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My Journey with Epithelioid Hemangioendothelioma

Posted on December 08 2015

My Journey with Epithelioid Hemangioendothelioma
After my youngest son was born in Dec 2012, I wasn't myself. I just didn't feel good. I blamed it on a new baby, stress of 4 kids, sleep deprivation, hormones. As time passed, it didn't get better and I developed a pain in my right side that over a matter of months became quite severe. I finally relented and went to the doctor. Tests, and more tests, revealed nothing of significance except for a few gallstones. So I asked to meet with a surgeon who agreed to take out my gallbladder to see if it would alleviate my now constant pain.

The results of that surgery changed my life forever. A large tumor, and several smaller ones, were found on my liver when they went in to remove my gallbladder. No evidence of other tumors could be seen in my abdomen and initial tests said the tumor was benign. But because it was causing pain, my surgeon suggested we would likely need to remove them along with 65% of my liver. We set an appointment to discuss resection for 3 weeks hence. I arrived alone for that appointment, thinking we would just be discussing my upcoming benign tumor removal. Instead, I was informed that my tumors were in fact, cancer, and very rare, as the local hospital couldn't determine what they were and had to send them to the Mayo Clinic for review. The diagnosis was Epithelioid Hemangioendothelioma. A rare vascular sarcoma. 1 in a 1,000,000. Now they were saying I would lose up to 75% of my liver or possibly need a liver transplant. After further review, it was decided I should go to University of Washington Medical Center in Seattle (1,500 miles away) for further testing and likely surgery.

I underwent a successful resection and recovered. No adjuvant therapy is available for my cancer- as they have not yet developed any treatments for it and all chemotherapy and radiation that is tried is done experimentally. So instead we watch and wait. It is common for the cancer to recur and so far it appears, while my liver is clear, that I have metastasis in my spleen and lungs. They are still small and only slowly growing so we are still watching. It is frightening to have a cancer for which so little is known. And for which so little can be done. But for today, I am doing fairly well.

The good news is that we have a doctor and medical researcher at the Cleveland Clinic by the name of Dr Brian Rubin. He is currently the only researcher studying EHE. He has made great strides and more are just on the horizon. I helped to co-found a charitable foundation to raise money and awareness for this rare cancer. There are many other sarcoma patients in similarly dire straits- little is known, little can be done, no one is studying. We are so grateful to Dr Rubin and his small staff for the many things they do to help the EHE patients around the globe. Our efforts are increasing his staff and paying to keep his lab running so that our dream of successful treatments, and some day a cure, will be a reality. Thank you for considering a purchase of a Bravelet in support of The EHE Foundation. Patients and their families around the globe thank you too.

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