WHAT 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...

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.

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?

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.

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.

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. 

Then appointments were made for my sister, brother, daughters and son.

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.

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.

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.

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. 

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.

Yesterday, this is what I received in the mail:
Radiologist recommends CT Scan of the pancreas.
Here is the Radiologists findings:
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.

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.

IMPRESSION:
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.

2. A few bilateral renal cysts measuring up to 8mm on the right and 7mm on the left.  No suspicious renal lesion is identified.

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.

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. 

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?!?  

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...

Not going to worry about this until I'm told I have something to worry about.  ...Breathe...

I'm going for a run...somehow, running makes everything alright with me.  Run, Breathe....I'm good.

Someday, we will find a cure and I hope I get to witness that...Run, Breathe...I'm good.

OUR FAMILY VHL HISTORY

VHL / FAMILY HISTORY (Highlighted = VHL Diagnosis)  

 

William "Will" Eggert Sierks (10/13/1893-5/7/1944)

VHL- no diagnosis but cause of death was Adrenal Carcinoma 

GRANDPA WILL’S BROTHER   Fred M. Sierks  (-2/2/ 1916)

VHL – no diagnosis but cause of death was exhaustion due to paralysis subsequent to syringomyelia (cyst in spinal cord), with cystitis a contributing factor  

Frederick William Sierks (3/17/1917-7/6/1958)

VHL – never diagnosed. Deceased. Blind, High Blood Pressure and Anxiety Attacks               

William Roscoe Bovee (Sierks) (1/19/1938-2/16/1981)               

  VHL-  Diagnosed in 1962 - Retinal Angioblastomas, Renal Cell Carcinoma (deceased)                               

Amy Bovee                               

VHL – Diagnosed in 1980 – Retinal Angioblastomas, Endolymphatic Sac Tumors                                               

Luke Jenson                                               

VHL – Diagnosed in 1996 – Retinal Angioblastomas               

  Marianne Bovee (Sierks) (7/31/1939-8/2/2010)

VHL- Diagnosed in 1962 - Retinal Angioblastomas with full retinal detachment, Pheochromacytoma (never removed), Hemangioblastoma on the brain stem (died in surgery)   (deceased)                                                           

Suellen Ruth Garrison (5/10/1958-)                               

VHL- Diagnosed in 1993 - Retinal Angioblastomas, Scar Tissue in Lungs, 3 cysts on Kidneys, cysts on pancreas, (duplicated vena cava???)                                         

Shandria Nicole Hicks (3/20/1975-)

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                                                               

Davonte Hicks-Parsha (4/10/1994-)                                                               

VHL- Diagnosed in 2006 - Pheochromacytoma (adrenalectomy 2007)                                               

Kiedryn Dioneyse Hicks (2/7/1978-) NO VHL                                               

Rolando Juan Tolentino Jr (3/17/1983-) UNKNOWN                               

Steven Robert Garrison (10/14/1959-)      

VHL – Diagnosed in 1993 – Retinal Angioblastomas                                               

Adam Joseph Chenkus    (9/21/1981)                                   

VHL – Diagnosed in 1993 – Pheochromacytoma (adrenalectomy 1993)                                               

Victoria Michelle Garrison (8/29/1982-) UNKNOWN                               

Robin Anne Garrison (7/18/1962-3/21/12) (deceased)   UNKNOWN

CHALLENGES

We 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.

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.

I have so many regrets, so many things I wished I had said or done.  I pray they knew how much I loved them.

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.

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.

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.

I never imagined anyone in my family would have a memorial like this one.



Neysi having a moment.

Dylan's Palm Tree

 

MOTHER'S DAY

MOM'S DAY RUN 2013

May 16, 2013 by Suellen Lindquist

Mom's DAY RUN 2013

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.

So after she passed away, I made a promise that I would do this.

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.

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.

I kept a promise...

ROBIN

May 16, 2013 by Suellen Lindquist

My sister Robin with my mom and me.

We lost my sister to a tragic accident on March 21, 2013

You never ever imagine getting "that call", that someone you love has been killed

in a horrible accident.

My sister was walking down the street and was hit by a car that lost control.

An awful accident.

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.

HERE IS THE SPEECH I READ AT HER MEMORIAL

ROBIN ANNE GARRISON

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…

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.

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.

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.

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.

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.

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.

Robin was Queen of the Mountain.

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:

• Endearing
• Funny
• Loving
• Scrappy
• Fiesty
• Smart
• Creative
• Stubborn
• Sweet
• Loyal
• Boisterous
• Cowabunga
• Fun
• Awesome
• Fearless

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.

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.

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.

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...

I wish I had spent more time with my sister. I wish I had done a better job at being a big sister.

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.

Robin was loved, she was cared about and she had a family who will miss her so much.

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.

0 Comment

My Mom

May 16, 2013 by Suellen Lindquist

My mom was my hero. She lost her sight at the age of 25, she had 3 small children.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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".

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.

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.

Please give what you can...every little bit helps.

Thank you xoxo

SIDE NOTE: 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.

0 Comment

SUELLEN'S FUNDRAISING PAGE

May 15, 2013

KEEPING MY WORD

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.

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.

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).

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.

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!

Thanks in advance for your love and support.

<3 4 Mom

xoxo, Suellen

__________________________________________________

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....

MAN IN THE ARENA

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.

QUOTES ABOUT GIVING

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

Nobody made a greater mistake than he who did nothing because he could only do a little. ~Edmund Burke

Nobody can do everything, but everyone can do something. ~Author Unknown

Hello, It's Me - February 3, 2013

Mom and Uncle Bill

February 3, 2013

It's been a while since I've posted...and so much has happened.

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.

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.

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.

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. 

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.

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.

REGISTRATION INFO FOR MDR: http://www.active.com/running/ventura-ca/moms-day-run---2013

PHOTOS FROM MDR 2012: http://www.facebook.com/#!/events/359846527371706/.

MOM'S DAY RUN FACEBOOK PAGE: http://www.facebook.com/#!/events/359846527371706/?fref=ts

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.

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!!!


Gotta Run,
Suellen

Marianne's Family