In 2015 we met the Johnson family because 8-year-old Zack wanted to dedicate his birthday to support his dad. We fell in love with their darling family – Caroline and Scott, Zack and his twin brothers Jake and Ben. Below is their story as told by Caroline. The family is an inspiration to all who know them and anyone facing this disease. Read more to learn their story (that’s making national news this week!) and see how to support their fight.
My husband was 42 when he began having issues. Scott began having unusual and uncontrollable bowel movements. He would say repeatedly he felt like there was something restricting him from being able to pass his bowels. He never was able to fully empty his bowels and when he did, the movements would be very thin, narrow and usually bloody. The final straw was the night he went into the bathroom, came out a few minutes later and said, “I think I need to go to the hospital because I am bleeding.” The amount of blood I saw was something I will never forget. He never went to the hospital, but he called his doctor the next day.
Four months later after dietary changes and probiotics, Scott pushed for a colonoscopy which found an “angry mass” inside of his rectum. Scans showed that it had metastasized to his liver, at which time he was declared stage IV. He began chemo and radiation as our family traveled to and from Connecticut to Memorial Sloan Kettering in New York for the next two years for treatments, scans and surgeries.
Currently, Scott is still a stage IV colorectal cancer fighter. Unfortunately, Scott’s body is not responding to any of the treatments. His cancer has since metastasized to the periodontal lining of his stomach and most recently, his lungs. We refuse to give up and are leaving no stone unturned. Scott will now begin the daunting task of traveling twice a month to Skokie, Illinois to the Block Center for Innovative Cancer Treatment where he will begin a new series of treatments.
Scott is a firefighter in our town of New Britain, Connecticut and a Chief Petty Officer in the U. S. Coast Guard. After his diagnoses, he became unable to work but his fellow firefighters each donated one sick day, which meant he could be out of work for several months. This was just the beginning of the support our community gave us. The community helped us raise money through a GoFundMe page for our family. Earlier this month we hosted a walk in our city that raised over $11,000 (the blue poop chute pop was a big hit!) The support keeps on coming in.
Our family is passionate about raising awareness about colorectal cancer. We looked long and hard to find an organization focused on colorectal cancer and we were lucky to find Fight CRC. That’s why we became fundraisers for the organization.
My son Zack, as an 8-year-old, got us into fundraising. He asked for donations to be made to Fight CRC instead of gifts so nobody else would get sick like his dad. Zack himself was diagnosed with autism at age one and has had many obstacles. He’s pushed himself to overcome and prevail so he can be mainstreamed with his peers. He amazes me every day and what he’s done goes above and beyond me being proud. He is an incredible little boy and thinks of others before himself. Especially his dad.
His birthday wishes since 2015 have been to see his dad feel better. His younger twin brothers donated their birthday to the same cause.
And now, our entire community is involved.
We continue to fight this disease any way we can. It’s not easy, especially with three young kids, but the support so far has been incredible. We hope that our story is one that will inspire you.
We are not special. We are your everyday, ordinary family that works, juggles school, plays sports and is trying to make a difference in some small way. Our family is just one of thousands that go through this daily. Our lives changed forever with three small words almost two years ago to the exact date….you have cancer.
No one can prepare you for the roller coaster of emotions this disease brings with it and how it effects everyone involved. My family looks at life much differently now. We don’t worry that the house is a mess or that the laundry is piling up. Those things can wait.