I am Amanda Roach from Gastonia, NC. I’ve been married to Philip for 12 years and my two children are Henry (age 7) and Lucy (age 5). I love spending time with my family, which also includes our two fur babies Gemma (a bulldog) and Dino (a husky/shepherd) mix. I’m a high school science teacher when my cancer allows it. I’m passionate about science and love being a teacher.
I first had symptoms in June of this year and was officially diagnosed on July 20th of this year. Initially hearing the word “cancer” was hard, but my doctor was very comforting in assuring me that EHE is typically very stable. That turned out to be false in my case. My EHE is very aggressive. My initial tumor went from 6cm to encompassing the entire left lobe of my liver in one month. I did have that lobe removed, but spots showed up in the remaining portion of my liver about a month after surgery. Since the end of September, I went from two medium sized spots to having too many to count. I did undergo chemotherapy, but it did not work. Now I’m waiting on a new liver. My diagnosis has truly been life changing for everyone. Most days I can barely get out of bed. I can’t do things with my two young children or my husband. I am currently waiting on a living donor because that is my only hope right now. My MELD (model for End-Stage Liver Disease) score is only a 25, which means there not much hope for a deceased donor at this time.
Research is so important for all EHE patients because there is no official treatment. Doctors have to make guesses and hope they are correct while their patients’ lives hang in the balance. The EHE Foundation funds research, connects patients with resources, and connects us to one another for support. I wish people knew that everyone’s EHE is different. EHE can show up anywhere at any time and change its behavior very quickly. You may also send a check to The EHE Foundation, 1561 Hopi Ct, Hobart, WI 54313.
