“Does Elisa Have to Die?” A Dad on Raising a Daughter With DIPG

Friends, if there's one story that has gotten to us lately, it's Elisa's and her family's. Elisa is three and lives with DIPG, an incurable, malignant brain tumor. Her dad, Alexander, keeps finding words for the indescribable, words that give us and so many other people chills. 

“We know our time with Elisa is limited,” Alexander wrote in a post earlier this year, “but that's exactly why we want to make the most of every moment: to fulfill her wishes, to see her smile, and to give her as much joy as we possibly can.”

Dear Alexander, how do you keep finding words that are so dignified, so full of love, and so right for the fact that you may soon have to say goodbye to your Elisa? Has writing always been an outlet for you, or did it only come with these deep feelings?

I think if you stop finding words, eventually you stop finding anything at all. Writing wasn't a big thing for me before. I was a regular dad with a regular life. I worked, we lived our everyday life. Then came the moment when that everyday life collapsed. And suddenly everything was dark and loud and heavy. And I didn't know where to put 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 seem strong. I write because I can't bear it otherwise. And sometimes, when I read what I've written, that's when I realize how deep all of this really goes.

You just got back from a wonderfully light-hearted vacation in Turkey, where the weight of the DIPG diagnosis faded into the distance and Elisa could laugh freely with Mom, Dad, and her sister. As if there were nothing life-threatening in her head at all…

That trip was like a breath in the middle of a storm. We knew we couldn't run from reality. But we wanted to press pause on it for a few days. Not forever. Just for a moment. And it worked.

Elisa was free. She was just a kid. She laughed, she splashed, she was brave and wild and completely herself. I looked at her and thought: How can something deadly live inside this small, happy body? For a few days, it felt like the tumor was far away. Not gone, but quiet. And we got to breathe. Not with our heads, but with our hearts.

Before the trip, there was a development you knew was coming, but which still shook you when you saw it in black and white. What exactly did the doctors say?

The doctor said: “The tumor has grown.”

No drama in her voice. No emotion. Just a sober finding. But inside, everything in me was screaming. I stared at the screen and thought, maybe it's a mistake. Maybe they measured wrong. But it was clear. From 2 centimeters to almost 4. That's from about 0.8 inches to nearly 1.6.

And there it was again, that realization you keep pushing away: There's no way back. There's only a way forward. And it leads into the unknown.

You're now trying a new medication that won't cure Elisa but could give you a few more months with her. Another moment that gave us chills: we read that a compassionate use application was filed, and that the company is letting you try the expensive drug, which no insurer covers, at no cost…

This medication isn't a rescue. But maybe it's a small anchor in the middle of the storm. ONC201 is a glimmer of hope. Not a promise. But for us, every day we can gain is a gift.

We thought long and hard about whether to try it. There's no guarantee, but what would the alternative have been? Doing nothing? The UKE, the university hospital in Hamburg, fought for us. The company approved the application. And suddenly we had the pills in our hands. It was a quiet moment. No cheering. Just a soft: We're trying. For her.

Are you experiencing more moments of helpfulness, care, and gratitude?

Yes. And it's hard to even take in. There are people out there who have never met us. And still they feel with us. They write to us. They send gifts, letters, little gestures.

They pray for Elisa. They tell others about her. They walk beside us from far away. And sometimes I get messages that touch me more than words can say. This wave of compassion carries us. Especially on the days when we don't know how we're going to get out of bed.

What kind of girl is Elisa? Describe her for us in a few words.

Elisa is light.

She has an energy you feel the second she walks into a room. She's wild, loud, full of life. And at the same time so loving. She can look at you, and you know she understands more than she says.

She loves animals, dolls, colorful dresses. She dances to any music, even when none is playing. She lives. Completely. And that's the hardest and the most beautiful thing at the same time.

How would you describe the relationship between Elisa and her big sister Clara (who turned 7 yesterday, happy birthday, Clara!)?

Those two are heart to heart. Clara is Elisa's rock. And Elisa is Clara's biggest fan. They laugh together, they fight, they make up. And they understand each other in a way you can't explain.

Clara senses it when Elisa isn't feeling well. She asks questions that would take a lifetime to answer. And still she's stayed a kid. Full of love, full of compassion, full of strength.

How is Clara handling the situation? How about your wife? I'm guessing you all react differently…

Clara asks a lot. And sometimes she asks what we can't say out loud ourselves. “Does Elisa have to die?” I never thought I'd have to answer a question like that. We try to be honest. We don't get ahead of things, but we don't hide anything either.

My wife, Melissa, carries a lot on her own. She's quieter than I am. But she fights. Every single day. For Elisa, for Clara, for all of us. We cry. We yell. We hold each other. And sometimes we just sit there and don't say anything. That's love too.

You've also already been to the funeral home. Does planning help you bring at least a little control into a situation that can't be controlled?

It was the hardest appointment I've ever had. No father should have to pick out a grave for his child. And still, it was important. Because we don't want to make decisions someday, in total chaos, that we'll regret later.

We wanted to shape this on purpose. To find a place that's right. And we found it. Directly across from our house. Barely 30 feet away. To a lot of people that might sound strange. To us, it feels like one last proof of love. She's not gone. She's close. Forever.

What would you do the same way again in a heartbeat? What wouldn't you?

We'd travel again. Fulfill wishes again. Celebrate every moment again. We'd do everything again to make sure Elisa isn't a patient, but gets to just stay a kid.

What wouldn't we do again? Maybe trust doctors for so long when our gut had been warning us for ages (he means the time before the diagnosis). But we didn't know any better. And maybe we did everything right anyway. Because we acted out of love.

What would you wish for in the coming days, weeks, and months?

One more morning with sunshine. One more evening with laughter. One more day without pain.

We wish for Elisa to feel how much she is loved. Every day. Without a break.

And when the moment comes that she has to go, we wish for it to happen in love.

Without fear. Without suffering.

And that someday we can look back and say: We missed nothing. We loved, we lived, we held on.