My Sister. My Hero.
My sister, Mom Jr. as I affectionately call her, has been one of the closest people to me my entire life. A bond that was forged from the moment I was born as I spent a week in the hospital at less than a month old with pneumonia. She was 11, and stayed the night with me on a few occasions so my Mom could get back to the house and tend to my brothers, who were 13 and 4 at the time, and so I wasn’t alone. I can’t recall this time in my memory, I was too young obviously, and despite it being unbeknownst to me I was in the fight for my life and my sister stayed by my side.
31 years later and the tables have turned. Now my sister, Heidi Chatterton, is in the fight for her life against a very rare form of cancer — Epithelioid Hemangioendothelioma (aka EHE). This is a rare vascular sarcoma that is composed of mostly round cells that can arise in soft tissue, bone and organs such as the liver and lungs. She was diagnosed nearly three years ago, when a large tumor was discovered on her liver during an unrelated surgery and the road has been fraught with unknowns ever since. The first step was a 2/3 reduction of her liver to remove as much of the tumor as possible, with a very difficult recovery as her liver regrew. But growths haven’t stopped, doctors’ visits have increased. Even trips to far away specialty hospitals and clinics have taken place to try to find a course to remission. But, very little is known about this type of cancer, and minimal research is currently being conducted. The answers haven’t been consistent.
Now, Heidi is embarking on a scary and painful phase in her treatment — chemotherapy. I wish I could be by her side every minute of the day, but alas we are both adults, I live in Seattle with my family and she lives in Anchorage with hers. Thankfully, she has a wonderful husband who has super human energy to work a full-time job to support their family financially, while shepherding three young boys (all under the age of 10, she also has a wonderful daughter that is in college) and taking care of my sister. She also has a wonderful circle of friends that are always willing to drop everything to help her and her family. This doesn’t change the fact that I wish I could be by her side, but I’m comforted knowing there are people that surround her that love her as much as I do.
Chemotherapy is brutal — I don’t know from personal experience, only second-hand. I also know that Heidi is going to lose her hair — something that those of us that are lucky enough to still have theirs take for granted and often complain about, for some strange reason. So, I’m shaving mine off. If I can’t be by Heidi’s side, at least I can be with her in spirit — bald head and all. And I’m going to keep it shaved until hers grows back, no matter how long it takes.
With the shaving of my head, which will take place during a barbecue at my office on Thursday, May 25th — Heidi and I are raising funds. In the name of funding research and some of Heidi’s rising medical bills. No, these funds won’t go entirely to paying Heidi’s medical bills (half will) — she wouldn’t allow that. Not because that isn’t a noble cause on its own, but because she knows how many other people are impacted by this disease and how research and more understanding is the only true solution to finding a light at the end of the tunnel. She has too many other people in her mind before herself to allow all money to go directly into her pocket, it must go to the benefit of others too. As I mentioned, half the money will go to her medical bills, the rest of the money will go straight to the EHE Foundation, which was founded to support doctors and researchers in the treatment and cure of EHE, and to improve the quality of life of patients and their families.
If you can, please donate. Any amount, seriously. The day of the shaving, we will post before pictures of both of us with our hair and the after with bald heads. Even if you can’t donate, please share this with as many as you can and help spread the word. Not to shine a light on Heidi, and definitely not on me, but to shine a light on EHE. So that researchers and doctors can discover better treatments, and hopefully a cure. Many people and families need this hope — and you can make that happen not just monetarily, but through awareness and education.
I want my hero around for many years to come, and I know many others hope theirs are too. Thank you for dedicating a little bit of time to read and listen — please help us find others that are willing to do the same.
PS — Cancer sucks.