Dear ones, if there is one story that particularly touches us at the moment, it is that of Elisa and her family. The three-year-old lives with a DIPG, an incurable malignant brain tumour, and her dad Alexander keeps finding words for the indescribable that give us and many other people goosebumps.
„We know that we only have a limited amount of time with Elisa,“ Alexander wrote in a post earlier this year, „but that’s exactly why we want to make the most of every moment – to fulfil her wishes, see her smile and give her as much joy as possible.“
Dear Alexander, how do you always manage to find such dignified, endearing and fitting words for the fact that you may have to say goodbye to your Elisa in the near future? Has writing always been an outlet for you or is it only now that you are experiencing these deep feelings?
I think if you can’t find the words, at some point you won’t find anything at all. Writing wasn’t a big issue for me before. I was a normal father with a normal life. I worked, we lived our everyday lives. But then came the moment when this everyday life collapsed. And suddenly everything was dark and loud and heavy. And I didn’t know where to go with everything I was feeling.
Writing opened up like an emergency exit. It wasn’t planned. It just came. I started writing things down because otherwise I would have burst inside. I don’t write to appear strong. I write because otherwise I can’t stand it. And sometimes, when I read what I’ve written, I realise how deep it all really goes.
You have just returned from a wonderfully light-hearted holiday in Turkey, where the gravity of the diagnosis of DIPG receded into the distance and Elisa was able to laugh with her mum, dad and sister. As if there was nothing life-threatening in her head…
This trip was like taking a breath in the middle of a storm. We knew that we couldn’t run away from reality. But we wanted to stop it for a few days. Not forever. Just for a moment. And it worked.
Elisa was free. She was just a child. She laughed, splashed around, was brave and wild and completely herself. I looked at her and thought: how can something deadly live in this small, happy body? For a few days, it was as if this tumour was far away. Not gone, but still. And we were allowed to breathe. Not with our heads, but with our hearts.
Before your holiday, there was a development that you knew was coming, but which then shocked you in black and white. What exactly were the words of the doctors treating you?
The doctor said: „The tumour has grown“.
No drama in the voice. No emotion. Just a sober diagnosis. But everything inside me was screaming. I stared at the screen and thought, maybe it’s a mistake. Maybe they’d made a mistake. But it was clear. From two to almost four centimetres.
And there it was again, that realisation that you keep suppressing: there’s no way back. There is only one way forward. And that leads into the unknown.
You are now trying out a new drug that won’t cure Elisa, but could give her a few more months with you. Another goosebump-inducing moment when we read that a hardship application has been submitted and you are now allowed to test the expensive medication, which is not covered by health insurance, without payment from the company…
This medication is not a saviour. But perhaps a small anchor in the midst of the storm. ONC201 is a glimmer of hope. Not a promise. But for us, every day we can win is a gift.
We thought long and hard about whether we should give it a try. There’s no guarantee, but what would have been the alternative? To do nothing? The UKE fought for us. The company approved the application. And suddenly we had the tablets in our hands. It was a quiet moment. No jubilation. Just a quiet one: We’re trying. For her.Are you experiencing other moments of helpfulness, care and gratitude?
Yes, and it’s hard to comprehend. There are people out there who have never met us. And yet they sympathise. They write to us. They send gifts, letters, small tokens of appreciation.
They pray for Elisa. They tell others about her. They accompany us from afar. And sometimes I receive messages that touch me more than words can say. This wave of compassion carries us. Especially on days when we no longer know how to get up ourselves.
What kind of girl is Elisa? Please describe her in a few words.
Elisa is light
.
She has an energy about her that you can feel as soon as she enters the room. She’s wild, loud, full of life. And so loving at the same time. She can look at you and you know she understands more than she says.
She loves animals, dolls, colourful clothes. She dances to any music, even if there’s none playing. She is alive. Completely and utterly. And that’s the worst and most beautiful thing at the same time.
How would you describe the relationship between her and her big sister Clara (who turned 7 yesterday, happy birthday, Clara!)?
The two are heart and soul. Clara is Elisa’s support. And Elisa is Clara’s greatest admirer. They laugh together, argue, make up. And they understand each other in a way that can’t be explained.
Clara senses when Elisa isn’t feeling well. She asks questions that would take a lifetime to answer. And yet she remains a child. Full of love, full of compassion, full of strength.How does Clara deal with the situation? How is your wife? You probably all react differently…
Clara asks a lot of questions. And sometimes she asks what we can’t say out loud ourselves. „Does Elisa have to die?“ – I never thought I would have to answer a question like that. We try to be honest. We don’t anticipate anything, but we don’t hide anything either.
My wife Melissa carries a lot of things on her own. She’s quieter than me. But she fights. Every day. For Elisa, for Clara, for us. We cry. We scream. We hug each other. And sometimes we just sit there and say nothing. That’s love too.
You’ve also been to the funeral parlour. Does planning help you to bring at least some control to this uncontrolled situation?
It was the hardest appointment I’ve ever had. No father should have to choose a grave for their child. And yet it was important. Because we don’t want to make decisions at some point, in complete chaos, that we later regret.
We wanted to make a conscious decision. To find a place that was right. And we found it. Directly opposite our house. Less than ten metres away. That may sound strange to many. For us, it feels like a final proof of love. She’s not gone. She is close. Forever.
What would you do again at any time? What wouldn’t?
We would travel again. Fulfil wishes again. Celebrate every moment again. We would do everything we could again to ensure that Elisa is not a patient, but can simply remain a child.
What we wouldn’t do again? Perhaps trusting doctors for so long when our gut feeling had long warned us (meaning the time before the diagnosis). But we didn’t know any better. And maybe we still did everything right. Because we acted out of love.
What would be your wish for the coming days, weeks and months?
Another morning with sunshine. Another evening with laughter. Another day without pain.
We want Elisa to feel how much she is loved. Every day. Without a break.
And when the moment comes for her to go, we want it to be with love.
Without fear. Without suffering.
And that one day we can look back and say: We didn’t miss out on anything. We have loved, lived, held on.
