Archives for December 2019

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.

Greetings fellow EHE warriors, caregivers, and supporters! My name is Sarah Bright and I live in Williamsburg, Virginia and I have two young kids. I am an entrepreneur that combined a background in the musical arts with management of not for profit organizations. In 2008, I started my company, The Bright Solutions, partnering with not-for-profit cultural organizations in operations/financial management. My days are spent doing two things I love: managing/building a business and as the CEO for our home.

Since the early days of my EHE diagnosis (2016), I have become an advocate for myself by learning about health, have found ways to build community and social support, and have discovered that we all have untapped strength within us! I get frustrated that EHE is something that interrupts everyday life (doctor’s appointments, scans, procedures, etc.). Yet, the EHE diagnosis encourages us to stay in the moment. So, I honor my moments by laughing a bit louder, loving more fearlessly, and finding joy faster, even amidst unpleasantness. I am honored to serve as Treasurer for the EHE Foundation – an organization that has done so much incredible work in a relatively short period of time! Because I am a Board member, I often hear of research and opportunities before they hit the Foundation website or support page. Fellow warriors, this reinforces my optimism and courage about this highly vast and unpredictable disease. The question is not, “will the EHE Foundation find the cure,” but “when will the EHE Foundation find the cure?”

I encourage you to become an advocate for your own care. And, if you are in a season of giving, please share your gifts and talents with the EHE Foundation. As Treasurer, I can assure you that we are tirelessly working to fund the most important research and to build a Foundation that is reputable and well-respected in the medical community. I wish you peace, love, and joy during this holiday season.

I’m Amanda Holland and I live in Anchorage, Alaska. My husband Logan and I have been married since 2011. When we were married I was blessed to become a mom to his son, Logan M. (18 years old), and we have two beautiful little girls: Madilyn (5) and Hope (6 months). I’m also a dog mom to Skye. I’m a Head Start teacher and was recently promoted to help train new teachers. I love that I’m able to make a difference in these kids’ lives and hopefully make a positive impact on their future.

I was diagnosed with EHE in November 2014, when Madilyn was 4 months old, which made it even more terrifying. I had just had what I was told was some cysts removed from my shin and ankle and while having the stitches removed the PA casually says, “Well it’s not what we thought it was, but I don’t think you’ll need chemo right away.” I was trying to comprehend what he was saying as baby Madilyn was sleeping in the car seat on the floor. I asked what it was and his response was, “Well I don’t know how to say it and I don’t want you to go and google it.” Pathology from the Cleveland Clinic determined that it was in fact EHE. I was sent to Seattle in January 2015, to make sure there were clean margins, as my local oncologist had to google EHE because he had never heard of it. I had more tumors pop up and was sent back to Seattle in January 2017 to have them removed again. Scans have shown my lungs and liver to be clear. I’m currently on a “wait and watch” plan.

The thing about EHE is that you will never be completely “in the clear.” It will always be lurking in the background waiting to pop up. There is no set treatment plan. Something that helps one person may not help someone else. This is why The EHE Foundation is so important to me. We are raising money to help find treatments and, hopefully, a cure.