Patients´ Stories

Childhood cancer – that's why we are committed to our research

The daughter of TV doctor Dr. Johannes Wimmer died of a rare brain tumor in 2020. A report on the experiences of the Wimmer family, which has stood firmly by the side of the Children’s Cancer Center Charity Association since that time.

At the beginning of the summer, our lives were literally turned upside down. After only five months of lightness with our sunshine Maximilia came the shock diagnosis, a rare and highly aggressive brain tumor. Various operations followed. We spent the hottest weeks of the summer shivering in the intensive care unit and subsequently in the Department of Pediatric Hematology and Oncology at the University Medical Center Hamburg Eppendorf. We felt as if we were on a never-ending long-distance flight and lost the sense of space and time. At some point, we were able to distinguish the doctors in the hallway by the ring tones of their service cell phones, identify the nursing staff by the creative positioning techniques they used to bed Maximilia, and had made every speed camera happy between Eppendorf and Othmarschen on our nightly trips home.

Several times within days, hours or even minutes we alternated between fear and hope, frustration and pragmatism, realization and suppression. Mercilessly, the universe enclosed us with an iron grip. Sometimes we alternated as a couple in our emotional states, sometimes we ran in sync. Every tube less, every discontinued medication released feelings of happiness, we formulated battle cries such as "Maximilia is the one who will make it" and "our fighter", only to fear moments later that we might be among the 85% of families for whom the road is finite. At the same time, every sentence, no matter how terse, from the doctors was weighed in the balance, every word was turned and twisted ten times in the conversations between the two of us. We were virtually craving for information and new insights.

From one day to the next, we were catapulted from our beloved family routine into the unknown. Day by day we try to get used to this new normal, which was imposed on us. Now, at this point, we want to take a look back.

First of all, we would like to say thank you – thank you to the terrific nursing staff for the extra minute to cut a plaster in the shape of a heart and thus make us laugh, thank you to the care on the ward with the extra portion of sauce on the noodles to get rid of the lump in our throats, thank you to the doctors for the security of knowing that Maximilia is medically in the best hands. Much of this pragmatic help is made possible by the tireless commitment and generous donations of the funding association of the Children’s Cancer Center Hamburg.

In addition to that, we would like to give others courage with our personal story – courage to focus on the small strategies to help cope with all the grief and fears and regain resilience. Courage that even in the most difficult hours there can be lightness for a moment. The diagnosis pulled the ground out from under our feet; our everyday life came to a complete standstill. We fought our way back with small steps. Quite consciously, we didn't reflexively reach for the sweatpants next to the bed on the way to the hospital day in and day out, but rather dressed up, for Maximilia and for us, in order to show fate that we could also show attitude to the outside world. We consciously took the time and drove a loop over the Köhlbrand Bridge in the evening to catch our breath after many long hours in the intensive care unit. A WhatsApp group that we created for friends and family helped us almost therapeutically. This way we didn't get lost in endless typing and uncontrollably intensifying emotions, but rather formulated the current state of affairs together and sent it to the people close to us. And if the emotions did not beat in unison once – let's not kid ourselves, that is virtually pre-programmed in such an exceptional situation – there was and still is a code word that leads us as a couple back to a common point in order to pull together every day anew.

Over time, the doors of treatment options that had appeared to be open at the beginning of the disease became increasingly closed to Maximilia. And so we continue to travel with Maximilia day by day through her new universe, which we know will end in the foreseeable future. Also on this journey we feel cared for and above all understood in our worries, fears and concerns in our attempts to beat the cancer. We walk this path in deep gratitude and solidarity with the people who are there for us.

The Wimmer family

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