Shop for a Cause!

I've been neglecting my fundraising duties...and I feel horrible about that!

We didn't plan a pancake breakfast this past May because we thought Steven would be having brain surgery...good reason...but still I felt a bit very bad. I thought we could do a breakfast in December, when he is home, but now I've decided, in light of my recent health issues, to skip that also. Again...good reason...but I feel a bit very bad that we aren't helping fund the cure.

Imagine my pure delight when I realized that we can still work together to find a cure for my sweet son.

This coming Saturday (August 27) you can "Shop for a Cure" at Macy's! All that you need to do is contact me, or the VHLFA, for a "saving/shopping pass" (purchased for a mere $5), and then you shop!

And save 25% all day long!
On regular, sale and clearance items!
Oh the joy!

The best part...100% of your $5 saving/shopping pass will benefit our mission!

The Facts, and More!

The Facts


We're planning our third pancake breakfast fundraiser to cure von Hippel Lindau disease.

Saturday, May 22nd, 2010.

Cure Steven
Cure VHL
Cure Kidney Cancer


More!

I always hesitate with fundraising for the cure for this disease. As passionate as I feel about this,
various and sundry thoughts keep me from committing until the last moment.

But it needs to be done...that's a fact.



More Facts

In six months, a year or maybe two, this rocky economic time will be at the back of everyone's mind as a very bad period of their financial lives.

In six months, a year and definitely two, my sweet boy will still have a life-threatening disease that causes cancer and more.

And at that period of time when everyone has recovered their funds and all are looking toward a brighter future, we will still need a cure for von Hippel Lindau disease.


Please join us for pancakes
Please celebrate a cure with us.

More info to come!

The Words

To describe our amazing breakfast!

Empowering!

It's so important for Steven to know

Amazing!

that we will help him every step of this journey.

Wonderful!

And when we need it, that help can come from friends

Inspiring!

who care enough eat breakfast with us!

Pictures

Words to follow...
a warm bubble bath,
an application of moisturizer,

a dose of extra-strength ibuprofen
a good book,
and a long nights sleep!

Just a Thought

A fleeting but worthy thought danced through my busy mind this evening as I was
stacking and organizing,
folding and lining,
spiffing and buffing
at the fellowship hall.

What if everyone who watched the video for 4000+ hits also donated a dollar to our firstgiving account on the sidebar?

Wouldn't that be wonderful?

Bits and Pieces

Housekeeping

1. A winner for the YouTube contest has not yet been announced...as far as I know!
Keep watching Steven!

2. If you live far away, please eat vicariously Saturday morning and consider giving a donation by using the "firstgiving" button on the side of the blog.

3. If you live locally and haven't yet bought tickets...

4. T-shirts are here!

All the "flippers" and "servers" can now be duly attired on Saturday morning!

5. This week while I am finishing preparations for the breakfast, I will also be planning and celebrating a Mother's Day Tea with my class, cooking dinner three out of five nights, watching David play in the regional high school baseball tournement, laundering ten loads of dirt and grime, working, and beginning preparations for year-end conferences and festivities.

I hope I don't forget to buy groceries!

Have I mentioned that I'm a bit frazzled at times?

6. Steven scanned abdominally today. He drank his gazillion mL of contrast successfully and tolerated the scan like a pro.

I'm not sure when or how we'll get results.

Hope

If you flip over 600 pancakes,

scramble 100 cups of eggs,

brown 400 sausages,

and brew 200 cups of coffee,

can you make

a miracle?

I Need Help!

Help!

I had a horrible dream last night...the sort of dream where I was an hour late to my own fundraiser!

I've talked to my therapist about this,
(and if you know me...then you know I'm my own therapist...and therapy typically happens when I'm driving in my car...when the booming silence gives me the space to think)
and my therapist told me that I need help!

Literally!

*I desperately want to pre-sell tickets to this event. While I believe that we have an amazing resource for purchasing the food, I'm very conscious of the money being spent. I want to plan well and waste nothing.

*I need to start the hunt again for inexpensive t-shirts. ("Cheap" being the key word in that sentence.)

*I also need to start the hunt for a clown/balloon connoisseur because, though the last man did indeed live up to his own inflated reputation, I've lost my contact name/number!

*And I desparately NEED raffle items. It's been frustrating, the lack of general enthusiasm from local businesses, and that's all I'll say!

And I think I will use a slightly creative way of giving back to the many who care. I believe that our sweet gifts will be raffled to all who pre-buy a ticket!
(But if you truly prefer selling those little $1 tickets...let me know and we can work both ways!)

*I may need a little help thinking that through and planning accordingly!

*I need to plan for out-of-town family and friends. I would love for all to be able to be part of the breakfast festivities. Realistically, however, I also need a way for all to be able to donate to the cure if travelling is not an option.

"Pancakes". version 2007...my inspiration!

Help!

We need more hits on YouTube!!!
I'm panicking for my sweet boy!!!

So, please, go to "YouTube", put "VHL Family Alliance" in the searchbox.
After the search completes, look for the video with a picture of Steven standing with a soccer ball.
Click on that video and watch it completely until the end!
Repeat once a day!

And please feel free to share this video with family and friends!

Help!

Thank you for caring so much about my sweet boy!

The Facts, and More!

The Facts

We're having our second pancake breakfast.

May 9th, 2009

First United Methodist Church
(Fellowship Hall)
Seffner, Florida

8 a.m. - 11 a.m.

Cure Steven
Cure VHL
Cure Kidney Cancer

More!

I've been hesitant with fundraising. I could begin with "A" and end at "Z" with all the varied reasons for my hesitation.

But I refust to bore you with all 26 synonyms for "worry".



More Facts

In six months, a year or maybe two, this recession will be at the back of everyone's mind as a very bad period of their financial lives.

In six months, a year and definitely two, my sweet boy will still have a life-threatening disease that causes cancer and more.

And at that period of time when everyone has recovered their funds and all are looking toward a brighter future, we will still need a cure for von Hippel Lindau disease.

It's true.

Hot Off the Presses

May is VHL month.

We'll be holding another fundraiser of some sort.

May 9th.

More details to follow.

And my sweet boy was turned down for insurance again today...life insurance this time.

Several months ago Dale began speaking to our insurance agent about different ways to reduce insurance rates for a very new male driver who did not qualify for the good-student discount. The insurance agent mentioned that if we purchased life insurance policies for Steven and David, we would received a substantial break in our car insurance premiums. Dale, it seems, neglected to divulge the whole story of Steven.

David now has a license, and today I had the pleasure of securing those better insurance rates! I called our insurance agent to schedule David's driving class and make plans for life insurance for both boys. After a long and convoluted conversation involving many questions from the agent and many honest answers from me that touched on the topics of the gene, the tumors, the surgeries and the lack of medication to keep the disease at bay, the very helpful insurance agent, herself a long-term survivor of Hodgkins lymphoma, said, "Oh my goodness, there has to be a cure."

And then she asked how Steven handles all of this news, and I got teary.
Just a little.
On the phone with our insurance agent!
Oh my!

Fundraising..."there has to be a cure."

Today We Dined with Friends

Dinner Style!



This evening we had dinner at the greatest restaurant in town! We were greeted by the sweetest owner/manager, a hero of ours really, entertained by the friendliest waitresses ever, and served the hottest wings available!





We really had the best time imaginable.











The only things missing were the pancakes!











And the plethora of animals that we brought home are simply a testament to my children's love for the game.

These kids are not greedy little ogres...really, they're not.

Thanks

Again!

This past Friday our family had the pleasure of eating a very special lunch with my mom and her fellow co-workers at Kindred Hospital of St. Petersburg. The lunch, already very special because we ate with Nana, was even more spectacular as it was accompanied by the presentation of a donation to the VHL Family Alliance.

Wow!

The wonderful employees of this hospital have been doing various fundraising activities through out the year to raise money for a chosen charity. This year the money raised was given to the VHL Family Alliance for the purposes of medical research, and this means more to us than anyone could ever know.

"Thanks" really doesn't seem to express our gratitude.

But we are so, so thankful...thankful beyond words.

Fundraising

Here's a quick and easy way to raise some money for von Hippel Lindau disease. When you need to do an internet search, do it from here. Put the VHL Family Alliance as your charity.

Save the Goodsearch page under favorites.

Use it every time you need to search on the internet.

Every time!

Raise money!

Each search will raise $0.01 for VHL Family Alliance (image and video searches are not included). The more people use GoodSearch, the more money will be directed towards VHL Family Alliance. The sky is the limit!

Thanks Aunt Jan!
Thanks Marty!

Such Is My Life

Since 2005

Apologies to all who might have been driving south on Parsons Ave between Wheeler and Windhorst this morning and witnessed a crazy middle-aged woman driving a white mini-van erratically.

That was me.

I had to frantically change lanes and charge after a truck that was adorned with signs of "The Charity Supplier". The sign had a phone number and website for this organization, and I desperately was trying to keep within eyesight of the truck so I could copy the site address onto a scrap of paper while also trying to keep the van on the correct side of the road.

This sort of information is important to me now.

Unfortunately this association doesn't seem to offer supplies that will help with future fundraising activities.

Such is my life!

Words

To describe our amazing day

Wonderful

At the end of the day, it wasn't the numbers that mattered the most.

Inspiring

The best part of this day was having Steven take back a bit of the control that this disease tries to rob from him. The best part of the day was seeing all of the sweet people who are helping him do this.

Touching

Bottom line, Steven knows that he is doing all that he can to find a cure.

Empowering

Bottom line, he knows that he is very loved.

Amazing!

(And the numbers were pretty good too! And, of course, we're very, very thankful for all of the donations and money raised through pancakes!)

Our Amazing Day

In Pictures

Thank You!

Thank you, thank you, thank you!

Thank you, thank you, thank you!

Details and pictures to follow
a nap...
a shower...
dinner...
a load of sweaty laundry...
and a movie with my family!

Details and pictures to follow!

And if my little girl starts exclaiming to you the amazing power of the pancake, please remember that she has problems with decimals!

Shirts

Which is which?

Steven ran half way across the country today to pick up the shirts that we ordered early last week.

My sister and I have spent the evening ironing, creating our own version of the design because I think we may need more than 24 shirts.

Can you tell which is professional and which is home-made?

Dale and David are running half way across the country early tomorrow morning to ask the "professionals" to put the word "Steven" under the word "Cure"... since that was the design that we had talked about last week...and those were the instructions written on the order sheet...by the dude who was so great in helping us...and so incredibly touched by Steven's story...but also happened to be fired from the job at the time he was sitting at the front desk...yes, I said fired and still taking orders at the front desk, with noone else around...and I'm not even complaining that "strength" isn't wrapped around the stars, like the word "hope" is...since that was another thing that we talked about last week...and was written on the order sheet...by the dude who was fired from the professional job...but still sits at the front desk...and stills writes down the specifics of your design on order sheets...and collects the money, cash only...but forgets never turn the order in...just another story on this journey!

Cure Steven!
Cure VHL!
Cure kidney cancer!
Eat pancakes on Saturday morning!

Today We Lunched with Friends

Don't ask. Because if you do, I'd have to tell you!

(Apologies to our living, breathing friends who were witness to the madness!)

Just in Case You're Feeling Bored and Lonely Today

I have an explanation


Mary, my little girl, is at a YMCA camp for the week, so things are pretty quiet in the house this morning. And boring. And lonely.

Mary is attending a day-camp designed for pre-teen and early teen girls. The camp is called the "Ophelia Summer Program", and it's main objective is to infuse these developing girls with self-confidence, self-esteem and better self-expression!

HA!

I'm not sure how they'll handle Mary!

Although she just now qualifies for the age limits of the camp, I think she's been working on the objectives for quite a while!

Just in case you really are bored or lonely...

While we a drifting in this lonely sort of peace and quiet this week, I think we should use these more tranquil days to attack "The List."

"The List" includes a few final items that need to be addressed before the pancake breakfast.

I really need to figure out this Pay-Pal situation. There's a whole alternative world out there in cyber-land, and I have no idea how it works! This includes Pay-Pal! I would like a button on the site for donations, however, so TODAY I'm going to learn!

Steven and I hashed out ideas last night for a breakfast t-shirt. We are struggling! After a rather dismal try to associate words with "V", "H", and "L" that would convey the life with this disease, we've changed tracks. Now we're playing around ideas of using graphics to display the hope, courage and strength that is such an integral part of Steven's life. So while the idea of the t-shirt is perhaps coming together, we still need a way to actually produce them without a huge expense!
Oh my!

I'm a bit worried that a line might wait for breakfast outside the door of the restaurant. That would be a wonderful worry, as the more people who come the more money we raise, but I really don't want people to be frustrated and bored. I decided this past weekend, yes at the last moment possible, that it would be great fun for the children if a friendly clown or such was there to entertain and make the balloon figures that children love so much. While I'll start searching today, any ideas would be helpful!

And, we're heading back to Bethesda at the end of the week. As part of the commitment to finding a cure, Steven has been participating in a clinical study at the National Institutes of Health. Thursday and Friday are MRI and clinic days. He is feeling so absolutely well now, not even the usual headaches, that I'm expecting nothing but a glowing report of stable tumors!
This visit we'll drink our bubble tea in celebration!

I woke with a horrible headache this morning and stresses just seeping out of my pores.
I think I best tread gently today while chanting "No worries" over and over!

...email me with ideas and answers! Help!