Sarah Wildman
speaker
168 appearances
2 recordings
2 series
first heard Feb 2025
last heard Feb 2025
Sarah Wildman’s voice in public audio — every appearance, attributed to the second.
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My sense is that the medical establishment sees the death of a child as a failure. Their failure, the doctor's failure. As the doctor's failure, yeah. I think there is a reluctance to face the idea that medicine has limits. Children's hospitals really are always advertising that they will cure children, right?
And as a result, they don't invest in psychoemotional care for the end of life or the transition from curative care into maintenance care and then finally end of life care, which means that families are left sort of reading tea leaves, if you will, you know, trying to figure out between the lines of what is being said, what's truly happening.
When I was told that Orly's cancer was incurable, hearing incurable didn't necessarily translate to me to, and now she'll die. I think it was very hard to absorb, but it also went somewhat unspoken. And part of the reason why it's so hard to absorb is that you sort of have to hear it again and again because it feels so catastrophically impossible to
that you can't fight it, especially because I had spent so much time researching. I'm a journalist. I sort of applied all those journalistic skills. I read every paper. I made myself into an expert in liver cancer, as did her dad. And we thought we could outsmart cancer in some way.
But it turned out the type of cancer that Orly had, hepatoblastoma, which is typically seen in toddlers, does not have a good cure rate for children who are older. They do very well under the age of three. And then older children, Orly was 10 at diagnosis, they don't tend to survive.
It's hard to say. I think there are a couple different stages that I would have liked, a different type of conversation. For example, in the spring of 2022, when Orly was feeling really good, she had metastasis to her lung. And we asked if we could travel before she had another surgery. It was to be her third lung surgery. And the lung surgeries were very, very painful.
And then we were beginning an experimental treatment. And at that time, actually, she was doing really well. And they were concerned to wait. But they didn't say to us, well, there's a new calculation here, which is to say you're facing a third metastasis. We don't know if delaying surgery will affect our ability to get on top of this cancer. They weren't yet talking about it being incurable.
Right. Instead, they said, we should make sure we do everything we can. And what I would have preferred was to say, let's let her travel. Let's let her do something while she's doing well. Because I actually think they knew then the trajectory wasn't great. And I think there's a way to do that that still allows for hope. Orly's cancer metastasized to her brain in June. And Ian asked providers...
Does this mean she'll die? People really were reluctant to answer that question. And I was reluctant to hear it. So I think to your question, if they'd given it out in small doses, what they could have said was... This is resetting the table. She won't outrun this. We don't know how much time we have. What are the things you want to do?
If they'd started to say that when she was still able to do more things, it would have been terrifying. And I think it's part of the reason why it's really hard to have those conversations.
Yes, 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. The cancer care itself comes with pain. It comes with nausea.
It comes with, obviously, hair loss. It can come with all sorts of indignities. It must be so hard to watch as a parent. 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 therapist 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. And to see that she wasn't able to do that as much as she would have liked outside of the hospital. For example, she loved acting.
In the fall of 2022, she'd already had two brain surgeries, and she won a lead in Twelfth Night. And I have videos of her practicing for the part. But by late fall, she felt too tired to go to rehearsal. And it's these indignities as well, to not get these small pieces of joy that are really easy to take for granted, and to not be able to give her that. I wanted to give her everything.
I wanted to buy her time.
So I'm going to back up to before hospice on that one. When Orly first presented with a brain tumor in June of 2022, it was after a week of vomiting and terrible headaches. And her oncologist pulled me into the room and was really upset and said, it's her brain. We had just gotten a scan. And then she led me back to Orly's room and she walked away.
And I said, aren't you going to come and tell me with her? And the doctor came in with me and said, Orly, it's your brain. And Orly said, so I'm going to die. And the doctor said, you're so mature. And I was shaking. I would have these sort of physiological responses to really extreme moments where even if I was extremely calm, and I was always really calm for her sake.
And in fact, very early on, she had asked me not to cry in front of her. And so I really didn't for a very long time. But sometimes I couldn't control shaking. And she was upset with me later that I didn't contradict her, that I didn't say, no, that's not true. We're going to be okay. I really didn't know in that moment what to do.
And to your question on hospice, hospice was introduced to us not as she's dying and she's going on hospice. It was introduced because later that fall, after she'd actually bounced back, I mean, she had, after that brain surgery, after that first brain tumor, two weeks later, she was on a surfboard. She read 15 books. She joined a pottery class. She traveled. She got a few weeks. Of life.
But that fall, she was in terrible pain. And in the hospital, they said to me, hospitals and pediatrics is different for adults. In adults, you give up options of curative care. But for children, since Obamacare, you can have concurrent care. You can continue curative treatments. You can enter into drug trials. You won't be giving anything up. You will just get some extra assistance at home.
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