EP. 173: WHERE IS GOD IN THIS?: GRAPPLING WITH A CHILD’S CANCER
WITH GRANT ROMOSER-CLAUNCH
A pastor shares the spiritual unlearning and re-learning he experienced while accompanying his young son through cancer.
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When a child tragically gets cancer, parents and families often find themselves grasping for ways to make sense of their new reality. It is one thing to know abstractly that we live in a world where the innocent suffer, but it is another thing entirely to suffer alongside your own child. Such a life-altering experience can raise heavy questions for parents, at times forcing them to reassess their most closely held narratives and cherished beliefs.
Our guest on this episode is Grant Romoser-Claunch. Grant is a Christian pastor at Newsong Fellowship in Illinois and a husband and a father. When his four-and-half month old son Simon was diagnosed with leukemia, Grant was confronted with the daunting question: Where is God in this? His 2025 book Bone of my Bone chronicles his journey with Simon and captures the spiritual challenges and growth he experienced along the way.
Over the course of our conversation, Grant shares Simon’s cancer story from diagnosis all the way to remission. We explore how Grant’s faith was challenged and re-formed while caring for Simon and reflect on how deeper learning often requires a preceding process of unlearning. Finally, Grant reminds medical professionals of their moral duty to wield the power of their position with love.
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Grant Romoser-Claunch is foremost a husband and a father. Those are the two greatest callings and joys of his life. Professionally, he works at Newsong Fellowship in Edwardsville, Illinois as Pastor of Discipleship. In his work he seeks to help teenagers and adults alike live into a vibrant, meaningful, and liberative faith.
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2:30 - Grant’s work as a pastor and the path that led him to his work
9:30 - The heart wrenching story of Grant’s son’s journey with leukemia
33:50 - How Grant’s experience with his son’s cancer challenged his faith and motivated him to write
41:50 - The ways in which Grant’s understanding of God transformed throughout his son’s journey
48:20 - How the concrete details of life can lead us to profound insights
1:00:30 - The impact of doctors who wield their power for their parents instead of over their patients
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Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:03] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The doctor's Art, a podcast that explores meaning in medicine throughout our medical training and career. We have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and healthcare executives. Those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging, and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Tyler Johnson: [00:01:02] When a child tragically gets cancer, parents and families often find themselves grasping for ways to make sense of their new reality. It is one thing to know abstractly that we live in a world where the innocent suffer, but it is another thing entirely to suffer alongside your own child. Such a life altering experience can raise heavy questions for parents, at times, forcing them to reassess their most closely held narratives and cherished beliefs. Our guest on this episode is Grant Romoser-Claunch. Grant is a Christian pastor at Newsong Fellowship in Illinois and a husband and a father. When his four and a half month old son, Simon, was diagnosed with leukemia. Grant was confronted with the haunting question Where is God in this? His 2025 book, Bone of My Bone, chronicles his journey with Simon and captures the spiritual challenges and growth he experienced along the way. Over the course of our conversation, grant shares Simon's cancer story from diagnosis All the Way to remission. We explore how Grant's faith was challenged and reformed while caring for Simon, and reflect on how deeper learning often requires a preceding process of unlearning. Finally, Grant reminds medical professionals of their moral duty to wield the power of their position with love.
Tyler Johnson: [00:02:20] Grant, thanks so much for being here, and welcome to the show.
Grant Romoser-Claunch: [00:02:25] Yeah. Thank you. It's good to be here.
Tyler Johnson: [00:02:27] So, you know, the large majority of our guests, not all of them, but the large majority of our guests are directly involved in the medical field in one way or another, which is just to say that having someone who really does not have a direct connection to the medical field is certainly not the only time we've done this, but it is a little bit unusual for us. So can you start by telling us what do you do every day? What's your job?
Grant Romoser-Claunch: [00:02:49] I am a pastor at a church in the Midwest in Edwardsville, Illinois. And so I'm on staff. I'm one of the pastors and pastor of Discipleship is my title. So the sort of day in, day out tasks looks like small groups in our youth group preaching every once in a while, pretty regularly creating, crafting questions for our small groups to take the Sunday sermon and sort of apply it and go further into their own lives. And so that's, that's the sort of a the nuts and bolts of it, I guess.
Tyler Johnson: [00:03:22] So I'm going to go out on a limb and guess that most members of the medical profession are not familiar with how a pastor gets to become a pastor. Just kind of nuts and bolts. What's involved in becoming a pastor? Like what do you have to do sort of credential wise to get there?
Grant Romoser-Claunch: [00:03:37] So it's different. Denominationally speaking for me. What I did was I went to a seminary, to Eden Theological Seminary, and graduated from there with a master's of divinity. My church is a non-denominational church, so it doesn't have any sort of ties or affiliations to any larger organization. So with that, the process for me looked like a period of discernment for myself, but also for the church. And then just conversations with the lead pastor, conversations with the elders, which is sort of like the governing body of the stewardship. You know, they steward the life and well-being and vision of the church. And so for us, it happened to be a lot more internal. So with that, because there's no denominational affiliation, you know, if something were to happen and, you know, I lost my job or whatever, it's not like I could just apply to the church down the street and have necessarily the same credentials outside of just years of experience, I guess.
Tyler Johnson: [00:04:40] Okay. Well, how did you end up becoming a pastor? Why? Why did you decide to devote your life to this?
Grant Romoser-Claunch: [00:04:46] Yeah. So, uh, before I started undergrad, I thought, okay, I love working with people and I love helping people and I think science is phenomenal. So I initially, I was like, I'm gonna do a nursing major very quickly was like, I don't think that's quite it. I think, you know, all the science, all the medicine is, is cool, is exciting, is riveting, is fascinating. But I don't think that's what I'm supposed to do. So for me, it was a lot more of the inward journey and reflection on what has meant the most to me, which was having a small group leader at youth group whenever I was in middle school and high school, and the role that he played in my life as a consistent, loving presence. And so I knew that what I wanted to do was to be a consistent and loving presence. In college, I actually had an opportunity to drive two hours to Hannibal, Missouri, um, which was, uh, a fun, but I was invited by a district pastor, basically to do a pulpit fill. And so I went and I preached, I'm sure, a terrible sermon, but it unlocked something in me. You know, it was that sort of like that fire inside. And I was like, oh, this is this is the thing that I think I'm meant to do. It feels like I can. All these worlds combining. There's a quote from, I think it's Frederick Buechner who says, you know, what's the world's great need and where your passions intersect? That that is the place of a vocation. And realize that that that ministry is that for me, it meets people's needs and real lived experiences and these existential questions often, and these questions of what and why and how and what now. So it addresses some of that and meets them in tangible ways. And on top of all the like nerdier side that I also love, like, you know, reading theology books and all that sort of stuff. So it was a good intersection for me.
Tyler Johnson: [00:06:56] You know, we have spoken on the podcast over time with, I think, an unusual number of, uh, health care providers who are either religious or have at least a sort of a, a spiritual sensibility about them. Having said that, it's also true in one of the things that we've discussed many times on the program is that a lot of doctors, there has often been a sort of sense among health care providers that science is a thing that's over here, and then religion or spirituality is a thing that is over here in this different place. And and kind of never the twain shall meet. And, you know, it's also, broadly speaking, true that although there's some discussion that this is maybe waning now, but for, you know, I would say most of the aughts, 20 tens, you know, most of the last 25 years, the discussion that was that you would read about a lot in the popular press and, you know, in whatever, Wall Street Journal, New York Times, Washington Post, whatever was the what has often been called the rise of the nones. Right.
Tyler Johnson: [00:08:02] To be clear, that's NONES, not NUNS right. Although the rise of the nones could be a separate issue. But that is to say that more than at any time in our recent past, the demographics in the United States anyway, show that there has been an increase, both in secularization and also an increase in atheism and agnosticism, and finally, an increase in people who maybe still hold on to some sort of personalized notions of spirituality, but who don't subscribe to any particular religion. Right. And as I say, there are some signs, there's some debate that that that rise of the nones may may be ebbing now. But but it sounds like for you, you know, forget for a minute about being a pastor, but just personally, it sounds like religion has continued to make sense for you because it gives you a place to, as you put it, answer some of those existential questions, right? To have a place to go when you need to ask questions about why things are happening and that kind of thing. Does that does that sound about right?
Grant Romoser-Claunch: [00:09:05] Yeah. It continues to be a source of a lot of good in my life and experiences that I've had and meaning making, which is something that we all do anyway is search for meaning, I think in one way or another. And for me, the compelling vision of the figure of Jesus is hard to pass up.
Tyler Johnson: [00:09:30] Yeah. So we'll get to that a little bit more, a little bit later in our conversation. But so you came to my attention because a friend of mine made me aware of a book that you recently published called Bone of My Bone, which is primarily what we're going to talk about today. And I should say the reflector, the subtitle is reflections from an oncology Ward. So I'll frame this. I'll back up a little bit. One of the very early guests that we had on the program was a guy by the name of Francis Collins. Francis Collins is a little bit of an unusual figure for a number of reasons. One is because during the Obama administration and even before that, he was the head of the NIH, and also even earlier than that had been if you had to choose. There were many lead scientists. But if you had to choose sort of one coordinating lead scientist on the Human Genome Project back when it was, you know, for a long time, there was a question on whether we would ever be able to successfully read out the entire human genome. That was done for the first time in the 1980s. And completing that project was considered then, and I think is still thought of as one of the most significant scientific accomplishments of the last century. And he was the leading scientist of that movement. At the same time, he is also, you know, an outspoken evangelical Christian and even wrote a book called The Language of God. And in that book, he quotes a lot from C.S. Lewis and sort of talks about his own Christian conversion to some degree.
Tyler Johnson: [00:11:07] And the book is kind of couched as a discussion of. So in many evangelical Christian and other U.S. religious circles, there has long been thought to be a conflict not just between science and faith in general, but specifically between a belief in God and a recognition of evolution. Right? So the thought has been that if you believe that evolution is a is a driving force behind the development of humanity or the development of biological life, then that is seen as being inconsistent with a belief that there is a loving creator who has, you know, designed the universe and cares about and maybe even intervenes in, in human affairs. But Francis Collins makes the argument that he, as one of the world's leading evolutionary scientists, he doesn't see that conflict in the same way, because what he argues is that the mechanism that underlies the way that evolution works. So what biological scientists would call transcription and translation, which is basically the process of replicating DNA, and then the process of using DNA to encode the synthesis of proteins. The name of the book, The Language of God, is a reference to the fact that Francis Collins believes that those processes are so elegant that he considers them to be literally the language by which God, you know, if you will, sort of speaks humanity into existence in effect. So it's a beautiful book. And our conversation with Francis Collins was really wonderful. And I think we had a you know, it was really fantastic to have him on the program.
Tyler Johnson: [00:12:51] At the same time, what we did not get as much into is sort of what I think for many people comes as the logical next step, which is to say, okay, let's imagine that it's the case that Francis Collins believes that the process by which DNA is replicated and then read out into protein, that that is the language by which God speaks. That sounds really beautiful in the sense that it allows a way for us to think about how God could still be behind creation, very much in line with evolution also happening. But then I'm an oncologist, right? And as an oncologist, I take care of patients who have cancer. And in the kind of the best case scenario, my patients often have to undergo a really difficult ordeal, a la chemotherapy and or surgery and or radiation that lasts for three, six, nine, 12, 15. It depends on the person months in order to then eventually be delivered to the other side and hopefully live a cancer free life. But those are the people who are in the better set of circumstances, right? The more difficult set of circumstances are people who are diagnosed with cancer that we know from the get go or find out later is not going to be cured. And then they need to be on chemotherapy, sometimes indefinitely. And this is all just to say that I think it would be intuitive for most people. You know, I can imagine a person who maybe is reading Francis Collins's book and maybe, let's say, even finds it persuasive and really interesting. And then as they're reading the book, they themselves or someone they love is diagnosed with cancer.
Tyler Johnson: [00:14:48] And then it's kind of like, well, gosh, you know, Francis, that was all a real nice story right up until the fact that my husband, wife, sister, brother, mom, dad, son, daughter, whatever got really sick. And, you know, if God loves us so much that God would create the language of DNA to allow for the, you know, evolution of humans in the first place, and then the development of individual humans in the second place, then why on earth does something like cancer even exist? Right. And this, of course, is one of the most perplexing problems of religion generally. Right? Uh, yeah. What is often referred to as the as the theodicy, right? If God loves us and is all powerful, then why does suffering exist? And so I know that you're careful at the beginning of your book to say it is not a formal theodicy and that you're not a formal, you know, trained philosopher. And I get all of that. But at the same time, in a sense, your book is, if not a formal theodicy, it is at least meant to grapple with those sort of next level, really difficult questions. But before we get to how you do that from a sort of a religious perspective, can you start by telling us the story of why were you, you know, you're a pretty young guy. Why were you forced to grapple with these questions in such a profound way at such a young age? Can you just kind of tell us what happened?
Grant Romoser-Claunch: [00:16:15] You're right. So I'm 32 years old. My oldest son, Simon, whom the book is about in large part, granted, it's, you know, it's my own wrestling, my own experience, but it is his story as well. But when he was four and a half months old, he was diagnosed with leukemia with AML. He had lumps on his back and on his head that we weren't sure what they were. Um, and he had a really high fever of 104 on Tylenol. So when the pediatrician opened up, we took him straight away, uh, and she listened to him and said he was grunting to try to get more oxygen. And she said, the reason I'm not calling an ambulance right now is because you're gonna tell me that you're driving straight to the hospital. So then we drove. You know, I'm not going to incriminate myself, but probably too quickly. And, uh.
Tyler Johnson: [00:17:12] We pretty sure if you're four and a half month old baby is sick, there is no to quickly, but go on.
Grant Romoser-Claunch: [00:17:17] Yeah, yeah, yeah. That's right. We were we were just going to let the cops follow us, I guess. So he's four and a half years old now. So this was 2021. Um, but so it turns out that he was having trouble breathing because one of his lungs was sort of stopped working. He was septic. Um, and they, you know, did all the tests, they ran all the things and then the er doctor said that she was 70% sure that it was a cancer, that it was leukemia, but an oncologist would have to confirm that. And then the oncologist, Doctor Simon, came. She knelt down by the bedside, which was really powerful moment. So and she explained who she was and that it was cancer. They'll do some more tests to figure out exactly what kind. But the first thing that needs to be done is to relieve the septic shock, I guess.
Tyler Johnson: [00:18:11] Can you just if we press pause on that, you know, if we're sort of watching the movie of the story of this chapter of your life, and if we pause the reel at just that moment, I mean, gosh, you know, here's a baby who's not even old enough to sit up by himself to crawl, walk, talk. Do much of anything right? Mostly still a little little blob with, you know, things that just kind of move around, right? That's probably all he could do. And, you know, as all new parents are, I imagine at that time that you are eagerly anticipating all of those things, right? When's the baby gonna sit up and when's the baby gonna crawl? And when, you know, and this and that. And now you go from that to a pediatrician's office to an emergency room, to visibly seeing the baby get sicker. Right? If you've ever either had your own small children or taken care of small children and had a child who has difficulty with breathing, you'll know that is just that by itself. Forget about an asthma attack or whatever right is in and of itself a scary thing. So pediatrician's office starting to feel, you know, worried about, oh, oxygen, in fact, Like what? What what? Right now you're in the emergency department. You have the kind of the warning shot from the ed doc, but now you have an oncologist for I mean, who even knows that there even are oncologists for four months old, right? Like, that's not even a thing most people think exists. And now this person comes in and says that your four month old baby who can't even talk yet has cancer, like what was your inner landscape like at that time?
Grant Romoser-Claunch: [00:19:59] The that is a that's a great question. I appreciate that it was a whirlwind, to say the least. Just a, you know, a flood of thoughts and feelings and emotions and the newness of it all of a cancer diagnosis this close to home. And it felt like such a, you know, amongst the like, shock and the horror of a diagnosis like that. There was also in me a, you know, I took. I think I'm just gonna borrow some words from Jesus. He says on the cross. He says, My God, my God, why have you forsaken me? And I didn't, I wouldn't have put it quite like that. But I felt similarly of that. This is a baby, you know, like you said, he's just like basically a loaf of bread and with arms and legs. And as first time parents, you know, now we look back and we realize, oh, he couldn't, he couldn't stay awake more than an hour without needing to sleep. But then he couldn't sleep more than an hour because he just felt terrible because he had, you know, his body was just full of cancer. Before Simon was ever born, we had suffered two miscarriages. And so it was it kind of it felt like almost like a bait and switch, like a divine bait and switch, you know, to put it maybe crassly, but that it was here's this baby that we finally get to have. And then four and a half months later, That's up in the air. Will we get to go home with this baby again? Was really so there was, you know, to put language of feelings to it, right? Obviously there's like terror and like so scared, but there was also like such a depth of like questioning, of doubts, of anger, of disbelief, of, you know, it's that shock of this, you know, the stages of grief and denial being being a pretty common one in that, like that this can't be happening. You read someone else's tests like, are you sure? Is it, you know, all of those, like just hoping and praying and pleading that they were wrong?
Tyler Johnson: [00:22:16] Yeah. You know, it's a weird thing being an oncologist. One thing that I have recognized over time that is a kind of I mean, in the case of adults, In a strange sort of way, it cuts in both directions, but then it is somehow almost. Its absence is almost more poignant in the case of a baby. What I'm talking about is many people who are diagnosed with cancer as adults seem to have this underlying sense that that diagnosis must symbolize something that they did wrong, either something they did wrong or something they didn't do right, right. So if they had only ate more healthily, or if they had exercised more, or if they weren't smoking or if they were, you know, if whatever, there's a whole bunch of different things. And, you know, I think part of this has to do with smoking and lung cancer. I think that whole story sort of formed this kind of a paradigm that a lot of people have now sort of internalized, that cancer is a consequence of a bad choice that you make, but for a baby. I mean, clearly a four month old has not done or not done anything right. I mean, yeah, of any moral moment, right. And so in a sense, like on the one hand, I guess at least there's not a concern about that. This is somehow the baby's fault. But then on the other hand, that makes the entire situation feel sort of imponderable. Right? It's I have noticed that it almost feels weirdly reassuring to be able to accept blame for a cancer, because at least then it seems to make some sort of sense, right? Like there's a thing that you can tie it back and say, oh, well, maybe it's a result of X, even if X is your own fault, right? Yeah. But, but with a baby, there sort of no, nowhere to go that way. Right? It just is this blankly terrible thing that has happened. Yeah.
Grant Romoser-Claunch: [00:24:17] Which is, uh, in a way, it was an easier place to get to for me. But I know my wife really struggled with that and has even just a few weeks ago, we were talking about it and she was like, yeah, I still wonder. The thought still crosses my mind, she said of like, was there something I did something I ate something I was around. Yeah. While I was pregnant that because, you know, he's four and a half months old and the oncologist told us like likely he was born with it. And so immediately she takes that, you know, how could you not? But okay, I did something or didn't do something.
Tyler Johnson: [00:24:58] So in some ways it just maybe transfers to the parents almost.
Grant Romoser-Claunch: [00:25:03] Yeah, yeah. You know, and we saw one thing one time that a certain gas in a gas stove could be linked to AML. And so we got rid of our gas stove and we got an electric stove. And we knew that it wasn't logical. And we knew that that wasn't the case because it's not like we're just have the, you know, had the flames on all the time, but we had the thought we will just feel better if we just got an electric stove. Sure. So we did, you know. And I think part of that is just dealing with and processing, you know, which I think is a, is an okay thing. And somebody out in the world has a gas stove now that they're happy with.
Tyler Johnson: [00:25:46] Okay. So let's go back to the narrative though. So you have your baby, you're in the emergency room, you find out about the cancer, but they say we've got to address the sepsis first. So you so the baby gets moved to the pediatric intensive care unit. And then where do things go from there?
Grant Romoser-Claunch: [00:26:00] So he's in the ICU. The pediatric ICU for four days does really well, responds well to all the all the medicines and things. But again, I mean, that's it's own shock as a parent because the pace of the ICU is much different than the pace of oncology. And it's moment by moment, you know, second by second, even where oncology Things are. We came to learn, are paced and are measured by trends and over weeks or months, often. And so just to see him hooked up to so many things and, you know, strapped down in a bed that was too big, but they had the little sleeve that held them and all the tubes and wires was a lot to process. It was still Covid like the time, but even in the ICU, they let my wife and I be there and both of our sets of parents. And we realized later they did that because they they weren't sure he was going to make it. And then once he was stable, moved up to up to four north, it was the oncology floor of the hospital. The nurse, Megan, God bless her. But she was like, okay, so you know, Grant and Michaela, you guys can stay grandparents. I have to ask you to leave. And so he was stable enough. They were like, we got it from here.
Grant Romoser-Claunch: [00:27:25] And so then we lived in a room with our son. The church, my church was like the most important thing you need to do. Don't worry about anything with work. Like you need to be there. My wife is a public school teacher, teaches second grade. Had some sick days and, you know, days saved up, but had just spent a bunch on maternity leave but could do FMLA. But her school board called an emergency meeting to allow other teachers to donate sick days. And so the rest of her year was donated by her coworkers, some at her school and some at other schools. You know, teachers that she has never met but are in the district. So it was just an overwhelming support back home so that the both of us, we could just stay with Simon. At that point. We lived in a hospital for a month with him as he went through his first round of chemotherapy, which for the protocols for him was, you know, about a week of chemos and then just waiting for his white blood cell counts to come back until we could, you know, and then producing his platelets and, you know, hemoglobin and all that so that he could go home until next round. And he did phenomenally. He did so well. He went into remission after the first round.
Grant Romoser-Claunch: [00:28:43] I'm, I'm getting choked up because it was uh like I said, he couldn't stay awake more than an hour before. And it was after chemo that we saw his personality. It was like we were meeting our baby for the first time at this point at five months old. And he had a little personality. And every time, I don't know how he knew. He's a little jokester, I guess, but every time somebody new would come into the room, a doctor or a nurse, you know, you know, therapist or whatever would come in, he would look at him and cough and they would all be like, give him so much attention. Like, what's that cough? Are you okay? What's going on? How long has he had that? And we're like, he's not coughed all day. Like he's doing it just because you're in a room. And we realize that every time somebody new would come in, he would cough to get their attention and they would, like, start doting over him. So he did it every time. And we were like, oh, this is amazing that, you know, and like, what a wild thing that we are getting to meet our baby at five months old after chemotherapy. Like, I feel like you should be feeling terrible and here you are just coming alive.
Tyler Johnson: [00:29:55] So you go to the pediatrician, you go to the Ed, you go to the ICU, get over the sepsis. Then he gets his first treatment of chemo that lasts for like a month. Then like, what did the big picture architecture of how things played out over the next year years look like?
Grant Romoser-Claunch: [00:30:14] Yeah, as a baby, he had four rounds of chemo that eventually were really sort of spread over a six month period, and we were home for about two weeks between rounds, and in part because he was doing so well and he never got a fever, so he never had to be readmitted. And so it ended up being about over the six month period, he was in remission the whole time, was doing great. So we went home at the end. He rang the bell. It was we were like, okay. And you know, then it's checkups all the time. It was basically a part time job was just driving to the hospital for routine checkups. And at his one year checkup post the end of the chemo, his blood work had come back as that he had relapsed and the cancer had come back. And it was the same. It was AML from what I remember, it didn't mutate into something that was like drug resistant. It was like pretty much the same thing had come back. So at that point, the only option was a bone marrow transplant or a stem cell transplant, which was another just, you know, devastating news to receive. Well, so we had we had dinner that night, Michaela and I and Simon with her parents and siblings, they all came over. Simon was sitting there and, and we were talking about it. And we're all lamenting, right. And we're all just sitting around crying. And he just started cheering. He started chanting, I'll beat it again. I'll beat it again. And it was clarifying in a lot of ways that as a person of faith, right? It felt like those aren't his words. How could he ever come to that on his own? Like that makes no sense. Like he, he doesn't. I mean, in a way he doesn't know any different.
Tyler Johnson: [00:32:17] He's what age at that time?
Grant Romoser-Claunch: [00:32:20] At that time, he would have been, uh, almost two.
Tyler Johnson: [00:32:25] And did he go on to get a bone marrow transplant?
Grant Romoser-Claunch: [00:32:28] And he did. Yeah. So we had a bridging chemo that was, you know, another intensive round just to tank it all and take the immune system and then went into the bone marrow transplant. And we were in the transplant unit for 70 days.
Tyler Johnson: [00:32:46] Whose bone marrow did he get?
Grant Romoser-Claunch: [00:32:48] We don't know. It was a stem cell umbilical cord cell blood that from from a donor. From a little girl who's, uh. All we could know was that she was in a two week age of him. So pretty much the same age. A little girl in California, which was incredible to know that there was somebody who either had the foresight or there was a hospital that had the practice of saying, we're going to keep the cord blood and we're going to bank it and the public bank.
Tyler Johnson: [00:33:18] Okay. So then has the bone marrow transplant 70 days in the hospital and he finished the bone marrow transplant. How long ago.
Grant Romoser-Claunch: [00:33:26] At this point? It was, uh, a little over two years ago.
Tyler Johnson: [00:33:32] And how is he doing now?
Grant Romoser-Claunch: [00:33:34] He is fantastic. He's really good. He's in full remission. He actually just last Thursday, so just a few days ago had his checkup and the oncologist quote said his CBC is beautiful. And so we were we were very excited about that.
Tyler Johnson: [00:33:52] So, okay, I want to make sure we get to the real root of the issue here, which is this. Yeah. You know, I as an oncologist, I don't take care of patients with leukemia now, but during my training, I had time both in a bone marrow transplant unit and also on an adult. I'm not a pediatric oncologist, but an adult leukemia ward. Which is to say that I do not have the experience, certainly of a patient, and I don't even have the experience of the loved one of a patient that you have. And I'm not, as I say, a leukemia doctor myself, but I probably have about as close an insight into that world as anybody who is not in one of those three categories has. Right. And, and I think it's hard for people who have not seen this up close to recognize what it's like to be in the hospital for 30 days with that first dose of chemo or 70 days with the stem cell transplant, right? Never mind if you're doing that. And the person who is the patient is, in the first case, not even verbal yet. And in the second case, just a little teeny kid, a toddler, right? Yeah. You know, I want to say something like, Grant, what? Possible evidence, better evidence. Could there be that there is no God than spending 70 days with a toddler in the bone marrow transplant ward of the hospital? Like, I mean, that that would seem like, number one, like leading embodied evidence in the world for the not existence of God. So. So how do you spend you know what? I'm sure if you added it all up, I don't even know. It would probably have to be getting towards half a year of combined time in the hospital between the the first initial dose of chemo, the transplant, and then the doses of chemo on the other side, you know, in between and other, you know, whatever visits for the hospital is probably around got to be getting towards 180 days. How on earth do you do that? And then you come out of that writing a book about God.
Grant Romoser-Claunch: [00:36:05] What a fantastic question, because I would have said the same thing. And I did feel the same thing, which is why I wrote the book. Honestly, I remember being a kid hearing about pediatric oncology, that that was a thing like that. There were people who did that and had to do that. And I thought, that has to be the worst job in the entire world. I don't necessarily think any differently now, but I understand it more. The way that I knew that I had to process was by writing that I had so many thoughts and questions and all these experiences that I would go home. And it was the hospital's protocols in the bone marrow unit was that only one of us could stay overnight. So my wife and I, we only lived about 35 minutes from the hospital, and so we would take turns every night after Simon was asleep, we would sneak out and one of us would go home and then come back in the morning before he woke up. And it became for me, especially in that second round, Whenever he had relapsed and was facing a bone marrow transplant, it became for me a necessity to figure out exactly those questions, which is for me was boiled down to Where is God in this? So every night that it was my night to go home. Writing has always been therapeutic, but it's also been a prayerful practice for me.
Grant Romoser-Claunch: [00:37:34] And so I would go home and I would write and I would write experiences. And this is the nerdy theological background, I guess, of me, but so that it didn't just go haywire. I wanted to put it into sort of classical Christian buckets, if you will. Right. Like, where is God in Christology? Right. Which is just talk about Christ, talk about Jesus, or where is God in Pneumatology, which is talk about the Holy Spirit. And so where is God in this? And to think about beliefs, doctrines, things that I learned in seminary that people talk about, right? That we assume, and I wanted to put it all on the table and to be honest and say, there are days I'm not sure if that exists. And there are some days where I really hope God does exist. And then there are some others where I believe that God exists. But it felt like more often than not I was in that probably a hopeful, agnostic sort of space of like, I think it's possible, I hope. I sure hope so, which is probably not something that, you know, you would want to hear your pastor say. But yeah, I'm just being honest. So for me, I had to write, I had to lay it out and I had to work it through. So it, I don't want to say like, you know, it was like a voice from outside kind of thing, but it was like an uncovering of a truth that I had seen all along.
Grant Romoser-Claunch: [00:38:57] But I didn't realize until I stopped to reflect, for example. So thinking of because there is something particularly scary And probably because it's so visible of seeing my baby boy, right? Not being able to breathe well. And at one point he had this infection. And so his, uh, O2 was down and so they. But not down at an alarming way. But they had to put the mask when he was sleeping to sort of do like a blow by of the oxygen. And I was like, okay, where is God in this? And where is where is the Holy Spirit? And I was like, it like, hit me. Oh, I was just there that I saw the Holy Spirit, but the Holy Spirit looks like an oxygen mask. So I pulled back from the recesses right of seminary of like that in the Hebrew and the Greek, the root, the the word for spirit to talk about the Holy Spirit is also the same word as wind. And it's also the same word as breath. And so I think the conflation of those ideas is is the point. I don't think it's meant to be neatly separated. I think to talk about the Holy Spirit is to recognize breath and to recognize when.
Grant Romoser-Claunch: [00:40:16] And so I realized, oh, you know, there she is, right? Because it's either gender neutral or feminine. So there's the Holy Spirit. There she is. She's in the oxygen mask. That's the wind. The oxygen that's coming from that is the Holy Spirit. And I couldn't realize that until I got home. And I asked myself the question, where was God today? It became so clear of like, oh, she was right there in the mask. One of the clearest and most obvious connections for me was in Christian circles. It's talked often about the crucifixion of Jesus and his, especially in more conservative circles. But they'll talk about, you know, the blood of Jesus and how it atones for sins. And it does all these things, and it heals and it purifies and whatever. And they often, you know, they talk about it in like a metaphorical or metaphysical sense. And then Simon had a bone marrow transplant, and I'm looking at these little stem cells that just look like blood in a bag, and it's hanging and the blood is flowing. And I thought, this is the clearest representation of God to me. If I know nothing else, this is what God is, that God is in this bag right now in the form of stem cells that are just by gravity, dripping down into my son in a way that looks otherwise, just like a normal blood transfusion.
Tyler Johnson: [00:41:49] Thank you so much for sharing those beautiful insights, which, you know, those are the kinds of things that I think you can't. There is no abstract form in a sense of those insights, right? You. Those are the sort of ecstatic insights that can only come to a person who is there at close range, witnessing the suffering of of someone that you love, you know? So for those who are not familiar, there's a sort of a classical Christian concept of the unmoved mover, right? Which is the idea that in some sort of ancient Christian thinking, God is sort of the thing with no cause. Right? Everything else traces back to God, and then God traces back to nothing except God. Right? God is sort of the one self-defined entity in the universe, and one sort of name that has been given to that idea is that God is the great unmoved mover. But near the beginning of your book, you have this sort of playing with that terminology. You have this section where you say what we see in the incarnation. In other words, God represented through Jesus on earth What we see in the incarnation, and thus through incarnational eyes, is that God is the most moved.
Tyler Johnson: [00:43:10] There is not even a sparrow that falls from the sky without God. Knowing God in Christ suffers alongside, in and for the healing of the entirety of creation. God cannot be a distant, unmoved, unaffected being, at least not if we believe God to be perfectly revealed in Jesus. So I guess I am wondering if you can talk a little bit about how was it through this experience, witnessing the suffering of your son that you came to understand God rather than being. You know, I think that often there is a part of us that wants for complicated psychological reasons and sometimes for logical reasons to think of if God exists at all. We want to think of God's defining characteristic as power. But the the transition that I understand you to be making in that paragraph and in much of what we've been talking about, is to suggest that God's defining characteristic is not power, but rather tenderness and love. Right? In fact, if anything, it's almost the opposite of the classical Christian conception of God as being powerful. Rather, God is defined precisely by God's ability to be moved by our plight. How did you come to that understanding as a part of this experience?
Grant Romoser-Claunch: [00:44:49] Oh, what good questions you ask. You know, some of that I came to in the middle of it while I was trying to make sense of everything. And some of it I would say, has been stuff that I've been reading or digesting or wondering about for a while, even before Simon was born. A few sources. I guess it would be that in the first time of first go around, when he was a little baby, I read this book called Ask the Beasts Darwin and the God of Love, and it's by Elizabeth Johnson. She's harmonizing evolution and God and. But in doing so, she's talking about this macro picture across eons of evolution and evolutionary biology. And what a beautiful work it is. And it helped me to think about. Death in a different way Because it always feels so immediate and so personal, which it is. But there's also this, you know, if you pull back to that almost more cosmic perspective, it looks different for me. It was like this clarifying, uh, reading, I guess, of that God is both cosmically large and immediately present, that there is transcendence and immanence that God operates under both of those at the same time. And it's hard for me to reconcile a God of love, as first John says, that God is love, not that God is loving or likes to choose to be loving sometimes, right? But like God is love.
Grant Romoser-Claunch: [00:46:46] And so for me, that tenderness of God, that love of God is the realist thing that to use? Uh, I think it's Paul Tillich language. Like if God is the ground of being, then being is love. It has this sort of metaphysical structure of love. And then that God works all things together for good and does it in a loving way for loving purposes. And so the platonic or Neoplatonic unmoved mover, I think is, I think was helpful, a philosophical framework for many folks for a long time. But I don't think it necessarily has to be the only, only starting place in that. I think I believe that a more, you know, this is kind of bold and I don't mean it in like a arrogant way, but like a more Christian in the sense of like more centered on Christ kind of way of seeing it is to say, instead of taking Plato's lead or the Neoplatonist. Let's look at Jesus's lead. And in Jesus, do we see a God who is moved to compassion, literally to, you know, to suffer with? Or do we see a God who moves in this power over or is in God's compassion? It is a power that is with and a power that is in and a power that is for without being this dominating power over.
Tyler Johnson: [00:48:23] You know, one of the things that I think as I listen to you talk about all of this, Grant, is that obviously we have no exact way of knowing the details of the believing or not believing that our listeners have. Right. I imagine there are some people who probably line up with you pretty well are, you know, Protestant Christians, some people who are other flavors of Christians, some people who are religious but not Christian at all, and some people who are not religious, maybe even avowed atheists, whatever. Right. But I think that everybody, especially in the midst of suffering. Almost everyone has had occasion to wonder, especially if they were raised in a religious household or with a religious background, but probably even if not to really wonder, like, is there a God? And if so, you know, how can the idea of God even be meaningful if either I'm experiencing this suffering or I'm witnessing this suffering in someone that I love? One of the parts of your book that I found to be really beautiful is a part where you draw an analogy between us and small babies, and you talk about how you can tell, and there's actually neuroscience to back up the fact that when babies are really young, they are, in effect, doing a lot of work to understand. One of the first kind of neurocognitive things they do is to trace the contours of their parents, particularly their mother's face.
Tyler Johnson: [00:49:37] Right. And you and you talk about how maybe part of the issue is that we tend to want to think that we have these very, like, advanced, detailed ideas of who God is and what God is like, but that, in fact, maybe we're more like children or even infants who are just barely starting to trace the contours of God's face. And of course, you know, there's a saying that we like in medicine that the only thing worse than no information is bad information. Right. Which is just to say that if you want to grow to have a realistic conception of God, a meaningful conception of God, you have to start by letting go of whatever misconceptions we may have about God first. Right. And so I would just love to know with all of that as background, as you went through this incredibly trying experience, what did you feel like you learned about God, either in terms of maybe things that you had thought about God before, the experience that you learned were not true, or in terms of things that you either had never thought of or had a different conception of previously that you then learned were different, or came to have a better understanding as you went through this experience.
Grant Romoser-Claunch: [00:50:52] That's a great question. I appreciate you pulling out those that imagery because I think that that for me is such a significant one. Richard Rohr, he says that in order to get to the universal, you have to start with the particular. And that usually folks who are doing theology or trying, you know, which is just talk about God. We try to talk about the universal and bring it down to the particular. And he reverses that and says, you start with a particular to get to the universal. And the poet Mary Oliver. She says that paying attention is the beginning of devotion. You know, those weren't like conscious thoughts necessarily, but as you're saying it, those that comes to mind because that was, I think how I ended up processing was this image that Jesus insisted on when his disciples said, you know, teach us how to pray. And he says, okay, this is how you do it. And he starts by saying, our father. So there's this community aspect, and then there's this intimate relational aspect that in the very first two words that he says of how to pray and that image of God being a parent became so striking to me because here I am as a parent watching my kid experience, you know, hell in so many ways. And so it became such a rich point of reflection, I guess.
Grant Romoser-Claunch: [00:52:27] And so it was what I tried to do, I guess, whether I tried to or not, I'm not sure, but what I ended up doing was just pay attention and pay attention to the particulars. Pay attention to my own experience as a dad that's going through this hardship, that's going through this suffering, unable to do anything medically. You know, there's a lot for social support and you know, the psychological care. But as far as medicine goes, that's was all out of my hands. And so this image of God as a parent and seeing my wife parent our son and seeing, you know, even myself parent him while going through all of this and leaning in, I would say trusting Jesus's words as intentionally chosen. Okay, so what does that mean then that, you know, God is a father, that God is a parent, and that to me, there's not anything I wouldn't do for my kids. And to think of the gentleness of God, the I think maybe we've already said it, but like the tenderness of God, that God is tender and has this loving presence that isn't disconnected, that isn't far off, but that is immediate in the same way that, you know, at the drop of a hat, anything that Simon needed, I would scoop him up or I would attend to it or, you know, click the, the call nurse button, you know, or like, you know, beg and plead for Tylenol because he doesn't have a fever.
Grant Romoser-Claunch: [00:54:09] So, you know, there's nothing to mask. So let's just give it to him. You know, that I would take that advocacy and all that. And yeah, this becoming more and more seeing God that same way that God feels that same way towards Simon and as well as towards me and Michaela and everybody, that there is this tenderness of God, that love isn't just like good feelings, but that it is this affection turned action like that it's to will and to work for the good of another. And sometimes I think it gets a little nebulous when we talk about God or, you know, John says that God is love and sound really nice. But then at the end of the day, what's that look like? And I think it looks like, you know, your baby having an excoriation, right? That's a fun word I learned in the hospital that I never wish I did right. Because of all the chemo, you know? So he had this terrible diaper rash. And so we became good friends with the wound nurse, because she had to come in and save the day and get us the special creams and the special way of cleaning.
Grant Romoser-Claunch: [00:55:17] And we took shifts holding him so that he could sleep throughout the night. And so every hour we would tap on the other person and we would pass. You know, when he was a baby, we'd go back and forth. And I think if you know, as Jesus says, like, if, if you know how to give good gifts to your kids, how much better, how much more loving, how much more attentive and tender is God. So I, you know, I think that that for me came out of the realm of abstraction and into the realm of reality. And it didn't happen immediately, right? Because that is the way of suffering is we question that. I question that I was like, I don't know if that's true. You know, some days I wasn't sure if God existed. Some days I thought if God existed, I don't know if God can be trusted, but I chose to lean into the pain, to lean into the hurt. The way I opened the book is with the phrase, our wounds are the are opening to the world and I. So I chose to lean into the vulnerability, lean into the wounds. Because if God exists, I know God is in the suffering with us.
Tyler Johnson: [00:56:31] I think that the two things that I'm maybe drawing out from that, I mean, obviously, you know, as is appropriate for your job, you are, you know, to some degree a Christian theologian, right? You can quote verses from the New Testament at the drop of a hat and, and have clearly thought through a lot how to sort of weave those scriptural verses through your thinking here. I think that if I, as a doctor, am trying to think through what lessons can I draw out from what I'm hearing you say, that would be helpful for people who are either going through suffering themselves or in particular, given our audience doctors who are listening, who maybe, you know, are witnessing the suffering of others at close range. I think two beautiful things that I hear you landing on that I think can apply in ways that are helpful to people who are Christian, but also to people who are not. One is the idea that I think there is something pretty instinctive in us when we suffer or when we see someone who we love suffer, that wants to, you know, oftentimes a sort of, uh, informal term we use for God is a higher power. And it's interesting that even that informal title tells us what we think we want God to show up as, which is as power, right? And certainly in the face of a child with leukemia or any other, you know, similarly tragic circumstance, what I think we want is power to make that thing go away, to make that better, to make it not be true. And, and one of the things that I hear you saying is that one of the great truths that you landed on during this difficult time was that the was the idea that maybe sometimes, rather than looking for a God who presents as a higher power, we should be looking for a God who presents as a higher love or a higher, to use your word, a higher tenderness. Right.
Grant Romoser-Claunch: [00:58:44] Mhm.
Tyler Johnson: [00:58:44] And then the other thing that I hear you also saying is this beautiful idea that ultimately there is some inseparable difference between love and sorrow or love and suffering. Right? Precisely because and in fact, I think the argument can be made that to love another person, whether we're talking about loving our child or whether we're talking about loving a spouse or a brother or sister or friend, and even, you know, we don't tend to use the word love very much in medical circles. But I remember a guest we had on many years ago, Wesley made the argument that we should be more comfortable with using the term love in terms of a doctor patient relationship, obviously understood and the appropriate way and not meaning some things and meaning others. But in any case that any time we love, we make ourselves vulnerable. That's part of what love means. And any time we make ourselves vulnerable in a world where people are subject to disease and death and, you know, financial catastrophe and losing their job and, you know, anyway, all the other things that can happen anytime we make ourselves vulnerable on behalf of another, we become vulnerable to pain, sorrow and suffering. And so an argument can even be made that it's not even so much that love and sorrow are separate things, separate, you know, sides of the same coin so much as it is that perhaps they are different ways of experiencing that same kind of personal connectedness, that same kind of devotion to another person. Mhm.
Tyler Johnson: [01:00:34] Let me ask you this, Grant, sort of, you know, one of the things that is always a little tricky here, right, is we're trying to figure out how to make your insights as a Christian and even a theologian, legible to medical professionals who may or may not share your faith commitments. But one thing that is also true, right, is that you, you know, good grief, have had more interactions with doctors in the last, however many years than most people would ever want to have in their entire lives. Right? And so.
Grant Romoser-Claunch: [01:01:07] Nothing against your but yes.
Tyler Johnson: [01:01:08] Nothing against us. But we should give you a prescription for seeing fewer doctors, right? So as you reflect back on all of those experiences, what advice or insight can you give to our listeners about what they can bring to the encounters that they have with their own patients, or for those who may not be doctors, just with, you know, the other important people in their lives, but like, what can they bring that will make them a better doctor. What have you observed by spending all of this time with these people who are trying to help you and your family? How can our listeners be better as they care for others?
Grant Romoser-Claunch: [01:01:46] Yeah. And God bless you all that do this work. It is no small task, no easy task. Certainly not a light burden. So, and I'm sure you all catch a lot of flack from a lot of families that are just hurting. And so I hope that it isn't taken personally, but that you get to be seen and appreciated and recognizes that we're all on the same team against a disease or an illness or a pain. And I'm sure you don't get enough thank yous. So first off, I just want to say thank you to you and to all the doctors and medical professionals listening. Thank you. Um, and, uh, you know, I think you're just a couple minutes ago talked about power. And I think, you know, in like this idea of a higher power. And I think that there's something really significant there that and I don't want to say that, you know, power and tenderness are opposites, but that yeah, when we do think about higher power, we do typically think of a power over, right? The sort of controlling dominating. But doctors have a significant power in a room as the expert, as the one that you have to go, you know, through years of nuanced and intense medical training and that it is a wielding of power for and that a power with a power alongside. And that I think that tenderness lives in, in those places. And I think that's the same kind of power that God wields, that God isn't a power over dominating, but that God is reflected almost by nature in the profession that you hold of having this power that is used for others.
Grant Romoser-Claunch: [01:03:35] And I think of one particular story that is coming immediately to mind is when we first got the confirmation from Simon's primary oncologist, Doctor Saini, about his cancer diagnosis. She came in and we were on on the bed with Simon, and she knelt down next to the bed. At that point, she's either she's looking eye to eye like eye level or even up to us that even these non-verbal. The way you carry your body in a room is such a significant, uh, it can be received so significantly to have a doctor who comes in who lowers the their voice, who kneels down, who lowers their body right in this physical way to be able to say and to embody a power with right? Literally not a power over standing over, but this power with somebody else. Because I'm sure that it is difficult in that as a person who's breaking the news that if anything, you know, maybe this is a caricature, but like, let me just pop my head in to say it and then keep walking down the hall so I don't have to see your reaction because you are people too. And to be able to like, keep doing your job, I'm sure you know, it all adds up. But that intentionality of moving in, of being with, of being on the same level was huge. And immediately when she said that we, you know, we were like, okay, thank God that this is Simon's doctor because that this is the posture that she's bringing in because that's what we need. We need somebody who's going to be who's going to be level with us, you know.
Tyler Johnson: [01:05:35] No, I, I really, really love that. I mean, people who have listened to the podcast for a long time will undoubtedly have tired of me talking about kneeling at the bedside. But I love two things about the way that you phrased that. One is the idea of the posture that we take towards medicine and the posture that we take towards people, right? I think there is such a unspoken and often under-recognized or unrecognized power in the positioning of our bodies with respect to other people's bodies. Right. And I think you're right that that is a beautiful idea that so much can change with just changing the pronoun, right? So that instead of talking about power over, we're talking about power two or power four or power with. Right. And it is undoubtedly true that as doctors, we have this just truly striking amount of power, both in terms of what we can do in the hospital. Right? You think about, for example, a surgeon, right? There's nobody who I mean, it's just wild that you lay yourself on a table, allow them to anesthetize you and then say, cut my body open. Right.
Grant Romoser-Claunch: [01:06:46] That's just.
Tyler Johnson: [01:06:47] Wild. But same thing for a medical oncologist, right? To take your child to a person and say, I trust you to appropriately supervise the injecting of what? I'm sorry, but what essentially amounts to poison into my little baby's body in hopes of making their leukemia go right. Like the whole thing. There is so much power there. And that idea of power with rather than power over, I think is, is really beautiful. And it does remind us that even, you know, the thing that I have found that's ironic about kneeling at a patient's bedside is that it literally takes Zero more seconds to kneel at the bedside as opposed to standing at the bedside. But if you think about it, right, especially for a patient who's lying on the bed, you literally standing over really is power physically, literally over the person, right? Whereas kneeling, it really does communicate a sense of power with or power to, well, grant, you know, just to once more state the obvious here, we know that this book and by extension, this interview come from a place of such deep suffering. And you know that these truths are hard won over the course of years. We, of course, wish that you did not have reason to have come to quite such deep truths in quite such a terrible way. But given that this happens sometimes and has happened with you and your family, we just want you to know how much we appreciate you writing the book and how much we appreciate you coming to join us on the show. Thank you so much for being here and please know we really appreciate it.
Grant Romoser-Claunch: [01:08:29] Thank you so much and hoping that you know that it can mean something to somebody.
Tyler Johnson: [01:08:34] And that's our hope as well.
Henry Bair: [01:08:39] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the doctor's art.com. If you enjoyed the episode, please subscribe, rate and review our show. Available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [01:08:58] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [01:09:12] I'm Henry Bair.
Tyler Johnson: [01:09:13] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.
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LINKS
Read an excerpt from Bone of My Bone.
Learn more about childhood cancers, treatment, and family experiences.
