Wednesday, May 15, 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...



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.


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.

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 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.

May 15, 2013

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, $ 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....

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.


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

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