‘My children’s lives were in danger every single day. Because of illness, but also because of the war.’

Polina: ‘Leo was 8 years old when he suddenly started having headaches, nausea and double vision. His symptoms kept getting worse. After tests at the Okhmatdyt National Children’s Hospital in Kyiv, we received the diagnosis: a non-germinomatous germ cell tumor (NGGCT), a highly aggressive brain tumor. 

Leo underwent two surgeries, chemotherapy and two bone marrow transplants. His treatment took place in the middle of the war. During one of his transplants, the air raid siren went off, but a treatment like that cannot simply be interrupted. It was incredibly frightening and difficult because we could not leave the hospital at that moment. My children’s lives were in danger every day. Because of illness, but also because of the war. It is almost impossible to comprehend. 

Incurably ill 

After eight months, we were told that despite everything Leo had been through, the tumor was still growing. That news broke us. The hospital suggested continuing Leo’s treatment abroad. Two months later, we received the news that Leo could be treated at the Princess Máxima Center. 

Our whole family packed our bags, in the midst of one of the darkest periods Ukraine has ever known. It felt terrible to leave our family behind. But there was hope for Leo again. And at that moment, that was all that mattered. 

At Schiphol Airport, an interpreter from the Princess Máxima Center met us. Leo was then examined immediately at the Máxima Center. The doctors’ conclusion was incredibly painful: Leo’s tumor could no longer be cured. From that moment on, his treatment focused on palliative care. 

‘I’m doing really well!’ 

We never saw Leo afraid. To this day, I admire his resilience. Whenever doctors or nurses asked how he was doing, Leo always gave the same answer: ‘I’m doing really well.’ 

He danced on the ward where he received intensive chemotherapy, even though we spent three weeks there in isolation. He adored his little brother and sister and counted down the days until he could see them again. Leo even drew a comic book about his tumor, in which his white blood cells and platelets fought the disease. He read the children’s Bible from beginning to end, wrote his own prayer and spoke with God. We prayed too, often and from the bottom of our hearts. Our faith gave us the strength to keep going. We prayed not only for good results, but also for the strength to face together whatever might come our way. 

A miracle 

In July, the doctors discovered that the cancer had spread to Leo’s spinal cord. He could no longer walk and had lost almost all sensation in the lower part of his body. We were terrified. But we knew we had to tell Leo. 

I will never forget his response: 'This tumor doesn't even know how to scare me anymore. Children are very strong on this planet. They’re not afraid of anything.’ 

Even when Leo could barely move or speak, we continued to ask him every day how he was doing. In response, he would slowly give us a thumbs-up. That was his way of saying: ‘I’m doing really well.’ 

Until the very last second, we hoped for a miracle. And I believe that miracle did happen. Leo died peacefully, without the pain and suffering the doctors had prepared us for. He fell asleep surrounded by the people who loved him most. 

At the Máxima Center 

The Princess Máxima Center felt like a lifeline for children with cancer and their families. We could only have dreamed of this level of comfort, treatment, professionalism and expertise. Everything is designed to help a child be a child as much as possible, despite their illness. 

Leo enjoyed the sports activities at Maximaal Bewegen, especially boxing and archery. He loved that he could even get an ice cream or a Chocomel at the hospital. But Leo’s greatest gift came from Make-A-Wish: thanks to them, his own comic book was published. Holding his story in his hands as a real book made him incredibly happy. 

So much love 

Until Leo’s final day, the doctors did everything within their power. They were honest about his diagnosis, but no one gave up. Throughout that entire period, we were surrounded by heartfelt care and unconditional support. We are deeply grateful to everyone who was involved. 

Leo’s story has changed the way we look at life forever. We have learned that love is at the heart of everything. Leo lived the best life that was possible for him. Far too short, ofcourse. But in that time, he touched so many hearts. He gave us an incredible amount of love and showed extraordinary trust and faith that everything would be all right.’