A DISEASE A GIFT? Our journey began back in 1994 and we had only been married for 3 years. My husband Michael’s youngest sister was not feeling well and the doctors were trying to figure out through a series of different tests what was wrong. They concluded that she had Familial Adenomatous Polyposis (FAP) after doing a colonoscopy. If surgery wasn’t done soon, she wouldn’t make it.
My husband’s family lives on the East Coast and we live in Washington State. Her doctor advised that all her siblings be tested for the awful disease. They lost their mother young when she was 29 and the family didn’t know that it was from a hereditary colon disease until 1994. All the siblings were tested, 2 girls and 2 boys, and all of the children inherited this disease. What an absolute blow for our young and growing family as I was 4 months pregnant with Michael Jr. and Alyssa was just barely 3 years old.
We were told my husband had hundreds of polyps and that surgery to remove his colon and rectum was the only option to dodge cancer…but he felt fine! Soon after he had his J-pouch surgery and his 2 sisters had 2 step surgeries. Michael’s surgeon from the big city of Seattle decided to do a one step. In less than 24 hours his new system worked.
My brother in law had recently moved out to be with us to try to get into the aviation field and he was so talented. He saw Michael go through recovery and the changes that go with not having your colon, but he was hesitant in getting tested. Finally he got tested and was diagnosed with Gardner’s Syndrome. He had only few polyps, but they were close to changing over to cancer. Our present surgeon took care of him, but my brother in law had lots of concerns and fears. So he put it off. Not soon after, it metastasized to the liver and there was no going back.
We had always wanted a larger family. Some gave us grief for wanting to have a 3rd child because of the strong chance of inheritance of the disease. Personally, over the young years of our marriage, I had people ask “Would you have married Michael if you knew about this disease?” What kind of question was this? Thankfully, it was not asked by family or friends. But life is ALL ABOUT the ups and downs and finding real love and keeping your vows through sickness and in health.
Shortly after Amanda was born, my brother in law moved back in with us and got sicker and sicker. It was too late for surgery. In September of 1997, we all took care of him the best we could at home with hospice. They were wonderful and so caring. We needed to get him home so he could say his goodbyes to his family. At this point Alyssa and Michael Jr. saw firsthand the effects that the disease took on someone that didn’t have the surgery. We decided that we would slowly talk to the kids about the disease and what was ahead for our family.
I must mention before my story goes further, that I was born and raised Catholic, and after the disease became a part of our life I began to pray more seriously and frequently. When we were on the plane back to Pennsylvania with my brother in law, people could see that he was uncomfortable and not well. The staff was very gracious to all of us. During mid flight I prayed that my brother in law could be comfortable and that we could get him home. Moments later, travelers all around us got brave and asked us questions. They saw us trying to help him eat. It turned out, that all around us were people travelling to different destinations. They were all religious leaders! Writing this still gives me chills. They all asked us if they could give last rights and we nodded yes, all choked up. Little did we know that he would only last two more days. Thankfully, it was long enough for him to be able to say his goodbyes to most of his friends and family. He is missed dearly.
We discovered a fibroma, a soft tissue tumor, underneath Michael Jr.’s shoulder blade when he was 1 ½ years old. It grew from a golf ball to a tennis ball in two weeks. Surgery went well but trying to keep him from being a busy boy was a challenge and the other challenge was this occurred during Michael’s work’s strike. My gut told me that this was a marker and that he had the disease. It was hard to talk about it with my husband because he was still dealing with having recently had his big surgery so I kept it to myself and started doing research. The research horrified me. I didn’t understand it all and was overwhelmed. Finally Michael and I talked and our belief as time went on was that we were going to be upfront with the children as soon as they were able to understand the disease. They already lived seeing, first hand, their dad recovering from surgery. Technology has historically advanced in a lot of medical areas and we had always wanted a larger family. We were given grief for wanting to have a 3rd child because of the strong chance of inheritance of the disease.
Our families have been really supportive. I have to give A LOT of credit to my parents. They have always and still are a big part in our lives. At this time we all have been living together for almost 11 years and a lot of it is due to extensive surgeries. What a blessing it has been for our kids, to know their grandparents so well and to have a special relationship with them.
Michael had more surgeries to come with severe pouchitis, he ended up with an ileostomy in 2005. At first, there obviously was some adjustment and over time realized he was not a prisoner to our bathroom. I admire him so much, more than he will ever know. He has maintained his job of almost 25 years whether he feels good or not. Before the ileostomy it was really hard on him at work. Surgeries still plagued him. Parastomal hernias caused him to have to have his stoma moved to the other side of his body. The small county hospital knows our family so well. They are like our care ‘family’. As each surgery has occurred it has gotten a little more dangerous. He has had a few fistulas where there is a nick in the intestine and wounds needing to be reopened. I am amazed at all the things I have seen and done. I have packed wounds for weeks several times a day and mixed and administered TPN (nutrition) after working my route as a bread merchandiser pre Thanksgiving. I have learned to say, “Bring it. I am ready. I will survive this and so will everyone else.” Now when it comes to broken bones or sprains, well, that is my kryptonite…
I apologize for jumping around but having multiple family members affected with this is the only way to tell my story. The summer before freshman year of high school for Alyssa and first year middle school for Michael Jr., it was the time for their first colonoscopies. We waited until they were puberty age since they didn’t have any apparent bowel problems. They had already been diagnosed with CHRPE (freckles in the eye) and osteomas on their scalps and Alyssa had some in her mouth as well. This disease has affected each person differently in my family. We waited one more year for Amanda to be tested because she was the younger one. On the prep day I made it as fun as possible. I took the kids to the mall for distraction during the hunger time and then we played a game of Fear Factor of who could drink their prep drink the fastest. It became a game that we have played yearly ever since. They compete who can be done with their drink first, probably a sibling thing.
Then reality hit us…Alyssa had 30 polyps at the age of 13 and Michael Jr. had 12 at the age of 10. Now what do we do…. Of course Michael Sr. felt so bad and just wanted to make it better. He thought about the Make-A-Wish Foundation being a good aid in helping them accept their diagnosis especially at pivotal age of starting middle school and high school. The kids received amazing wishes and it really helped them during this time. Michael Jr. received an XBOX 360 on launch day that was delivered to our home. Alyssa met Kasey Kahne, a Nascar driver that was from the state of Washington and our whole family got to meet him and watch him race in Fontana, California. Both of these experiences were amazing and we are forever grateful. Our surgeon told us we could possibly put off surgery indefinitely with an arthritic drug called Sulindac. The kids take 2 pills a day 150mg each and for continuous years they have had between 0-8 polyps. The doctor diagnosed them with Gardner’s Syndrome as they have a different pattern of polyps and so many less. This is how their uncle was too. While Alyssa was in high school and college, she had osteomas that had to be removed from her face (more markers), all benign. Amanda has had 2 colonoscopies that were negative and we had a genetic blood test that tested her against her siblings and she was negative. All the grief we endured having a third child and she is negative! It is just as hard though for her as she has guilt about being the one that dodged this disease. We have to work through this too.
2012 was a really rough year. We lost Michael’s oldest sister to desmoid tumors. They had to Skype call because Michael was in the hospital too. There was a problem with the mesh from a previous hernia repair and they had to relocate his ileostomy to the other side of his body and got some fistulas. We almost lost him. All this time was a blur to me because I was trying to be home, making income, and going to the hospital as much as I could. Again my parents helped me so much. Alyssa was in her third year of college.
People often ask how we keep sane with all these traumatic events. First of all our faith has grown and become stronger as a family. The kids have grown up with the medical ups and downs, so that is all they know. One day at a time. When they were little we would do unbirthday parties for all of us on the same day. We tried to do fun, unique happy things that would make good memories. We never really travelled much or too far from home when they were little. In 2010 we took a trip to Hawaii for Christmas. It was a wonderful experience for us all. Another thing that we have taught the kids is to pay it forward, give back, and help others. We try to be involved in non-profit drives or just randomly be kind. Reach out to people that need someone. This especially helps me cope. Just think about it. When you are kind to someone you instantly feel happy. I do this as much as I can. It may be a Band-Aid for some of my days but I get through the day. We go on with life.
Alyssa graduated Western Washington University in 2013 with a Bachelor’s in Psychology and just applied for graduate school to become a teacher. Currently she is working within our school district as a substitute teacher’s aide. She also has really embraced her disease and circumstances. She is an ambassador and director at the Hereditary Colon Cancer Foundation, as well as some other colon groups. Michael Jr. is following his passion working on getting an AMT license and is taking aviation classes. He is in year one of a two program. Amanda will be travelling abroad for a week in her senior year of high school. You have to live life to the fullest. You just never know what is ahead. As our surgeon told me, “We all fight to survive everyday or you aren’t living.” I tell myself that when the going gets tough.
In February of 2014, Michael Sr. had a scope that revealed that he had a few pre-cancerous polyps in his duodenum. The polyps received a burn treatment then, and a month later. His duodenum will be rechecked in a few months. So thankful that Alyssa has met up with very experienced colon friends or he possibly wouldn’t have had this test. So much for the old saying “Once the colon is taken out, you’re good to go.” Not true at all with FAP.
In a few weeks Michael Sr. will be having a parastomal hernia repair and I will have my mental armor on to get me through. Alyssa and Michael Jr. have to monitor the polyps in their stomach and their thyroid. To this day the colon polyps are minimal for them. We can do this. I have to deal with basal skin cancer. Like I tell the kids, every family has something they have to deal with, but we know early on what it is so we can be prepared.
Don’t get me wrong this disease is not the kind of gift I would give anyone, but it is a gift for us as have learned how to fight, survive and live life to the fullest and not take anything or anyone for granted. The photo above is from our 2010 Hawaii trip, as this was one of the most stress-free times in our family’s life.