I’m Judy and this is my family’s FAP story. I was with Kyle for 20 years, married for 16. We had 2 healthy children, a daughter, Allison born in December 1993, and a son, Mason, born in March 1995. By the time the kids were in elementary school, they each had some cysts on their shins. We had them removed by a plastic surgeon. The pathology came back without any alarms, so we didn’t think anything of them.
In April 2008, Kyle asked me for a divorce. We were separated for a year when he called in April 2009, and told me he had been diagnosed with cancer. He had a malignant mass in his stomach and in his rectum. He said the doctors were “optimistic.” He had the kids over that night for dinner and told them as well. I found out from a friend a couple of months later that it was stage 4 cancer. I called him and asked him and he concurred. (My sister, who is a nurse, told me to ask him if it was hereditary, and he said, “no”.) I was advised by my divorce lawyer not to discuss his cancer with our kids. (I regret that, as I didn’t get to prepare them for what was to come.)
In July 2009, my daughter told me she was having stomach pains and blood in her stool and very tired. I called her dad and he said her symptoms were “psycho-sematic”. I disagreed and asked what his symptoms were. They were the same as hers. I got the name of his GUI doctor and scheduled an immediate appointment for her.
August 2009, Allison had her first colonoscopy, and Kyle was there. In recovery, the doctor told us she had over 300 bleeding polyps. She was also anemic. (Stupid HIPAA laws!!!). I wasn’t sure what to do with that information we’d just been given, so I called my sister in Colorado with it. I emailed her the info the doctor had given me.
Later that night, she called me. She had been researching different things on the internet, and came across Familial Adenomatous Polyposis (FAP), and something else similar to it. She told me to ask Kyle what he had, and so I called him the next morning and asked. He started talking about the mutation in the 5th gene, and I asked him if it was FAP. The answer was “yes”. I asked why he didn’t tell me before, and he had no answers. (I believe he was dealing with his issues and feeling guilty for passing along this gene, and didn’t know how to communicate with me about it.)
I again called my sister and she advised us to seek genetic testing, and test both kids. I started searching the web as well to learn about this disease. I called Allison’s pediatrician and she suggested we go to Children’s Mercy Hospital to more qualified doctors. At the geneticist, Mason was tested, and it was confirmed he had FAP as well. After Allison’s second colonoscopy, the doctor thought it would be best to have a total colectomy, saving her rectum, so no ostomy. Her dad and I both agreed to the surgery, and set the date for December 28, during the holiday break.
In the meantime my sister had researched a study trial for FAP in minor children at the Cleveland Clinic in Ohio. In October, Mason, Allison and I went to Cleveland. Kyle couldn’t go because he was undergoing chemotherapy treatments at the time, so his mother came and met us there on his behalf. Mason had his scope and had less than twenty polyps, so he qualified for the study. It was for Celebrex.
November 19, 2009, our divorce became final. It was the last time I saw Kyle alive. The kids got to be with him for Thanksgiving and the days following. He passed away December 3, 2009. He was only 40 years old.
Allison turned sixteen December 13. December 28, she had her surgery to remove her colon. She stayed in the hospital for six days, and I stayed with her. She has been a real trooper through all of this!! She has adjusted quickly and doesn’t seem to have too many problems — some stomach pains here and there. After the break she was able to go back to school and go back to her normal life, including her dance team. She has since graduated high school, and is now in her second year of college. She of course is checked every year with an upper and lower scope, and it looks good so far.
Mason still has his colon. The study trial ended early in September 2013. He wouldn’t have been able to stay in it anyway, because he had over eighty polyps this time. The doctor in |Cleveland said he could keep his colon for at least another year and to get checked again in 2014, and go from there. He is in good health other than the FAP, and is in his first year of college.
This has been a scary roller coaster that none of us were prepared to ride. Through our faith in God, our family, friends, humor, family therapy, individual therapy, and grief counseling (I attended as well) we are all doing as well as can be expected.