GLIOBLASTOMA! Help Tomek get well again!

August 2024

It all started in August 2024, when my son Tomek’s hand began to shake alarmingly. We went to see a doctor right away, who ordered further tests.

The truth came with the MRI. That was when we first heard the word that changed our lives forever: tumor. In an instant, the world we knew came to a standstill, and fear and uncertainty took its place.

Biopsies

Since then, Tomek has undergone as many as four biopsies. Each procedure meant more days of stress, more hours spent in hospital hallways, and more waiting for the results.

The latest biopsy revealed the diagnosis we had been so afraid of: diffuse glioma. The result was also confirmed by specialists in Bonn.

Due to the tumor's location, the doctors were unable to perform the surgery.

Participation in the study

Tomek began radio-chemotherapy in Gliwice. During his treatment, a glimmer of hope emerged: the opportunity to participate in the BRAIM-TOR trial. We agreed, believing that it might open up new possibilities for our son. The trial ended, but Tomek continued to receive treatment according to its protocol for as long as it remained beneficial.

Toward the end of April this year, everything began to change. From one day to the next, Tomek grew weaker and weaker. He stopped speaking and began having difficulty swallowing liquids, and later, solid foods as well. Today, he is fed and hydrated through a feeding tube.

Family support

In May, more difficult news came. Another MRI showed that the tumor had progressed.

Tomek is also dealing with hypothyroidism and thrombosis. He is currently at home, where we provide him with care and support every day. We couldn’t manage without the support of our family, and we are immensely grateful for their help. Tomek is also receiving home hospice care.

Sister and brother

Tomek's sister is having a very hard time coping with the whole situation. Her brother's illness is a huge burden for her, and despite her young age, she takes care of him with remarkable maturity and love.

Our family has been put through a difficult ordeal. I recently battled cancer myself, and it seemed like the hardest times were behind us. When we heard Tomek’s diagnosis, the world came to a standstill once again.

Dreams

Before his illness robbed Tomek of his everyday life, he had dreams like many boys his age. He wanted to become a firefighter. He wanted to help others. He also wore his Boy Scout uniform with pride; he loved the meetings, the trips, and the sense of community. He was full of energy and plans.

Today, his illness has taken so much from him. It’s extremely difficult for us to connect with my son. We look at him and still see the same boy who had such beautiful dreams.

There is hope

The attending physician from Warsaw informed us about the possibility of treatment with a special drug: a histone mutation inhibitor. This therapy could give Tomek the chance we’ve been searching for so desperately.

Unfortunately, the drug is not approved in Europe. It is manufactured in Germany as an active ingredient. It can be purchased there with a prescription issued by a doctor in Germany. It is intended for long-term use, but the cost of treatment far exceeds our financial means.

That is why we are asking for your help. Every bit of help and every kind word brings us one step closer to giving Tomek a chance to continue his treatment.