Archives for November 2019

I’m Melissa McPherson from Springtown, Texas. I have been married to my husband, Scott, for 29 years and we have two children. Jessica is 25 and Logan, 22, is a senior at The University of Texas at Dallas. I am a high school counselor and cheer coach at Azle High School.

I was diagnosed with EHE in December, 2015 when I had a .8cm lesion removed from the left lateral canthus. One small nodule in my lung was also discovered in the CT scans after diagnosis. My ophthalmologist at MD Anderson performed another resection in March, 2016 to ensure negative margins. I was put on the “wait and watch” protocol where over the next two years, nodules continue to spread in lungs, liver, thyroid and spleen.

When diagnosed, emotions were pretty much all over the place and fear had taken over. I did as much research on EHE and holistic healing as I could. Feeling helpless with just waiting, I decided to do as much as I could to improve my fundamental health by eating a plant based diet and improving the environment in our home. I began to remove products that contain toxins in hopes to decrease our exposure to these chemicals. Scans from 2018 to 2019 show that I am stable with no new nodules.

For me, the most challenging part of EHE is the fear of the unknown. This cancer can be stable or slow growing until it’s not. Worrying when the switch will flip and turn the EHE to aggressive is a constant battle. I find peace when I relinquish that burden to God and just live. I have become empowered through the changes that my family has made in nutrition, removing toxins from our home, and living in the moment. I wish that people knew that EHE is unpredictable, as is life. I encourage everyone to live life like they received a diagnosis. Face your fears with bravery, live life to the fullest by simply being present, do not take a single moment for granted with those you love, and live in a constant state of gratefulness for the life God has bestowed upon you.

The EHE Foundation’s mission to research and to advocate for and supporting each of us has been a blessing to me personally. The community the EHE foundation has created has brought comfort and fellowship between families affected by EHE. Most importantly The EHE Foundation provides us with information on treatments. They are committed to research so that we increase our understanding of EHE, are correctly diagnosed, and find therapeutic treatments. The EHE Foundation and the members of the EHE family raise all the funds used for research. There is no donation too small because together the impact of each gift is large. The EHE Foundation has united us and given a voice that is being heard by the nation’s sarcoma community.

I am Michael Proctor of Fayetteville, NC. I am a former Army Medic that was diagnosed with EHE while serving on active duty in Afghanistan. I have an 8 year old daughter, who is the light of my life. I also enjoy fishing.In early 2010, I was deployed to Afghanistan with Chosen Company of 2nd Battalion, 503rd Infantry of the 173rd Airborne Brigade and noticed a mass in my right thigh had grown rapidly over the previous month. I was sent to Al Udeid Air Force Base in Qatar for evaluation. Doctors completed a wedge resection and I was initially told the pathology showed no cancer, so I was expecting to return to my unit in Afghanistan after finishing physical therapy. About 2 weeks later they called me in and told me upon further testing that I was positive for EHE. I didn’t know what to think. I was mostly scared about my future, but I also felt like I was leaving my brothers behind because I was sent back to Italy for the remainder of the deployment. After a few months I had a PET scan in Germany and it was positive for cancer in my liver. I nearly fainted because at that point I thought my life was over.

My EHE journey has been a whirlwind. I’ve lived with EHE for nearly 10 years and I’ve experienced every possible emotion along the way. I feel incredibly lucky to have survived this long and also have been able to live a pretty normal life. Since 2010, I’ve had a right thigh resection, 4 liver surgeries (3 resection and 1 lobectomy) and, most recently, a right lung lobectomy in March 2019. The most challenging aspect of EHE is that it can always come back even if doctors think it’s gone for good. There’s always a chance it will grow somewhere else because on a molecular level it is always there.

My advice for newly diagnosed patients is, “Do not accept that EHE is the end. Every case is unique. Life never goes as we plan it but even a cancer diagnosis can put you on a path to wonderful things. Try and stay as positive as possible and don’t let EHE dictate how you live your life. Try and make the best of your situation every single day. You never know where it may lead you.”

The EHE Foundation is important to me because they have SO MUCH information. For years, I basically knew only what my doctors told me, which wasn’t much at all. The information and knowledge I get from The EHE Foundation family empowers me to make better informed decisions about my healthcare especially when facing tough decisions. There are plenty of groups and diseases you could donate your time or money to so why EHE? Because they are doing the right thing. People struggling with EHE can email or call with questions and volunteers are always there to offer advice or encouragement. They raise money for EHE specific research and are highly involved in the medical community to help find a cure. It is obvious just reading patients’ posts in the support group to see what an impact this foundation and community has on our lives.