The EHE Foundation

Carmela Valdivieso

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What do you want others to know about EHE?

“Getting to know other cases through the EHE Foundation, I realized that, even though all cases are very different, uncertainty is something we all share. I have my hopes on the community built around EHE, where I no longer feel alone and trust that there will soon be a cure. I try to live my life one day at a time. My daughters give me the strength I need to feel that there is much more life ahead of me. I would like to say to all of you: don’t be passive patients. Be active protagonists in the search for sympathetic doctors who make you feel confident and sure that they will be able to control, improve and overcome this disease. And to remind you that the EHE Foundation will support you always. You are not alone anymore.”

~ Carmela Valdivieso

Linda Beaulieu

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What do you want others to know about EHE?

“EHE changed how I see life. I received the diagnosis of EHE one year ago, lung removed and a heart bypass. It was gone! But then it returned this Christmas on my trachea. I am now on medication and hoping that the next scan will be stable. It is difficult, and I have had many ‘why me’ moments, but it has also changed me. I now appreciate every day, people and every opportunity even more. I am trying to not let it consume and define me. I truly live by the motto ‘Just live’.The picture is me in a t-shirt I had made for the Garth Brooks concert I am going to this month. The song ‘The Dance’ is about living life.”

~ Linda Beaulieu

Tonja Pektas

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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

Rick Harrington

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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

Michelle Hughes

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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