Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
5 years after Charlie's Dad died of colon cancer, our world was once again turned upside down with Charlie receiving a surprise diagnosis of Familial Adenomatous Polyposis at just 10 years old. FAP is a rare disease that comes from inheriting a colorectal cancer gene. Patients with FAP have a 100% chance of colon cancer early in life, sometimes as young as adolescence. Basically speaking, the colon stops doing the job it is designed to do and it becomes a polyp-forming organ. Hundreds to thousands of polyps develop and eventually lead to cancer. It was clear to me that we were in way over our heads and I had alot of learning to do. Once I educated myself, it became abundantly clear that not just anyone could handle this rare disease. I set out to find who exactly was going to guide us through this daunting and dismal disease. It was ultimately decided, after much cross-examination from me, that MD Fox at Boston Children's hospital was where Charlie needed to be. I set out to make this happen and ran into major frustrating insurance obstacles but eventually, with tenacity, I was able to cut through all of that and get Charlie accepted and approved as a patient at BCH. This began many yearly trips to Boston for annual colonoscopies and endoscopies. Charlie always trudged through these yucky tests will little to no complaints. Charlie's fist scope in October of 2017 showed about 34 polyps. Over the next three years, that number would grow by about 30ish per year. Finally this past September when Charlie's polyp burden surpassed 100(all pre-cancerous), it was decided we would meet with the surgeon to begin the talks of what the next steps were. There was no bargaining nor debating that the ONLY way to keep Charlie cancer free and avoid an untimely death like his father, was to have his entire colon removed. The timing of this is tricky because there isn't a blueprint for how this disease progresses........everyone is different and if you want to gamble, you can, but at some point you are just going to be too late. Now I do love to gamble, but not when the stakes are high....and these stakes are WAY too high! It finally was time to stop being scared of doing it and embrace the fact that although it is terrifying, living with a constant worry of whether or not one of his polyps has turned into cancer during the year is more terrifying.
Due to my history with LONG approval times and lots and lots of hoops to jump through with insurance, we decided to go ahead and initiate approval with a 'dummy date' for surgery on 2/4/2020. Our plan was to have everything in place for an August surgery date. I believe that I was put in my place and told in no uncertain terms that this wouldn't be guided by my plan, but by His. Imagine my surprise when, on 1/20/2020, a mere month from initiating insurance authorization, I was called and told the surgery had been approved and there was OR time and two surgical teams ready to care for Charlie! I was dumbfounded and completely not ready! But alas, with the help of a supportive school, an understanding fiancé, loving parents and an amazing work family, it all just began to fall into place. That's when I realized we were actually doing this. With fear of the unknown, a part of me still questioning if this was the only way, and looking for some reason to put it off, we trudged forth. The bravery Charlie showed when I broke the news that he would be having surgery in just two short weeks was something to see. He embraced it with just an eye roll, a slap to the forehead, and an 'OK'. He slowly began to realize what this actually meant and there were various stages he moved through, much like a grief process. He wasn't happy he would be missing the Kiss concert with his girlfriend and his trip to the Mediterranean in April. It was especially hard to grasp that he likely wouldn't be returning to school this year. So many things have happened so fast over the last two weeks. The MOST amazing thing has come with the instant support of the community that loves Charlie. We have been blessed with countless prayers, notes of encouragement, financial support and most of all LOVE!!!
We are currently traveling by car to Boston where tomorrow, 2/3/2020, will begin our adventure. Charlie will begin bowel prep tonight :( and have pre-op and surgical appointments, along with more bowel prep. 2/4/2020 will be go time. Charlie will undergo a restorative proctocolectomy with IPAA J-pouch. Long and short of that is, they will remove his colon and use his small intestines to form a pouch to act as a reservoir, kind of like a small colon. Charlie will have a temporary ostomy while the internal pouch heals. There will be several more visits and procedures and if all goes well, a final surgery in three months to basically 'hook everything back up'. We continue to ask for and appreciate all the prayers and love being sent our way!
