Archives for April 2022

What do you want others to know about EHE?

“The mental battle with EHE is monumental! The watching and waiting and the not knowing what it’s going to do in my body! That new pain in my ribs….could it be EHE? That weird reaction I had to something…could that be caused by EHE? I have one more week until I get scanned again….what will they find? Is it growing faster? And the list goes on and on! I’m learning to live in the moment and not dwell on the future, but that is hard. On the positive side, EHE has taught me that every day, every moment is precious! Life is precious! Embrace today and soak it all up! I’m not great at it, but I’m getting better. While I still have pain every day, all day, and I don’t want to give this dreadful disease credit for anything, ironically, I have to say thank you EHE for teaching me that every day is full of blessings and immeasurable goodness…the sound of my son’s voice saying “good morning, mom!”, a goodnight kiss from my husband, a call from my college student to say hello, feeling the warm breeze on my face on a sunny day, count it all as blessing because life is sweet and tomorrow isn’t promised! Just Live!!!”

~ Tonja Pektas

What do you want others to know about EHE?

“I was completely shocked when I received my “stage 4 lung cancer” diagnosis. I only had a slight cough–how could that be? But then the doctors were not sure what kind of cancer it was, so they started to perform different biopsies. It took several weeks to come to the EHE diagnosis. The scans to measure, selecting an oncologist, the chemo choices became somewhat overwhelming. I was only 57 years old, I was planning on living to 80! I am currently on Eribulin, and the tumors in my lungs and my chest lymph nodes have stabilized. I have decided to retire and just live my life. I have a wonderful wife and family that really care about me and I really appreciate all that I have.”

~ Rick Harrington

What do you want others to know about EHE?

“Being diagnosed with EHE mere weeks after the birth of my third child was shocking and soul crushing. My head filled with so many negative thoughts after hearing “stage 4,” “metastatic” and “incurable.” I’m a 35 year old, healthy female…or so I thought. I read a powerful message from a fellow EHE patient; “you could die with EHE and not from EHE.” I began treatment, started running and switched to plant based. From that moment on, my drive and determination shifted; I can do this, I WILL do this. As a mother to three children under 5 years of age, I will do everything in my power to be present for my babies and loving husband. I am an EHE survivor with metastatic cancer in my lungs, liver, thigh and knee and I am not letting this stop me from just living.”

~ Michelle Hughes

What do you want others to know about EHE?

For me EHE is learning to live with the uncertainty, pain, and chronic fatigue. In the same day you can feel really well and then suddenly feel really bad. Although you may feel perfectly fine, the pain can hit you like a hammer. It’s also lonely since there are very little cases because it’s a rare cancer. I personally don’t know anyone in my country with EHE, I just know one person through social media with it. I’m truly thankful to The EHE Foundation for all their work, and I want to shoutout the special support group on Facebook which makes me feel less alone.”

~ Martha Iglesias

What do you wish others knew about EHE

“I wish people knew that even though it is rare, there are humans behind this diagnosis. Though I personally am not exhibiting symptoms at this time, scanxiety is something that is a constant cloud over our family. The unpredictable nature of EHE is difficult and different for all so raising awareness is key!”

~ Katherine Czyzewski

What do you want others to know about EHE?

“I want people to know that EHE can be very frustrating. I say this because EHE is so different for each of us. What works for one person, may not work for the next. It also can cause lots of anxiety for us as we wait and watch to see what it decides to do–will it grow or will it lay low for several years and then become aggressive? I believe that is why the motto of Just Live is so important for each of us. We have to press on and live our lives without allowing EHE rob us of our Joy! When you have no control over the circumstances, you simply must Live with a grateful heart for what today brings!”

~ Melissa McPherson