OUR F.A.P. JOURNEY
1991 is when our journey began. I was 19, my husband Gerard was 21 and we were one week from our wedding day. A few months prior to this Gerard began to bleed rectally which was passed off as hemorrhoids. We went to the ER, saw his primary care doctor, and saw a specialist. No one knew what to say or do. We finally found a specialist who was willing to do a colonoscopy. Within minutes of it being done we knew it wasn’t good.
The doctor asked for some time to look things over and talk to different doctors. I will never forget the day we went to the appointment. I knew as soon as we walked in that it wasn’t good news and I immediately went numb. The doctor stated that his colon was plastered with polyps and told us that things didn’t look good. He knew it was out of his expertise so he referred us to a doctor out of state.
We were told to just do our wedding and honeymoon and we would have an appointment the week after. We were shocked and didn’t know how to react or what to tell people. And as far as us just going about our wedding and honeymoon that was easier said than done. The doctor had just told us that he felt Gerard’s chance of survival was only 50%. We were so young and just starting our life together, it was very devastating. We did take their advice and got married and did the honeymoon but we had such a huge sadness in our hearts through it all. Before we left to go to the church Gerard looked at me with tears in his eyes and told me I didn’t have to do it. He gave me a chance to run, he didn’t want me to have to deal with whatever we were about to face. I told him that I was with him till the end and reminded him of our vows we were soon to say; for better or worse, in sickness and in health. I was not giving up on him.
Gerard had his first surgery in January of 1993. We were so scared going into this not even knowing what F.A.P. was. What was this mysterious disease? It’s not like we could look it up, at the time there was little to no information on the web about it. We had no idea what we were about to face. I always believed that once he had his colon removed that he would be free and clear of any issues. Boy was I wrong. That day we began a journey that would continue and get worse with time and eventually take over our lives.
After his surgeries were done we decided to discuss children because at that point we were living a normal life and weren’t feeling the effects of the disease. Being told our future children would have a 50/50 chance of having the gene really made me question what we should do. Our dream was to have a houseful of kids but we knew that this disease could make our life difficult. With my husband being the start of the disease in his family we were unaware the impact a genetic condition would truly have. However we knew we wanted a child and therefore we decided to make it happen. In April of 1997 I gave birth to a beautiful baby boy who was just perfect to us. Never once did we let F.A.P. interfere with our joy of being parents.
As the years went on we were starting to worry and wonder if our son Cam had the F.A.P. gene. We made an appointment with our GI doctor and genetic counselor to discuss what we needed to do. We waited until our son was 9 to test for the gene. 0ur worst fears came true; he was a carrier of the gene that causes F.A.P. I will never forget the pain I felt that day. My heart was breaking for us, for him, for our family. My small child’s life would never be the same from this day forward.
Cam was scheduled for his first colonoscopy at 10 years old. It wasn’t an easy task to explain things but thankfully we had prepared him for all this a couple of years before. From day one we were open and honest with him about his father’s medical condition and his possible medical issues that where yet to come. The plan was made and colonoscopies would be performed every year and when he graduated from high school he would have the surgery to remove his colon. This is the typical plan in our area so kids don’t have to miss school and then take a year off before they start college and do the surgeries.
Unfortunately for us F.A.P had a different plan. In February of 2011 at 14 years of age Cam’s colonoscopy shocked us all. He had developed thousands of polyps; basically his colon was completely covered. The year before he only had a few so it was a huge surprise for us all to see how bad things had progressed. With much sadness his GI doctor informed us we couldn’t wait any longer. His total colectomy was set up for June of 2011. He would miss the last few weeks of junior high and the beginning of his freshman year. From February to June I don’t think I slept one night. The anxiety and fear that ravaged through my body was indescribable. The pain of knowing in just a short time your child would have to face a battle no one should ever have to face. My husband felt a huge amount of guilt for passing him the gene. I always explained to him that the gene may have come from his body but we made this decision to have a child together and that we would share the guilt of this. I felt so much sadness for him. As a parent you are supposed to be able to make your child’s pain go away and with this one I knew I couldn’t. It was probably one of the lowest moments of my life. I felt so helpless.
The first surgery was performed and quite honestly we were surprised at how much easier it seemed to be for our son. Of course being so young and being very healthy beforehand helped tremendously. He remained in the hospital for 10 days and we never left his side. The colostomy bag was a very hard thing for him to deal with. I have to admit it was for me as well. When Gerard had his I had no issues changing or cleaning it but with my son it was so difficult for me. I just couldn’t bear to see him like that. We had so many problems with the bag. The leaks happened three to four times a day. It was a nightmare. I have been through a lot in my life but seeing your child in pain or suffering is the worst pain I have ever endured.
The second surgery to reverse the colostomy bag was done in August. We were so happy to see the bag go. He had some complications with the second surgery due to the J-pouch not wanting to wake up and do its job. The doctor’s told us he should miss at least the first month of school to allow things to heal. Cam would have nothing to do with that. He was two weeks out from the second surgery and he made it to his first day of his freshman year. He was determined. From day one we raised our son to be bigger than the disease and to never let it define him. F.A.P. causes just as much emotional trauma as it does physical. From the constant medical issues, the nausea and vomiting daily, numerous surgeries, pain, countless doctor and ER visits, sleepless nights, blockages, etc… It seems to never end. Day in and day out we deal with the emotional and physical pain of it all.
I fear what the future holds for my husband and son. I lay awake every night and worry about what tomorrow brings. I can’t imagine my life without them but yet somehow I always worry about that happening. This disease is unpredictable and shows no mercy. Over the last three years my husband’s F.A.P. has taken over his life. He became disabled which in turn has become very hard for our son. He watches this disease slowly take away his Dad while he is dealing with his own issues. Hard enough to be 16 with F.A.P. but even harder watching your father slowly fade from the disease.
Now there are more bad days then good but we take the little bit of good time and make it great. Instead of whining every time we are in the ER for hours or in the hospital for days we make the best of it. We take the time to enjoy each other, play games, talk, etc… We use humor as a huge tool through it all as well. We made a pact from day one to not be victims. We are survivors and will continue to fight this disease with everything we have. We look at it as we were given this life because we were strong enough to handle it. We do have our days where it all gets to be too much and feel like we are going to break but then we realize it’s just a bad day and not a bad life.