Monday, June 30, 2008


Guess where we where!

Steven and I went to the 15th birthday celebration of the VHLFA this past Saturday. What a privilege it was to spend a whole day with other VHL warriors and families. Steven was amazed to be part of a "group", and I was thrilled to finally put some faces to names.

We came home with lasting memories and thought provoking topics to discuss.

Just to name a few...

The surgery for kidney cancer (in VHL patients) is being done with smaller and smaller incisions and possibly robotic... it's amazing!

And did you know that once a cancerous tumor is separated from the kidney it is placed into a small bag, while still in the abdominal cavity,before it is removed through the laparoscopic hole.

Speakers should know the audience...especially if you are a speaking to an room of the's best not to mention your "luck of good genes". OUCH!

I am still sorely dense about the biology/chemistry/genetics behind tumor/cancer formation. And if you know me, you know that I HAVE TO UNDERSTAND EVERTHING! for my mental health.

Steven is able to carry on amazing conversations with research doctors who are making great strides in the world of oncology...not conversations about renal cell carcinoma or other VHL manifestations, but conversations about
favelas, the movies that accurately portray these settlements, and the architecture of Brasilia. Listening to the "essence of Steven" always warms my heart!

Fundraising is so important. What we did last year, combined with a few more efforts, would give a researcher the ability to seek the large grants that fund the projects. Nothing is too small in the world of fundraising!

Dale could never sit through these meetings. I don't feel so bad for not reserving a spot for him!

Camaraderie is all so important in the face of a chronic and life threatening illness. We are so less lonely now!

Research in the area of drug therapies is pointing toward the anti-angiogenesis medicines and some interesting ideas about medications to stop the "leaky vessels" in the CNS tumors. We'll take it!

Despite our "living in hope", I still have VHL nightmares, as evidenced by my dreams Saturday night about the up-coming abdominal scans.

The process of grief is continuous and proceeds at different rates, which neatly explains how Steven, Dale and I can show such different emotions to horrible news. We process at different rates. Simple.

A psychologist asked family members if the movies of kidney surgeries that were shown during a presentation were upsetting to us. Did she not know that I google these things and watch them on you-tube?

Joyce is an amazing woman!

Before the age of CT scans, tumors were found by injecting a contrast directly into the CNS, tipping the body to make it flow, and then proceeding to x-rays! YUCK!

Even in the age of better scanning techniques and more advanced surgical skills, VHL continues to ravage the bodies of the chosen few. It's a horrible and insidious disease, and the only way to stop the devastation is to find a cure. We walked away more determined than ever to fund this cure.

And we are determined to celebrate next year too!

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