Archives for November 2018

Hi, I’m Maggie Cameron. I’m a mother, cousin, designer and Crohn’s and EHE survivor. I live just south of Pittsburgh, PA. I love to spend time with my family, work (yes, I love it), run and ski!

My EHE story started with my diagnosis of Crohn’s disease in 2009. The imaging showed a “thing” on my liver. It appeared to be a tangle of blood vessels and the doctors diagnosed it as a benign hemangioma, and all agreed to keep an eye on it.

To deal with my recurrent, post-surgical Crohn’s disease, the decision was made to add Humira, a powerful immunosuppressive biologic therapy to my treatment. After six months on Humira and repeat imaging, doctors were surprised to see that the hemangioma had grown significantly and was now quite large and had taken over most of the left lobe of my liver. Humira was immediately discontinued and a liver biopsy scheduled. The tumor was identified as EHE – it was something that my GI doctor had never heard of. Tissue was sent to the Cleveland Clinic for confirmation since it was such an unusual and rare diagnosis.

My diagnosis was confirmed in early September 2011, right before my 40^th birthday. This was all very overwhelming and surreal. I Googled it, but all I could find was a Wikipedia entry and a few random mentions in some medical journals. The EHE Foundation hadn’t formed yet, and there was no Facebook support group. I was alone. At least that’s how it felt.

I was fortunate to be a candidate for surgical treatment. As I began to look for a liver surgeon, I found a photo of a transplant surgeon in Pittsburgh. He had a kind smile and a wore a bowtie. For whatever reason, I was drawn to him. I made an appointment with Dr. Wallis Marsh at UPMC. His demeanor was incredibly reassuring – he had resected someone with EHE 17 years prior! What are the chances of that? He joked, “My insurance agent has this. I resected her 17 years ago, and she’s still my insurance agent.” I felt incredibly lucky to have found a doctor who had seen this before and he was right in Pittsburgh. He was an angel for me at a time when I felt very lost. Since then, I’ve had two additional liver tumors ablated, and I’m now following with Dr. Melissa Burgess at Hillman Cancer Center in Pittsburgh.

For me, living with EHE is pretty manageable. The toughest part is convincing people outside of our community that it is serious and unpredictable. I walk this weird line of feeling guilty because I’m certainly not a sick as some people with EHE and feeling unsettled because that could change at any time. With no clear treatment path, “watch and wait” seems to be the best treatment for me right now.

The formation of the EHE Foundation gave me an incredible sense of gratitude. Here were women who were dedicating their precious time and energy to really advancing the medical discussions around rare sarcomas and especially EHE, to try to find a treatment or a cure. I am eternally grateful for their continued hard work. It’s absolutely humbling. This is a group of passionate people who have significantly changed the conversation and awareness around EHE and rare sarcomas. Because the EHE Foundation is so connected to its community, donating to it has a profound and measurable impact on the people and families touched by this disease.

My name is Jennifer San. I was first diagnosed with EHE in Dec 2017 after having a biopsy on two tumors that were removed from part of my left lung. I’ll never forget the day and the look on the doctor’s face when he gave me the news. When he opened the door to the room I knew by the look on his face the news wasn’t going to be good. His exact words were “All along I thought you had a rare tumor, but I wasn’t expecting you to have an even rare form of cancer”. The nurse came in next, to tell us about our next steps, and she said in all her 18 years in nursing she’s never seen this diagnosis.

My heart just broke and my husband just held me in his arms and told me everything would be ok and that we would get through this together.

I live in Weymouth, Mass which is just south of Boston. I have a 13 year old daughter and have been with my husband, for 9 years. I’m a Broker Commissions Specialist for a health insurance company. I’ve worked in health insurance for over 20 years.

I love cooking big family dinners for my whole family. We all just love to sit around the dinner table and laugh and joke with each other. I truly live for my family. My husband and daughter motivate me to keep the EHE fight going. They won’t give up on me and I won’t give up on them!

At this time there is not a lot of information about EHE and therefore it is being misdiagnosed.  EHE is a very complicated and unpredictable disease. People think just because I don’t “look sick” that nothing is wrong with me. Even if I feel good I can’t let my guard down because I never know what the next hour or day will bring. You might be feeling great and then out of nowhere be in tears with severe pain. You need to learn to Just Live with an unpredictable disease.

The EHE Foundation’s mission is so important to me because right now it’s the only organization who advocates for patients in finding a cure and developing a standard of care.

We have so many people get the wrong care because not a lot of doctors have the right training that is need to treat it. The foundation can help bridge this gap.

Your time and donation will go towards the vital research that is needed to help find a cure and to help develop a standard of care for treating this disease. The EHE Foundations doesn’t get any funding from the government or big corporations, even though we have people more and more people every year who are being diagnosed with EHE.

Hi, my name is Jenni and I live in Columbus, Ohio. I am the mother of a wonderful, nine year old daughter and happily married to my spouse of 18 years. I enjoy camping, hiking, playing board games, and watching Ohio State Buckeyes football.

I was diagnosed with EHE on December 29, 2018 after a scan of my liver due to having a pain in my side. I was 42 years old when I was told that I have such a rare cancer. The first oncologist I spoke with said she had never heard of EHE and they could not help me. That’s when it hit me how rare EHE really is.

The EHE Foundation gives me hope. Being diagnosed with a rare cancer that has no treatment and is often fatal, I felt so alone. It meant the world to me to be able to connect with other EHE warriors. The EHE Foundation has provided me information, connections and support during the most difficult time of my life. Please consider donating to The EHE Foundation as every dollar means the world to us.

In order to find treatment for EHE, we need basic research to be done. Many other cancers receive federal funding for basic research but with EHE, most donors are patients. If you are looking for a non-profit where your dollars will truly make a difference, you have found it with 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!”