rewrite this title ‘I wanted to buy her time’: A mother looks back on her daughter’s terminal cancer

In 2019, Sarah Wildman’s daughter, Orli, was just 10 when she was diagnosed with hepatoblastoma, a rare form a liver cancer. Over the next few years, Wildman chronicled Orli’s illness for The New York Times, where she is a staff writer and editor for the Opinion section.

Wildman’s articles detailed Orli’s bout with several rounds of chemo, a liver transplant, two brain surgeries and a tumor that pinched her spine, leaving her unable to walk. Orli died in March 2023, at the age of 14.

“I thought I understood pain, but she was facing a kind of pain I realized I really had never encountered,” Wildman says. “She would sometimes ask me, ‘What do you think I did to deserve this?’ And of course, that’s not an answerable question.”

Wildman also wrote about the expert medical care Orli received — and the unwillingness of some doctors and nurses to speak openly and realistically about what she was facing. Wildman believes the medical establishment tends to view the death of a child as a failure. As a result, she says, “there is a reluctance to face the idea that medicine has limits. … Children’s hospitals really are always advertising that they will cure children.”

Wildman says that Orli’s illness and death made her question her own Jewish faith: “I had to redefine what God meant to me. It couldn’t be waking up and saying a prayer in the morning or praying for something specific. … I had to really see it in the divinity of people who went out of their way to help us and that weren’t afraid of us.”

Orli would have turned 16 on Jan. 13. To mark the occasion, Wildman and her younger daughter, Hana, spent the weekend doing things that they thought Orli would have enjoyed doing.

“I think one of the really difficult things about facing a parent who has lost a child … is that you cannot make it better. There is no betterment of this,” she says. “What’s easier, though, is when people aren’t afraid of mentioning her name or reminding me of a story or telling me something I didn’t know that she’d told them or that she’d done for them.”

Interview highlights

On interviewing Orli on Instagram

I wanted people to see what it meant to be a kid in cancer care, a really articulate kid, a kid who was really grappling with it and thinking about it and considering it, especially at a time in the mid-pandemic where people were weary of lockdown, really feeling quite sorry for themselves. And what Orli does in that interview, in addition to sort of winning over everyone who watches it, is to sort of realign the way people are thinking about their own sadness, their own sense of isolation, and to show how she was so joyful even during extremely hard experiences.

On the questions Orli and her sister Hana asked that Wildman struggled to answer

At one point we had a very severe experience where Orli ended up in the ICU in Hawaii. We were on a Make-A-Wish trip. It was brutal and terrifying. And Hana said, “Do you think God doesn’t love us?” The kinds of questions that they asked during this really showed my hand, if you will. I was not able to really offer a concrete answer to any of these things. I would say I don’t think that there is a God that is that activist in this way — because there is so much pain around the world and we are experiencing this. But I don’t think it’s about God not loving us. You have to see divinity in the people who are helping us. I would try to turn it into thinking, “How can we see good in the situation?” But sometimes I was really stymied.

On parenting a child with a terminal illness

It really challenged parenting. … I didn’t know how to discipline in this space when all the rules seemed to have been thrown out the window. I didn’t know how to put limits on things. How do you put limits on phone use when you have so little outside interaction? How do you say you have to really focus on algebra when you don’t know actually if any of it will matter? It’s really difficult. And I once said to her, “Well, isn’t it good that we have so much time together, we really get to bond?” And she said, “This is the time I’m supposed to be breaking away from you.” She was hilarious and cynical and tenacious and would often really try to push the boundaries of permissibility when she could.

On maintaining hope and optimism throughout Orli’s treatment

I think hope can be a form of denial. It can also be a motivating force. It can mean that you do seek out treatments that do give you days, months, maybe even years. I think that the hope is essential because cancer care is grueling. It can be demoralizing to face the consequences of cancer care. It can be the cancer care that itself comes with pain. It comes with nausea. It comes with hair loss. I can come with all sorts of indignities. …

It was brutal because she really tried to live each moment in such an enormous way. She really, really loved living and she would try to make life different in the hospital. I mean, she made every single nurse do TikTok dances with her. She would make the music therapists sing Lizzo and Olivia Rodrigo and Taylor Swift, and she would play Taylor Swift and Lizzo in every operating room. And she had many, many surgeries. She would force people again and again to see her not as a patient, but as a person.

I wanted to give her everything. I wanted to buy her time.

Monique Nazareth and Susan Nyakundi produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Beth Novey adapted it for the web.