The Gift of Friendship

by Jan C., Illinois

In 1997 my son Tony, then 16, was diagnosed with VHL. We were blessed to be in the care of a brilliant neurosurgeon, Dr. Tanadori Tomita, at Chicago Children’s Memorial Hospital. Dr. Tomita removed two tumors from the cerebellum and one from the cervical spine. This was the first case of VHL at Children’s to their knowledge, and we will be forever grateful to Dr. Tomita for diagnosing what we understand to be a very often misdiagnosed disease. This is also where we had the fortune to be under the care of Dr. Stewart Goldman, an outstanding pediatric oncologist whose sensitivity helped my son through a very difficult diagnosis. His knowledge, sense of humor and dedication to patient care and passion for helping families are unmatched.

VHL was a frightening unknown disease to all of us -- myself, my husband Scott, my daughter Gina (then 18), and most of all of course to Tony. While he was in intensive care, a colleague and friend of mine looked up von Hippel-Lindau on the internet and printed out invaluable information from the website www.vhl.org. Even since then the VHLFA has provided our family with information, knowledge, the questions to ask and the people to call. Before we even left the hospital we all had genetic testing which resulted in finding out that this was not an inherited gene in our family, but that Tony’s gene "zigged when it should have zagged," to quote the geneticist. Tony is the first in our family to have VHL.

We have been through the roller-coaster that this type of disease presents, but all along the way we have been truly blessed by incredibly supportive friends, family and clergy. Through this support Tony and our family have been carried through another surgery this December, removing two more tumors in the cerebellum. This time, looking for a physician that Tony could continue with into adulthood, we went to the University of Chicago on the recommendation of friends and VHLFA. They had followed and had a working knowledge of several VHL cases.

Tony, now a sophomore at a university in Ohio, came home for Christmas break, had surgery, and returned in time for the spring semester. He has always been very pragmatic about his health, dealing with it when he has to, and enjoying everything he can in between. He tells us he takes nothing for granted and it bothers him when others do. His friends have been a terrific support system for him, and he has also been overwhelmed by the generosity of others.

I have struggled with how I might be able to make a difference in our fight against VHL and had spoken with my friend Nonie about fundraising. She spoke with another friend of ours who has extensive experience in fundraising, and she said that it’s key to connect fundraising to a celebration. Our community was also rallying for funds and team participation for the American Cancer Society’s Relay for Life. So we put our efforts there, feeling we were doing something to fight cancer.

At the same time, unbeknownst to me, friends were planning another event -- a 25th Wedding Anniversary surprise party. Our friends, knowing that we wanted to do something for VHL, turned this celebration into a small fundraiser. They knew that we would much rather have donations for VHL over anniversary gifts!

This was all so enlightening to me -- and that is why I am writing to you. We can all make a difference in the fight against VHL by raising research funds that go directly to our cause. We have so many reasons to celebrate life and to gather with friends and family. I am challenging myself to put on my thinking cap and get creative with Celebrations for VHL. Is it a golf outing, a day at the races, a picnic -- the possibilities are endless! Together we can make a real difference.

Our Relay for Life team was pleased to have raised almost $7,000. And our Anniversary team blessed us with a donation to VHL of over $2,700. Both of these efforts were very grass-roots, simple yet making an impact.

Again, our sincere thanks to VHLFA for everything you do for families.