I had the honor of marrying into the large and welcoming Birsic family of 9 children, when I married Tom Birsic in 1978.Coming from a small family; it took me awhile to understand the dynamics of a larger family and the various interactions amongst the siblings on a number of levels. Over the years, I became very close to my sister-in-law, Joan Birsic Dawson- we were about the same age and our daughters were close in age resulting in Joan and I enrolling the little girls in everything from gymnastics to ballet, and taking trips to the family farm and the beach together. In 1996 at the age of 38, Joan went into the hospital for routine surgery to remove some kidney stones. Instead the surgeon delivered the heart breaking news that Joan had pancreatic cancer, which was non-resectable. She had 3 – 6 months to live and her daughters were 3 and 5 years of age. To the day I die, I will never forget the surgeon’s cold delivery of that diagnosis and the feeling we were all going down some horrible hole of no control or hope. Life was whirling out of control.
I remember going home to look up on the internet what a pancreas is, since I didn’t even know I had one. My second search was for pancreatic cancer at the American Cancer Society website and the news was all grim. Fortunately, the large Birsic family is a wealth of resourceful and smart siblings, including Joan’s brother, Dr. William Birsic, a general surgeon. Due to Bill’s determination and love of Joan, he was unwilling to take the fight lying down. He researched various possibilities and after several visits to the National Institutes of Health, Joan was accepted into a clinical trial for pancreatic cancer. After a brutal 6 weeks of the clinical trial and living in an apartment in Bethesda, away from her adorable daughters, Joan’s tumor shrunk. After meeting with the pancreas surgeons at Johns Hopkins Hospital in Baltimore, Joan was accepted as a candidate for the Whipple surgical procedure. We were told that having the surgery would give her on average another 3-5 years to watch her daughters grow and share as much time as she could with her family, which she loved so very much.
She was so strong through the entire ordeal, making all of us put on a strong front as best we could. However, for a group of talented, smart, proactive people we felt hopeless and powerless. We were devastated and we were mad. How could this happen? There was so little information available in 1996…even on the “Information Highway.” What happened to people who didn’t have a brother who was a researcher, who had a big family support system like Joan had? There had to be something we could do to make it better for the next family who received this horrible diagnosis. It was decided to start either a Foundation or a Fund in Joan’s name and I started to pursue the legal aspects of that decision.
As fate would have it, Tom and I were invited by one of Tom’s law firm partners, Tom Holt, to a Boston College/Notre Dame football game. It was the first time I met Jane Holt, Tom’s wife, and we chatted throughout the game, becoming acquainted with the typical exchange of children, hobbies, etc. Jane shared with me her struggle with chronic pancreatitis and then I told her about Joan’s battle with pancreatic cancer. We shared our frustration on the lack of knowledge about pancreas disease by the public and medical communities equally. After several communications via email and telephone, Jane and I committed to start a foundation beginning with the legal issues, funding and the development of a Board of Directors.
The Whipple procedure only extended Joan’s life approximately 18 months, dying after just turning 40, with Jennifer only 6 years old and Karen, barely 4. Joan died before the National Pancreas Foundation received its official non-profit status, but she inspires me every day to fight, collaborate, lobby, raise funds, seek new treatments and cures, in order to give people hope. I am also inspired by so many others who are the faces of courage in NPF’s Courage Network – all of the clinicians and researchers who dedicate their careers to finding answers to so many unknowns in the pancreas world; the volunteers who enthusiastically give of their time and talent to raise funds and support programs in their local areas; the companies and private individuals who are so generous with their checkbooks and most importantly the patients and their families who battle every day with pancreas disease. I am honored to stand shoulder to shoulder with them to increase awareness, educate, heal and give hope.
I had no idea what it meant over a decade ago when we agreed that we had to do “something” and that something is now the National Pancreas Foundation. It’s been many years since that football game. The National Pancreas Foundation continues to do lots of important things, but I believe of all the things we do, one of the most important is that we are HERE! And patients, family members, caregivers and the medical community have somewhere to go for a sense of hope and reliable information.
