Sarah Dabagh: 0:00

Hi. This is Sarah, and this is Dan, and we'd like to welcome you to PediPal. A now restarted, now alive palliative podcast about all things pediatric palliative care. We're back, baby. Yeah, we are. Where have you been, Dan? Oh, let me tell you. Is that how we're gonna start this?

Daniel Eison: 0:15

I think we're started exactly that way, probably with that phrase. I'm gonna, I'm gonna use that. Hi. This is Sarah, and this is Dan, and

Sarah Dabagh: 0:26

we'd like to welcome you back to PediPal.

Daniel Eison: 0:29

In case you've forgotten, a podcast about all things pediatric palliative care.

Sarah Dabagh: 0:34

If you are listening to this in the year 2026, or beyond, on your podcast, manager, you may not realize but for the rest of you, you may have noticed that there has been a several month gap since our last recording.

Daniel Eison: 0:45

We're glad to be back, and we're going to do things a little bit differently in this episode than we've ever done before. Kind of ease back into hosting a podcast. Usually we have guests join us, but this time, it's just the two of us, and we're going to talk a little bit about what we've been doing and thinking about since our last episode.

Sarah Dabagh: 1:08

That is a very broad way to introduce the subject. I will narrow it down a little bit. Would you like to share? You like to go ahead and share? I think none of us know how to be like So Dan, how was your life changing medical experience?

Daniel Eison: 1:23

So our last episode came out in September of 2024 and then in October of 2024 I got an allogeneic stem cell transplant for myelofibrosis. I had my transplant done at Memorial Sloan Kettering in New York City, and today, on the day we're recording this, I'm day plus 117 post transplant. I spent almost four weeks in the hospital and then got discharged, and at this point, I'm doing pretty well.

Sarah Dabagh: 1:54

I actually wonder if you can share, I can share a little bit about your background with bmts and why it seemed especially poignant that that is what you were getting.

Daniel Eison: 2:04

The poignant and ironic thing is that not only do I practice in pediatric palliative care, but after my fellowship and before I was able to find a job doing pediatric palliative care, I worked for about two and a half years as a hospitalist on a pediatric oncology floor, and I spent about a third of that time on the BMT service. So I have taken care of many kids who were undergoing bone marrow transplant while they were in the hospital. And as you might guess, that was a double edged sword for me going into this process. What was the good edge of that sword? I mean, there were definitely some good things. I had a lot of knowledge about what a BMT might look like, and when my team talked to me about different things to expect, like the conditioning regimen or the side effects, I could say pretty confidently, yeah, I know I've heard about these things, and I knew what it looked like, and that was helpful, I hope, for my team, but also helpful for me. It wasn't a big mystery. Going into it, I could say I've seen this. I kind of know what I'm going I'm going in with my eyes open. I know what to expect, in some respects,

Sarah Dabagh: 3:14

natural follow up question. The other edge of that sword, I think,

Daniel Eison: 3:18

both working as a hospitalist and especially working in palliative care, I was pretty attuned to all of the things that can be unpleasant during the process of getting a transplant. I had seen EMTs with a lot of complications and a lot of things have gone wrong. So one other thing that was kind of interesting for me from the hospitalist perspective, maybe one thing that it didn't prepare me for as a hospitalist, I was purely on the inpatient side, and so I saw all the acute parts of the transplant, you know, the week of conditioning, and then a few weeks post, and the majority of this time, and the majority of this process is an outpatient process for me, and I'm grateful that I didn't have to spend longer in the hospital. But nothing that I did as a hospitalist kind of prepared me for what this would be like before going to the hospital or after leaving the hospital.

Sarah Dabagh: 4:02

So did you tell them that you were a doctor, or did they figure it out? Or did you tell them exactly what it is that you practice?

Daniel Eison: 4:08

Yeah, I really wanted them to be aware of that, and I wanted them to be aware that I was a palliative care doctor, because I know that the relationship between palliative care and oncology is, to say the least, and a complicated one, and I figured it was going to be having a major influence on how I perceived my transplant, and so I wanted the team not to be surprised by that. What's

Sarah Dabagh: 4:30

the relationship with palliative care like there?

Daniel Eison: 4:33

So I did meet the palliative care team, the adult palliative care team. I met several members of their team. They are awesome. I requested it. I think I would not have gotten a palliative care consult if I didn't request it. It is not standard for every BMT, and I requested it very early on, like pretty much my first transplant clinic visited because I didn't want to be thinking about palliative care stuff. I wanted to be. Totally a patient, and so I wanted to kind of outsource palliative care, thinking to someone else, and they were receptive to that. Everyone's attitude about me requesting palliative care was kind of benignly bemused. They didn't totally see why I needed it, but they were happy to cooperate. So

Sarah Dabagh: 5:20

as you talk about outsourcing palliative work, not being your own palliative doc, are you thinking about anticipatory symptom needs as you have this conversation, or are you really thinking, I need someone to talk through all my if and when and hopes and wishes and worries?

Daniel Eison: 5:36

I mean, both? Yeah, that's kind of all I have to say about that. It was both. Was both things, okay,

Sarah Dabagh: 5:42

what did they ask you questions that you expected? Did how they practiced palliative care there align with your expectations and your own practice?

Daniel Eison: 5:51

Yeah, I would say so there were no real surprises. What I was actually really surprised by, though, was they weren't the only ones asking me palliative care questions. There was this telehealth visit I had a little bit before I was admitted with a nurse practitioner from the BMT team. I didn't really know what the visit was going to be about, but she introduced herself and said, You know, I'm going to ask you some questions, and I understand these might be sensitive questions, personal questions, and so if you're not comfortable, like, feel free not to answer anything. And I'm I'm like, What? What is she gonna talk about? Like, what is this? What is this about? And she goes, you know, just first of all, like, what can you tell me about yourself? Is there anything about you that we should know to help us provide better care for you? And I was like, oh, first thing you should know, I'm a pediatric palliative care doctor. I know exactly what questions you're going to ask me. I ask these questions every day, but go ahead, like, let's talk. And she then proceeded to ask me, like the five initial consult questions, what are your hopes and what are your fears? And tell me about your supports. And I was like, it's great. And we had a kind of a meta conversation about it all. And I asked her, you know, are you trained in palliative care? And she said, No, I'm just, you know, a BMT. NP, I've been doing this for 20 years. And I said, you're like, you're really good at it. Like, this is palliative care. Like, this is what I do all day. And this has been a great conversation. And so it was kind of, it was kind of funny that that's where that was coming from. You know, palliative care wasn't specifically integrated into BMT. They weren't doing automatic consults, but I did a palliative care initial consult with the BMT team. Essentially

Sarah Dabagh: 7:29

did your answers to any of those questions surprise you.

Daniel Eison: 7:33

I don't think they surprised me, because I've been thinking about those questions myself. I was diagnosed about two years before my transplant back in 2022 almost two years to the day, actually. And at that point, they said to me, with this condition, at some point in your life, you will need a BMT. That's the only cure for this. We predict it'll be in, you know, 10 or 15 years. And that timeline obviously shrunk and shortened as the months passed and my disease progressed, but as soon as I sort of heard that BMT was likely my future, I started thinking about it. Did

Sarah Dabagh: 8:07

anyone ever directly ask you your code status and my context for that? In case anyone can't tell from your voice is you are young and otherwise healthy, and the kind of person that by appearance is saying everyone assumes will be a best case scenario in BMT. Obviously, everyone not being you, giving me your the way that your brain works and the things that you've seen, but from a BMT provider's perspective, you are able bodied with healthy organs, and you're coming into their BMT to be one of their good cases. And so did anyone ever directly ask you your code status, or was it implied?

Daniel Eison: 8:40

People did ask, and I was maybe a little bit over the top, and, well, I don't know if I was over that I was I tried to be very, very clear with everyone what my preferences were. I wanted to be full code, and I was very clear about that to everyone. And I said, you know, I'm young, I'm otherwise healthy. I have a young family like, please, if something happens, do all the things, like, put me on ECMO, take me to the ICU, intubate me like I do want you to do all the things, because I didn't want anyone to assume that based on my job, I might not want these things and be Oh, he's a palliative care doctor, like he wouldn't want to suffer. I was like, no, no. Like, bring on the suffering. Like I want to live.

Sarah Dabagh: 9:19

So, I mean, we had that conversation. Joanne wolf said something very similar, right, when we had that conversation with her, which, you know, she said, just because this is my line of work, doesn't mean that if I, when I not, if, when I get a diagnosis at some point that I won't be, you know, pursuing curative treatment to the full existence, that I can Exactly,

Daniel Eison: 9:40

exactly, and, you know, and I also made it clear to everyone, and especially to my family in numerous conversations, that obviously, if the situation changed and my clinical status was such, you know, that I wasn't expected to recover. And then obviously, there were other considerations. And we talked a lot about things. Like, minimal, acceptable quality of life. I tried to make it clear to the important people. I probably talked about it more than anyone was expecting me to given the expectations, you know, like, like you said, based on my age and functional status, but like you said, also based on my past experience, I have seen, you know, not the best outcomes in a lot of bmts, and so I knew that it was something that was important to discuss. Fortunately, there wasn't any moment yet in my BMT journey where I've had to confront those issues directly. My hospital course was extremely smooth as these things go, you know, and I didn't at any point feel like there was a threat of mortality. But beyond the sort of baseline of just getting transplant, I think it's it's definitely something that was very much in the forefront of my mind. How did

Sarah Dabagh: 10:53

the physical experience of being a patient align with your expectations? So it sounds like things work. Well, happy to hear that nothing is ever completely smooth. Did you get medications you've prescribed before? Do you use? Do you experience anything for the first time as a patient that you used to talking about as a provider or giving as a provider?

Daniel Eison: 11:12

Yes, all of the above for all that, it was a smooth experience. It was unpleasant. It was not fun. I would not choose to do it again. It was not exactly what I expected in good ways and bad ways. The biggest surprise for me was that I didn't actually have that much pain. I've taken care of a lot of kids who ended up with a lot of mucositis, and thankfully, I did not develop mucositis, and I was very much expecting to I'll put in a major plug for doing cryotherapy during chemo infusion, keeping the mucosa of the mouth and throat cold during administration of chemo that causes mucositis. I had only one day during my conditioning regimen when I got melphalan and about half an hour before and during the half hour infusion, I ate Italian ices, pretty much just back to back to back constantly. I ate like 10 Italian ices in a row during chemo, and less

Sarah Dabagh: 12:08

than having your hands in ice baths, absolutely

Daniel Eison: 12:11

better than the cooling cap and the hands in the ice and all of that stuff. And it worked. It actually worked. I did not develop any mucositis. The hair on my face didn't fall out around the places where my lips were very cold, so I maintained a little bit of a goatee throughout while the hair on my head all did fall out. I did experience other unpleasant side effects. I had significant nausea and anorexia. I lost a lot of weight while I was in the hospital because I wasn't eating very much. And it was kind of surprising to me, actually, how quickly the associations are made between experiences and sensations. Like, if I was nauseated and trying to force myself to eat, it would be hard to eat that meal again without bringing up the feelings of nausea. There are still certain menu items from the hospital that I think about and they make me feel a little queasy just thinking about them. And so you build these associations. And it wasn't even just with foods. It was like if I was listening to a particular song at a time when I was feeling particularly physically bad, it was then hard to listen to that song again. And so that was something that I don't think I understood, sort of the strength of that psychosomatic connection you asked about, like, what medications I got that I've prescribed before. I've always loved olanzapine as a prescriber, and I also love it as a patient. Olanzapine, as Mary Lynn McPherson said at the last ah, pm conference, olanzapine is amazeballs, and I agree it is a great, great medication in general, anti emetics are great. At one point, I got a big dose of dexamethasone during chemo, made me a little hypomanic. That was fun. Didn't expect that. So what

Sarah Dabagh: 13:49

do you think about your experience as a patient? Will change the way that you care for patients moving forward?

Daniel Eison: 13:57

Yeah, that's kind of the big question, right? And that's a question that I ask myself a lot during this process, I've kind of been wondering, like, how will this change me? I think a couple of concrete things before I get into the bigger stuff. I feel like I will never order a medication, PRN, ever again. PRN really does mean patient receives none, not because no one brings it, but because it's hard to ask, asking for symptom relief is scary and kind of makes you have to be vulnerable. You have to admit to yourself that it's bad enough that you need someone else to help you, and you have to be honest with yourself about how bad it is. And so it's this kind of lack of control, in some ways, you have to impose on someone. And maybe this says more about me. Maybe another thing that I learned that I'm going to take back with me is that the hospital is not a nice place to be. I That sounds simplistic, maybe. And there are many things about the hospital that are intended to make the experience nicer for patients and families, and they do. Yeah, and people do a great job, and for all that anyone on the medical team can do, it just stinks to be in the hospital. It's boring and lonely. I'm the kind of guy who likes meaning and metaphors, and I obviously thought a lot about the kind of metaphorical and symbolic language that I wanted to use to describe and inhabit this experience of transplant, and then, like when I was in the hospital, like in the thick of it, it was so easy for the metaphors to just all fall flat. It was just the hospital is this like deeply disenchanted space for a patient in some ways. So as much as I wanted to think about what I was doing as a renewal or a quest or a journey or a battle, or, you know, pick your favorite metaphor, just like gritting my teeth and doing what I had to do day after day came down to just like, I don't know, shuffling 14 laps around the floor to get a mile in and looking at the same boring landscape photographs over and over and over again, and just like getting through the hours and the minutes, you want to think that it's important and meaningful, and it's just not in so many ways, it's deeply unspecial and UN meaningful. And I think that might have actually been the hardest part about my transplant process, or at least one of the hardest parts, and I think remembering that for my patients and their families is going to be really important. Leaving the hospital was just such a weight off my shoulders. My physical symptoms got better, just like walking out the door. It was remarkable, actually, the extent to which, just like going somewhere else made me feel better. So while

Sarah Dabagh: 16:45

that could be a really beautiful, natural ending point, I mean, ask or make observation, maybe ask an additional question, it does not surprise me to hear you say that your physical symptoms lifted as you physically separated from the space that was associated with your nausea and anorexia and boredom and all of these feelings based on your observation from before that, that connection, that circumstantial connection to music or food items or whatever it was when you were feeling poor, was stronger than you thought. The opposite of that for me, as I think about that, and as you say that, is to think about, for many of our patients, and really, many of our families, how the hospital becomes such a safe place they feel more comfortable being at in a way that is almost in direct opposition to that observation that you had. And I don't know that's because the home environment for some of these kids with medical complexity and the stresses of taking care of them in the home environment is equally or even sometimes more stressful than taking care of them in the hospital. But it's interesting that you say that. It's not surprisingly to say that, but then in some ways, for me, that feels in slight conflict with how some of our pediatric patients and their families experience the hospital setting. Yeah, I

Daniel Eison: 17:57

agree 100% and I think part of that is that children's hospitals or pediatric services do a better job of keeping patients and families happy and engaged. And one of the lessons I'm taking from my now post transplant experience is that, yeah, being out of the hospital is hard in its own way too, the vulnerability that I feel, especially being immunocompromised and during during flu season and COVID season and being now actually moved back in with my two young children, who in the last two weeks have both had flu, I definitely sort of feel how scary the Outside world can be, and I feel the scariness of not having someone there at the press of a call button, like, if I have some kind of a symptom, do I need to be evaluated? Is this the beginning of something even more frightening? And so, yeah, I can also definitely feel how patients and families take comfort in being in the hospital too. Here's a question, Did you suffer? Yeah, I did, and I think not in the ways that I expected to. You know, I didn't have a lot of pain, and we often complete pain with suffering. Not having pain threw off my suffering detector a little bit. So when I think back, my impulse is to be like, No, I didn't suffer. I think part of that is also one of the ways I'm coping by minimizing the experience that I had. Because, as my wife reminds me, there were many days when I was really quite unhappy in the hospital. And it's easy, in retrospect, to kind of gloss over that and be like, yeah, there were a few days there where I was, you know, didn't eat much, was nauseated and but it's fine, like I did fine. I got through it, and I'm past it. And in the moment, yeah, I was, I was suffering. I think the other aspect that I consider to be suffering is, you know, if we go with Eric cassell's definition where suffering is that unpleasant experience that constitutes a threat to the integrity of the self, there were moments, and I still have moments, even after being in hospital, where, you know, I worry. About how my life has changed and whether there are certain symptoms and certain compromises and certain features of being post transplant that I'm going to live with forever moving into this more chronic stage just worrying about like, what is my body like now? What is my life going to look like now, and that, I think, has caused me some real concern, but that's an evolving process. I think that's something I'm grappling with just like as we go forward, I'm going to have to figure out.

Sarah Dabagh: 20:39

So this is usually where we would talk about our take home points, but I think we'd like to share with you our listeners, our plans moving forward. We are back. Thank you for your patience with us during our hiatus. We are thrilled to say we're going to be doing monthly episodes again. We are getting the ball rolling. We are rusty, and so we also want to send out an invitation to help us get a momentum going to anyone who's listening here to send us ideas, feedback, thoughts, offers to be on friends. You know you'd like to nominate What Not to Wear, a style 1998 whatever, and that was but please reach out. We will be starting back up next month, and we're excited to be back.

Daniel Eison: 21:20

Hey, this is Dan a gain. We recorded this interview back in February, and now it's May. So I wanted to say I'm about six months out from transplant and still doing pretty well. If you're interested in helping people who need bone marrow transplants, I strongly encourage you to sign up as a donor in the US. You can do that through the National Marrow Donor program at nmdp.org. If you're outside the US, I don't know all the websites, but Google does, and I still encourage you to sign up. My donor lives in another country, so you never know who you might end up helping. Lastly, I'm happy to report that that sense of meaning I talked about wanting has continued to grow, in part thanks to recording and editing this very podcast episode. So thank you listeners, and of course, Sarah for making that possible.

Daniel Eison: 22:04

Thanks for listening. Our theme song was written by Kevin MacLeod. You can follow us on bluesky, where our username is, PediPal.bsky.social. You can find the notes for this episode and all the others on our website, pedipal.org if you'd like to submit thoughts, objections or ideas for future episodes, please reach out through the email on our site. This has been PediPal, see you next month.

Daniel Eison: 22:27

It's funny because I don't even really remember what I said in the interview. It's been a while. I think

Sarah Dabagh: 22:35

I think we ended with, did you suffer? I did, you know, like, I think we ended on...

Daniel Eison: 22:41

Should I say something like, Hey guys, I'm not suffering so much now. Like, hey for anyone worried not I'm not actually suffering. I don't know. Is it okay not to end it on a bright and breezy I think so. It's palliative care. People are used to that. I.