On Becoming a Grandmother

Lee Ann K. in Washington

What a blessing and a joy to be present as my first grandchild Savannah came into the world on May 8, 2003! She was so tiny and so very beautiful. As I looked into that little face and watched the joy on my son’s face as he saw her for the first time, I wanted to sing and dance. I was a Nana! I was of course very circumspect on the outside though so as not to get tossed out on my ear by a very tired and emotional new mother.

I felt so many emotions that day. I believe the most prominent one was of gratitude. I was so grateful that I had reached the age of 46 and was alive to see this miracle. I felt grateful to a Heavenly Father who has given me this treasure and helped me find the joy and the blessings in my life with VHL. The gratitude that I feel every day for the doctors, researchers, and all the medical staff I’ve met over the years is very hard to express. Because of their devotion and skill I am still here -- Several surgeries under my belt, but not too much the worse for wear!

My father had VHL, but was not diagnosed during his lifetime and died at the age of 30 when I was 3 years old. His mother, my grandmother, was blind and had a brain tumor, but was never diagnosed with VHL during her lifetime. She died when my father was a little boy. Neither of them lived to see their children grow up, let alone their grandchildren.

My mother asked the doctors when I was growing up if I would also get a brain tumor. She was told it was just a fluke of nature that my father and grandmother both had them. I feel so much pain for my dad and my grandmother at what they must have had to go through, and pain for myself when I think of never getting to know them.

In 1993 I had my first brain surgery and in 1994 after having 5 kidney tumors removed I was finally diagnosed with VHL. At this point it was a blessing to find out about the VHL Family Alliance. Their support really helped me to learn and deal with this disease. In 1997 I had laser surgery to remove a tumor in my eye. Then we received a huge blessing. I was invited to join a protocol at the U.S. National Institutes of Health (NIH) in Bethesda, Maryland. In 2001 Radio Frequency Ablation (RFA)1 was performed on one of my kidneys to remove another tumor. It was so much more non-invasive and I was only in the hospital for one and a half days. Following another brain surgery in 2002 to remove Buford, Beulah, and Buster (I always name my tumors) I was invited to join another protocol. I am so grateful to all the folks at the NIH. They have become like a second family to me.

Today I am doing wonderfully well! We are only watching 1 new little brain tumor (Eula May) but she is very tiny and we just aren’t giving her any fertilizer! I feel great! Last June I was able to quit my job to help with my husband’s business, paint, write, and look after an 11 year old niece we’re raising. I have launched a small business in motivational speaking. It’s been a great year and I feel better physically than I have in a long time. I no longer have the stressful job or a two hour a day commute. I’ve been very fortunate to have full recoveries after each surgery. I think I’m pretty normal, but who knows what my family would say!!

When I compare my life today versus the lives of my Grandmother and my father, I feel like a pioneer. I haven’t trekked the Oregon Trail in a covered wagon but I have been on a journey that my VHL-affected father and those before him were never able to take. I have been blessed enough to watch my children grow up and now I’m blessed to share the lives of my grandchildren. I find great joy in my life and I believe it really couldn’t get much better than this. I am so thankful to all the people who strive to make this possible for a new generation of pioneers.

1. Radio Frequency Ablation (RFA) is the process of using a laparoscopic heat probe to "cook" kidney tumors in place. See VHLFF, Sept 2000.