It all started with a cold. I thought my daughter Léni, who was eleven at the time, had a sinus infection. We went to our family doctor. But when he looked at Léni's throat, all the colour drained from his face. He immediately sent us to Kiel University Hospital. I drove home, packed Léni a bag and picked up her twin sister Finnja. We pulled her brother Artúr, who was twelve at the time, out of badminton training. At the hospital, one doctor after another was called into the treatment room. They stood around Léni, who opened her mouth unsuspectingly.

The attempt to do an MRI failed. Léni couldn't manage to lie still in the tube. She was gasping for air. At around three o'clock in the morning, Léni was finally taken to a room. When I was alone with Artúr for a moment, he looked at me and asked: "Does Léni have cancer?" "How can you say that," I replied, but I didn't feel any indignation. After all, he was only saying what no one dared to think. We stayed in hospital. Ten days passed. The senior consultant suspected that it was a benign fibroma. But the removal of the tissue was postponed three times. The tissue could bleed heavily, special equipment and a large team of doctors were needed. Léni slept more and more and her face began to deform. One day, an ocean liner passed by our window. I showed it to her, but her gaze remained impassive. She turned her head towards me and said almost gently: "Mum, I can't hear you." The tumour had blocked her ear canals.

Eventually a tissue sample was taken, it took hours. When I was finally allowed to see Léni, she was screaming in pain and bleeding from her mouth and ears. I thought I knew all her crying sounds. Her animal-like sounds and my fainting were unbearable. I screamed for doctors and painkillers and realised I was crying myself. I thought I couldn't bear to see my child suffer like that. I had promised her a good life. I had betrayed her. We had to move to the paediatric ward. It said 'Oncology' at the entrance, but I didn't think it had anything to do with Léni. As I started to put our bags away, a horde of doctors poured in. One of them greeted us somewhat formally. His second sentence was: "As you know, your child has a malignant, fast-growing sarcoma." No, nobody had told us that before. I cried out and fell to my knees.

I don't have any pictures of the next few seconds, I just know that I was gasping for air. Despair swirled inside me, fainting, nausea, disbelief. Léni's crying interrupted this state. "Mum, what is it, what is it?" she asked. My falling down and crying frightened her. I took her hand and smiled calmly. "Everything will be fine, everything will be fine!" I couldn't think of anything else to say. What else could I say? Sweetheart, you have cancer, but everything's fine? Léni only knew cancer from films in which the bald children died at the end. In her childhood mind, cancer equalled death. And to be honest: in my adult head too. A panic swirled inside me that had no outlet.

Nobody told me that my child would get better. I could hardly bear the regret in the doctors' eyes. My thoughts were spinning violently, like the hands of a clock gone haywire. The only thing that gave me a sense of direction was that I wanted to be strong in front of and for Léni. The tumour was huge and had grown together with the carotid artery. That's why the doctors couldn't remove it surgically. Léni was hospitalised for a year. Nine chemo blocks, thirty radiotherapy sessions to combat the advanced stage of the malignant tumour. My mum came from Hungary to look after Finnja and Artúr. Léni almost suffocated twice because of an infusion to which she had an allergic reaction. She was also unable to tolerate one of the chemical agents and fell into a coma.

Instead of the usual ten per cent of her body weight, she lost more than a third. Eventually, she could no longer stand. She lost her long hair and stopped going out. She didn't want to see other children with bald heads. She lost her smile and even the jokes of the ward clowns didn't cheer her up. I would probably have long forgotten what Léni once looked like if she hadn't had a healthy twin sister. After all, it was now commonplace for me to see children with bald heads. I even found that you can only see a person's true beauty when you look at them without all the concealment such as eyebrows, eyelashes and strands of hair. Then the twin sister stepped through the door, and the contrast struck me every time. A perfectly healthy and a terminally ill child from one egg.

Childhood Cancer Switzerland is launching a solidarity campaign in September 2018. The wish campaign aims to encourage affected children and their families and show sympathy.

Léni's mother Leda Forgó has also formulated a wish:

Continue reading Léni's story on the next page: If Léni had died, I would have lost my soul.

When Finnja talked about her everyday life, I was almost shocked by the normality and her lack of understanding of the world in which her sick twin sister found herself. At the same time, I was afraid that they might lose their magical closeness to each other. In the first few weeks, it was vital for Léni that her classmates and teachers visited her and wrote letters. At some point, the gulf between the terminally ill child and those for whom everyday life continued became too great. This painful process was Léni's emancipation. In the face of death, priorities shift. At some point she didn't even care if people stared at her in the street, and she calmed me down when I was boiling with rage. I once hissed at a boy who was staring at us in a department store: "Aren't you ashamed to stare like that?"

The only place that had any reality for me was the paediatric cancer ward. Appointments outside, dates, what to wear, all that became irrelevant. Any desire to consume was extinguished. Even parameters of normality, such as politeness or answering letters. The only thing that mattered was what was going on in Léni's body and what doctors and nurses reported about it. There is no obsession that can take hold of you more than the delusion that the child must live. It is an instinct, and it is much stronger than the self-preserving instinct to live.

On the paediatric cancer ward, one look was enough to know that the other mothers were going through the same thing. We, the people affected by paediatric cancer, were statistically a small, marginalised group, extreme cases, barely existent. I didn't like talking to "healthy" people. Normality closed its doors to us. Instead, we entered a dimension that only we knew about, and that ideally no one should know about. I saw the walls in the eyes of those not affected that made it impossible to understand. And to be honest, I understood them. Because I could remember exactly how I had perceived such fates before. As tragic. And afterwards, I quickly forgot.

We started a six-week proton therapy programme in Essen, which a friend had recommended. We were happy to have got a place, but Léni was at the end of her tether and her strength. She didn't want to go on and was about to give up. I sensed that her life was hanging by a thread. "If you can't go on, I can't either," I said to her. "I can't do nothing and watch you die." Then we cried and she asked me to stay. And she did stay. In Essen, chemotherapy was suspended for the time being due to Léni's poor condition, but the doctors started radiotherapy instead. The side effects only appeared later and were generally milder than those from the chemotherapy, so Léni was able to recover.

She quickly felt much better, and after a few weeks she was in an unexpectedly good condition. One morning she said: "Mum, I think the cancer is gone." Well. We were allowed to survive, but we rejoiced silently. We watched children die around us. Children who were close to us and with whom we spent many days in the same room. We watched them in their most intimate moments of suffering and they watched us. Today, the knowledge that we are healthy again puts all our problems into perspective. It almost feels like a guilty conscience that we were so outrageously lucky. The luck of being allowed to live. Léni was once the tallest and roundest child. Now she is the smallest and most delicate. She hasn't grown a millimetre in almost two years. Nobody knows whether she will catch up. Finnja, her sister, is now a head taller. Before the cancer, Léni was a muscular child, tireless and strong. After a year of lying down, her muscles have regressed, she has shortened tendons and bone pain and lacks reflexes in her legs. She often falls and bumps into things.

Exhaustion overwhelms her after the shortest distances. She is built close to the water, very different from before, and easily irritable. She often comes home from school crying and says: "I want to be like I used to be." That breaks my heart. But the chemicals that were pumped into Léni's body also left her with a gift: Curls. Many of her friends are crazy about her hair, and it makes me happy that she obviously enjoys it. Léni's siblings have made a huge leap in development in the months I've been away. During this time, they have learnt to do without their mother. This has also made them a little tough. Sometimes they have a suspicious look in their eyes and something distant in their voices. Their hugs are more controlled, as if they were just a courtesy, as if their bodies were trying to tell me that they could manage without me. On the other hand, we often have an intimacy together that wasn't there before in such intensity. We enjoy being together as something special.

I have also changed during my illness. I only realised that I hadn't laughed for a long time when I felt my muscles when I laughed because I hadn't used them for so long. I lost my music completely for almost two years. I can now listen to short pieces of music, but I can no longer imagine indulging in self-forgotten reveries. I have become very cautious. I watch Léni constantly.

An era of truthfulness has begun for me, in which I can fool myself much less. I'm no longer prepared to compromise. Either something has to be one hundred per cent right, or I distance myself from it. Literature, my former purpose in life, is now worth less to me than living well. Being able to offer my children something - joy and light-heartedness. I no longer expect outside help in making decisions. I have to find the solution myself. I have gone completely grey in these months. Distinctive features of self-control have settled on my face. I have an increased need to disconnect from the present. Books and films provide me with the necessary unclouded daily happiness. Léni says it would have been easier to die. But she knew she would have left me heartbroken. And Finnja. And Nagyi, her grandmother. She explains it so simply, and then she lives and laughs and thinks and dreams and loves on as if nothing had happened. That's the good thing about children: they don't hold on a moment longer than necessary. Only I am still reeling from the shock.