VHL Sucks

LASER SURGERY

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. 

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.

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.  Probably just old age.


LOSING WEIGHT

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,(http://homemadeharvey.com/) 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?  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.  I ran 65 miles last week.  (Imagine Forrest Gump) 

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.  They did find cysts on my pancreas and kidneys.  I'm a bit concerned at the borderline diabetic comment on my latest labs.  We will see.


MOM'S DAY RUN

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 

MOM'S DAY RUN FACEBOOK PAGE HERE: https://www.facebook.com/MomsDayRun


HATFIELDS AND MCCOY'S MARATHON

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? (http://www.vhl.org/wordpress/?s=hatfields+and+mccoys)  Check out the marathon here: (http://p9.hostingprod.com/@hatfieldmccoymarathon.com/index.html)   We will be raising money for The VHL Alliance.  Whoohoo!


*Hemangioblastomas (capilliary hemangioblastomas) are tumors of the central nervous system that originate from the vascular system usually during middle-age. Sometimes these tumors occur in other sites such as the spinal cord and retina. They may be associated with other diseases such as polycythemia (increased blood cell count), pancreatic cysts and Von Hippel-Lindau syndrome (VHL syndrome). Hemangioblastomas are most commonly composed of stromal cells in small blood vessels and usually occur in the cerebellum, brain stem or spinal cord. They are classed as grade one tumors under the World Health Organisation's classification system.

Mom's Day Run 2014

Mom's Day Run                                What are you doing for Mother's Day? Join us for a walk, run, skip or stroll along the beach and raise money and awareness for cancer research.    Sunday, May 11th at 8am San Buenaventura Beach 901 San Pedro St. Ventura, CA On the Bike Path

We'd like to invite you to join us for the 4th Annual Mom's Day Run at the beach in Ventura for a run, walk, skip or stroll along the beach to celebrate Mother's Day.    Sunday, May 11th at 8am San Buenaventura Beach 901 San Pedro St. Ventura, CA On the Bike Path.    REGISTRATION IS $25 thru April 10th, then $30 thru May 10th. Race Day Registration is $35.    We will have our famous Breakfast Burritos for the participants and other goodies at the finish line.    100% of the registration fee will go to our two favorite charities: The VHL Alliance and The Leukemia & Lymphoma Society to fund cancer research and provide patient services.    This year we have shirts for sale.  Pink for the ladies and grey for the guys.  100% of the proceeds will go to The VHL Alliance.    ORDER SHIRTS HERE: https://www.booster.com/momsdayrun REGISTER HERE:  www.tinyurl.com/MomsDayRun-Registration14 OUR FACEBOOK PAGE: https://www.facebook.com/MomsDayRun Please LIKE our page and stay up to date on the latest and greatest information.    Looking forward to see you there, Bring a friend!   Hug your Mom!

MOM'S DAY RUN - 2013

 

Come join us for the 

3rd Annual Mom's Day Run!

To benefit VHL and The Leukemia & Lymphoma Society

This is a No Frills run, there are no timing chips, no finish line hooplah, no goody bags or medals.

Just friends and family...together remembering my mom.

We are raising money and awareness for VHL & LLS! Please join my family and friends, and honor my mother (who passed away on August 2, 2010 from complications of VHL) by joining us for a walk/run along the beach on Mother's Day.

SPECIAL TREATS:
2 Time Winner of Food Networks Cupcake Wars will be supplying cupcakes to the Moms!!!

www.suite106cupcakery.com

TACO MAN
Breakfast Burritos are Back!!!  TacoMan will provide breakfast burritos to all theparticpants!

IE DIVAS
Chocolate Covered Strawberries for all of the Mom's!

This year we are working in cooperation with The Leukemia & Lymphoma Society, Team in Training to help raise additional funds for Blood Cancer Research.

All monies raised will be split 50/50 between the two co-charities.

Bring your mom, invite your friends!!!

2012 UPDATE: Shana is doing well and is planning on joining us on May 13th. Thank you for all of your well wishes.

2011 UPDATE: Shana just had surgery to remove a brain tumor and a cyst caused by VHL, on Monday, April 25, 2011.  She is determined to be at this event to honor her grandmother.  Please join us...and if you can't, please donate to this cause, that is so dear to our hearts.

IF YOU CAN'T ATTEND, PLEASE DONATE:
You can donate by clicking a button in the registration section for this run.
Click VHL or LLS (for The Leukemia & Lymphoma Society)

REGISTRATION:
$25 ~ 50% of the registration fee will go VHL Research! 50% will go to LLS for Blood Cancer Research

Register here:  http://www.active.com/running/ventura-ca/moms-day-run---2013

DETAILS:

Where:  San Buena Ventura Beach bike path
            911 San Pedro St.
            Ventura, CA 9 93001

When:   Sunday, May 12, 2013 at 8am

Distance: 5K or a 10K, you can run, you can walk, you can skip
              along the beach...this is a fun run.

Directions:  101 FWY North to Seaward exit.
                 Exit FWY turning left, then turn right onto Harbor Blvd.
                 Drive North to San Pedro St. and turn left. 
                 *You can either park on the street or in the parking lot.
                 The park charges $10 per car (carpool if you can).

CONTACT:
MomsDayRun@yahoo.com

FAMILY HOTEL DISCOUNTS AVAILABLE!!  Email me!

VHL is a genetic disorder that causes tumor growth and sometimes cancer.
More information about VHL: www.vhl.org/

What is VHL Video:  http://youtu.be/RD3V49-8aBs

LLS through Team in Training raises money and awareness for Blood Cancer Research.  The Team in Training Crew will be here to answer your questions or register you for upcoming Fall Season Events.  http://www.lls.org/    http://www.teamintraining.org/

• Stay Tuned for upcoming events

Stop by the Purple Tent and say Hi!

MOM'S DAY RUN 5/10K ~ VENTURA, CA

THANK YOU, THANK YOU, THANK YOU!!! 

We surpassed all expectations...and can not begin to describe how greatful we are.  $1,500 was raised for VHL.  We had 48 Participants...the weather was perfect for running, low 60's.  We had breakfast burritos, strawberries and doughnut holes....and lots of fun.

I want to thank the following, without their help, this event would not have been possible:

TRI RUNNING

2233 Ventura Blvd, Camarillo, CA 93010   (805) 973-7861

FOUR SEASONS DOUGHNUTS / CAMARILLO, CA

And a special "Thank You" to our participants who raised $1,500 for VHL Research!!!

The Run

 

Our Family

Remembering Mom

MOM'S DAY RUN 5/10k

Come join us for the 1st Annual Mom's Day Run!


This is an un-official run, there are no timing chips, no finish line hooplah, no goody bags or medals.


Just friends and family...together remembering my mom.


We are raising money and awareness for VHL and hopefully next year we can have all of the above. But for now, my family and friends will honor my mother (who passed away on August 2, 2010 from complications of VHL) by joining me for a walk/run along the beach on Mother's Day.


Bring your mom, invite your friends!


UPDATE: Shana just had surgery to remove a brain tumor and a cyst caused by VHL, on Monday, April 25, 2011.  She is determined to be at this event to honor her grandmother.  Please join us...and if you can't, please donate to this cause, that is so dear to our hearts.


IF YOU CAN'T ATTEND, PLEASE DONATE:
http://www.firstgiving.com/fundraiser/MomDayRun/in-memory-of-marianne-and-in-honor-of-shana


REGISTRATION:
$25 ~ 100% of the registration fee will go VHL Research!
https://www.active.com/event_detail.cfm?event_id=1946454


DETAILS:

Where:  San Buena Ventura Beach bike path
            911 San Pedro St.
            Ventura, CA 9 93001


When:   Sunday, May 8, 2011 at 8am


Distance: 5K or a 10K, you can run, you can walk, you can skip
              along the beach...this is a fun run.


Directions:  101 FWY North to Seaward exit.
                 Exit FWY turning left, then turn right onto Harbor Blvd.
                 Drive North to San Pedro St. and turn left. 
                 *You can either park on the street or in the parking lot.
                 The park charges $10 per car (carpool if you can).


CONTACT:
MomsDayRun@yahoo.com


FAMILY HOTEL DISCOUNTS AVAILABLE!!  Email me!


VHL is a genetic disorder that causes tumor growth and sometimes cancer.
More information about VHL: http://www.vhl.org/