Rhabdomyosarcoma! Our son Jakub is battling a malignant tumor!

2015

It all started quietly in 2015. Jakub was becoming increasingly lethargic and drowsy, and he had lost his appetite. The initial tests didn’t reveal anything alarming, so for a moment there was relief and hope that it was just a temporary bout of weakness.

Then the neurological symptoms appeared. Things started to change faster than anyone would care to admit.

Diagnosis

The imaging test revealed a shocking result: a tumor. It was growing very quickly, and the pressure it exerted began to affect his optic nerves, causing him to lose his sight.

The diagnosis sounded like something unreal, difficult to say, and even harder to accept: embryonal striated-cell myosarcoma of the craniofacial region.

Treatment and complications

Over the years of treatment, new methods emerged, along with new attempts and new hopes, all intertwined with uncertainty and exhaustion. It was a long, demanding process in which every step forward was of immense importance.

During that time, Jakub gradually regained some vision in his left eye—about 10%. It wasn’t a complete victory, but it was an important breakthrough, a small ray of light amid many difficult days.

At the same time, his body was struggling with the ongoing effects of the disease and its treatment. These included, among other things, hypopituitarism, problems with normal growth, and dental abnormalities.

Everyday Life

Today, Jakub is at home, and his daily life is punctuated by trips for tests and visits to specialists. Despite this routine filled with treatment and checkups, in the peace and quiet of his home, he is regaining something very important: the ordinary rhythm of daily life.

In his free time, Jakub enjoys working on math problems, where he can focus on logic and the order of numbers. He also likes to tinker in his workshop, making small things with his own hands.

Support

Jakub’s sister, who is three years younger, is also part of our daily life. Every day, I try to juggle everything that life throws at us: taking care of the children, the house, and organizing trips for follow-up visits and medical exams, which are a constant part of our reality.

Every day involves logistics, care, and vigilance. My husband works to provide us with stability, though we’re seeing medical and commuting costs rise more and more often.

All of this makes things increasingly difficult, not only emotionally but also financially. That is why we are asking for your support, which will help us keep going day to day and give Jakub a chance to continue his treatment.