Cato’s Story: Learning to Live in the Present
For Cato, the beginning of her EHE story did not come with dramatic symptoms or a clear warning sign. It began quietly, almost invisibly, with fatigue and a routine blood test that seemed, at first, to lead to something minor.
That first test showed abnormal liver values and a vitamin B deficiency. She was told to take vitamins and that her liver numbers would likely improve. Instead, they continued to rise.
By the end of December 2022, more bloodwork led to an ultrasound, and from there, life accelerated into scans, tests, and a biopsy of her liver. What followed was a week of agonizing uncertainty, as doctors tried to determine whether they were looking at an infection or something malignant.
Then, on January 23, 2023, everything changed.
“My doctor called me early in the morning and asked me to come in, together with my partner and my mother,” Cato said. “That day, I was diagnosed with Epithelioid Hemangioendothelioma (EHE).”
The hospital where her diagnostic journey began did not have enough experience with such a rare disease, so Cato was referred to the university hospital in Leuven. There, she finally began to get more answers, but not the kind that bring immediate relief. Scans showed tumors in her lungs, liver, and both hips.
At first, there was no treatment plan. Because it was unclear how long the disease had been present or how quickly it was moving, her doctors recommended watchful waiting. But after three months, a full-body MRI showed progression in her bones, liver, and spine. The disease was moving faster than expected, and treatment could no longer wait.
Before beginning therapy, Cato faced another deeply personal layer of decision-making. Because she and her partner hoped to have children, and because the medication could affect her fertility, she first underwent hormonal stimulation so her eggs could be retrieved and frozen.
Only after that was she able to begin everolimus.
In August, after those difficult months of diagnosis, uncertainty, and major decisions, she received the kind of news every patient hopes for: stability.
“A high point for me was hearing that my disease was stable after starting treatment,” she said. “That moment gave me hope and showed me that even in a difficult journey, there can still be positive moments.”
Now, three years into life with EHE, Cato remains on everolimus. She lives with fatigue and a weakened immune system, but she has tolerated treatment relatively well. Every four months, she undergoes a full-body MRI. Life is measured differently now—by scan intervals, by small shifts, by what remains steady.
That does not mean the fear is gone.
Like so many people living with EHE, Cato has had to learn how to live with uncertainty rather than wait for it to disappear. One of the lowest points in her journey came not only at diagnosis, when, as she put it, “my whole world stopped,” but again in August 2025, when scans showed slight progression in her liver. For a time, it felt as though the medication might no longer be working. Her doctors shortened the interval between scans and raised the possibility of a liver transplant, a conversation she described as deeply confronting.
Then, in December 2025, there was at least some relief: the progression had not worsened.
That rhythm—fear, reassessment, cautious reassurance—is one many EHE patients know well. Cato speaks about it with honesty, but also with remarkable steadiness.
“Living with EHE comes with a lot of uncertainty, and that is something I find difficult,” she said. “At the same time, I try not to let that fear take over my life.”
That perspective has been hard won. She says EHE has taught her to appreciate the present more fully and to focus on what she can still do, rather than on what she might lose. It has also taught her something about her own strength.
“This journey has taught me to be stronger than I ever thought I could be,” she said.
She has not learned that strength in isolation. Cato writes movingly about the people who have helped carry her through. Her partner, Nicolas—now her husband—has been her constant support, present for every consultation, every scan, every check-up. Her mother, aunt, in-laws, cousins, and friends have also stood close by her side. Their support has done more than comfort her. It has given her a reason to keep moving forward.
“Knowing that I have so much love and support around me makes me realize that I truly want to keep moving forward with my life,” she said.
That may be one of the clearest truths in Cato’s story. EHE changes how life is lived, but it does not erase love, joy, or meaning. If anything, it can sharpen them.
For someone newly diagnosed, her advice is gentle, practical, and full of grace: take things one step at a time. Do not get lost in the “what ifs.” Let yourself feel what comes. Ask for help. Be kind to yourself.
And most of all: “Don’t lose hope, enjoy life, and appreciate every moment. Just live.”
Cato’s story is not one of easy certainty. It is a story of waiting, adapting, loving deeply, and learning to live fully in the present even when the future feels unclear. In that way, it reflects something profound about life with EHE: that courage is not always loud. Sometimes it looks like continuing, scan by scan, season by season, choosing hope anyway.
