Wednesday, July 01, 2009

Relfections from our Universe

Notes from a Conference

* When checking into the hotel, the front desk clerk asked if we were visiting for
"The von Hipe..the von hipp...the family reunion?"

We certainly were!

* The health and nutrition presentation was amazing this year!

* Kale, a super-power in the world of antioxidants, reportedly makes a delicious dish when combined with pine nuts, dried cranberries, and olive oil.

*Eat your apples! Though most accept the old adage, "an apple a day keeps the doctor away", the nutritional specialist recommended up to six apples a day.

Of course that makes sense to the VHL population..."six apples a day keeps the geneticist, ophthalmologist, neurosurgeon, urologist, endocrinologist, and oncologist away!"

* Dr. G rocks the world of ophthalmology!

* We now have a much better "plan" when Steven's eyes show the ravages of the disease.
Knowledge gives peace.

* "I never forget my VHL patients."
And, of course, I got teary at the sentiment..

* A molecular biologist I was never meant to be.

* The anti-angiogenesis chemotherapy drugs, Avastin and Sutent, act on very different parts of the cell.

* I can nimbly throw around terms like human vascular endothelial growth factor and tyrosine-kinase inhibitor and have some idea what minute structures these big words represent.

(Cool party trick!)

* I need to learn my HIF before next year.

* In the past 13 years, Joyce and the VHLFA have raised nearly one and a half millions dollars for VHL research.

While this is wonderful news...I want more!

Could I interest you in a little 3-day or relay for VHL?

* It is awe-inspiring to sit in a room with people describing what year they lost half of their last kidney to cancer or how a tumor caused paralysis and realize that the "brave" factor in that room can only be described exponentially.

* Pommegranite juice is being used medicinally...with no propositions needed! The super-juice has actually been shown to slow the progress of protrate cancer, and the studies are now moving on to the effects of pommegranite juice in kidney cancer!

* I realized that my mind is to small for this enormous world in which we now live. I've tried for four years to understand the truths which face my sweet son by picking apart genes and cells, processes and proteins. But this world of VHL is too big for me.

A doctor referred to VHL as being our universe.

That it is.
That it is.

Monday, June 29, 2009

Reflections from 35,000 Feet

1. Though I never saw the Grand Canyon from the sky, I do believe that we flew over the Mojave Desert...but it could have been the moon by the looks of it!

2. I bonded with a fellow passenger on the flight over...sadly I don't mean in an emotional or psychological way.

3. My little girl doesn't understand "time zone theory", and we received calls at the oddest times.

4. Hollywood Blvd. is just plain odd. Venice Beach is just plain odd too, but in a fun sort of way!

5. The "Hollywood" sign is visible even through layers of throat-scratching and eye-rubbing smog!

6. My level of patience is indirectly related to the number of time zones I travel through and exponentially lowered by the number of days that I'm not in my zone!

7. Three nights stay in a nice southern California hotel requires a small mortgage!

8. Pacific Ocean breezes are more aromatic and refreshing than the Atlantic Ocean winds...sorry!

9. Fine dining can be had at a taco stand.

10. I have finally had that $5 cup of coffee...though strangley enough it tasted much like the 99 cent cup I frequently buy at McDonalds.

11. I believe that I saw a small enclave of real housewives while circling Orange County.

12. Though my brain may have been a bit radiated at 35,000 feet, I do believe that it feels good to be home...cranky kids, laundry, bills and all!

Saturday, June 27, 2009

Memories

Venice Beach, California
June 26, 2009

Thanks Carole!


xj5fykie67...don't ask!

Thursday, June 25, 2009

We're Here

And we think we've discovered a few things on this trip today that our president should know:

1. Our sweet boy is very, very brave and should be awarded a presidential medal of sort for bravery. We already knew he was made of tough stuff, enduring two brain surgeries with grace and strength,

but now we know he's braver than brave, as he wore his "Michelle's shirt" for five hours today at the George Bush Airport in Houston!

2. We found the energy crisis. It is creeping along Interstate 5 in southern California.

3. The health plan that congress is now molding needs to include Botox.
And I mean now!

(And tummy tucks!)

Wednesday, June 24, 2009

Wishes from the Trenches

Today,

I will not...

*worry about earthquakes.

*wonder how a big plane lands.

*read stories about de-railed metro systems
.

I may or may not...

*finish the laundry.

*prepare three days of meals.

*run to the post office.

I most definitely will...

*watch a special video.

*read a bit more about chromosomes, proteins, VEGF, and elonginB and C, and be prepared to learn more.

*wish


...for a safe trip to California.

...for good times with great people.

...a cure for my sweet boy.
Nothing less.
Cured.

Sunday, June 21, 2009

Happy Father's Day

"Our fathers toil with hands and heart
To make our lives complete.
They quietly brave the winter cold,
Endure the summer heat."


Tuesday, June 09, 2009

The Summer of My Insanity

Short, sweet, and to the point.

1. Dale has an appointment with a cardiologist on June 19th to check the status of his newly "re-diagnosed" ventricular septal defect.

I'll be sure to attend that appointment with him, and I might ask the good doctor to check Dale's ears...since he says "what?" every time I talk to him!

2. David had a little accident in my car last week.
(I'd share pictures of my missing front end, but my computer had a little accident too.)

Does it frighten anyone else that he hopes to pay for his soon-to-be-exorbitant-car insurance by working at a little bunjee jumping kiosk at the mall?

Oh my!

3. Two bills for Steven and Dale's health issues arrived this week.

Oh my!
Exorbitance!
Again!

4. I am borrowing a nice, new car from my parents right now. I had to drive their old car one day last week...mine missing the front and all...and my dad told me, after I was already seated, belted and in gear, that the transmission was slipping.

I made it home safely by shifting into neutral above 30 m.p.h., coasting, and then shifting back into drive below 30 m.p.h.

Unfortunately that was a bit too much technology for me, and now my brain is slipping too.

5. My little girl is growing up!

Is that allowed?
Someone stop this insanity!