Sarah Wildman
Appearances
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
You'll have home nursing. But it turned out, first of all, where I live, there wasn't a home nursing option within our hospice care insurance benefit, one. And two, when the hospice nurse called for the intake... I said, we're starting a drug trial. You know, we're not giving up concurrent care. We've agreed to talk to you because we need some home assistance.
Fresh Air
Parenting A Child With Terminal Cancer
And she said, yes, but you know that they told me she has six months to live, right? And I said, no, you're the first to tell me that.
Fresh Air
Parenting A Child With Terminal Cancer
We often let her bring it up. And she actually had an idea for a podcast. It's a little bit like what Shannon Doherty ended up doing herself, although this didn't exist at the time. She told me she wanted to create a podcast, conversations with her until she died. They would have this sort of frisson of anxiety about it, you know, how you wouldn't know how long it would last.
Fresh Air
Parenting A Child With Terminal Cancer
And so, which was very, very funny. She once had a text argument with a friend, and the friend said, I think you sound strange, and Orly texted, well, I'm literally dying. Because she was an adolescent, you know. And at the same time, she very much did not want to die. And she would tell us, sometimes she would cry about it.
Fresh Air
Parenting A Child With Terminal Cancer
In one email that I read that she sent to someone that was not me, she said she learned how far the metastases had gone. And in that fall of 2022, the cancer spread further. And she said, no one is talking about a miracle. But there's some small part of her, I think, that hoped we would. We did try three different last-ditch efforts of various drugs to slow things down.
Fresh Air
Parenting A Child With Terminal Cancer
What the doctors would do is ask for her consent at this point. In starting a new drug. And when the doctor said, are you sure you want to do this? Are you sure you want to try yet another treatment? And she said, she really yelled, yes, yes, you've given up on me. I think she didn't want to give up. And yet at the same time, she did want to grapple with it.
Fresh Air
Parenting A Child With Terminal Cancer
I mean, you know, she was 13 and then 14. We obviously disagreed about things. I mean, before things really took an extremely dark turn and she was still trying to go to school, one day she emerged from her room and told me very proudly that, that instead of doing any schoolwork at all, she had watched every single Marvel movie back to back to back to catch herself up on the entire Marvel series.
Fresh Air
Parenting A Child With Terminal Cancer
And I should feel extremely proud that she had reached this accomplishment. And I was a little nonplussed, you know. She was very annoyed that I didn't see this as the remarkable achievement of, you know, she'd barely slept. She'd read none of her assignments. And all she had done was catch herself up entirely and knew absolutely everything now about Marvel there was to know.
Fresh Air
Parenting A Child With Terminal Cancer
She had this ability to do this. You know, she did this, I used to say she had a Talmudic relationship with Harry Potter, right? where she really started to read it against the grain and started to be very angry with Dumbledore for knowing all along that Harry would face the things he faced.
Fresh Air
Parenting A Child With Terminal Cancer
It's interesting, and she talked about this in her own bat mitzvah, that she struggled with Dumbledore as a savior character in the same way that she struggled with the idea of God, because in her hospital room, no deity showed up. And, you know, I think we all would argue, but I would try to make up with her immediately. I wouldn't go to bed angry. I would apologize faster than probably I should.
Fresh Air
Parenting A Child With Terminal Cancer
It was really challenged parenting, and it still does, because I didn't know how to discipline in this space properly. When all the rules seem 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?
Fresh Air
Parenting A Child With Terminal Cancer
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. Yeah.
Fresh Air
Parenting A Child With Terminal Cancer
Yeah, it does. It's interesting. It's like they're somehow reinforcing its non-normativity by constantly telling you you're beautiful as though you'd think it was strange. I mean, you happen to look really good with a bald head. I'm just going to say that. Do you feel like that regular life is just sort of continuing on and you're still in this cancer space? Yeah.
Fresh Air
Parenting A Child With Terminal Cancer
She was hilarious and cynical and tenacious and would often really try to push the boundaries of permissibility when she could. You know, we had one perfect week and weekend right before her brain tumor was We went to New York. We were all extras on Fleischman is in Trouble. Oh, seriously? Yes. How did you do that? I wrote to Taffy Ackner and I said, this is Orly's dream to be an actor.
Fresh Air
Parenting A Child With Terminal Cancer
And she's just gone through this third lung surgery, you know, one of many, many, many surgeries she's had. What do you think would you do? Could she be an extra? And she said, how about all four of you? And I ended up nine hours on a television set in a bathing suit, which was not what I had planned. You both worked at the Times, so you probably had some kind of connection. I did. Yes, I did.
Fresh Air
Parenting A Child With Terminal Cancer
And I knew her from the Times. And also she had followed our story. And she was really happy to do something for Orly. But the thing that Orly did on that set was she left us and the extras were sort of corralled together. And she sat with the stars and the directors and watched the dailies and sort of insinuated herself among them. And no one was unhappy with it. It was such a gift.
Fresh Air
Parenting A Child With Terminal Cancer
She liked to push boundaries as much as she possibly could. She liked to whenever she could see the moment of autonomy.
Fresh Air
Parenting A Child With Terminal Cancer
Hannah was six when Orly was diagnosed and nine when she died. And the week after the shiva, we borrowed a friend's apartment in New York and she started hysterically crying on the street one night. And we said, what's happening for you now? What are you feeling? And she said she was so angry with God. She was worried she'd be punished.
Fresh Air
Parenting A Child With Terminal Cancer
She was worried that there would be some sort of consequence of this anger. And we ended up calling up one of our rabbis and saying, let's talk to Hannah about this idea. And the rabbi said, Hannah, we are all angry with God about losing Orly. And in fact, in Jewish tradition, there's a lot of anger with God. It's not very strange to be angry with God. But sometimes Hannah will get very upset.
Fresh Air
Parenting A Child With Terminal Cancer
She really does not know how to have any relationship with God right now. And she's very, very angry that God could have taken away someone as young, someone as vital, someone as important as Orly.
Fresh Air
Parenting A Child With Terminal Cancer
So Jewish morning practices, many people know, you bury immediately. You have a week-long shiva, a period of time where people come to you and you're not supposed to cook or do anything. All that's the same. Everybody's supposed to do it for you. And you're not supposed to look in a mirror. I didn't do that. I did look in the mirror. you aren't supposed to make your own food.
Fresh Air
Parenting A Child With Terminal Cancer
Everything's brought to you. And you sit. You just really sit low. And every single day, the entire community is supposed to surround you. And then you emerge out of that, and you have a 30-day period of... of mourning. And then you emerge out of that.
Fresh Air
Parenting A Child With Terminal Cancer
And if you're a child mourning a parent, you then have a whole following year where every single day for 11 months, you stand up and you say the mourner's prayer, the mourner's Kaddish. If you lose a child, all the mourning rituals end at 30 days. There's nothing beyond it. There are no rules or If you lose a parent, you're not supposed to attend a wedding, to go to a concert.
Fresh Air
Parenting A Child With Terminal Cancer
You're not supposed to attend a joyful dinner. You're not supposed to incur joy in some way. You're not supposed to go out of your way to do something that's particularly delightful unless it has to do with your work. As a parent who's lost a child, you can do whatever you want. I found this fascinating. Completely destabilizing. I wanted them to tell me that I needed a policy of abnegation.
Fresh Air
Parenting A Child With Terminal Cancer
I wanted them to tell me that you should be recognized as a mourner every day because in truth, in the modern world, you are seen as a mourner. Someone who's lost a child is seen differently, is sort of outside society all the time. And yet, because these rules were set in antiquity, when unfortunately child loss was far more prevalent— You had no rules. You could do whatever you wanted.
Fresh Air
Parenting A Child With Terminal Cancer
And that felt like you were in free fall. And so we started to sort of change things a little bit. And, you know, one thing Orly did really early on after the first brain tumor and that she got back on a surfboard and got back on a bike. One day she biked off from me. we had been gifted a house, a very, very tiny, beautiful little space on Martha's Vineyard. And she'd biked away from me.
Fresh Air
Parenting A Child With Terminal Cancer
And I found her sitting on a jetty, looking out to the sea with a book and a journal. And she said, this is what I needed. This is so good for my mental health. And it was just all this beauty. And she was able to take in that beauty. And I thought, okay, that's what she tried to do. That's what we'll do in this first year morning period in free fall and when we don't have to do anything.
Fresh Air
Parenting A Child With Terminal Cancer
We don't have to say a prayer every day. We're not recognized in the community in the same way. So we're going to have to reset this and make our own path.
Fresh Air
Parenting A Child With Terminal Cancer
I mean, I think all parents feel at some point that they're failing in both spaces. But strangely for me, work was an enormous respite. For one, I leaned heavily into editing a lot of the time during Orly's illness. And I would edit at crazy hours. Ian and I would trade off every day at the hospital, 24 hours on, 24 hours off.
Fresh Air
Parenting A Child With Terminal Cancer
But I could edit at 2 in the morning, in the dark, while she slept, and it would allow me to focus for an hour, two hours, five hours, in increments, away from the trauma of my immediate present. And I also think it gave me a different sense of the world's vulnerabilities. I would often say this to people after Orly died, that... I understand loss differently.
Fresh Air
Parenting A Child With Terminal Cancer
I understand pain differently in all forms. I think it made me a hope. It made me a better editor and a better writer. What's really strange is that I sometimes feel that It has been some of the best writing I've ever done, which feels really awful in some strange way that it can write to write beautiful sentences. And yet, in some way, I think it's about honoring her with them.
Fresh Air
Parenting A Child With Terminal Cancer
just so many people went out without me and just forgot that i was going through all this stuff i think that yeah it goes on without me and sometimes i feel alone everybody feels like this year has been hard we actually did that you know when you made your reels the other day you know everybody felt that 2020 was really tough and even the beginning of 2021 hasn't been terribly easy so
Fresh Air
Parenting A Child With Terminal Cancer
I want so much for people to know her. But yes, I think even now when I'm working, I worry, am I giving enough to Hana? Hana needs a lot right now. Can I drop everything when she gets home for the day and pick it back up later at night? Do I just sacrifice, let's say, sleep? Maybe I just won't sleep as much. There is this sense that it's impossible to do both.
Fresh Air
Parenting A Child With Terminal Cancer
But I was in a really, really fortunate position in the most unfortunate of times to be working with a team of people who constantly said to me, if you need to take a break, take a break. If you want to step away and take a leave of absence, take a leave of absence. And that was very fortunate because it allowed me to be present and
Fresh Air
Parenting A Child With Terminal Cancer
and advocate for Orly in the hospital and outside of it in ways that I wouldn't have been able to do in most other positions.
Fresh Air
Parenting A Child With Terminal Cancer
Yes, in some way, yes. And I worked with, I was privileged to get to work with Rachel on both two audio projects for The New York Times and at her first essay for us. I met her across the airwaves the week of October 7th. And what was remarkable to me was at the end of our conversation, and it didn't make it into our audio production, was she said she was glad that it was me.
Fresh Air
Parenting A Child With Terminal Cancer
She'd read the Orly stories. And she was sorry for what I had been through. And it was really a remarkable moment of someone going through tremendous trauma, being able to step outside themselves and then offer empathy outside of their space.
Fresh Air
Parenting A Child With Terminal Cancer
I produced a number of the hostage stories that we ran, and I've also worked with Palestinians, because I do think there is a commonality of loss and grief and pain that transcends conflict and to some degree is possibly... One way out of it, seeing our human connection feels to me one of the most important things that we can do right now.
Fresh Air
Parenting A Child With Terminal Cancer
It sounds so cliched or like something that could go on a mug, but I actually really mean it. I think it feels to me very important to hear the stories of these individuals.
Fresh Air
Parenting A Child With Terminal Cancer
And yes, so yes, I've worked on a number of these stories in addition to right now, after this most recent inauguration, I'm working on stories of immigration, refugees, asylum seekers, and trying to look at this question of who are we as a nation? Are we a nation that welcomes in immigrants? The huddled masses yearning to breathe free? Are we a nation that closes its doors?
Fresh Air
Parenting A Child With Terminal Cancer
And I think all of this connects back to this question of what is our role to each other in the world? It goes back to your question of finding divinity. Do we have a responsibility to each other as human beings? What is that responsibility? How far does it go? How far can we take it?
Fresh Air
Parenting A Child With Terminal Cancer
Does that make you feel like people get it more, what it feels like to be in isolation? Or do you feel even more distanced?
Fresh Air
Parenting A Child With Terminal Cancer
You know, Terry, I think the thing to really know is that the loss of a child is not a one-time event, right? It's constant. You are always, you sort of lose her again and again every day. You know, it's every time you set the table. It's in the way in which we all respond to the world and the idea of how people understand us or don't understand us.
Fresh Air
Parenting A Child With Terminal Cancer
It's about this sense of, are we broken and broken? How do we repair understanding that the pieces don't ever really quite fit the same way again? Because it's the loss of both present and future, it shifts something about how you see the world, and it really challenges your optimism every day.
Fresh Air
Parenting A Child With Terminal Cancer
She should have turned 16 on January 13th, and Hana and I spent the weekend doing things we thought she would have done or would have liked. There are some days where I step outside and I want to cry my entire walk. And there are some days where something happens and it just makes me smile. When I spoke to your producer to prepare for this conversation... And I stopped the call.
Fresh Air
Parenting A Child With Terminal Cancer
I looked at my phone. And we had been speaking for one hour and 13 minutes. And Orly was born on January 13th. And I sometimes see those moments as her.
Fresh Air
Parenting A Child With Terminal Cancer
Thank you so much for having me on and letting me share a little bit of Orly's story and mine.
Fresh Air
Parenting A Child With Terminal Cancer
That makes me sad, Orly, for you to say that, but I mean.
Fresh Air
Parenting A Child With Terminal Cancer
I wanted to do that interview with her because I had actually just written a piece about how she had used TikTok despite my...
Fresh Air
Parenting A Child With Terminal Cancer
reluctance about how incredibly public a TikTok account could be and did become, but also because 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 of lockdown, really feeling quite sorry for themselves.
Fresh Air
Parenting A Child With Terminal Cancer
And what Orly 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.
Fresh Air
Parenting A Child With Terminal Cancer
I think it did. It also allowed us a different kind of focus. When you're chatting with your kid, you're often multitasking. You're making dinner, you're driving, you're getting them from one place to another. And a focus 30 or 40 minutes where you're asking question after question, waiting for the answer. It's sort of an unusual format for parent and child.
Fresh Air
Parenting A Child With Terminal Cancer
It's just not exactly how it goes, you know, outside of how was school? Tell me something interesting. Who did you sit with at lunch? And in this context, it also allowed us a total lack of distraction. A lot of the time we have our phones on us. Something is dinging. You say, let me just quickly check this text. And both of us had to put aside all devices and just focus on this question.
Fresh Air
Parenting A Child With Terminal Cancer
Did she have difficult questions for you over the years that you had trouble answering? Yes. She would often ask me, starting at the very beginning, had I ever experienced pain like she was experiencing? And at first I said, well, I've had two pregnancies and two rounds of childbirth that long labors that ended in C-sections, I thought I understood pain.
Fresh Air
Parenting A Child With Terminal Cancer
But she was facing a kind of pain I realized I really had never encountered. And I didn't know anyone who had encountered a physical pain. And she would sometimes ask me, What do you think I did to deserve this? And of course, that's not an answerable question. There was nothing. And it really challenged us to look at this question of, is there such a thing as deserving pain?
Fresh Air
Parenting A Child With Terminal Cancer
She would ask me about God, you know, both girls. We had a very severe experience where Orly 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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
Did you have your own questions about God and your child's suffering? You know, at the very beginning, we have a very close relationship with our rabbis. And early on, one of them asked me, are you angry with God? And that's a question that actually has come up again and again within the family. But for me, it wasn't angry. It was more, as my grandfather would have said, wo ist Gott?
Fresh Air
Parenting A Child With Terminal Cancer
Like, where is God? Can you even see God in this? How does it even, what does it mean to have come from a faith tradition? and feel like you've done the right things, whatever that means. Whether it means religiously, because we actually have Shabbat, we keep a kosher house, we follow many of the rules. We thought of ourselves as relatively good people.
Fresh Air
Parenting A Child With Terminal Cancer
I mean, what does it mean to face this question and have... The whole world turned upside down. It felt like there wasn't really a space for God within it. And you had to constantly search for what that looked like. 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.
Fresh Air
Parenting A Child With Terminal Cancer
It is very easy to be afraid of a family going through a catastrophe.
Fresh Air
Parenting A Child With Terminal Cancer
It's really difficult because sometimes I also felt that people wanted me to cry with them. And I cry a lot, but I can't cry every time someone cries to me. And I sometimes... felt that it was hard. I didn't know who to comfort in that space. Sometimes what ends up happening if someone cries to me is that the roles reverse. I end up comforting them. I can't say it's okay because it's not, right?
Fresh Air
Parenting A Child With Terminal Cancer
And I think one of the really difficult things about facing a parent who has lost a child If you think anyone who's lost anyone, but particularly in parental bereavement, is that you cannot make it better. There is no betterment of this. There's no, it's going to get better. She's not coming back.
Fresh Air
Parenting A Child With Terminal Cancer
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. It's very hard when people cry to me, and I am a little bit at a loss as to where I fit in their grief.
Fresh Air
Parenting A Child With Terminal Cancer
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?
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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.
Fresh Air
Parenting A Child With Terminal Cancer
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...
Fresh Air
Parenting A Child With Terminal Cancer
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?
Fresh Air
Parenting A Child With Terminal Cancer
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
Republicans SHAME THE USA on LIVE TV for Trump
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.
The MeidasTouch Podcast
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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.
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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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You'll have home nursing. But it turned out, first of all, where I live, there wasn't a home nursing option within our hospice care insurance benefit, one. And two, when the hospice nurse called for the intake... I said, we're starting a drug trial. You know, we're not giving up concurrent care. We've agreed to talk to you because we need some home assistance.
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And she said, yes, but you know that they told me she has six months to live, right? And I said, no, you're the first to tell me that.
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And she actually had an idea for a podcast. It's a little bit like what Shannon Doherty ended up doing herself, although this didn't exist at the time. She told me she wanted to create a podcast, conversations with her until she died. They would have this sort of frisson of anxiety about it, you know, how you wouldn't know how long it would last. And so, which was very, very funny.
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She once had a text argument with a friend and the friend said, I think you're being, you sound strange and Orly texted, well, I'm literally dying. Yeah.
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because she was an adolescent you know and at the same time she very much did not want to die and she would tell us sometimes she would cry about it uh in one email that i read that she sent to someone that was not me she said she learned how far the metastases had gone and in that fall of 2022 the cancer spread further and she said no one is talking about a miracle
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But there's some small part of her, I think, that hoped we would. We did try three different last-ditch efforts of various drugs to slow things down. What the doctors would do is ask for her consent at this point. In starting a new drug. And when the doctor said, are you sure you want to do this? Are you sure you want to try yet another treatment?
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And she said, she really yelled, yes, yes, you've given up on me. I think she didn't want to give up. And yet at the same time, she did want to grapple with it.
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I mean, you know, she was 13 and then 14. We obviously disagreed about things. I mean, before things really took an extremely dark turn and she was still trying to go to school, one day she emerged from her room and told me very proudly that instead of doing any schoolwork at all, she had watched every single Marvel movie back to back to back to catch herself up on the entire Marvel series again.
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And I should feel extremely proud that she had reached this accomplishment. And I was a little nonplussed, you know. She was very annoyed that I didn't see this as the remarkable achievement of, you know, she'd barely slept. She'd read none of her assignments. And all she had done was catch herself up entirely and knew absolutely everything now about Marvel there was to know.
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She had this ability to do this. You know, she did this, I used to say she had a Talmudic relationship with Harry Potter relationship. where she really started to read it against the grain and started to be very angry with Dumbledore for knowing all along that Harry would face the things he faced.
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It's interesting, and she talked about this in her own bat mitzvah, that she struggled with Dumbledore as a savior character in the same way that she struggled with the idea of God, because in her hospital room, no deity showed up. And, you know, I think we all would argue, but I would try to make up with her immediately. I wouldn't go to bed angry. I would apologize faster than probably I should.
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Yeah, it does. It's interesting. It's like they're somehow reinforcing its non-normativity by constantly telling you you're beautiful as though you'd think it was strange. I mean, you happen to look really good with a bald head. I'm just going to say that. Do you feel like that regular life is just sort of continuing on and you're still in this cancer space?
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It was really challenged parenting, and it still does, because I didn't know how to discipline in this space properly. When all the rules seem 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?
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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. Yeah.
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She was hilarious and cynical and tenacious and would often really try to push the boundaries of permissibility when she could. You know, we had one perfect week and weekend right before her brain tumor happened. We went to New York. We were all extras on Fleischman is in Trouble.
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Yes. How did you do that? I wrote to Taffy Ackner and I said, this is Orly's dream to be an actor. And she's just gone through this third lung surgery. You know, one of many, many, many surgeries she's had. What do you think? Would you? Could she be an extra? And she said, how about all four of you? And I ended up nine hours on a television set in a bathing suit, which was not what I had planned.
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You both worked at the Times, so you probably had some kind of connection.
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And I knew her from the Times. And also she had followed our story. And she was really happy to do something for Orly. But the thing that Orly did on that set was she left us and the extras were sort of corralled together. And she sat with the stars and the directors and watched the dailies and sort of insinuated herself among them. And no one was unhappy with it. It was such a gift.
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She liked to push boundaries as much as she possibly could. She liked to, whenever she could see the moment of autonomy.
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Hannah was six when Orly was diagnosed and nine when she died. And the week after the shiva, we borrowed a friend's apartment in New York and she started hysterically crying on the street one night. And we said, what's happening for you now? What are you feeling? And she said she was so angry with God. She was worried she'd be punished.
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She was worried that there would be some sort of consequence of this anger. And we ended up calling up one of our rabbis and saying, let's talk to Hannah about this idea. And the rabbi said, Hannah, we are all angry with God about losing Orly. And in fact, in Jewish tradition, there's a lot of anger with God. It's not very strange to be angry with God. But sometimes Hannah will get very upset.
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She really does not know how to have any relationship with God right now. And she's very, very angry that God could have taken away someone as young, someone as vital, someone as important as Orly.
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So Jewish morning practices, many people know, you bury immediately. You have a week-long shiva, a period of time where people come to you and you're not supposed to cook or do anything. All that's the same. Everybody's supposed to do it for you. And you're not supposed to look in a mirror. I didn't do that. I did look in the mirror. You aren't supposed to make your own food.
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Everything's brought to you. And you sit. You just really sit low. And every single day, the entire community is supposed to surround you. And then you emerge out of that and you have a 30-day period of of mourning, and then you emerge out of that.
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And if you're a child mourning a parent, you then have a whole following year where every single day for 11 months, you stand up and you say the mourner's prayer, the mourner's Kaddish. If you lose a child, all the mourning rituals end at 30 days. There's If you lose a parent, you're not supposed to attend a wedding, to go to a concert. You're not supposed to attend a joyful dinner.
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You're not supposed to incur joy in some way. You're not supposed to go out of your way to do something that's particularly delightful unless it has to do with your work. As a parent who's lost a child, you can do whatever you want. I found this fascinating. Completely destabilizing. I wanted them to tell me that I needed a policy of abnegation.
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I wanted them to tell me that you should be recognized as a mourner every day because in truth, in the modern world, you are seen as a mourner. Someone who's lost a child is seen differently, is sort of outside society all the time. And yet, because these rules were set in antiquity, when unfortunately child loss was far more prevalent— You had no rules. You could do whatever you wanted.
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And that felt like you were in free fall. And so we started to sort of change things a little bit. And, you know, one thing Orly did really early on after the first brain tumor and that when she got back on a surfboard and got back on a bike, one day she biked off from me. we had been gifted a house, a very, very tiny, beautiful little space on Martha's Vineyard. And she'd biked away from me.
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And I found her sitting on a jetty, looking out to the sea with a book and a journal. And she said, this is what I needed. This is so good for my mental health. And it was just all this beauty. And she was able to take in that beauty. And I thought, okay, that's what she tried to do. That's what we'll do in this first year morning period in free fall. And when we don't have to do anything.
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We don't have to say a prayer every day. We're not recognized in the community in the same way. So we're going to have to reset this and make our own path.
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I mean, I think all parents feel at some point that they're failing in both spaces. But strangely for me, work was an enormous respite. For one, I leaned heavily into editing a lot of the time during Orly's illness. And I would edit at crazy hours, you know. Ian and I would trade off every day at the hospital, 24 hours on, 24 hours off.
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But I could edit at 2 in the morning, in the dark, while she slept. And it would allow me to focus for an hour, two hours, five hours, in increments, away from the trauma of my immediate present. And... I also think it gave me a different sense of the world's vulnerabilities. I would often say this to people after Orly died, that I understand loss differently.
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I understand pain differently in all forms. I think it made me a hope. It made me a better editor and a better writer. What's really strange is that I sometimes feel that It has been some of the best writing I've ever done, which feels really awful in some strange way that it can write to write beautiful sentences. And yet, in some way, I think it's about honoring her with them.
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Everybody feels like this year has been hard. We actually did that. When you made your reels the other day, everybody felt that 2020 was really tough. And even the beginning of 2021 hasn't been terribly easy. So... Does that make you feel like people get it more, what it feels like to be in isolation? Or do you feel even more distanced? No.
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I want so much for people to know her. But yes, I think even now when I'm working, I worry, am I giving enough to Hana? Hana needs a lot right now. Can I drop everything when she gets home for the day and pick it back up later at night? Do I just sacrifice, let's say, sleep? Maybe I just won't sleep as much. There is this sense that it's impossible to do both.
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But I was in a really, really fortunate position in the most unfortunate of times to be working with a team of people who constantly said to me, if you need to take a break, take a break. If you want to step away and take a leave of absence, take a leave of absence. And that was very fortunate because it allowed me to be present and advocate for Orly in the hospital and outside of it.
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in ways that I wouldn't have been able to do in most other positions.
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Yes, in some way, yes. And I worked with... I was privileged to get to work with Rachel on both two audio projects for The New York Times and at her first essay for us. I met her... across the airwaves, the week of October 7th. And what was remarkable to me was at the end of our conversation, and it didn't make it into our audio production, was she said she was glad that it was me.
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She'd read the Orly stories. And she was sorry for what I had been through. And it was really a remarkable moment of someone going through tremendous trauma, being able to step outside themselves and then offer empathy outside of their space.
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I produced a number of the hostage stories that we ran, and I've also worked with Palestinians, because I do think there is a commonality of loss and grief and pain that transcends conflict and to some degree is possibly... one way out of it. Seeing our human connection feels to me one of the most important things that we can do right now.
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It sounds so cliched or like something that could go on a mug, but I actually really mean it. I think it feels to me very important to hear the stories of these individuals
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And yes, so yes, I've worked on a number of these stories in addition to right now, after this most recent inauguration, I'm working on stories of immigration, refugees, asylum seekers, and trying to look at this question of who are we as a nation? Are we a nation that welcomes in immigrants? The huddled masses yearning to breathe free? Are we a nation that closes its doors?
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And I think all of this connects back to this question of what is our role to each other in the world? It goes back to your question of finding divinity. Do we have a responsibility to each other as human beings? What is that responsibility? How far does it go? How far can we take it?
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You know, Terry, I think the thing to really know is that the loss of a child is not a one-time event, right? It's constant. You are always, you sort of lose her again and again every day. You know, it's every time you set the table. It's in the way in which we all respond to the world and the idea of how people understand us or don't understand us.
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It's about this sense of, are we broken and broken? How do we repair understanding that the pieces don't ever really quite fit the same way again? Because it's the loss of both present and future. It shifts something about how you see the world. And it really challenges your optimism every day. She should have turned 16 on January 13th.
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And Hana and I spent the weekend doing things we thought she would have done or would have liked. There are some days where I step outside and I want to cry my entire walk. And there are some days where something happens and it just makes me smile. When I spoke to your producer to prepare for this conversation... And I stopped the call. I looked at my phone.
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And we had been speaking for one hour and 13 minutes. And Orly was born on January 13th. And I sometimes see those moments as her.
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Thank you so much for having me on and letting me share a little bit of Orly's story and mine.
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That makes me sad, Orly, for you to say that, but I mean.
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I wanted to do that interview with her because I had actually just written a piece about how she had used TikTok despite my...
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reluctance about how incredibly public a TikTok account could be and did become, but also because 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 of lockdown, really feeling quite sorry for themselves.
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And what Orly 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.
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I think it did. It also allowed us a different kind of focus. When you're chatting with your kid, you're often multitasking. You're making dinner, you're driving, you're getting them from one place to another. And a focus 30 or 40 minutes where you're asking question after question, waiting for the answer. It's sort of an unusual format for parent and child.
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It's just not exactly how it goes, you know, outside of how is school? Tell me something interesting. Who did you sit with at lunch? And in this context, it also allowed us a total lack of distraction. A lot of the time we have our phones on us. Something is dinging. You say, let me just quickly check this text. And both of us had to put aside all devices and just focus on this question.
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Did she have difficult questions for you over the years that you had trouble answering? Yes. She would often ask me, starting at the very beginning, had I ever experienced pain like she was experiencing? And at first I said, well, I've had two pregnancies and two rounds of childbirth that long labors that ended in C-sections, I thought I understood pain.
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But she was facing a kind of pain I realized I really had never encountered. And I didn't know anyone who had encountered a physical pain. And she would sometimes ask me, What do you think I did to deserve this? And of course, that's not an answerable question. There was nothing. And it really challenged us to look at this question of, is there such a thing as deserving pain?
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She would ask me about God, you know, both girls. We had a very severe experience where Orly 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.
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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.
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Did you have your own questions about God and your child's suffering? You know, at the very beginning, we have a very close relationship with our rabbis. And early on, one of them asked me, are you angry with God? And that's a question that actually has come up again and again within the family. But for me, it wasn't angry. It was more, as my grandfather would have said, wo ist Gott?
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Like, where is God? Can you even see God in this? What does it mean to have come from a faith tradition? and feel like you've done the right things, whatever that means. Whether it means religiously, because we actually have Shabbat, we keep a kosher house, we follow many of the rules. We thought of ourselves as relatively good people. I mean, what does it mean to face this question and have...
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The whole world turned upside down. It felt like there wasn't really a space for God within it. And you had to constantly search for what that looked like. 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. It is very easy to be afraid of a family going through a catastrophe.
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It's really difficult because sometimes I also felt that people wanted me to cry with them. And I cry a lot, but I can't cry every time someone cries to me. And I sometimes... felt that it was hard. I didn't know who to comfort in that space. Sometimes what ends up happening if someone cries to me is that the roles reverse. I end up comforting them. I can't say it's okay because it's not, right?
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And I think one of the really difficult things about facing a parent who has lost a child is If you think anyone who's lost anyone, but particularly in parental bereavement, is that you cannot make it better. There is no betterment of this. There's no, it's going to get better. She's not coming back.
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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. It's very hard when people cry to me and I am a little bit at a loss as to where I fit in their grief.
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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.
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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 and
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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.
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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, Ian. We thought we could outsmart cancer in some way.
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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.
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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.
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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.
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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...
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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?
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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.