Delaney Wahl seems like any other high school student, but two words make the Bay Port senior one in a million.
Epithelioid Hemangioendothelioma (EHE).
EHE is a rare and often deadly vascular sarcoma form of cancer that produce unpredictable tumors which form on blood vessels most commonly found in the arms, legs, lungs, and liver.
After years of misdiagnosis, Wahl found of she had EHE in 2014 after a tumor was discovered in her left bicep.
“My immediate thought was like, wow,” Wahl said. “There’s not a way to put that into words. If you haven’t been there you don’t know. But I guess shock is just the first thing. I kind of sat there for a second and said ‘Okay, I’m going to be okay. I’m going to work through this.’ I think I kind of shocked my mom with that response. I’ve just stuck with that attitude that we’re going to get through it. This is crazy, but we’re going to be okay.”
EHE affects 100-200 people every year, and there is currently no know cure or an established treatment. Each patient diagnosed with Epithelioid Hemangioendothelioma is considered experimental.
“I was one of 11 teenagers at the time (of her diagnosis), and of those 11 teenagers only 4 of them are still with us here today,” Wahl Said.
Her family quickly found there was no funding for EHE either. So Delaney and her mother Julie formed the EHE Foundation in 2015 to increase awareness of EHE, pursue scientific research, bridge clinical information between researchers,providers, and patients and advocate for and support EHE patients.
Julie is currently the President of the EHE Foundation.
“My mom and I joined a Facebook group pretty early on into my diagnosis, and everyone on there is like ‘I hope they find a cure, I hope something happens, I hope they can find a treatment,” Delaney said.”
“My mom and I have always been doers, and we looked at each other like there is no ‘they.’ Nobody is going to do this if it’s not us.”
Though she is currently battling tumors in her lungs, Wahl still competes for the reigning state champion Bay Port girls soccer team. If you watch her you wouldn’t know anything is wrong.
“My cancer doesn’t respond well at all to typical forms of chemotherapy and radiation, which is why I was able to keep my hair,” Wahl said. “I’m actually on an experimental form of chemo right now, and hoping that it works. I take pills in the morning, I take pills at night and I get scans every couple of months. My next scans are actually coming up in June. I just live day by day. If I get my heart rate up really high I get nauseous, so I take nausea medicine before practices and before games. I just handle side effects as they come.”
Bay Port girls soccer coach Brooke Mraz says Wahl’s path can help give her peers valuable perspective.
“It does help them to step back and say she’s someone that we should look to and follow and be inspired by because in the bigger picture she’s got it right,” Mraz said.
“On the sidelines she’s a voice of positivity. On the field she’s a voice of positivity. She’s a work-horse. So even if it’s not inspiring through the journey she’s on, she’s still inspiring through her actions and words in ways that’s contagious.”
So how does Wahl stay so positive?
“I have always just thought you can only control what you can control, and one of those things is your attitude,” she said. “Cancer is coming at me hard and strong, so I’ve got to go back as hard as I can.”
And when times get really tough, she thinks about those she’s got to know and lost along the way.
“They wouldn’t want me to be sad and give up. They would want me to keep fighting. I wake up every day with a smile on my face, and I think this is another day where I get to represent everybody that I lost and another day to work for a cure for people that are going to be diagnosed in the future.
“It’s a way to work for myself, work for everybody else, and ultimately I just want to help people.”