I am Missy and I lost my son, Harrison, to EHE. Harrison grew up in Portage, Michigan. He was a good student and young man of faith, who enjoyed being around friends and family. He participated in cross country and track in high school and continued his love of running until his cancer diagnosis. His sister, Maddie, was his best friend, and they constantly had private jokes and pranks going between them. He loved his dog, Slugger, who was a constant presence during his illness. He once said “Dogs aren’t our whole life, but they make our lives whole.” He was happiest when he was surrounded by friends and family. He had the uncanny ability to always meet people where they were and be a comfort to them, even in his hardest times. He deserved more than 22 years, but he lived those 22 years well.
Harrison received his official EHE diagnosis on September 28, 2015 in Kalamazoo, Michigan. He was 19 years old. Our first reaction, of course, was devastation. Harrison immediately went into fight mode, so we did, too. I quickly became an expert in reading labs, X-rays, CT scans, and MRIs. Harrison was blessed with a liver transplant on March 24, 2016 at the University of Michigan. When we found out that the EHE came back in his lungs and pleura, only 18 months after the transplant, we quickly sprang into action again. This time was much different. The pain he experienced was immeasurable. The severity was realized quicker.
What we want people to know about EHE, first and foremost, is that it exists! No one locally has even heard of EHE, so we were sent to the University of Michigan to find a doctor who had some experience with it (with a second opinion at Mayo Clinic). We also want people to know that rare cancers, especially EHE, don’t have a lot of funding to do research to find a cure. And right now, there is no treatment or cure for EHE. It is devastating for an EHE patient and their families.
While Harrison’s story doesn’t have a happy outcome, his life was one well lived. He didn’t want EHE to define who HE was. Remembering his life, instead of the cancer, is an important key to healing after the trauma. If Harrison were here today, he would say “Stay strong. Keep going. Even when it’s hard, you have to appreciate each day and have faith things will get better. In life you have to make choices; always choose joy.” As his mother, I would tell people to NEVER forget to tell your family and friends how much you love them. Don’t miss a day of appreciating your life.
#TeamPlutaForever Please help us support The EHE Foundation and its mission because no other family should go through what we went through. We need to raise awareness and research funding so people, like Harrison, can live a long life, full of adventure and love.