Meet the Men & Women Fighting EHE in the Lab
In October of 2015, Justin Bryan endured a 10-day trek up 19,341 feet of elevation as he scaled the peak of Mount Kilimanjaro in Tanzania. Not too shabby for a man who was told 12 years earlier that he would need to have his leg amputated due to EHE.
The year was 2003, and Bryan was serving his country in the United States Air Force when doctors informed him he had cancer in his right leg. After two masses were removed, the disease was also found in his leg’s bone and soft tissue.
“As a young person, you’re thinking how the rest of your life is going to be changed, if you even have a rest of your life,” Bryan said recently. “Certainly I was worried about dying, about it killing me. I was worried about losing my leg.”
Accompanied by his family, Bryan received a second opinion from an oncologist who felt the isolated nature of the cancer made it a prime candidate for radiation. Though the EHE in his leg was not completely eradicated, it has remained indolent and has not spread.
Two years ago, his wife Kate got the news most loving wives likely dread: her husband was planning to climb a mountain. Not just any mountain, but the highest summit in Africa, one that is well above the life-threatening high altitude pulmonary edema (HAPE) elevation grade.
But as an EHE warrior, Justin is all too familiar with life-threatening challenges. Along with three friends, “Tuff” also made the trip up Mt. Kilimanjaro. Tuff is the new mascot for The EHE Foundation, and Bryan wanted the furry stuffed animal to reach the peak with him to prove to other EHEers they can still achieve amazing things.
For more information on Justin’s incredible journey, visit http://www.thesmallthingsblog.com/2015/10/climbing-mt-kilimanjaro.
Mandy O’Connor, a York native, Penn State graduate, and THON participant, fought Epithelioid Hemangioendothelioma (EHE) for more than a decade. EHE is a rare and often deadly vascular sarcoma (cancer) that largely affects adolescents and young adults. Mandy served on planning committees for Relay For Life and volunteered as a Team Captain and routinely spoke at American Cancer Society events. She was passionate about fighting cancer, especially those primarily targeting children. For her 30th birthday, she raised money for Alex’s Lemonade Stand, an organization trying to eradicate childhood cancer. Mandy passed away April 5th, 2015, at Johns Hopkins Hospital at the young age of 31.
Ava is an eight year old girl from Langhorne, PA, where Sesame Place is located. We are about 25 miles from Center City Philadelphia. Ava loves swimming and going to Sesame Place, since it is a water park. Ava loves drawing and takes an Art class on Saturday mornings. She also takes dance class (Hip-Hop) and loves to sing.
Ava loves music. She loves Taylor Swift and One Direction. Her first concert was the Beach Boys when she was five years old. She has also seen One Republic in concert.
Ava is just finishing Second grade at Herbert Hoover Elementary. Ava likes school. She is outgoing and has many friends. Ava has an older brother, Nicholas, who is ten. They are very close. Ava also has eleven cousins and is very close with all of them too.
Ava was diagnosed with EHE February 2014. She has tumors in her liver and lungs and is currently stable and treated with Sirolimus with quarterly monitoring.
We are looking forward to a great summer, beginning with a trip to Hawaii through the Make-A-Wish foundation. We pray that we beat this disease and Just Live!
On April 22, 2014, Delaney was diagnosed with an extremely rare form of cancer called Epithelioid Hemangioendothelioma, also known as EHE. This form of cancer has absolutely zero funding or attention from outside sources because so few people are affected by it. Every penny of research has been funded by EHE patients, families, and friends. EHE families are trying to raise funds for EHE research. We hope to find a cure, or at least a treatment, to help Delaney and all of our EHE family. There are 20-200 people worldwide that are diagnosed with EHE each year. This makes Delaney literally one in a million. Delaney was diagnosed with EHE after having a tumor removed from her left bicep. She has handled all of this like a champ and she wears her scar like a badge of honor. There is not a cure for EHE or even a set treatment developed. Every patient, including Delaney, is considered experimental. Her current course of treatment will be full body CTscans/MRIs/PETscans every three months…and to treat each tumor individually if and when they develop. Her next set of scans is in June. We need Team Laney to help raise funds and awareness! Our family is amazed, humbled, and truly grateful for the support and love from all of you! Click here to visit the Team Laney Cure EHE Facebook page.
Georgiana has a very special place in the hearts of the people who knew her. She had an aggressive type of EHE that at the time of diagnosis already spread to many sites of her body. She underwent very tough treatments, harsh chemo, radiation, surgery, but was one of the most positive enthusiastic members of our group. Never complaining, never bitter, never angry. Always supportive and ready to help. She called herself once “a brave tin solder.” She was. Stoically enduring pain with the strength of a super hero. Being already very sick, not only did she give tremendous amount of time and energy to our cause but she also volunteered to support children with cancer in her hometown Bucharest, Romania. Three months before she died, Georgiana posted a tattoo pattern she wanted to get. It was a heart beat strip with Just Live at the end. She never got that tattoo, didn’t get a chance. She died at age of 29. A beautiful girl with beautiful soul. We adapted “Just live” as our logo soon after her death.