Wednesday, December 28, 2016

END OF THE YEAR, DONATE IF YOU CAN



END OF THE YEAR....donate if you can.



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.

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.
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."

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.
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.
 

My entire family has been affected by this dreadful disease including my kids and grandkids, as well as many of my cousins. 
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.
 
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. 
 

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.

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!
Suellen xoxo
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Monday, December 5, 2016

TEAM VHL AT THE BALTIMORE MARATHON



TEAM VHL AT THE BALTIMORE MARATHON

Team VHL raised $48,983 for The VHL Alliance
We ran the half and the full and the BaltiMoron, we all had a great time.
Next year...The Extraterrestrial Marathon out near Area 51 in Nevada.

INTERVIEW ON BALTIMORE TV - Wait for it...
http://www.wbaltv.com/article/vhl-warriors-support-cause-at-baltimore-marathon/6964737


TEAM VHL GOODIE BAGS

AND OFF WE GO


TEAM VHL


TEAM VHL IN THE NEWS

TEAM VHL RACE SHIRTS

VHL FAMILY WEEKEND 2016

My son Roland, introducing me
My Speech
Me and Dr Bradley Straatsma
My kids

Team VHL
Team VHL 5k at the VHL Family Weekend.
VHL FAMILY WEEKEND 2016

I was honored to be honored at this year's VHL Family Weekend.  
I was so grateful to share this event with my family and friends.

Here are some of the highlights:

VHL SLIDE SHOW
https://www.facebook.com/1044101982/videos/10208653258702589/

SUELLEN'S SPEECH
PART ONE

PART TWO

VHL CONFERENCE - EMILY B singing BRAVE
https://www.facebook.com/hi.its.suellen/videos/10209703038285392/

Sunday, September 11, 2016

Busier then ever...

Team VHL 2016


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.

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.

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.

Then we have The VHL FAMILY WEEKEND.

And 18 incredible ladies are running The Baltimore Marathon!

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.

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...

My Family after The MOM'S DAY RUN 



Friday, February 26, 2016

KIDNEY TUMORS are Almost Always Cancer

I HATE VHL!


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.

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...

Nothing else came up relating to VHL until my Uncle Bill was diagnosed with Renal Cell Carcinoma...from VHL.  We lost him in 1981.

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???

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.

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. 

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.

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...

What do you have if you do not have HOPE? 

VHL SUCKS