Hi Family and Friends,
The Walk is behind us and I thank all of my supporters who sponsored my family and me. My goal is to help those who are off in the labs working long hours, burning the midnight oil, peering through microscopes, plowing through data, writing papers, going to conferences and working on grants to buy expensive equipment, supplies and provide assistants. They are working to find better treatments or maybe even a cure for the many wonderful folks who, through no fault of their own, fell victim to GIST (gastrointestinal stromal tumor). GIST is a rare form of cancer that up until the discovery of Gleevec was a death sentence with a prognosis of only about a year. For many of us. research has added years to that prognosis and a world of hope.
I have joined the growing population of GISTers (about 5,000 new cases per year in the US) and caretakers who are supporting the fund raising to help those dedicated doctors, researchers and scientists. With funding, they can focus a more on the science of a cure for GIST and a little less on obtaining the grants. This year I became a member of the Board of Directors of GCRF (the GIST Cancer Research Fund). I was thrilled to accept the invitation from Tania and Robert Sutman, the founders, and the other Board members. Everyone volunteers their time and works tirelessly with the only compensation being hope for a cure. I was glad to be given an opportunity to share in the work. It's a challenging job but I love it and hope to make a difference. I accepted the invitation from Tania and Robert Sutman and the other Board members who all volunteer their time and work tirelessly with the only compensation being hope for a cure.
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FOX 5 News, Dr. Sapna chats with Amberly and BillBill carries a tired Amberly along the walk while having a chat with Dr. Sapna of FOX 5 News. I thanked her for her support and personal committment to helping those of us with "orphan" cancers. She is a kind and caring person and we wish her success with her career at FOX 5 News.
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Walt with a smile, pictured with Zander and Bill |
Walt "Clyde" Frazier signs pictures for the SmithsAbove - Walt "Clyde" Frazier takes a moment to chat with Zander and Amberly while we look on at his bold signing of last year's pictures. He is a humble, great man who continues to support our fund raising effort. There is no way to thank him enough for his help but he says that "our appreciation is all the thanks he needs."
Left - Walt poses with Zander and me before the walk. He is never to busy to share a "celebrity moment" with any of the Walkers. He joked about how many kids wanted to have their pictures taken with him because he retired well before they were born.
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As for my family and me, so many things have changed so fast over the past year. Amberly, became a Tae Kwon Do Black Belt, started fourth grade and during last year she was accepted into ORIAN, the gifted children's program. My little baby, Zander, got on the school bus for the first time this year and started pre-school. Zander had the third surgery in as many years and is progressing nicely with his development. He had a rough start and has some catching up to do. He finished his at home therapy after three years and now gets OT, PT and speech in pre-school. We miss the visits from the therapists who were so close to Zander. The were like family but it was time for them to move on; Zander is growing up. Jeanne is thinking about going back to school and possibly going into the medical administration field. She had a rough year and a half since I was diagnosed but is the rock for our family.
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Amberly proudly accepts her Tae Kwon Do Black Belt and Mom and Dad are very proud
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Zander's first day of school
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Jeanne, keeping it all going smoothly though it's been a bit rough.
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Bill elected VP of Lindenhurst Rotary Club |
We actually took a little vacation this summer and also got out on our boat a few times. We really enjoyed the summer with the house construction completely finished (now to begin the million little things still to be done). And as for me, I never know when to lighten up but enjoy the pace. This year, aside from joining the Board of GCRF, I was elected VP of the Lindenhurst Rotary and also joined the Lindenhurst Chamber of Commerce. My work at home is keeping me very busy and my job at Telephonics has given me some exciting new engineering challenges. So for now, I think I'll keep the name BiziBill. |
Zander and Bill get a break at the beach |
When I was diagnosed with cancer I got a free ticket on the roller-coaster of emotions. For me, living with cancer is difficult. It is hard to feel good but constantly be faced with reminders that I may become resistant to Gleevec. I have to remember that the researchers are working hard to find the cause of the resistance and that they may even find a cure someday. A transformation takes place that is hard to describe but you definitely think differently than you did before the diagnosis. When you come face-to-face with the prospect of dying at any moment, as I did during the six days while I waited for my path' report, you think about your unfinished work, the people who need you, and the parts of life you don't want to miss, especially seeing your kids off into the world. Once I learned that what I had was GIST and that there was a treatment and that there was hope I was thankful. Now, after a year and a half of living with GIST, I am glad to be able to help raise funds and hope that you might continue to sponsor us at The 2007 Walk and help support the Find a Cure effort.
To learn more about the GIST Cancer Research Fund or to make a credit card contribution please visit http://www.gistinfo.org. If you want to sponsor us with a check or cash you will get a receipt so that you can deduct it from your taxes.
Thank you,
Bill
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