Hearing from the Mothers of Childhood Cancer Survivors: Erika’s Story – Where Life Wins: A Mother’s Voice for a Thousand Others

It happened over a decade ago, when our world shattered. My then three-week-old son was diagnosed with stage 4 neuroblastoma. Cancer.

I quickly learned it’s best not to look for reasons. What could such a tiny creature have possibly done to deserve this? What could I have done as a mother — who had nothing but love in me for him?

I didn’t know much about childhood cancer. I thought it was only a matter of time before my son died. Still, we did all the treatments, followed the doctors’ orders without question, trusting the process — but without much hope.

Half a year after the diagnosis, I realized: there are survivors of this illness. Children recover. They leave the oncology ward and continue their lives. That was the turning point for me — the first moment I felt I had even a little control over our lives again.

I remember the first thing we did after hearing the diagnosis was to google the name of the illness. I found nothing but devastating stories. Not a single thread of hope. That experience became the first driving force in me — I wanted to do something for other parents going through the same thing. To give them hope. To give them science-based, trustworthy information instead of random Google searches.

Helping became my coping strategy

After leaving the hospital, I volunteered, I built things that might give others a little light. We founded a parents’ association called Érintettek. I wrote a children’s book to help explain treatment to kids — it’s called Bravery Test. Later, we wrote a guidebook for parents, in cooperation with the country’s best pediatric hematologists and oncologists, nurses, psychologists, fellow parents, and survivors. Today, if a child is diagnosed with cancer in Hungary, they automatically receive our info pack — to make life just a little more bearable. To give parents a sense of competence and control in the middle of this unknown fight.

My son is now 14. He was so little then, he barely remembers anything. My daughter, however, still carries a lot in her heart from that time. Having a mom who isn’t always around, whose mind is preoccupied with keeping her little brother alive. We talk so little about siblings — and yet they are also traumatized. They need attention, support, and comfort too. She turned out great. Like many siblings, she’s a helper. She wants to become a doctor.

My marriage was strong — and this whirlwind made it stronger. But I know that’s not always the case. I know many relationships that didn’t survive the fight. For us, working as a team came naturally. I’m forever grateful for that.

Gratitude — my other driving force

I’ve found that people are often afraid to feel grateful, because it means admitting they can’t carry it all alone. With cancer, you simply can’t. You are, however, surrounded by an incredible team of doctors, nurses, and professionals who stand by you in your hardest moments — often with a smile on their face.

I never want to forget to be grateful.

Last year was the first time we forgot the big anniversaries of my son’s transplant. Life just went on. I wish for many families to experience this — to reach the phase where you can forget. Where life wins.

And I hope they carry the great teachings of this illness with them: that life is fragile, and that means we need to live it in a way where every single day matters.

Erika is a volunteer with the Erintettek Association.