The EHE Foundation

“My name is Zebrina Lauridsen. I am 24 years old, and I am the mother of a beautiful 2 year old little girl.  I was born and raised in the smack-dab in the middle of the US, Joplin, Missouri. I graduated from cosmetology school, and worked in a salon for a few years. Then I got pregnant and got promoted to the best job ever of being a stay at home mom. I enjoy photography, all things beauty, NBA (go Mavs!), and of course raising my daughter.

I was diagnosed with EHE after my daughter was born, in January 2017, after years and years of me wondering what the large lump on my neck was. I went to multiple doctors who all told me the same thing. It was nothing to worry about, just swollen lymph nodes. I started having severe shooting pains through my neck, and I could barely move my head from side to side. Then I started losing all feeling in my left arm, and I couldn’t even pick up my tiny newborn. Enough was enough. I went back to my doctor and demanded that he do something. They gave me a cat scan, and couldn’t believe what they saw. Our small town couldn’t do anything for me, so they sent me to KU Medical Center. Long story short, I was there for multiple days and they misdiagnosed me with Osteosarcoma. I decided to get a second opinion at Barnes Jewish Hospital in St. Louis. That’s where I found out that I had a tennis ball sized tumor on my c3-c5 vertebrae, wrapped in my spinal cord. They were sure that it was EHE. Although they have seen this cancer before, there wasn’t much they could tell me about it, so I started doing my own research. It’s scary that this type of cancer you can’t really google. The diagnosis made me feel like my world was crashing down. I didn’t know if I would get to see my daughter grow up. Then I found The EHE Foundation, and it helped me in so many ways. It answered questions that my doctors didn’t know the answer to. It gave me peace of mind knowing that I wasn’t alone.

What I find most challenging about EHE is that we don’t have a set treatment, yet. What works for someone doesn’t work for everyone. I have had many failed treatments, and now I’m on the wait and see method. Another challenging thing is that not a lot of doctors know about EHE, so you have to travel for the best treatment. Traveling can be hard when you need to be saving money, and when you have a tiny baby who hates the long car rides. The last thing that I think that makes EHE difficult is that it is often a cancer that doesn’t make you “look sick.”

The EHE foundation is important to me because it is helping spread awareness. It gets patients on the path to the correct treatment. It also helps host a support group for everyone to come together.  I hope The EHE foundation can help future patients when they hear the word cancer to know there is hope. If you are thinking of donating or volunteering to The EHE foundation know that you are not only helping patients, but families. The more knowledge the world has on EHE the faster we can find a treatment plan for the many people battling and hopefully help ease or possibly eliminate future battles.

Just live!”

“My name is Fransheska Nazario, I’m 25 years old and I am from Bolingbrook Illinois. I have a daughter that is four years old and her name is Penelope and we have a pet rabbit named Clover. Spending time with my family is what keeps me going every day. I enjoy arts and crafts, cooking, practicing yoga, and watching movies. One of my favorite motivators of all time is Dr. Wayne Dyer.

I just celebrated my one year cancer anniversary. A year ago, on my 24th birthday I was diagnosed with stage IV EHE and it was probably the most nerve wrecking moment of my life. I knew right away that this would change my life forever and that there would be tough times ahead. I had to be strong for myself and my family. There were a lot of unknowns.

I wish other people knew more about rare cancers in general. Not all cancer is bald, but we struggle just the same. I wish everyone knew that EHE is a slow growing cancer but can turn aggressive at any point. I wish people knew that the EHE foundation and mission has been supported by patient-led fundraising.

What I have found most challenging about EHE is that there is no definitive treatment plan for it.  Everything is trial and error.  The unknowns about this cancer are what really challenge me on a daily basis. When you get diagnosed with cancer, you think to yourself that your oncologist is going to offer you the best plan of treatment, but that’s not always how it works. As a patient you have the right to say yes or no. You have to be your own advocate and that wasn’t something I was expecting.

The EHE’s mission is so important to me because I want to find a cure. When I first was diagnosed I searched on Facebook to find a support group of some type and that is when I found the EHE support page. From the very beginning I was warmly welcomed by many members. I found myself in contact with Lisa DeYoung and she has really been such a help to me during this time. I see her hard work and the work of many other foundation advocates, researchers, and members on a daily basis.

I would highly encourage anyone that is considering donating to please donate on Giving Tuesday!  Every dollar that is contributed to this foundation is saving our lives. It is helping us find new advances in medicine. It is supporting cancer patients, their families, and caretakers. Your donation can change our lives forever. We need your help!

I would like to say thank you to anyone that is taking out their time to read this. Just that alone is amazing. Please share our story with your friends and family so that you can help us spread the word and fight EHE!”

“My name is Hannah Kiner. I live in Harrisburg, PA and I am a mommy to a 2 year old little boy. I like doing arts & crafts, dancing, traveling, outdoor adventuring, and spending time with my family. I am a member of the Westshoremen Senior Color Guard, am an Advocate for Mental Health Awareness, and when I am able to I do service work with Hope in Haiti.

I was diagnosed with EHE when I was 27 years old after nearly a decade of being considered a “mystery patient”. When I first found out I had EHE I did not quite know how to react but was relieved to finally have a diagnosis. We were searching for answers for so long that finding out I had cancer didn’t seem to surprise me. It wasn’t until we were told there is no cure or treatment that reality started to hit home.

Having EHE is frustrating because at this point we are basically all experiments. We are told to “wait and watch” but have no idea when or why our health could take a turn for the worse and when it does, there is little to no treatment. There are very few doctors able to help us and every single appointment is a battle with insurance companies for fair coverage. Having EHE is also hard because people don’t understand that I have cancer since I don’t always appear to be unwell. Some also don’t understand or believe that there is no cure.

The EHE Foundation is important to me because it means there will eventually be more knowledge about this rare sarcoma, as well as a standard treatment for everyone. Without raising awareness and funds the doctors and research teams would not be able to continue to move forward and we would lose hope.”