I See Courage

By Sally Swift

Alex is so far the only person in his family to have VHL. Now 14, Alex was diagnosed with VHL at age 4 when a large endolymphatic sac tumor was removed from his brain and right ear. Karen worked hard to help find the best treatments for him, and to raise money to strive for a cure.

Meanwhile, Karen herself was stricken with Uveal Melanoma in 2007, which caused her to lose her right eye two years ago, ironically under the care of the same doctors who continue to treat Alex for the retinal angiomas of VHL. Unfortunately Karen’s melanoma metastasized and despite a valiant battle, she passed away on August 27, 2010 at age 48. We will all miss her very much. Her Aunt Sally, who writes frequently about Alex’s VHL and Karen’s melanoma in her online blog, wrote the following at the time of Karen’s enucleation (eye removal) surgery.

10 July 2008...:

I want to howl to the heavens: HOW MUCH PAIN MUST ONE FAMILY TAKE?

I know the answer. As much as they’re given.

Okay. So the goal is quality of life.

Long term prognosis? Not on Karen’s radar, thank you. We’ll know when we know. Right now, things look good. Even through only one eye. She’s driving again. Bike riding. Cooking. Computing.

Except. Karen too will need MRI’s, liver scans, chest X-rays and biopsies every 6 months for as long as she lives. Which we hope and pray will be a very long time.

And she shares something else special with Alex -- they both have the same eye surgeon, they’ve both had eye tumors removed.

But again, she jokes about it. “Most people plan family vacations,” she says. “In our family we plan trips to the hospital.”

Karen and Alex. Mother and son. Different cancers, similar losses, totally the right attitude. We all work hard to assure Alex he won’t lose an eye too, though he knows his sight is still in danger. Never mind. That’s in the future.

For now, fight back. Mobilize. Energize. Laugh. Love. Live. Learn all you can. Gather your physical and emotional resources. Seek and accept support and counsel and advice. Lean on your loved ones and stand on your own two feet.

According to Karen’s example, that’s what you do to survive. More, that’s how you live life to the fullest.

Karen is a survivor of the highest order. An inspiration to cancer victims, mothers of cancer victims, other survivors and those who are trying to be. An object lesson to those of us who waste time moaning about petty problems.

Karen is such a warm, courageous, loving person. She virtually glows with goodness and light. Which she can only see from one side now.

I can tell her what I see when I look at her -- I see unbelievable courage.

Quoted from Sally Swift’s blog: http://open.salon.com/blog/sally_swift/2008/07/10/i_see_courage

As printed in the VHL Family Forum 18:3, September 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.