Tuesday, January 3, 2017


I was honored in 2016 by the VHL Alliance.   I'm truly humbled...

Dr Bradley Straatsma (he diagnosed my mom in 1962)

My children

My son introducing me

My speech

Team VHL



a.   VHL ALLIANCE, Ilene, Susan and Heidi

b.   Family and friends

c.   Team VHL

                                                   i.     These ladies helped raise over $40,000 for the VHL ALLIANCE and will be running/walking at the Baltimore Marathon on October 15.

d.   Jeff.  THANK YOU. You didn’t sign up for any of this…I appreciate your never ending support, spending countless hours at doctor’s visits, surgeries and making breakfast burritos at 2am. You’re always there easing my mind when we wait for results and you never hesitate to jump on the Suellen train, to wherever it’s going.  I love you, more than you know.

2.   I am beyond tickled, humbled and feeling a bit unworthy of such an honor.  I’m grateful that you thought of me. But all I set out to do was celebrate my mom. 

3.   I never intended bringing the spotlight onto myself, I never sought accolades, I just wanted to leave my mom a legacy that she’d be proud of.

4.   I also never set out to be a fundraiser.

a.   Muhammed Ali said: Service to others is the rent we pay for our space here on earth.

b.   Being of service has been my mission for the last 6 years. That maybe, my small gesture could make a difference.  We have to find a cure.

c.   As I look out at all of your faces, I’m reminded that we all have a story…and yours isn’t much different than mine.

d.   My intent is to touch your hearts, motivate and hopefully inspire…

5.   VHL or von Hippel Lindau

a.   No one in my family had ever heard those words before 1962.

6.   In 1962: We would leave home in the morning and play all day and be back when the streetlights came on. John F. Kennedy was president, gas was .28 per gallon.  Those were days.

7.   She was almost 25 years old, 5’2” and barely 100 lbs.  She had auburn hair and green eyes, she was kind, generous, creative, smart and fearless and beautiful.  She never complained about the hand she was dealt.  She was our mom.

a.   It was July 1962, when she woke up without the vision in one eye.  I was 5 years old.  I understood what BLIND meant but everything else was lost on this 5 yr olds level of understanding.

b.   My dad tried to explain what was happening in our home and how our lives would change.

c.   But someone forgot to tell my mom…because on that same morning, I was told to jump in the car, mom is driving you to school.

d.   I did jump into the car.  I was standing on the floorboards in the back seat, straddling the hump of a 1940 something Buick, holding onto the front seat, just behind my mother’s right shoulder.  We pulled out of the driveway and I’m waiting for someone to remind my mother that she couldn’t see.  We drove up to the stop sign at the corner of Hamilton and Phillips.  We both looked both ways and BOOM.  She drove over the curb.  I thought we were all gonna die.  I remember this being very traumatic for me.  I refused to ever get into the car with her again.

e.   She laughed when telling this story…she said, I had one good eye.  But she didn’t drive for much longer.

f.     My mom would learn braille, walk with a white cane and cook.  She got a Guide Dog named Enid.  She took classes at Mt Sac, she rode the bus everywhere…she was so brave, she was amazing.  She was our Hero.

g.   My family wasn’t much different than your family in the 1960’s.  Except my mom was blind and she had this thing called VHL.

8.   VHL

a.   We’d never heard that word before. No one in our family had it.  At that time we were told it was just an eye disease and if you didn’t get it by the time we were in our 20’s, we wouldn’t get it.  GET IT?  An interesting choice of words.

b.   We had annual eye exams.

c.   My mother was adopted by her step father and didn’t know anything about her biological family.

d.   Many years later doing our family tree, I found that her father died at 41 years old of a massive heart attack, a few months after I was born.  Her grandfather had died from a stroke, her uncle was paralyzed.  Still, none of this had been connected to VHL.

9.   Uncle Bill

a.   My mother’s brother, my uncle Bill was diagnosed with Kidney Cancer in the early 1980’s.

b.   I don’t remember anyone saying it was related to VHL.

c.   This was the first Kidney Cancer in our family.

d.   My uncle passed away in 1981 at 41 years old.

10.                  My diagnosis

a.    In 1993 we had changed insurance at work.  I was going through the booklet, looking for a PCP and I saw Dr Bradley Straatsma.  He was the doctor that diagnosed my mom.  I had just been checked 6 months earlier but I made the appointment anyway.

b.   Dr Straatsma is a very kind, soft spoken doctor.  He is one of the founders of the Jules Stein Institute at UCLA, where we’ll be tomorrow.  He said he remembered my mom.

c.   It wasn’t long before a steady stream of doctors, interns, and residents came to look at my retinas.  I guess they don’t see too many VHL Patients.

d.   I was in a dark room.  They had taken photos and they were now up on the light wall.  Rows of yellow/orange globes with red lines that looked like lightning strikes and little clusters of blood vessels.

e.   The walk back to my office was a blur.  I didn’t cry, I wasn’t afraid or worried.  Honestly I was more concerned about the conversation I about to have with my mom.

f.     I set at my desk for a while before calling…  I’m a mom, I knew how I would feel, hearing this news.

g.   I heard her sigh…Tears streamed down my face.  I told her I was ok and that I would be ok.  I wanted to jump through the phone to comfort her.

h.   I was 35 years old.  Within a week, appointments were made for my brother and sister and our kids.

i.      My brother was diagnosed that day.  Dr Straatsma offered to treat him at no cost because he didn’t have health insurance.

j.      As parents, we hope to pass along certain familial traits…VHL is not one of them.

11.                    The following year, my sweet, beautiful Shana, just 19 years old had been having a series of headaches.  They’d give her a shot and send her home.  We weren’t alarmed, migraines ran in the family.  But this time…it was different, she was having trouble standing and her vision was blurred.

a.   CT Scans would show 4 cysts blocking the flow of fluid from flowing freely between the spine and brain.

b.   I tried so hard not to cry as my little girl spoke with the hospital clergy and we signed custody documents, giving me custody of her 2 small children. In case surgery didn’t go well.  This is a ritual we’d practiced again and again over the years.

c.   I remember kissing my daughter and telling her that I loved her and that everything was going to be ok.  I’d be waiting right here when she got back.  I stood in the middle of the hallway as they wheeled her away, not knowing if that was true.

d.   This was the first brain surgery in our family.

e.   The surgery went well…the neurosurgeon asked if Shana has been out of the country because the cysts looked like parasitic cysts.  I asked him if it was VHL?  He didn’t know.  A few days later Shana had another surgery to place a shunt.

f.     We had excellent insurance and I was allowed to stay with her.  She was there for 3 weeks. Later surgeries, different insurance, she’d stay 3 or 4 days.

g.   On the day we left the hospital, they changed her bandages and clumps of her long beautiful hair fell into her lap.  We cried.

h.   This was the first brain surgery in our family.

i.      Shana has had 7 brain surgeries and they are currently watching a new one along with a pheo and kidney cysts.

12.                  Shana’s son Davonte has had both adrenal glands removed due to pheo’s.  He was just 13 yrs old when an ER doctor said he had high blood pressure.  They told Shana to take him to his PCP but never mentioned it was urgent or an emergency.  Three weeks later, his BP was 187/110 and he was taken to Children’s Hospital in Orange County.  They were planning on surgery right away…I contacted the VHL Alliance because I read in the newsletter that you have to be blocked before doing surgery on a patient with a Pheo…they put me in touch with Dr. Michael Yeh (who you’ll meet tomorrow) and he conferred with the doctors at CHOC.  The surgery went well.  Davonte’s last surgery was this past May.  He is learning how to manage without adrenals and a lifetime of steroids. 

a.   BTW: Dr Yeh is part of the VHL Clinical Care Center at UCLA.  He is an amazing gifted surgeon.

b.   This is the first Pheo in our family

13.                  We always believed that VHL was an eye disease.  We didn’t know there were brain and spinal tumors, pheos, kidney cancer or pancreatic cancer.

a.   The VHL Allance has always been there to help us navigate our way through the maze of diagnosis.  They not only help fund cancer research, they provide patients with information and resources.  A lot of us have to advocate for ourselves and family members.  We must educate our health care providers…The VHL Alliance gives us tools to help us.

b.   In our family, most of us were diagnosed through eye exams.

c.   My son Roland, who you met a few moments ago, was newly wed and expecting their first child and decided to have a DNA test to be sure.  He didn’t have any symptoms and had had regular eye check ups.

d.   When the results came in….he had everything VHL had to offer. Retinas, brain, spine, adrenal glands, kidneys and pancreas.

e.   When he should have been enjoying being newly wed and expecting a little boy.  He was scheduling surgeries.

f.     Eyes were lazered, followed by a bilateral adrenalectomy, then a whipple (he was in the hospital for 23 days), he had two surgeries  to remove kidney tumors… (I posted his experience day by day on my block: http://vhlmymomandme.blogspot.com/mymomandme)

g.   He is currently managing without adrenal glands.  Not to mention taking vitamins and minerals to offset a missing pancreas, staying away from kids with the sniffles, managing everyday stresses, medicine interactions and heaven forbid a crisis.

h.   This is the first Whipple in our family

i.      BTW, Thank you Susan for being my GO TO PERSON for Adrenal issues.

j.      Roland’s son not quite 2 years old was diagnosed with VHL.

14.                  My entire family has been affected by this dreadful disease.  I’ve talked about my kids and grandkids but I have many cousins with VHL.

15.                   I am not defined by VHL.  It’s something I think about everyday but I would never talk about it.  That changed in 2010.  That’s when I started to tell my story.  I’ve learned that every one of us has a story.

a.   My mother had always wished that she could do more than her $25 annual donation.

b.   She was 71 years old. She was courageous, larger than her 5 foot frame, her hair is grey now and so are her eyes…from the cataracts. She isn’t but 5 feet tall and probably weighs just a bit over 100 lbs.  She never complained.

16.                  In a hospital room at Arrowhead Community Hospital we all stood around her bed.  She was sedated and tied down.  The nurse said she was pulling at her IV.  I don’t think that was true…her fingers were her eyes.

a.   I kissed my mom and told her that I loved her…I told her that I would be right here when she got back.

b.   As she was wheeled out of the room, I asked the doctor “what about the pheo?”.  He said not to worry the anesthesiologist would be taking care of her.

c.   Later I thought to myself, what was the anesthesiologist gonna do?

d.   We were sent to the surgical waiting room. The surgery was to take 5 hours.  At the 5 hour mark, I saw a nurse running down the hall.  I got a lump in my throat.  He disappeared for a moment and then came into the waiting room.  We all stood anxiously waiting to be told that we could see her in recovery.  Instead he says that my mother lost a lot of blood and they were performing life saving measures.  I think he was asking if they should continue….

e.   Shana had gone to find her sister.  We were still standing in the middle of the room.  I could see Shana on her knees, praying in front of the elevator, I could see the doctor walking toward us.  How was she?  He was speaking but I couldn’t comprehend the words.  My daughters were now in the room and everyone was crying… I told her I was going to wait right here until she came back.  She never came back.

f.     We suffered a great loss that evening.  She was our rock, she was the glue…I’ve never hurt like that before.  I miss her every day.

g.   My mom always wanted to do more, to give more. She said it was our duty, our obligation to do what we could.

h.   My intent here isn’t to make you sad…I’m hoping our story motivates you to help us find a cure.

17.                  On Mother’s Day 2011 we coordinated the first Mom’s Day Run to honor my mother, to pay tribute to a woman who was so kind and generous, to leave her a legacy.  We had no experience putting on an event like this…but we’d run many races and knew what we liked and didn’t like about some of those big races.  So we took the best parts and put on a little home grown 5 and 10k.

a.   48 friends and family came out, my husband and I were up at 2am making homemade breakfast burritos for the participants.  We raised $1500.

b.   This was our first organized fundraiser.

18.                  I was just a daughter grieving for her mother and wanting to leave her a legacy. And I hope that someday we find a cure.

a.   Now, I tell anyone who will listen, about VHL.  We put on several fundraising events throughout the year.  2 fun runs, yard sales and pancake breakfasts.  My staff includes my husband, my 7 children, a couple grands and the Team VHL ladies.

b.   My mother said: its’ our duty to be good stewards within our community.  Raising awareness is one simple way.

c.   It’s important to do what we can.  To find a cure.  So that our children and children’s children won’t have to worry about MRI’s, CT Scans, PET Scans, tumors and surgeries. 

d.   Honestly, a cure today probably won’t help me or my children…but, It might help my grandchildren and yours…and future generations.

e.   We are all VHL Warriors: if you’re a patient, you are a warrior, if you are caregiver, you are a warrior, if you know someone with VHL, you are a warrior, if you raise money for VHL, you are a warrior. YOU ARE A WARRIOR.

f.     I’d like to present a challenge, to make a difference. Between now and the next Family Meeting, I’d like each of you to make one little step towards finding a cure.  This can be a small thing or an enormous thing. Each and every one of you can make a difference.  Even if it’s in the smallest of ways:  Wear your VHL Warrior shirts and folks will ask what is VHL? 

g.   Fundraise! No amount raised is too small.  Have a yard sale or car wash, a bake sale, a 5k…or poker or golf tournament.  A research grant might be just $200 short…you’d make a difference!

19.                   My family has a saying…whenever one of us is waiting for results, we say: we’re not going to worry until we have something to worry about.  We try our best to stay positive and hope for the best, and I think that helps. And if we get a bad result, we pull ourselves up by our bootstraps, rally the troops and deal with it as it comes.  We are VHL WARRIORS. And we will NEVER GIVE UP.

This Sunday, is an opportunity to Raise Money and Awareness.

Please join us at the Team VHL 5K fun run/walk on Sunday. 

Registration is $25 and you’ll get a VHL Warrior Shirt.

I’d love nothing more than to see a sea of VHL WARRIOR shirts walking down the WOOD CHIP TRAIL.   

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