Ashley’s Story: “Today Matters.”
When Ashley discovered a mass in her own liver, her life changed in an instant.
As a diagnostic medical sonographer, she was used to helping others navigate medical uncertainty. She never expected to face it herself.
“I am a diagnostic medical sonographer, and I found a mass in my own liver,” Ashley said. “What started as something I noticed myself quickly turned into a whirlwind of imaging, biopsies, waiting, and uncertainty.”
After multiple tests, biopsies, and pathology reviews, Ashley was diagnosed with multifocal epithelioid hemangioendothelioma (EHE) confined to her liver.
For Ashley, one of the hardest parts of the diagnosis was not just hearing the word cancer, but stepping into a world with no clear roadmap.
“Being diagnosed with a rare cancer is terrifying, not just because of the word ‘cancer,’ but because there is no clear roadmap,” she said. “There are no straightforward guidelines, and even the top experts don’t always agree.”
Determined to understand her options, Ashley sought opinions from several leading cancer centers across the United States, including MD Anderson, Memorial Sloan Kettering, Dana-Farber, and others. Instead of one clear path forward, she received very different recommendations, from watchful waiting to liver resection to liver transplantation.
“Hearing such different plans was overwhelming and emotionally exhausting,” Ashley said. “It forced me to sit with decisions that carry life-altering weight, without a definitive right answer.”
At 35 years old, Ashley is also the mother of four young children. That reality has shaped every part of how she experiences EHE.
“My greatest fear is not being here when they need me,” she said.
For Ashley, that fear lives not only in future milestones, but in the everyday moments of motherhood.
“It’s not just about missing graduations or weddings. It’s about the everyday moments,” she said. “My daughter’s first heartbreak. My sons needing guidance. The nights they feel overwhelmed and need their mom.”
Two of Ashley’s children live with Type 1 diabetes, and two have celiac disease. Their needs are constant, and so is her love for them.
“I fear not being there to manage the hard days, to advocate for them medically, to sit in hospital rooms if needed, to count carbs, to calm fears, to show up when life feels heavy,” she said. “I am very much needed, and the thought of not being here when they need me is the hardest part of this diagnosis.”
She also holds tightly to the hope of being present for the moments still to come.
“More than anything, I want time—time to mother them fully,” Ashley said.
Living with EHE has meant learning to live with uncertainty every day. Ashley is currently on systemic treatment with sirolimus, but that does not erase the emotional burden.
“Every scan brings anxiety,” she said. “Every differing expert opinion weighs heavily. It is the hardest thing I have ever faced, carrying both fear and responsibility at the same time.”
Ashley says the lowest point came in the days and weeks after her diagnosis, when the rarity of EHE made everything feel especially isolating.
“There was so little information available,” she said. “I felt like I had fallen into a world that very few people understood. I had no roadmap, no clear plan, and no hope at that moment, only fear.”
Another deeply difficult moment came when one of her scans showed growth between imaging. That same week, her aunt passed away from cancer.
“It brought me right back to that original low point,” Ashley said. “The grief, the fear, the ‘what if this is my story too?’ thoughts.”
While Ashley says she cannot yet point to a clear high point in her journey, something important changed when she found the EHE community.
“Once I found the EHE community and began learning more, I felt less alone,” she said. “Knowledge didn’t erase fear, but it gave me grounding. Community didn’t fix the diagnosis, but it gave me strength.”
The EHE Facebook community became one of Ashley’s greatest sources of support. Connecting with others who understood the diagnosis in a way few people could helped her find guidance, reassurance, and practical wisdom.
“Connecting with others who truly understand this rare diagnosis made me feel less alone,” Ashley said. “Their willingness to answer questions and share resources helped me navigate where to seek care and what questions to ask.”
Through it all, her family has been her anchor.
“Most of all, my family has carried me through this journey,” she said. “Their strength, love, and steady presence have been my anchor.”
Living with EHE has taught Ashley that courage does not always look like certainty. Sometimes it means continuing on without it.
“I’ve learned that living with EHE requires courage in uncertainty,” she said. “It requires advocating for yourself and asking hard questions. And it requires allowing yourself to feel both fear and hope at the same time.”
For others who are newly diagnosed, Ashley’s advice is simple and heartfelt: do not try to carry this alone.
“Lean on your support system,” she said. “Utilize the EHE community. There is invaluable knowledge and lived experience there. Ask questions. Listen to others’ stories, but also remember that every case is unique.”
She also encourages others to advocate for themselves and seek expert care.
“Be your own advocate,” Ashley said. “Get second and third opinions. Seek out sarcoma specialists and major cancer centers. You deserve clarity and careful consideration.”
Above all, Ashley believes in extending grace to yourself and holding on to the gift of each day.
“This diagnosis is overwhelming,” she said. “It is okay to struggle. It is okay to be scared.”
Her faith has become an important source of strength and perspective.
“I go to bed each night thanking God for the day I was given, and I wake up thanking Him for another one,” Ashley said.
In the midst of all the uncertainty EHE brings, Ashley holds tightly to one truth:
“This diagnosis has taught me that every single day is a gift,” she said. “Every day is worth living. Every day is worth celebrating. This journey is uncertain, but today is certain. And today matters.”
