The drive is about 1 1/2 hours...I pick up my grand daughter and meet at my other daughter's house. We are all nervously quiet.</span><br />
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<span style="font-family: Arial;">Loma Linda University Medical Center is in Loma Linda, California. San Bernardino County...about 100 miles from my home. </span><br />
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<span style="font-family: Arial;">We get to the hospital and Shana is worried. She had been crying. My heart breaks... She tells us what the doctors have said and surgery is scheduled for Monday. (it's Saturday). I ask the doctors and nurses about testing for a Pheo (pheochromocytoma). I believe this is why my mother passed away during her surgery. The doctor orders a 24-hour urine test.</span><br />
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<span style="font-family: Arial;">I've packed for a few days, knowing that I would stay with the kids. It's hard being away from my husband but it would be harder not being here. We go through the motions and prepare for Monday.</span><br />
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<span style="font-family: Arial;">Monday comes and we don't have a definate time. We are all waiting in the waiting room. Shana can only have two visitors at a time. We rotate. Her children, her siblings, her parents...all there.</span><br />
<br />
<span style="font-family: Arial;">I've been asking about the test results. No one seems to have an answer. I tell the nurses, "I will not allow surgery to happen without those test results".</span><br />
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<span style="font-family: Arial;">Eight hours have passed...</span><br />
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<span style="font-family: Arial;">Finally at 6pm, the surgeons come in. They are ready to take her to surgery. I ask about the tests and they say they are taking her without the results. I ask "why did you order a 24-hour urine test, if you weren't going to wait for those results" ? I tell them, they can not do the surgery without those results. I explain that if she is in surgery and the Pheo "fires off"...she could have a crisis on the table. I CAN NOT LET THEM DO THE SURGERY. The surgeons then get on the phone...later I find out they are speaking with endochronologists. ...and they decide they need further testing. CT Scans follow, blood tests...and we wait for the urine test. I find out later that they had to send that test to an outside lab and it could take a few days. I also notice the nurse running into Shana's room to get her urine out of the refrigerator. 24 hours were up at noon on Monday. They never had any intention on using the urine tests to decide. UGH!</span><br />
<br />
<span style="font-family: Arial;">I get so frustrated with doctors sometimes. Some listen, others placate, most ignore me. But after experiencing my mother's surgery. I will NEVER not ask question with out a satisfactory answer. I only have one Shana. </span><br />
<br />
<span style="font-family: Arial;">This surgeon is experienced in vascular neurosurgery. Which is a good thing. Hemangioblastoma's are highly vascular. But he only does surgery's on Monday and Thursday. So we hope surgery will happen on Thursday. </span><br />
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<span style="font-family: Arial;">....it doesn't. Test results are not back yet. The CT Scan shows an abnormality on her adrenal gland though.</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-YXnR0O_tlJA/Tc8MoGN419I/AAAAAAAAAEc/pf--GN8pSZ0/s1600/shana+in+hospital.bmp" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="302" j8="true" src="http://2.bp.blogspot.com/-YXnR0O_tlJA/Tc8MoGN419I/AAAAAAAAAEc/pf--GN8pSZ0/s320/shana+in+hospital.bmp" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for surgery</td></tr>
</tbody></table><br />
<br />
<span style="font-family: Arial;">Shana is getting restless...it's hard being in the hospital, away from home and your kids. Even though we visit every day. She wants it to be over with.</span><br />
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<span style="font-family: Arial;">Pastor Kenny comes by...he is an awesome presence. He is sweet, gentle and kind. He listens and then prays with us and for Shana. There is a light in the room...I feel my mother there.</span><br />
<br />
<span style="font-family: Arial;">Shana's surgery is now scheduled for Monday afternoon (April 25th). That morning, I get up with the kids...the plan is to take them to school, I will pick them up as soon as I'm given the surgery time (they can't afford to miss much school, especially so close to year end) and get to the hospital directly after. So we get up...I walk the dog, as soon as I get inside, Tiana is at the bottom of the stairs: "they are taking mom into surgery now". Ack! I tell them to get up and ready, we need to leave ASAP!! I call my other daughter, who happens to be on her way to work and right around the corner from the hospital. I ask her to <u>make them</u> wait till we get there.</span><br />
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<span style="font-family: Arial;">We're 20-30 minutes away...and it's rush hour!</span><br />
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<span style="font-family: Arial;"><em>When my mother had her surgery...I knew she would be having surgery but I never imagined it would be immediately. When I got to the hospital...she was sedated and tied to the bed. They said she was fiddling with the IV's. My mother was blind, I knew that this is the way my mother saw. Through her fingers...she wasn't fiddling...she was looking. She was sedated. I hope she knew we were there. I kissed her and told her I'd be "right there" waiting for her to come back. ....I never saw her again.</em></span><br />
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<span style="font-family: Arial;">I couldn't let this happen with Shana! Neysi would hold them off at all costs...and she did! She told the nurses...that they COULD NOT take Shana without her family seeing her. Trying to explain what happened with her grandmother. She was in tears and the anesthesiologist told her they would wait. Thank Goodness! Because I broke speed limits to get there. So did her father and brothers. We all got there at the same time and were able to see Shana before her surgery.</span><br />
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<span style="font-family: Arial;">She seemed ok with it. She wasn't scared. She was calm. The anesthesiologist prayed with us. I kissed her cheek and reminded her what grandma told her in Shana's dream. "Everything will be ok". Then they took her off to surgery.</span><br />
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<span style="font-family: Arial;">My other daughter and I went to the chapel...we prayed. I asked for God to be with her. To guide the surgeons, to please bring her back to us... I also asked my mother to hold her hand, cradle her in her arms and keep her safe.</span><br />
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<span style="font-family: Arial;">The thing I really like about his hospital is they text you as surgery progresses. So while in the waiting room, they texted when the surgery began. When they started the incision, when they were working on the mass...and then, 5 minutes after they started on the mass...we get a text saying the surgeon wanted to speak with us. AAAAAWKKK! I've seen it on TV many times, but never experienced them calling us into a special room?!!! Neysi is trying to keep me calm. I'm starting to panic...I'm brimming over with tears. The stress of the last 10 days, is just too much. I've tried to stay strong for my family....</span><br />
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<span style="font-family: Arial;">The surgeon comes in...I can barely talk but I ask him "Is she ok?"...he says "Yes". I ask "Yes"???? My ears hear it but...I'm barely processing any verbage. But she is ok. The other surgeons are closing. He said, everything went as planned. I ask him if I can hug him...I do. And I say: "God Bless your hands". A relief sweeps over me...but I know I still need to be strong...recovery takes months.</span><br />
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<span style="font-family: Arial;">We go back into the waiting room. My grand daughter is standing at the edge of the waiting room. looking so frightened and concerned. I tell her everything is ok. A big sigh comes out of all of us. We wait till she goes to recovery in ICU. Saying our prayers and thanking God for this blessing. </span><br />
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<span style="font-family: Arial;">I have this thing with Shana. I KNOW she is ok when I look into her eyes. She knows this...no words need be spoken. I just know. As soon as I see her...no matter how many tubes and wires are in and around her...her eyes, tell me she is ok. <strong><u>She is ok.</u></strong> She is tired, weak and needs rest, so we limit the visit to just minutes. All the other family members come and see her, two by two. We leave her to rest...and will be back in the morning.</span><br />
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<span style="font-family: Arial;">I feel like I've been at the "starting line" of a race for the passed 10 days. I cry in the shower...not wanting the kids to see me crumble. I try to be strong. I say my prayers everyday!!</span><br />
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<span style="font-family: Arial;">The next day Shana has already been out of bed...doing laps around the nurses station. She only spent 12 hours in ICU. She is so strong...she amazes me!</span><br />
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<span style="font-family: Arial;">She gets to go home on Thursday...13 days in the hospital, 4 days after surgery. </span><br />
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<span style="font-family: Arial;">One evening, as I sat on the edge of her bed...she tells me, "I saw grandma", "I felt her hand on my face, brushing the hair from my eyes"...like she used to do when I was little. "She cradled me in her arms". Tears spill down my face. I knew my mother would be there. She and Shana were so very close. There is a calm and peace about my daughter now. Something we've never experienced before. </span><br />
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<span style="font-family: Arial;"><em>Not long after my mother passed away, Shana had a dream about my mother. In the dream, my mother was mad. "damned VHL!"...my mother rarely cussed, if ever. She also told my daughter that "Everything is gonna be alright". We hold on to those words. I reminded Shana about her dream, just before she went into surgery. They give us all peace.</em></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-QmdRi_5p0ng/Tc8I2Sj_pgI/AAAAAAAAAEM/PIcpWl1uSQc/s1600/the+whole+fam1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="194" j8="true" src="http://4.bp.blogspot.com/-QmdRi_5p0ng/Tc8I2Sj_pgI/AAAAAAAAAEM/PIcpWl1uSQc/s320/the+whole+fam1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our family at the Mom's Day Run. Shana is in the wheel chair.</td></tr>
</tbody></table><br />
<span style="font-family: Arial;">We planned a Mom's Day Run in memory of my mother and in honor of Shana. Shana was determined to be there...and she was (13 days after surgery). We had a good turn out despite the the previous month <em>(I wasn't able to advertise as planned).</em> We raised $1,500 for VHL!!!</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-2bdIZPLahks/Tc8M2Ti2bEI/AAAAAAAAAEg/l2jMBGRb0rA/s1600/shana+in+wheel+chair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="267" j8="true" src="http://3.bp.blogspot.com/-2bdIZPLahks/Tc8M2Ti2bEI/AAAAAAAAAEg/l2jMBGRb0rA/s320/shana+in+wheel+chair.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Shana at the Mom's Day Run ~ VHL Sucks shirts</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-kJyseHGwd0s/Tc8JGwtQBGI/AAAAAAAAAEQ/vOwH1LtlPo8/s1600/The+Start.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" j8="true" src="http://3.bp.blogspot.com/-kJyseHGwd0s/Tc8JGwtQBGI/AAAAAAAAAEQ/vOwH1LtlPo8/s320/The+Start.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Start</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-fAUudd7lCGQ/Tc8JMrLbyaI/AAAAAAAAAEU/_6QQQiatAWs/s1600/VHL+SUCKS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" j8="true" src="http://1.bp.blogspot.com/-fAUudd7lCGQ/Tc8JMrLbyaI/AAAAAAAAAEU/_6QQQiatAWs/s320/VHL+SUCKS.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sister's tee-shirt</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-mdmcqOtGF_c/Tc8JaSVnDgI/AAAAAAAAAEY/m2R3-w11nc8/s1600/Remember+Mom+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="193" j8="true" src="http://4.bp.blogspot.com/-mdmcqOtGF_c/Tc8JaSVnDgI/AAAAAAAAAEY/m2R3-w11nc8/s320/Remember+Mom+1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A Moment with Mom</td></tr>
</tbody></table><br />
<span style="font-family: Arial, Helvetica, sans-serif;">The participants, mostly family and friends, sprinkled with a few strangers...were all so kind to come out on Mother's Day and run along the beach with us. Some spoke to my daughter, giving praise and commenting on her remarkable spirit. Hugs, words of inspiration and encouragement...it was a beautiful day.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">After the Run, we went to the sand (we had spread my mother's ashes at sea) and had a moment with my mom. We miss her so much...and know she is proud of us today. We will honor her memory every day...especially Mother's Day with the Mom's Day Run, raising money and awareness for VHL in her name!</span><br />
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<span style="font-family: Arial;"><strong>SIDE NOTE:</strong> <em>Up until this surgery, Shana's medical team has been watching five other brain tumors. Watching for any new development or change. After her surgery, they did a MRI...and to our amazement, there are no other tumors in her brain. I can't explain it... and I don't think I need to. </em></span><br />
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<span style="font-family: Arial;">Prayer works! </span><br />
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<span style="font-family: Arial;">We are so greatful, today! </span><br />
<span style="font-family: Arial;">We know that with VHL...you have to be "on guard"...because it's always lurking there...but today, we are "thankful"...we are "greatful" to have one more day.</span>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-60772404058215216072011-05-03T14:22:00.000-07:002011-05-03T14:22:05.841-07:00GREAT GRANDFATHER CONKLIN and his grandkids<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-d5b7W1yjsn8/TcBvfvHl8EI/AAAAAAAAAD0/2ElB1RcC_WE/s1600/Grandpa+Conklin+and+grandkids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="207" j8="true" src="http://1.bp.blogspot.com/-d5b7W1yjsn8/TcBvfvHl8EI/AAAAAAAAAD0/2ElB1RcC_WE/s320/Grandpa+Conklin+and+grandkids.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back Row: Aunt Val, Lauran Jr, Carol, Grandpa Conklin, James and Uncle Bill<br />
Front Row: Lee, Larry, Uncle Jeff and Mom<br />
Sitting; Alexis and Kay</td></tr>
</tbody></table><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Aunt Val sent me this photo yesterday and it got me to thinking...about all the family gatherings we used to have at Grandma's house. Easter, 4th of July, Thanksgiving and Christmas. All the cousins would be there. We'd play outside until Grandma would call us in to eat. Then we'd watch home movies on 8mm film. What a great time. I miss those days.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">This photo was taken in the early 1960's. My mom was in her early 20's...and I'm always in awe of her. She had lost her sight, she was so very young...and Shana looks so much like her. I love it!</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">My memories of Grandpa Conklin are few...I remember him being thin and tall...that might of been because I was so young. I remember him being warm and gentle and feeling loved. He used to tickle us, he had long fingers that seemed gnarled like branches of a tree...not in a scary way, in a wise old kinda way.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I remember he passed away when I was about 10 years old. About 1968. My mom asked if we wanted to go to the funeral and I didn't. I was afraid of funerals until I reached my 30's. I don't know why...I just was.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">A few days later, my mom said she had a visitor in the night. Grandpa! He stood at the edge of her bed and said "everything will be alright". She was blind at the time...but said she could see him clearly and in color! I always remembered that.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Later when my mother passed away, Shana had a dream...my mom was cussing (which she rarely did) about Damned VHL!...then she told Shana "everything will be alright". I reminded Shana of this right before her last surgery. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">A few days after Shana's last surgery she told me that, Grandma has been here. She felt her presence, her support, her love. She felt her arms around her and felt her laying next to her, lightly brushing her hair.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">I had been praying for my mom to be with her on this journey and to hold her hand along the way. I asked for her to cradle her in her arms and that we knew...everything would be alright. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">...and it was.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">I miss you mom!</span>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-50280456321264517822011-02-27T12:47:00.000-08:002011-02-27T12:47:41.237-08:00I love you!<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://2.bp.blogspot.com/-1O3tNeuj8W4/TWq3rWug4fI/AAAAAAAAADg/HzTNjUrXTMM/s1600/momphotobooth.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-1O3tNeuj8W4/TWq3rWug4fI/AAAAAAAAADg/HzTNjUrXTMM/s320/momphotobooth.jpg" width="277" /></a>I never said it enough.</div><br />
I used to think you were the prettiest mom of all my friends mothers. When I came to you for words of wisdom, you always had the right words to say.<br />
<br />
You were smart, funny and creative. I loved our moments during our 52 years together. Seems like a blink of an eye. It wasn't enough.<br />
<br />
I admired your strength. You inspired me. I loved you so much. I was so proud to be your daughter.<br />
<br />
Even though I didn't tell you enough...and I meant it everyday.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><br />
</div>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-24398017070973633582011-02-27T12:39:00.000-08:002011-03-10T13:59:25.188-08:00Memory BookI published a memory photo book of my mother. <br />
<br />
I was able to publish via Lulu.com. So family can purchase directly.<br />
<br />
<object width="440" height="330"><param name="movie" value="http://www.lulu.com/viewer/embed/EmbeddablePreviewer.swf?version=20110308123818"></param><param name="wmode" value="transparent"></param><param name="allowFullScreen" value="true"></param><param name="allowScriptAccess" value="always"></param><param name="flashvars" value="contentId=10196551&endpoint=http://www.lulu.com/author/previews/preview_endpoint.php"></param><embed src="http://www.lulu.com/viewer/embed/EmbeddablePreviewer.swf?version=20110308123818" flashvars="contentId=10196551&endpoint=http://www.lulu.com/author/previews/preview_endpoint.php" type="application/x-shockwave-flash" allowFullScreen="true" wmode="transparent" allowScriptAccess="always" width="440" height="330"></embed></object>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-34649026914231383422011-01-26T12:16:00.000-08:002011-01-26T12:16:33.428-08:00A Not So Happy HolidayI started to write in December...I couldn't. So I thought I'd wait till the first of the New Year...and...<br />
<br />
Sometimes, I start to type and the tears just flow...sometimes, I bawl. Trying to put my thoughts together during the holidays and then put them into words were very difficult.<br />
<br />
So, today, January 26th...I'll try again.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/_JjilP6stH4U/TUB-evOcItI/AAAAAAAAADU/tQ4SLJgpQBg/s1600/Mom+and+baby.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="295" s5="true" src="http://2.bp.blogspot.com/_JjilP6stH4U/TUB-evOcItI/AAAAAAAAADU/tQ4SLJgpQBg/s320/Mom+and+baby.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas at Aunt Val's with Tim's Daughter (I think) 2000?<br />
I love your smile.</td></tr>
</tbody></table><br />
The holidays were good and not so good. Good that we were all together...not so good because we were missing a very important member. My mom. It was very hard remembering that I just couldn't pick up the phone and ask you: "what do you put in the stuffing"? or, "I just found an ornament the kids made"...or, "remember Shana's first Christmas...she got tired of opening presents"? Those sound like tiny and simple little things...but the Holidays make everything bigger.<br />
<br />
I remembered early Christmas's when you and Dad would stay up all night putting Christmas together. You told me years later, that Santa brought Christmas to the house. He brought and decorated the tree, he brought all the gifts on Christmas Eve. When I got older, I realized what a job it must have been buying a tree, decorating it, wrapping all the gifts and putting things like; bicycles together all before we woke up. <br />
<br />
Those were great memories. Life was much more simple then. And I think we put much more effort into making those memories. At least you did. You'd make a beautiful Thanksgiving Dinner, complete with all the trimmings. I know I helped, a little. <br />
<br />
On Christmas morning we'd open our gifts and then go over to grandma's house to have dinner with all of our Aunts, Uncles and Cousins. We'd play outside until dinner time, then open our gifts, then watch old home movies. I remember Aunt Esther and Uncle Lauren coming down from up north, Uncle Rusty and Aunt Janet...cousin, Kay, Larry and Lee...Aunt Val, Uncle Jeff, Uncle Bill... Seems so long ago now.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/_JjilP6stH4U/TUB-mOSzlyI/AAAAAAAAADY/q1sCJ6hgbJk/s1600/mom+at+Christmas.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" s5="true" src="http://4.bp.blogspot.com/_JjilP6stH4U/TUB-mOSzlyI/AAAAAAAAADY/q1sCJ6hgbJk/s320/mom+at+Christmas.jpg" width="308" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas at Fritz's house 1982</td></tr>
</tbody></table> <br />
It's been 5 months. Feels like yesterday...we're all still so very sad and miss you so much. It's hard to imagine holidays without you, let alone experience holidays without you. It's just not right. <br />
<br />
Our family is fractured...and we'll never be the same.VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-84084692215751895862010-12-13T16:42:00.000-08:002011-05-03T14:08:33.034-07:00VHL IN OUR FAMILY TREE<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;"><span style="font-size: x-small;">VHL / FAMILY HISTORY (Highlighted = VHL Diagnosis)</span></span></b></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><br />
</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><br />
</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="color: black; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><span style="font-size: x-small;">William "Will" Eggert Sierks (10/13/1893-5/7/1944)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><i style="mso-bidi-font-style: normal;"><span style="color: black; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><span style="font-size: x-small;">VHL- no diagnosis but cause of death was Adrenal Carcinoma</span></span></span></i></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><br />
</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><u><span style="color: black; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><span style="font-size: x-small;">GRANDPA WILL’S BROTHER</span></span></span></u></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="color: black; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><span style="font-size: x-small;">Fred M. Sierks<span style="mso-spacerun: yes;"> </span>(-2/2/ 1916) <u></u></span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><i style="mso-bidi-font-style: normal;"><span style="color: black; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman";">VHL – no diagnosis but cause of death was exhaustion due to paralysis subsequent to syringomyelia (cyst in spinal cord), with cystitis a contributing factor</span></i><u><span style="color: black; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman";"></span></u></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><br />
</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><br />
</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;">Frederick William Sierks (3/17/1917-7/6/1958)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;">VHL – never diagnosed. Deceased. Blind, High Blood Pressure and Anxiety Attacks</span></span></span></i></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 1;"> </span><span style="background: yellow; mso-highlight: yellow;">William Roscoe Bovee (Sierks)</span> </span></b><span style="mso-bidi-font-family: Calibri;">(1/19/1938-2/16/1981)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 1;"> </span><i style="mso-bidi-font-style: normal;">VHL-<span style="mso-spacerun: yes;"> </span>Diagnosed in 1962 - Retinal Angioblastomas, Renal Cell Carcinoma (deceased)<b style="mso-bidi-font-weight: normal;"></b></i></span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 2;"> </span><span style="background: yellow; mso-highlight: yellow;">Amy Bovee</span></span></span></span></b></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 2;"> </span></span></b><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;">VHL – Diagnosed in 1980 – Retinal Angioblastomas, Endolymphatic Sac Tumors</span></i></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 3;"> </span><span style="background: yellow; mso-highlight: yellow;">Luke Jenson</span></span></span></span></b></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 3;"> </span></span></b><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;">VHL – Diagnosed in 1996 – Retinal Angioblastomas</span></i></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 1;"> </span></span></span></span></b></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt; text-indent: 0.5in;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="background: yellow; mso-bidi-font-family: Calibri; mso-highlight: yellow;">Marianne Bovee (Sierks)</span></b><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"> </span></b><span style="mso-bidi-font-family: Calibri;">(7/31/1939-8/2/2010)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt 0.5in;"><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;">VHL- Diagnosed in 1962 - Retinal Angioblastomas with full retinal detachment, Pheochromacytoma (never removed), Hemangioblastoma on the brain stem (died in surgery)<b style="mso-bidi-font-weight: normal;"></b></span></span></span></i></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 2;"> </span><span style="background: yellow; mso-highlight: yellow;">Suellen Ruth Garrison</span> </span></b><span style="mso-bidi-font-family: Calibri;">(5/10/1958-)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 2;"> </span><i style="mso-bidi-font-style: normal;">VHL- Diagnosed in 1993 - Retinal Angioblastomas, Scar Tissue in Lungs, Lesion on <span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><i style="mso-bidi-font-style: normal;">Kidney<b style="mso-bidi-font-weight: normal;"></b></i></span></span></i></span></span></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><i style="mso-bidi-font-style: normal;"><span style="font-size: x-small;"></span></i></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 3;"> </span><span style="background: yellow; mso-highlight: yellow;">Shandria Nicole Hicks</span> </span></b><span style="mso-bidi-font-family: Calibri;">(3/20/1975-)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt 1.5in;"><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;">VHL- Diagnosed in 1994 - Tumors in Cerrabellum (multiple surgeries 1994,1995,2000,2007, 2011), BP Shunt,<span style="mso-spacerun: yes;"> </span>cysts on Kidneys, cysts on Pancreas<b style="mso-bidi-font-weight: normal;"></b></span></span></span></i></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 4;"> </span><span style="background: yellow; mso-highlight: yellow;">Davonte Hicks-Parsha</span> </span></b><span style="mso-bidi-font-family: Calibri;">(4/10/1994-)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 4;"> </span><i style="mso-bidi-font-style: normal;">VHL- Diagnosed in 2006 - Pheochromacytoma (adrenalectomy 2007)<b style="mso-bidi-font-weight: normal;"></b></i></span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 3;"> </span></span></b><span style="mso-bidi-font-family: Calibri;">Kiedryn Dioneyse Hicks (2/7/1978-) NO VHL</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 3;"> </span></span></b><span style="mso-bidi-font-family: Calibri;">Rolando Juan Tolentino Jr (3/17/1983-) UNKNOWN</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 2;"> </span><span style="background: yellow; mso-highlight: yellow;">Steven Robert Garrison</span> </span></b><span style="mso-bidi-font-family: Calibri;">(10/14/1959-)</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 2;"> </span><i style="mso-bidi-font-style: normal;">VHL – Diagnosed in 1993 – Retinal Angioblastomas<b style="mso-bidi-font-weight: normal;"></b></i></span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><span style="mso-tab-count: 3;"> </span><span style="background: yellow; mso-highlight: yellow;">Adam Joseph Chenkus</span></span></span></span></b></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 3;"> </span></span></b><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;">VHL – Diagnosed in 1993 – Pheochromacytoma (adrenalectomy 1993)</span></i></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 3;"> </span></span></i><span style="mso-bidi-font-family: Calibri;">Victoria Michelle Garrison (8/29/1982-) UNKNOWN</span></span></span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0.5pt;"><span style="font-family: Calibri;"><span style="font-size: x-small;"><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri;"><span style="mso-tab-count: 2;"> </span></span></b><span style="mso-bidi-font-family: Calibri;">Robin Anne Garrison (7/18/1962-) UNKNOWN</span></span></span></div></div>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0tag:blogger.com,1999:blog-427896617090275175.post-13579145656929050102010-12-10T10:14:00.000-08:002010-12-10T10:17:23.968-08:00Old Pictures - Memories<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/_JjilP6stH4U/TQJsErzYLII/AAAAAAAAAC8/apSB_auMzsA/s1600/Aunt+Val%252C+Aunt+Char%252C+Grandma%252C+Mom%252C+me+and+Robin.jpg" imageanchor="1" style="clear: left; cssfloat: left; height: 261px; margin-bottom: 1em; margin-left: auto; margin-right: auto; width: 260px;"><img border="0" height="310" n4="true" src="http://1.bp.blogspot.com/_JjilP6stH4U/TQJsErzYLII/AAAAAAAAAC8/apSB_auMzsA/s320/Aunt+Val%252C+Aunt+Char%252C+Grandma%252C+Mom%252C+me+and+Robin.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This pic was taken in 1968. Aunt Val, Mom, Aunt Charlene, Grandma, me and Robin</td></tr>
</tbody></table><br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/_JjilP6stH4U/TQJs-Z1CAMI/AAAAAAAAADE/tbFLLPvQez8/s1600/mom+at+Christmas.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="259" n4="true" src="http://1.bp.blogspot.com/_JjilP6stH4U/TQJs-Z1CAMI/AAAAAAAAADE/tbFLLPvQez8/s320/mom+at+Christmas.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom at Christmas</td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/_JjilP6stH4U/TQJtTE2VHOI/AAAAAAAAADI/ItgVCW1CTt8/s1600/Mom+and+enid.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="123" n4="true" src="http://3.bp.blogspot.com/_JjilP6stH4U/TQJtTE2VHOI/AAAAAAAAADI/ItgVCW1CTt8/s320/Mom+and+enid.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom with Graduating Class of Guide Dogs of America. <br />
Mom is 3rd from Left with Enid (golden retriever)</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/_JjilP6stH4U/TQJttorYRgI/AAAAAAAAADM/kbnY1PNMOJk/s1600/Mom+and+Uncle+Bill.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" n4="true" src="http://2.bp.blogspot.com/_JjilP6stH4U/TQJttorYRgI/AAAAAAAAADM/kbnY1PNMOJk/s320/Mom+and+Uncle+Bill.jpg" width="253" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Bill and mom, 1940</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/_JjilP6stH4U/TQJsUO7pfVI/AAAAAAAAADA/db4_h_4E8Rk/s1600/Grandma+Ruth%252C+mom+and+me+1958+2.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="313" n4="true" src="http://4.bp.blogspot.com/_JjilP6stH4U/TQJsUO7pfVI/AAAAAAAAADA/db4_h_4E8Rk/s320/Grandma+Ruth%252C+mom+and+me+1958+2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This photo was taken in 1958. My Grandma Ruth, Mom and me<br />
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</tbody></table>VHLhttp://www.blogger.com/profile/04056604860564486148noreply@blogger.com0