AI in the Cancer Journey: How I'm Using AI to Help My Son
Nathan shares how he used AI tools like GPT-5 Pro, Claude, and Gemini 3 to navigate his 6-year-old son's cancer journey. He details using AI to research treatments, double-check medical decisions, and plan for potential recurrence, highlighting its role in patient advocacy.
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Show Notes
This deeply personal episode shares how Nathan used AI to navigate his 6-year-old son's cancer diagnosis and treatment journey. He details using GPT-5 Pro, Claude, and Gemini 3 to double-check doctors' decisions, research treatment protocols, plan for potential recurrence scenarios, and handle complex secondary issues like mold remediation during immunosuppression. The episode reveals AI's transformative potential as medical advisors, providing analysis comparable to human doctors while enabling more effective patient advocacy and personalized care planning.
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CHAPTERS:
(00:00) A Son's Diagnosis
(06:05) Exponentials & Early Symptoms
(13:30) Crisis on Vacation (Part 1)
(15:00) Sponsors: Framer | Tasklet
(17:41) Crisis on Vacation (Part 2)
(24:26) AI's First Intervention (Part 1)
(34:34) Sponsor: Shopify
(36:31) AI's First Intervention (Part 2)
(36:41) Advocating for Answers
(47:56) The Scariest Days
(59:06) AI as Bedside Co-Pilot
(01:11:42) Managing Secondary Risks
(01:18:28) Planning for Relapse
(01:31:54) AI's Undeniable Value
(01:43:02) Rage for Right to Try
(02:02:55) Outro
SOCIAL LINKS:
Website: https://www.cognitiverevolution.ai
Twitter (Podcast): https://x.com/cogrev_podcast
Twitter (Nathan): https://x.com/labenz
LinkedIn: https://linkedin.com/in/nathanlabenz/
Youtube: https://youtube.com/@CognitiveRevolutionPodcast
Spotify: https://open.spotify.com/show/6yHyok3M3BjqzR0VB5MSyk
Transcript
Main Episode
Hello and welcome back to the Cognitive Revolution. Today's episode is going to be a little bit different. By far the most personal episode that I've ever done. Definitely not an episode I ever expected to be doing or wanted to be doing, but here we are. So it'll be a little raw. I've taken a bunch of notes and prepared for this, but really haven't scripted it out. So it's going to be a lot of kind of recollection mixed in with practical anecdotes of AI and we'll see where all it goes. The title says it all from a family standpoint. My son has cancer. Six-year-old Ernie, otherwise totally healthy kid, everything very normal. And even October 11th, we've gone back and looked at the history in quite a lot of detail at this point. As of October 11th, he had a huge weekend jumping up and down on trampolines, bounce houses, just having a great time, seemed totally normal. And we never could have expected at that time how quickly things would've gotten really serious. And in all honesty, at one point, like super scary in just the two and a half to three weeks following that time. The good news is, I won't keep you in suspense. The good news is that he has been diagnosed with Burkitt leukemia. He was initially diagnosed with Burkitt lymphoma, but they did find some of it in the bone marrow, and that makes it Burkitt leukemia as we now understand it. This is one of the fastest growing cancers of all cancers. It has a doubling time of as fast as 24 hours, which is really crazy. And the good news, though, on the flip side of that is that it is also one of the most responsive to treatment cancers of any known cancer. And so because the situation was getting pretty scary and his condition did seem to be worsening by the day, They actually did start at Children's Hospital of Michigan in our hometown of Detroit. They actually did start chemotherapy a day before getting the final pathology report back and having what they considered to be a definitive diagnosis because they felt the time, and we as parents were very much pushing for this at the time as well, time was really of the essence and it was important to get him into treatment, even if we didn't have exactly full certainty on what was going on at that point, it was pretty clear that it was cancer. And the good news is that that's now been about ten days and he has responded extremely well. Fortunately, basically a best case scenario in terms of his response, the mass of cancer. He had a big mass in his belly, lesions all over his abdomen, even some above the diaphragm in the bone marrow. possibly in the cerebral spinal fluid, although that's a little bit ambiguous still. But after the first wave of chemotherapy, something like maybe an 80% reduction in the central mass of the cancer, lots of the lesions and colonies that it had established around the body totally gone. Although not all, there are still a few that are left. And the best update that we got just in the last 48 hours before recording this is that as of the last test, his bone marrow and also the spinal fluid was clear. And that's basically a best case scenario response to treatment. And means at this point, the overwhelming odds are that he will be cured, which means the cancer will go away and it'll never come back. And he'll go on to live a, hopefully a long and totally normal and healthy life. If that weren't the prognosis, I don't know that I would be sitting here recording this now, I really wanted to get to this milestone before sharing anything. And very fortunately for us and for him, he does seem to be responding about as well as one could hope. So that's the situation. And now with that, I'm going to basically try to tell you what I've learned about using AI in a medical crisis situation. I've said many times, if it were really serious, I would use both human and AI doctors aggressively. And that is what I did. And I think we definitely got a ton of value from it. Also learned a few things, I think, about how we could have used it better. And certainly some ways in which it, like the human doctors as well, are not perfect. But nevertheless, the bottom line is just an unbelievable amount of value. So I hope that this will be interesting to the AI obsessed regular listener, but also hopefully it will be valuable to other people who maybe don't have as much AI experience and find themselves confronted with a medical crisis for themselves or for a family member as we just have and are thinking, how can I make the best use of AI? So the first observation I think I want to make is just that exponentials are crazy. People say this a lot in AI, right? Where are we on the exponential? It looks flat behind you and vertical in front of you, regardless of where you are. Cancer is also an exponential. There's obviously a ton of different kinds of cancers, ton of different mechanisms, ton of different nuances to all the many different kinds of cancers, and that's really an important caveat that'll come up again and again throughout this narrative, but at heart, cancer is out-of-control growth of cells.
That's how I explained it to my son, and we've talked about cells before this, so he knows he's got little microscopic cells in his body, and he knows that there are different kinds, so I've just explained that there's skin cells and bone cells and Cells that make up your eyeballs and cells that make up all the different parts of you. Of all those many different kinds of cells, one cell, which in his case was a B cell, part of the immune system, started growing out of control. And that is what started to cause him all of his problems. And so this is an exponential process, right? When one of these cells becomes cancerous and it enters into this out of control growth phase, It just divides and divides. They say that the doubling time of this Burkitt leukemia is as little as 24 hours, which does show that in an exponential like that, things move very quickly. What seemed to be fine or starting to get mildly concerning very quickly can turn the corner into a real crisis. And that was a very surreal experience to live through. It is most extreme in the kind of cancer that he has. The doubling time is certainly much lower in other kinds of cancers. Again, the flip side of that is that because most of the chemotherapy drugs that are available today target the growth mechanisms of the cell and specifically kill cells that are in the process of growing and dividing, this type of cancer is very responsive to that treatment. Other kinds of cancers that grow more slowly are are less responsive. You have maybe more time to figure things out, but you also have a harder treatment challenge, it seems, than the one that my son was facing. But yeah, exponentials are really a strange thing to grapple with. And we honestly don't know when it started. When we look back at the beginning of the school year, let's say early September, just two months ago, there was one week or so when he was complaining of his tummy hurting, and Didn't seem to be bothering him too much, but he did complain about it a number of times. And so one day I got a call from school and they said it was bothering him. We'd heard that enough times. I said, okay, I'll pick him up, take him to the doctor. They said at the time, it's probably constipation, kids going back to school this time of year. A lot of times they don't want to use the bathroom, whatever. Give him some prune juice. He should be fine. And so we did that and it seemed like he was fine. It seemed like that complaint of the tummy ache went away. Now we wonder, was that the very beginning of this exponential? Was it just a little murmur? The sort of equivalent of seeing some of these emergent AI capabilities pop up and then, but they're not as big of a deal as maybe that one symptom suggested, or maybe the whole thing is actually a much bigger deal than that, than that little preview suggested. We don't know still if that was actually related to this, and I don't think we ever will. The next symptom that he had was knee trouble. He was complaining of pain in his knee. And because he started complaining of that after this big weekend with tons of bounce house and trampoline activity and all that kind of stuff, we basically, again, felt like we had a really good explanation for it. He just did like hundreds of jumps on trampolines and bounce houses. Over the weekend he probably just hurt his knee a little bit. He was complaining about it for a little longer than it seemed like we would expect. He hadn't really complained about a knee like that before, and he'd certainly run and jumped and done all kinds of stuff, so it seemed like it was lingering. I would say my wife was definitely more concerned sooner than I was. I'm generally the kind that's like, yeah, he'll be fine and he's always been fine. She worries a lot more and is much more inclined to take him to the doctor. And she did take him to the doctor with this complaint of the hurt knee. And even at that time, she had it in her mind that maybe this is leukemia. And I think to some degree, that notion came from AI. She's definitely a regular AI user as I am. And that was the first occurrence of this thought that maybe something is really wrong was, let's say about four weeks ago from when I'm talking to you. And nevertheless, the doctor said, nah, I think it's fine. He's most common cause of this sort of thing is indeed jumping on the trampoline, come back in a week if it's not better. We happen to have had a family vacation scheduled, and so a couple of days after that, we went on vacation. The last episode that I recorded for the podcast before recording for you right now was October 21st. I just had this vacation planned and happened to record a bunch of episodes and had them ready to go. And in the intervening weeks, we've just been publishing things that I recorded October 21st or before, and that was turned out to be... Fortunate, not that I would've prioritized the podcast over my son's health in any event, but we happened to have enough inventory that we were able to just keep putting episodes out even while I was dealing with all of this. We left for vacation on October 22nd. And at that time, I would say we did not have any reason to be really concerned. My wife had this idea, maybe it could be something like this. She was starting to worry about it a little bit. She, in all honesty, is a worrier.
Obviously, many parents are about their kids. And that is appropriate. I think definitely one of the big themes of the experience is you do need to advocate for the patient, whether it's yourself or your kid in the process. If you really feel in your gut something is wrong, that is a powerful signal that doctors don't always listen to, but they should. And yet I would say, at least for me, and I think she had a little bit of a different view by that time. But at least for me, when we left for vacation on October 22nd, I didn't have any sense that there was anything really wrong. The tummy thing had passed, the leg was still bothering him a bit, but I don't know, I thought maybe he did really tweak it a little bit more than we thought. And I think if we come back and it's still bothering him, we'll have to maybe go get a knee MRI or something. He was also tired. the week before we went on that trip. But we'd had a big week. My brother was in town. We stayed up late a couple of nights. There were a few different things that sort of explained why he would be tired. So in my judgment, at the time that we'd left for vacation, there was really nothing to worry about. But I'm pretty confident that at the time we did leave for vacation, in fact, the cancer was underway. And with the exponential growth of the cancer in his body, we started to hit threshold points. where it started to become undeniable that, okay, something is going on here. And it came in waves, it wasn't like all the time, but at times just really in pain, not sleeping well, moaning in the night, restless, not able to sleep, clearly uncomfortable in the night, better at times in the day. Motrin did treat it well, so it wasn't like a super severe pain, but there were some times when he was just screaming in pain, in agony, and it was like, okay, we've never seen a behavior like this before. It was October 24th, Friday, driving home from a big day's worth of activities that, and he had participated in them mostly pretty well and had a decent time and was even playing on the playground and running around a bit and stuff. We went to a food festival in La Rose, Louisiana, and it was a fun time and he enjoyed it. But on the way home, oh my God, I've just never heard, honestly, probably any kid scream in pain like he was crying out. He was just like, my tooth, my head. It seemed like the pain came from a bunch of different places. That is, as we've learned, a classic sign of a potential cancer. The tooth were like, maybe he has a cavity. I don't think that was it either. It was just somehow the body's registering pain in all these different places. But he was just clearly so bad in that moment, crying out, screaming, so upset, even asking to be taken to the hospital. We're like, Should we take you to the hospital now? My wife was like, Let's take him to the hospital now. We asked him, Do you want to be taken to the hospital now? He said, No, take me in the morning. We trusted that for lack of a better way to decide. And in the morning, took him to an urgent care. At the urgent care, they did an x-ray of the knee. They said that looked fine. Kind of checked him over. By that time, he was much calmer, seemed much more normal. I'd say one of the tips to parents in general navigating a mysterious medical situation would be take video of their worst moments and show that video to the doctor because I think there was a disconnect between what we had seen and the way he was presenting in the urgent care clinic that day. He just seemed pretty normal, pretty fine. But if the provider had seen that video, they might've thought about it quite differently. The other thing to do is definitely log the symptoms, be pretty thorough about it. We hadn't done this yet at that time, but we started to do this later and then present a medical professional with the detailed history of what has happened. I don't think you need to do that for every sniffle, obviously, but if you're starting to suspect that something might really be wrong because of a kind of confusing constellation of symptoms, then writing them all out and having the provider read through that in black and white. I think we found to be pretty effective in terms of just getting the case out there, getting them to take the survey level view before we get into questions or before we start going down any particular rabbit holes on this symptom or that symptom. But we hadn't done that yet. So as of the urgent care visit on Saturday, the 25th of October, it was, yeah, knee looks good, don't really see anything wrong. We tried to get a blood draw there, but it's not easy to draw blood from a six-year-old sometimes, and my son certainly did not make it easy on them. Actually, a real proud dad growth moment as he's gone through this is he has become much better at taking a blood draw. So even in this extremely difficult time for him where he's been feeling bad and having all these things happen to him, he has been able to show... growth and learning, and now we can stoically sit there and take a poke and get the blood draw. But at that time, he had not developed that skill yet. So the folks at the urgent care were like, eh, we can't really take his blood, but we don't really think it's too important. But if you want to do that, you probably have to go to Children's Hospital. They're specialists in taking blood. So we left there. We went on with our day.
He was definitely not feeling good, low energy, not in like terrible pain, but You know, ups and downs, just clearly not himself. Like it was becoming clear that something was going wrong. But we tried that. They sent us away without anything too clear. So carried on for another couple of days. And then on Tuesday, which was our last full day there before flying home again, we're just out trying to enjoy the afternoon and he is just screaming in pain, demanding ice. He wanted to ice his face and he's never done anything like that before with all these different things. Coming up, he was also starting to run a low-grade fever. We had been also texting with our pediatrician back home to just get their take on it. And they are really good about engaging with us via text message any random time. Finally, they said, I think you should take him to the ER. There's enough stuff going on here at this point. Better safe than sorry. So we audibled our plans for Tuesday, took him to the ER, Children's Hospital of New Orleans. And they basically came to the same conclusion that the urgent care did. Again, by the time we got there and he got settled down and calmed down and had the tablet in the waiting room, they weren't seeing the screaming in pain, what is wrong with my baby kind of behavior that we had seen. They did take blood and what they found was basically Everything was normal. All the cell counts, all the chemistry, all this kind of stuff pretty much came back normal. There was just one red flag, LDH, lactate dehydrogenase. His was elevated. The reference range is, in the units that they use, a couple hundred to a few hundred. His was up around 1,500. So it was like three times the reference range. This is a marker of cell turnover. When cells die, Lactate dehydrogenase ends up in the blood. And when they measure the level of the cell DH in the blood, they use that to infer how much cell turnover is going on in the body. And some is certainly normal. It's never expected to be zero. Our cells are always turning over. But if you have a cancer developing, then that can really elevate that. So That should have been a red flag. However, it came back from the lab at the hospital with a note that said that there was some hemolysis of the sample. And what that means is that the lab technician noticed that the cells in the sample were already starting to break down when they did the measurement. And when that happens, they basically... He seemed inclined to just throw out that test because, again, when cells break down, they give the stuff off, and when blood gets drawn, after a while, cells start to break down. So the next thing to do is just repeat it. They did repeat it. They got the same number again, but again, it came back with the same note, hemolysis of the sample. So every other test looked good with this one outlier, which both times they ran it at the Children's Hospital had this note that hemolysis of the sample, you probably don't think about it too much, and so the doctors there And I was with the rest of the family. It was just my wife Amy and Ernie at the hospital at that time. They said We've ruled out anything life-threatening. I do remember that language very distinctly this test We think it's an artifact of the hemolysis. You should follow up with your pediatrician when you get home But we don't think there's anything serious going on. We've ruled out anything life-threatening so you can go home and We, for the moment, took that and had the last couple hours in New Orleans that evening, and then the next day, we flew home. When we got home, this was the first time we had real data. Everything else was, yeah, a couple, six weeks ago, his tummy was hurting for a week. It seemed like that seemed to pass, and then the knee, and then he's been complaining about the tooth, and then he's got this kind of restlessness and apparent discomfort at night, and then he's got this... Low grade fever, but it wasn't even a fever. It was like 99 point something degrees, not technically a fever. And these moments where he seems to be just so unwell, just crying out in pain, but no data, right? We were, okay, what does that story add up to? The doctors weren't making too much of it. My wife and her gut, I think, had this sense that something's wrong with my baby, which it's hard, I think, for doctors to know what to do with that at times, like, It means something, that mother's intuition, certainly not without false positives. But with these blood tests, now we had some data. So when I got home that night after the kids got to bed, I stayed up late and then compiled all the information that we had. So we got the health portal thing from the New Orleans Hospital, logged into that. This stuff is not great. The data infrastructure, as anyone who's spent time in this, in the medical system knows, access to data is not great. portability is not great.
The first thing I had to do was literally just click into a bunch of different test results and copy the full view. Because I didn't know at that time if I should trust the screenshots alone. I could have just taken screenshots, but I didn't know if that would lead to worse performance from the models. And this was really important, right? So I was like, and I also was thinking, oh, maybe I can have an agent go through and Click on all these things and grab the more detailed view for each test. But my end thought was like, nah, this is n of one, right? If I was doing this all the time, maybe, but I'm not. I just want to compile this one time and get some, get some good AI eyes on this case. So I just did it myself purely manually copy and paste, visit every, everyone. I trust myself more than I trust. an agent on a one-off basis to do a good job of that. So I pulled all that together, wrote up the, this was the first time when I wrote up the medical history. Amy and I went back and forth on that a little bit. I wrote everything I could remember. She added a few things, and then we put that and the test results, and I just tab tab every model. I did GPT-5 Pro Deep Research, Claude 401 Opus, and of course Gemini 2.5 and Grok 4, just all across all the tabs. And then I just put in the same big prompt with, here's the test results, here's the history from the parents, analyze the case. And this was for me a major pivot moment. My wife would say I should have been listening to her more and maybe I should have been. And I was getting concerned for sure, but I wasn't jumping to, especially because at the hospital they had said, we've ruled out anything life threatening. It doesn't seem like a serious issue. Follow up with your pediatrician. I was in that mindset. But still concerned enough that it was the first thing I did when we got back to compile all this information and put it into the AIs. And this resulted in a real freak out moment for me, to be honest, because the AIs pretty much all came back with different tone, which was interesting, but they pretty much all came back saying, You cannot ignore that LDH. That is a red flag. hemolysis of the sample would raise the level, but it probably wouldn't raise it that much. And so that is a real concern. You need to go seek additional medical attention in the next 24 to 48 hours and make sure that you get a proper workup done of this kid. And they were starting to use leukemia as one possible cause of all this. Still saying probably wasn't the most likely thing. It was at the top of the list, not necessarily in terms of likelihood, and I wasn't really asking it to give me like percentage guesses at that point anyway, but it was at the top of the list in terms of, obviously if it is this, it's really serious and your whole life is about to change if it is this. So ruling out leukemia was like the first thing. That was kind of the way that they framed it, except for Claude, which was like, basically this seems like leukemia and was like, quite alarmist in response, quite emotional. And I've gone back and forth, honestly, on whether that was appropriate or not. I think I think about how Amanda Askell talks about Claude being always a stranger in whatever context it's operating in. And what would a virtuous person do? A virtuous world traveler who's a visitor to all these places and just trying to be as helpful as possible. I don't know. I think Claude might have it right. It was jarring. The Claude response was by far the most alarming. It did cause me to freak out and have, and I never have anything like this, honestly, but I did have a mild panic attack or anxiety attack or something. I'm not sure that's really the right term for it, but I was freaking out sitting here at my desk reading all these things and just, oh my God, is this really happening? Could this be really happening? Yeah, I think Claude doesn't know me, doesn't know how I'm going to think about this. I found that I preferred the GPT-5 Pro response. Gemini 2.5 was always good, but I wouldn't say it really added anything too much. And Grok 4, I wasn't super thrilled with. I didn't try Grok 4 Heavy, to be fair. That might've been better. But I found that I preferred the GPT-5 Pro response. A little longer winded, more detailed. more clinical, less emotional, still basically conveying the same message that like, this is a red flag and you need to pay more attention to it, but not in a sort of highly alarming way like Claude did. That kind of was just too much for me and I honestly have gone away from Claude and favored more GPT-5 Pro during this time. But I do also think that like, Claude was right. It was really urgent.
And if it was talking to somebody like me most of the time, who isn't by nature particularly concerned and is, Oh, it'll probably be fine, it'll pass, then maybe that kind of alarming language really is what was necessary to get me over whatever hump or denial I might have been engaged in and actually doing everything that I could, which again, as it turned out, because this is in fact the fastest growing cancer known to man, and the doubling time is 24 hours, it really was important that I get into a different gear. So I was put off by that from Claude. I found that I didn't want that in future interactions, and yet maybe it was what I needed in that one moment to just make sure that, okay, this dude needs to take this seriously. How am I going to make sure, as Claude, that I get him into the right headspace so there's no more delays and he does everything he needs to do. For that, it did work. Interesting to think about what would have happened if I didn't have Claude and I only had the other ones. I think I still would have been in that headspace. Some of the episodes that we did see with him just being so obviously deeply unwell were haunting. We're not going to just ignore that. So I don't think I had to have that from Claude, but I could see slightly different situations. That kind of real alarm bell ringing from Claude might be the right thing to do for the patient, even if it's not the kind of tone that I wanted to hear and ended up scaring me away from the model a bit for most of the rest of this episode. Overall, at this point in the story, again, we still didn't have much information. I would say the AIs were more accurate than every doctor we had seen up until that point. The New Orleans doctors were wrong to say that they had ruled out anything life threatening. The AIs did not make that mistake in my prompting across the board. They all said, you need to go on and try to rule that out, but they did not consider the results that we had to have ruled that out. And quite on the contrary, they considered it to be a live possibility. Now, interestingly, My wife, Amy, was using GPT-5. She had not yet upgraded to Pro at that time. I guess it's on me as a the local AI influencer for failing to convey to her, use Pro for anything that really matters to you. But she was using GPT-5 and she did have the paid version, just not the $200 a month version. And one thing that she tried also was a very similar thing. In fact, she extended my initial prompt and response, and she pasted in screenshots from the portal showing all of the results. So whereas I had gone and copied them as text, she just tried the screenshot approach. And that, interestingly, did work in the sense that I think the model had no trouble interpreting the content of the screenshot. But one thing that was on the screenshot version that didn't get copied into my notes was this hemolysis thing. I had made a note of it in my prompt. In the medical history that I wrote, I had said that we took them to the ER and that the doctors did all these tests and deemed them normal, explaining the LDH being high with this hemolysis explanation. But that had come in my voice and the results as they were presented in black and white just showed the actual levels. When she put in the screenshots, the UI in the portal itself had, in addition to the results, this text saying hemolysis of the sample, don't take this super seriously, or whatever exactly the language was. And in response to that, it actually did make the same mistake that the human doctors had made. Basically said, we throw that out, we look at everything else, it's normal. Basically the same reasoning path that the human doctors went down. Going back to one of my earlier comments, if it's something serious, absolutely use humans and AIs, you're going to need them both. And they both have a lot of value to add. You can do N of much more than one with AI, whereas with the human doctors, you're obviously very limited in the number that you can speak to and for how long and how many different ways you can ask the question and how many different ways you can present information. I would say use Pro is one lesson. We did get better results from GPT-5 Pro versus just regular GPT-5. And also do multiple takes with multiple different variations on the way that the information is presented, and then look at the totality of what you're seeing. You can get a lot of second opinions. You can get N opinions from AIs, and while they did in some models in some cases with the certain presentation of information did make the same mistake that the human doctors in New Orleans did, other models with slightly different presentations definitely did not make that mistake, and at least one, Claude 401 Opus, really tried to leave nothing to chance when it came to making an impression on me, the user, the father of the patient, that you need to act with urgency because there is at least a decent chance that this is really serious. So that was a pivot moment for me.
It was like, okay, even though sometimes it may be saying everything seems fine as the human doctors had, other times it's saying, You need to act with urgency, like it's time to act with urgency. Next day we went to the pediatrician, saw him. He again said, I still think the most likely scenario is that this passes. You never really have an explanation. And that's pediatrics. The kids have these complaints. They come and go. As long as they pass, they seem normal. We don't worry about them. But I do think you should go to Children's Hospital and see an oncologist. Just because I would hate to think that I'm missing something better safe than sorry. And any kid who's been complaining of pain for this long deserves a thorough look. So he did a nice job of advocating for us and he actually made the phone calls that needed to be made, got us an appointment first thing the next morning at Children's Hospital. And this pattern almost played out again. We saw the doctor, she reviews things, she basically says, I don't think this sounds like cancer. My guess is it's more of an autoimmune type of thing, but I'll do a physical exam. And actually, this is something that I would also advise parents especially, but even for yourself. One thing that I had not had the intuition to do at any point in this process was to ask AI to interview me for more information or to ask AI to guide me through a physical exam of my kid. And I think that might have actually been really helpful because another hinge moment in the case, which I think could very plausibly have been missed by all the humans in the room, was when the pediatrician touched a spot on his lower left abdomen physical exam. He really, you know, recoiled in pain from that. The rest of his body had been touched, palpated in all the different ways and fine, and he doesn't like that stuff, but. He was tolerating it. And then on this one part in his lower left abdomen, all of a sudden it was like, ow, that hurt. And we didn't think too much of it at the time of the pediatrician appointment. But when we saw that happen again with the oncologist, Amy and I both said the exact same thing happened yesterday. And I, if I could coach myself earlier, I would say use AI to talk through a physical exam, do it on yourself or do it on a kid and see what you can turn up. Because all the talk, all the, the record of the symptoms, which we did bring in at that point, even the blood tests, which had the red flag, because he was presenting so relatively calmly and normally in those moments in the office, they never quite added up to, we need to get really serious about it until that moment and that touch. We saw that exact same thing yesterday, doctor. And then she said, okay, we need to get an ultrasound. At this point, again, you're like, let's get the ultrasound. How soon can we do that? And this was Friday, naturally, right? It was, it was Halloween, October 31st, Friday. Ah, we'll see when we can get that scheduled. This is a moment where Amy gets credit for doing some Forceful advocating. She was like, basically, I'm like really worried. Can we do this right now? And they were able to do it. And I give them credit as well for listening to her and for going ahead and doing that. They sent us down. This was all at Children's Hospital of Michigan. It's a huge complex, the Detroit Medical Center. It has all the machines, all the technicians, everything you could need. And I think they did a really nice job basically from that moment for the full next week as we went through all the procedures and everything for diagnosis of prioritizing this kid with the recognition that, okay, this actually might be something really serious. So we get sent down, the technician doesn't tell anything, go back up to the doctor. She sees us again. We were there five hours, I think, with her between seeing her and going and going other parts of the hospital and what have you. And her response was, okay, now I am concerned. They do see something. My guess is at this point, they were kind of sugarcoating it for us. It was just the preliminary read that's been happening a lot in our experience. Some procedure, some diagnostic, whatever, some scan happens. There's a preliminary read. The doctor managing your case talks to the radiologist or whoever is doing whatever procedure to get their preliminary impression. But you don't really get real data at that time. You don't get a report. You don't get anything that you can really take home. We weren't recording all the appointments. We probably should have been. That would be another tip. Record all these appointments, have AI transcribe them later and glean what information you can with the help of the AI transcription. But we just had this little conversation. She said, they do see something we can't diagnose on this basis, but I am concerned. And so I want to get you in for an MRI as soon as possible. And we'll see you back here in the clinic next Thursday. Still didn't seem like it was like a total emergency situation at that time.
Again, they weren't even saying it's necessarily cancer, could be a benign cyst or something like that, but definitely going to take a harder look at it and MRI is the next step. When we did get the full ultrasound report, which did pop up in the patient portal over the weekend, Running that through the AI made it pretty clear that, okay, we have a serious problem here. And at that point, it was like starting to really look like our kid might have cancer, which is a hard thing to get your head around, especially because he seemed totally fine two weeks prior at that point. But you read things like there's a five centimeter by six centimeter by four centimeter mass in his belly, and there's also something on the liver, and there's also some other stuff in other places. Probable involvement of the spleen, probable involvement of the kidneys. And you're like, okay, this seems like it's maybe really happening. So they scheduled the MRI for Monday. That weekend, he wasn't suffering too bad. But the debate at home was like, should we take him into the emergency room even sooner and try to accelerate this even more? Or do we just wait for the MRI on Monday? With kids, they do the MRI under full anesthesia. Because they just can't sit there long enough. It's a full hour that they have to sit in the tube. And I don't think our kid would have been willing to do that. And most kids aren't. So they do it under general anesthesia. Amy was, I think we should take them in sooner. I said, they said Monday. And they were saying at this point, yeah, we were asking, how urgent is this? How short is this timeline? Because it all seemed like it was happening pretty fast. But again, it was about to start happening a lot faster. We didn't know what was in store. But they were saying, eh, these cancers, they grow pretty slow. At that time, their best guess, and AI also concurred with this, was neuroblastoma. And they were kind of like, they grow relatively slow. They change on the timescale of weeks or months, certainly. We definitely wouldn't wait a month, but a couple of days probably isn't going to make a big difference. It'll be fine. Since he was gonna be put under general anesthesia, and he'd never had that before, and I've never even had, prior to this last couple weeks, never even seen a person go under general anesthesia. I was, let's do it Monday under controlled conditions. There's a plan for that. Everybody's got their plan. There's a schedule. It seems like it'll be safer to do it on the schedule and according to plan, rather than go into the emergency room and try to push for them to do it there, and hopefully they will, but might it be more chaotic? or whatever. Ultimately, the attending oncologist who we called over the weekend, her judgment was more consistent with mine, which basically amounted to take some Motrin, if he's feeling okay and he doesn't have a big fever, come in on Monday, it'll be fine. These things don't move that fast. Weekend wasn't too bad. He took some Motrin, it was controlled, his pain was controlled, he was walking, he was still able to walk up the stairs. Certainly not as best. Certainly low energy. Certainly something is not right with my baby. We know that. But it was still seemed very plausible that it really wasn't that urgent. These things don't move that fast. And had it been neuroblastoma, it would have been both slower growing, but also, as alluded to earlier, a lot harder to treat, actually a lot worse prognosis. We didn't know all those details at the time. But if I had to critique the doctors there, I would say there was high uncertainty. And we did start to ask AIs for percentage chances at this point in time. And we were getting neuroblastoma, maybe 30% chance, and lymphoma, maybe 25% chance, and benign mass, this percent chance, and whatever. But were we effectively acting according to the worst case possibility? I would say the human doctors probably anchored a little bit too much on the most likely scenario and didn't probably give enough weight to other still not much less likely scenarios, still very plausible scenarios that in fact would demand more urgent attention. And sure enough, that is where we ended up. We went in Monday for the MRI and they said, okay, with that, we'll now do a biopsy and the biopsy they were able to schedule for Tuesday. And so we went on Tuesday and he had a whole bunch of procedures. The biopsy itself was a little surgery, three holes in the belly to get at the main mass. And they also took the part off the liver. They did a bone marrow aspiration, they call it, to get some bone marrow to see what's going on in there. I think he had a CT scan that day. The whole history, there was a lot of procedures. So. From the biopsy, we were directly admitted to the hospital. And at that point, we were very glad to be directly admitted to the hospital because he just was clearly getting worse. It was one of these things where you're like, again, time has this weird feel where looking back, it's flat and in front of you, it's vertical. But if you zoomed out and said, Where were we two weeks ago? Where are we now? Where were we one week ago? Where are we now? Then it was like, Oh my God, this is actually moving pretty fast.
And at some point in that Tuesday of the biopsy and Wednesday, he was really looking bad. And we were just like, this is going downhill fast. And at that point was when I also started to get into it. My wife is a natural advocate for her child at all times. I'm a little more chill, but at that moment I was like, okay, what we are seeing here is now getting really scary. I would say those were the scariest days of my life also by far. The biggest cries I've had in the last 20 years, legitimately, were the biggest one was the first time they put him under anesthesia. I really wasn't ready for that. It was so sudden and it just made the whole thing feel so real. And it was like, oh my God, like I'm handing my baby over to these people to literally cut into his body and do all these things. And oh my God, and this is going to be the beginning of such a long road. And we still don't even know what's going on or what the prognosis was. So I had a good cry about it at that time, but also really was scared enough to move into a pretty strong advocate mode. And this is when I was like, you guys have done well so far, was my message to the, the team at the Children's Hospital. And I think overall they have done really well. I've talked to an oncologist friend at a bigger center and she said it's at bigger centers sometimes it can even move more slowly. This is a pretty big center, but they did seem to move pretty agilely and coordinate schedules, and it's a huge operation, obviously. So to get the kid in from a Friday visit to a Monday MRI to a Tuesday biopsy, it was like pretty good. And yet it seemed for a minute there, maybe it's still not gonna be fast enough. So on Wednesday we were, and this was one, two, three, four, five, this is now November 5th, so this is 10 days ago. We're just feeling and they didn't have anything scheduled for Wednesday. There was going to be a draw of cerebral spinal fluid the next day, but there was nothing really on Wednesday. We're just sitting there in the hospital and he's getting bloated. They're giving him fluids, but he's all puffed up, swollen, can barely get out of bed, really unsteady on his feet, just weak as can be. And we're just like, you are looking. I didn't say this to him, of course, but in our minds, we're just like, you are looking terrible and we are really scared. So we began to push the doctors for, look, it now seems clear that every day is of the essence, like from, from yesterday to today, what we're seeing is so scary. We need to absolutely be prioritizing this as fast as we possibly can. And their message was very consistently, okay, Don't worry too much yet. We need to get to the diagnosis. We need to get to the diagnosis. We need to get to the diagnosis. Before we get to the diagnosis, we don't know what the treatment plan is going to be. With the diagnosis, then we will refer to what the standard of care is, and then we can execute on that. We understand like you're in agony here waiting, but we can't treat appropriately without the diagnosis. And so the point of advocation became like, we need to get this diagnosis. And I was like, the weekends, obviously the cancer doesn't care about the weekend, but the medical system functions quite differently on the weekends. And that was one of the reasons I had been hesitant. And the oncologist on call at the time had been hesitant to rush into the emergency room and try to get a weekend MRI. But now I'm thinking, oh my God, like, it's Wednesday today. If this slips at all, we're not going to have a diagnosis till Monday. And I was like, I told the oncologist there at bedside, five days from now seems like a really long time. Like, I think we, it's imperative that we get this started by Friday. And right then, my son said something like he couldn't move his legs. He needed to pee or whatever. I was like, okay, get up. And he was like, I can't. And the oncologist was startled by that. He took a sharp breath or said, oh my. And clearly, that was a pivotal moment for him where his concern jumped up. I think, in fact, actually, my kid could use his legs at that point. I think he just was really tired and not feeling good at all, obviously, and didn't want to, and said, I can't. But him saying that was enough to, I think, take the oncologist from standard protocol. We're gonna get the diagnosis, then we're gonna treat. And yes, we're trying to accelerate everything we can, but we can't get ahead of the diagnosis. to after hearing that and going and conferring with the team or whatever and thinking over himself, the next time he came back, he said, I think we should go ahead and start the chemotherapy even before we get the official diagnosis. I agree with you, time is of the essence. And they had narrowed it down enough at that point that he was pretty confident it was gonna be some kind of lymphoma. From the biopsy, the surgeon, they don't do diagnosis by like, eyeball in surgery, but he came out and said, it's definitely not neuroblastoma. He basically felt, I know what that looks like, and this did not look like that.
So that put them much more in the lymphoma category. And with that, there's different subtypes of lymphomas, and you might treat them somewhat different, and you might treat them a bit differently depending on where all it's found in the body. All that was still unclear, but at that point, the doctor switched over into Okay, we're going to break the rules a little bit here. The treatment for any of these different types is similar enough. And we're like pretty confident at this point. It is one of those things. Let's go ahead and get the treatment started and we'll refine our decision making as the final reports come back. But better to start now with somewhat imperfect information, given the trajectory that he seems to be on. versus waiting, potentially having it slip past the weekend. So they started the first drug of the chemotherapy that Wednesday, which is just a steroid that's very commonly used, but it is part of the chemotherapy regimen. And then the next day on that Thursday, after they did a few more procedures, that's when they started with the more serious, like classically chemotherapeutic drugs. And it was good they did because he really was Again, exponentials doubling time of 24 hours, getting weak, looking swollen, could barely move. As we've learned more, obviously this is all terrible luck, macro. But in some ways, I think he was kind of lucky in that the cancer had grown a lot by this point. And it was all over. The big mass in the belly, part on the liver, all over the kidneys, lots of different places, in the bone marrow. possibly in the spinal fluid. Again, that's still remains a little bit ambiguous. Basically, they found some in there at one point, but it was a very low amount and they're worried maybe it was contamination. Not quite sure what to make of it. Nothing in his brain, thankfully, or spine, thankfully. But yeah, regardless, okay, start the treatment. He's clearly on a very bad trajectory. Start the treatment. Catch it that next several 24-hour doubling times. I honestly don't know how long you would have lived. It's clear that without treatment, he wouldn't have lived very long. But exactly how long, I don't know, and I haven't asked that question, but it certainly seemed plausible that like from that Wednesday to the following Monday, if things had slipped that long, that barely, maybe barely could have made it to that Monday. I think one of the, one of the threshold effects also that we were approaching at that time, I believe, was organ failure of various kinds. For all the cancer had grown, all of his Again, it's a good luck, bad luck. How do you think about it? The good news was that all of his organs were functioning well when we went into the hospital. The kidney, the liver, all the enzymes, the markers that they look at, they were all good. That was part of why in New Orleans they said, We've ruled out anything life-threatening. As the cancer grows, it starts to choke off. the organs. The flow of fluids in and out of organs is critical. If fluid can't get in or it can't get out, you start to have a real problem. He never had that problem, really. I think he maybe started to flirt with it that Tuesday and Wednesday before the chemotherapy started, but he never really had it. He never really had anything approaching serious organ failure. But I do think in the next few days, we would have probably started to see one or multiple organs start to fail just as they're getting choked off by the growth of this cancer throughout his body. So they started the chemo. The next day we did get the information back. This is now that would now be Friday, November 7th. And at that point they said, yep, it does look to be a lymphoma. We believe it is Burkitt's lymphoma. There's still some more even more fine-grained testing. We'll look at all the different cellular markers and all that kind of stuff, and there's a genetic component to it as well. But everything we see so far makes us think that this is a Burkitt lymphoma. That means it is super fast growing, super aggressive, but also super treatable, super responsive to treatment. And the most likely scenario by far is that he is cured, it should work, cancer should never come back, and he should live a normal, long, healthy life. However, if it does come back, it's really bad. So that's also important to understand. Definitely very important to follow the chemo protocol because we want to get every last cell of this cancer. If we miss any, the longer we let it go on in there, the more the cancer itself can mutate and evolve and figure out how to evade these drugs. And if it does come back, the prognosis is not good. So It was a, in some ways a major relief, really good. We, overwhelming chances we're gonna have a positive outcome here, but it's still obviously very scary to contemplate that long-term future. That diagnosis moment though, it's really the critical before and after where you're, before this, you're in just total panic, total fear, especially if it's happening so fast, you're like, am I, could another 24 hours take my kid?
after you have at least a sense of what's going on and you have a plan. And then you start to move into more of a managed situation. Again, there's so many different kinds of cancers and they're all unique. So I don't want to be overgeneralizing from our experience with this particular cancer to anything else, but because they do have a very effective treatment protocol for this cancer, At least for us, we moved at that point into more of a managed situation where it's, okay, here's what we're going to be doing. Here's the schedule. It is a lot on the body. The first phase of chemotherapy that they give is less intense than the next two rounds. And the reason it is less intense is because when the tumor breaks down so fast in response to the drug, that process can itself overwhelm other systems of the body they call that tumor lysis syndrome and it has to be carefully managed or it itself can prove deadly but they they do have experience doing that and they they seem pretty confident about what they were doing as we got into this phase it became clear that there were probably three big things we could do as parents and where AI could help with all three of them to improve the quality of care that he would get and improve the overall odds of a good outcome. The first one is just double checking the doctor's work nonstop. They were taking blood every six hours. So we were getting lab results four times a day. Not every test was done every six hours, but basic ones were and some were done just daily. So a ton of information is flowing in. He's getting all these different drugs. His condition is changing in all sorts of different ways. He got bloated up when he started getting all the fluids. They gave him something to get fluid off the body. He peed an unbelievable amount. It was close to a gallon, which is crazy. He weighs 50 pounds normally. So you're talking about taking more than 10% of his weight off just in urine in just a few hours time when he got that drug. So it was a pretty dynamic situation with a lot going on, a lot of moving pieces, drugs he's never had before, obviously, and this constant flow of information. And we also didn't really know at that time, like, how good is this team? We want, as any parent would, we want the best possible treatment for our kid. Are we getting it? How would we know? The The role of GPT-5 Pro in particular there has been just outstanding. It's really been an amazing AI doctor, essentially, that has rode shotgun with us every step of the way. I have a long-running thread where I'm just focused on the bedside. What's going on now? What are the latest labs? What do we need to do? Is there anything they might be missing? Or is there anything that they're doing that might be wrong? Access to information is tough. We don't have the same view that the team itself has. So that's annoying, to say the least. But we do have the patient portal. We can get the labs out of there. We can write notes about the updates, what he's feeling, what's going on, what medicines they're giving him. It would definitely be better if we had all that documentation readily exportable. Nevertheless, with what we do have, I have a long-running thread where I have just, at every lab draw or at any moment where there's something going on that's of concern or they're planning to give a new drug that wasn't part of the plan or whatever. That happened once with the bloating. It happened another time with his blood pressure went up, and it was just over the threshold where they wanted to treat it. And I was like, Okay, should they or shouldn't they? It seems like he's already got a lot of drugs. So in all these different moments, the patient portal has a print function which spits out a PDF. So I just grabbed that, put that in. I've probably done that close to 20 times now over the last nine days, ten days since the treatment started. And we got on more of a regular cadence. And it has really allowed me to educate myself tremendously. I've learned an absolute ton from this process, understand what the doctors are doing and why. and see if what they're doing really makes sense. I came into this with pretty high confidence in the latest models to do a pretty good job. I would, again, only use the best. GDPVal from OpenAI doesn't really have be a bedside resident. It does have nurse practitioner, and the GPT-5 series was... at least competitive with, if not beating Claude a little bit in, even though Claude did score higher on the overall GDP val in medical stuff specifically, which Sam Altman didn't know when they launched GPT five, that they've worked really hard on the medical use case specifically. It did seem to be across the medical tasks that they had the highest performing model. And I had, as I said earlier, preferred its long winded explanation and kind of more neutral clinical tone. And it's been really good.
It has been absolutely on the level of the human doctors in terms of their analysis. And it has also given me a ton more confidence that they are in fact doing a good job, both when it comes to the main overall treatment protocol that they have, the AIs have confirmed. Yes, this is absolutely state-of-the-art, best care you can find anywhere, explaining to us that this is highly protocolized, like anywhere you go, If they are doing the right thing, they will be doing this. So one of the questions we had around should we move to a different center or should we try to move, or is there better treatment out there available for them somewhere? AIs have been pretty consistent in saying not for this case. It could be very different if you needed surgery to remove a tumor and you're looking for who is the best surgeon to do this sensitive surgery, or if you just have a really rare condition. This Burkitt lymphoma, there's only a little bit over a thousand cases of that in the United States per year. Fairly rare, but there is a protocol for it. Other cases where you're just an N of one total outlier, nobody's seen something quite like this before. Then again, I think you might want to go seek out who's the single clinician in the world, if you have the means to do it, who is the single clinician in the world that could give you the best guidance on this particular case. But in our case, because this was a known cancer with an established protocol that is known to work well. The AI was very reassuring that you are getting the best care. And then on a day-to-day basis with all the things that come up, the blood pressure is up, the heart rate is down, like why is this going on? Do we need to treat it? Do we not? It was all broadly like very much in line with the doctors and by and large really supported their analysis. So that gave us, there were a couple things that we advocated for, ChatGPT or GPT-5 Pro was more likely to suggest essentially supplementing or replenishing key minerals. He's been low on calcium. He's been low on magnesium. Probably that's just because he's getting so much fluid that literally dilutes the blood to some degree. But you don't want that stuff to get too low. The doctors, for the most part, were like, it's not that low. It's a little low. We expect it to be low. No need to do too much with it. GPT-5 Pro is a little bit more, I'd like to see that higher. So we pushed for that a little bit. And I think on the margin, there was probably one, maybe one time, or maybe they started doing it a little earlier than they otherwise would have. It also didn't quite agree with the doctors on how quickly to treat the blood pressure. When the blood pressure went above the threshold that they had set for treatment, it was just slightly over. And GPT-5 Pro was like, most clinicians, I think, would take a Wait-and-see approach here, measure it again, measure it more often, then treat, especially treat if it goes up more, but probably not treat yet. They wanted to treat and at a minimum gave me enough information and understanding to have a conversation about what is going on, how does this work? The AI explained that to me. And then with that information, I was able to have a conversation with the doctor, which I did find compelling because I had enough information to go into that conversation and feel like I could parse what he was saying back to me. I was able to be confident that, Okay, this seems reasonable. And I said, Okay, I trust your judgment. Let's go for it. Even though GPT-5 Pro would've waited. GPT-5 Pro is also a little bit more aggressive on just wanting more information. There were a few different tests that it wanted to run basically to rule things out or to confirm its understanding. And the doctors didn't always wanna do that. They were kinda like, Yeah, yes, that enzyme, that liver enzyme, it's up, but we expect it to be up. He had a biopsy that touched the liver. It's always up in these cases. We don't need to do more testing just for that. So I think that overall, these were very marginal differences in how to proceed that because they were so small and because the logic that was being expressed to me by chat was so consistent with what the doctors were saying. even if on these very fine margin points, they might have done something slightly different. Overall, it gave me a ton of confidence, a ton of peace of mind that the team here is doing a good job, not just in that they're using the right protocol for this particular disease, which is well established and everybody would do if they were doing, if they knew what they were doing, but also that at bedside on a runtime basis, that they, I think, were generally on top of it and had a good judgment that we could trust. I gained a lot of confidence in that from AI. So I would absolutely recommend doing that. If you are in the hospital yourself and you have the ability to do it, or if you're helping anybody else, kid or other adult, definitely be on top of that patient portal as results come in, as new medications are being introduced, take the time to And the first time it's hard because you're figuring out the portal and where all this information is and you've got to assemble this context.
I saw a tweet while I was at the hospital from Amanda Askell saying that she has multiple hundred-page prompts that she uses regularly. And I was like, What is that? I guess, first of all, that does reflect something that I have experienced in this process, which is that the models are really good at long context now. Forget about what you might have learned at some point in the past of overwhelming the context. That problem, I think, is pretty well solved at this point. If Amanda Askel is using 100-page prompts on the regular, you can be pretty confident, like it's not wasted information or it's not overwhelming or confusing the model. My experience has been consistent with that. I hadn't really done anything like that myself, but with all this medical stuff, now I really am starting to get there. Now my new standard prompt is here's the prehistory from the parents of the initial symptoms that kind of brought the kid in the first place, here's all these different reports. From the MRI, from the CT, from the PET scan, from the spinal fluid analysis, from the bone marrow analysis. Deep stuff with particular cellular markers. How many, what percentage of cells expressed all these different markers? The pathology report itself as they worked up the tissue. Other stuff I'm forgetting. I've got like 10 PDFs that can go into a single prompt that really present an overall pretty holistic look at the case. And yeah, this is getting into the hundred page range and I am using it pretty regularly now. So that's a general AI tip, but definitely with medical stuff, like you want to be making sure that the whole picture, as much as you can represent it, is represented in the prompt. You don't just want to show up with, oh, here's what's happening right now, haphazardly type it in. Another interesting trick is. Especially as we've started to move into some other ways that we can help the kid, and I'll unpack that in a second. With this really long running bedside analysis thread, one of the useful things to do is say, Okay, now can you convert all of this history into a handoff document for a new attending physician so that they can provide the most cutting edge care possible? And what we got out of that was just a couple thousand words. but it was extremely information dense and like super, super useful to then put into another prompt. So that's first bucket, which is get ongoing second opinions at bedside. This gives you information to understand what's going on. It gives you the ability to advocate when you need to. And if the team is doing a good job, the AI's probably gonna say that and it's gonna give you a lot of peace of mind. I imagine myself without AI, And what I imagine is constant Googling, constant anxiety, never feeling like I have enough information, just being totally overwhelmed, totally stressed out, never quite sure if they're doing the right thing or not. And in contrast with the AI to help me, I felt quite empowered. Obviously it's still a stressful, scary situation, but much more confidence in my ability to advocate effectively and in my more confidence in my belief that the team is in fact doing a good job for him, which was obviously great to to be able to believe with confidence. So the other big thing, the other two big things that, you know, we can do for this particular situation are minimize infection risk. This chemo that he's going to get, it is going to be pretty intense. The immune system is going to be really wiped out at times and infection is one of the big things that can get you. You don't have full ability to avoid that because some of the infections people develop just come from bacteria that were already in their mouth or on their skin or in their gut. So it's not like you can drive that risk to zero, but you can do some things because Amy and I both work from home and because we only have one other kid in school, we're in a position to do a pretty good COVID-style social distancing quarantine kind of protocol for our family for a while. And so that's one thing we're going to do is just try to minimize as much as we possibly can the risk of exposure. That means I won't be doing any traveling to AI events for a while or any onsite speaking engagements for at least a few months. The treatment roadmap is six months. But we also happen to have a flood in the basement. Same day that we came back from New Orleans concerned about his health, I walked down into my basement and there were Two inches of water in parts of the basement. Unfortunately, not a lot more because the water was coming in fast. Fortunately, our drain was flowing, so it was also flowing out pretty fast and it didn't really turn into a bad situation. But nevertheless, you got to deal with that, right? And one of the big concerns after basement flooding is the rise of mold. It's also a big concern for kids when it comes to infection. The doctors actually aren't that worried about viral infection. They are quite worried about bacterial infection. The viral is bad, but they don't think it's going to be life threatening. Bacterial can be and fungus can be as well.
So now you're in a really tricky spot if you're me, and this is a great example of where AI can shine so much. What do we do about this mold? How do we deal with this? And how would we know if we've dealt with it? And is this really a risk and how can we deal with the risk? Turns out, like I've run so many deep research reports with GPT-5 Pro over the course of this last couple of weeks. It's a lot. One of the ones that I ran was just like, what companies in my area can help me with mold prevention or remediation in the wake of a flood? Noting that I do have a reason that I need it to be extra well done. They helped with that. And then they also Again, GPT-5 Pro, really good at taking the results of a mold test that a mold remediation company came out and did, where they literally just take air samples to take one outside in the backyard, some down the basement where the flooding was, other parts of the house. Really useful. Imagine trying to get your oncologist and your mold guy to talk to each other. This is not going to be an easy meeting to arrange. very different cultural context that they usually operate in. How are they going to have a real meeting of the minds and get you the productive synthesis that you need to know? Can I bring my kid home to my house? Do I have to move out of my house for the time being? Like, is there something I can do to make this work? Because of this finding of a little bit of elevated mold in the basement, spoiler, we have a little bit of elevated mold in the basement, rest of the house seems fine. Because of that, would we treat prophylactically for mold differently than we would otherwise? In general, they don't treat kids with antifungal drugs because they don't think it's worth it and there can be side effects. But if you're going to be living in a mold environment, would they treat prophylactically? Bringing knowledge of basement remediation and mold prevention and Oncology, with all the specifics of my kids' case together, is just something that you would basically not be able to do otherwise. But which I was able to do and get to the point where, again, I'm confident that I know what the plan is gonna be. And the plan is basically going to be buy a bunch of HEPA filters and run them all over the house. And when they are doing work down the basement, don't let 'em go down there, certainly. Maybe we'll go to my parents' house for a couple days while the work is actively being done. GPT-5 Pro did recommend that, but it seems quite clear given the fact that the mold level in the basement was only slightly elevated relative to outside anyway, and just the overwhelming effectiveness of HEPA filters in straining mold out of the air, that we're gonna be fine. We're gonna buy a, I'm probably gonna buy eight to 10 new HEPA filters and have them all over the house and have them running constantly, which would certainly be overkill if I didn't have my son's health to worry about. But if we do that, the analysis I think is very solid that this will be fine. We're actually going to have a lot less mold spores in the air in the house than one would be exposed to literally just going outside here in the fall season where all the leaves are coming down. So that was huge. What a nightmare, right? I got this. flood at the same time as my kid has cancer, and then they interact. This is not just two problems I have to deal with. It would be fine to just put the basement on the back burner, but for the fact that it causes something that is a specific danger to him right now. And I don't think I would have been able to get very confident. I might have chosen ultimately to move out of the house out of just general fear, but with the quality of analysis that I'm able to get from a GPT-5 Pro. I know what to do. I know that these HEPA filters are gonna keep 'em safe, and we might still take a couple days out of the house, but otherwise it's a fine situation. So that is huge. So that was the second thing, reducing infection. The third thing goes back to this kind of weird bimodal outcome of, and unfortunately the one mode is much bigger than the other mode, But the situation with this Burkitt Leukemia is most of the time it responds to treatment really well. That fortunately has been the case for my son, 80% tumor reduction or so, lots of lesions just plain gone after the first week, bone marrow clear, amazing stuff. Basically a best case scenario, like so glad that's the update. But for some kids, it goes away and then it comes back and if it does come back, It comes back with a vengeance and the prognosis is not good. And to put it bluntly, like most of those poor kids die. Not all of them, but most do. So that's the third lever. What can we do to be as prepared as possible for that particular eventuality?
And here maybe is AI's biggest contribution and which happens to coincide with a new model popping up in the AI studio from Google, which is, and this has been posted about all over the internet, is thought to be a Gemini 3 checkpoint. So it's one of these situations where the model's under a code name and you're told, check it out, don't publish your results. Although I am seeing people do that. I'm not going to publish results out of respect for that request, but there are lots of purported Gemini 3 results out there that look pretty impressive. And so I flipped over, started using, like in parallel, GPT 5 Pro and what I believe to be a Gemini 3 checkpoint to address the question of, okay, what if it does come back? What can we do now to be ahead of that? What can we do to catch it as early as possible? What can we do to give them the best prognosis? At that time, where would we go? Because that would be the time to go to a leading medical center and try to get the absolute cutting edge, state-of-the-art treatment, clinical trials, whatever it may be. And again, this would take me And I do have months, hopefully, especially now that he's responded well. It seems like very likely what's gonna happen is we're gonna continue with this chemo regimen. The cancer's not gone yet. It is expected to be pretty much gone after the first two rounds. He did the pre-phase, which was, they also call the debulking phase, that's easing into chemotherapy. That alone took the cancer volume down 80%. The next phase he's starting now is the first of two pretty hard-hitting phases. You might see me bald in a future episode, by the way, because my son is gonna lose his hair, and I'm not sure how he's gonna react to that, and I might shave my head in solidarity with him. We'll see. Probably actually let him decide. So if you do see me with a shaved bald head in future episodes, that will probably mean that my son opted me into going through that part of the experience with him. Anyway, those two intensive rounds of chemo, after that, you're basically expected to look clear. What exactly clear means, we'll unpack that a little bit more later. Then there's two more rounds of like moderate intensity that they call like the mop up phase. Anything we missed. And there's two final rounds that are relatively mild, and those are the consolidation phase, which is again, basically, we really think there's nothing here at this point, but because we know that if it does come back, it comes back hard. And because we really do have to get every last cell, because if not, you get back into the exponential restarts again, then We really got to make sure it's gone. But the AIs have been incredibly helpful for this task of orienting to when it comes back, what does that mean? One thing that it's highlighted that has not come up in conversation with the doctors at all at the hospital, they generally don't like to get ahead of themselves. But I want to get ahead of this because I want to be ready. I basically want to have an emergency plan where I know exactly what we're going to do. if and when we ever get the terrible news that the cancer is back, I want to be able to act on that plan immediately, have all of the work done. But I think this is something that parents, again, or one can do for themselves in a way now that would have taken just an unbelievable amount of work before. Now you can actually do it like easily. What are the different classes of treatments that are out there for this recurring or relapsing cancer? There are different kinds. First of all, I should also say, What kind of cancer is it? There actually is still some ambiguity around exactly what kind of cancer it is. We know that it's this Burkitt leukemia, but there is another type of cancer that has very similar properties and is in the only recently been distinguished from the Burkitt mainline case, but has different genetic rearrangements that are causing the cancer. And that actually does lead to different prognosis. So we still haven't got that data back. They send this out, it goes to labs in faraway places, and they've got a whole production line and it takes a while to get this stuff back. But we're still waiting for that. The AIs have identified, first of all, and I think Gemini 3 honestly is excellent. It really impresses me with how sharp it is. It seems to be every bit as smart as GPT-5 Pro, but also much faster. its responses are much more focused, but they still feel like they're getting the core information to you and not missing anything. Whereas GPT-5 Pro feels like talking to somebody who's a world-class expert in the subject 'cause they're so thorough and it has so much information, but it's giving you this like massive information readout. And I found that to be true definitely with deep research, which sometimes I want the comprehensive view, but even with normal GPT-5 Pro responses, often repetitive a lot to deal with. And it feels like it's giving you this like big information dump and it's on you to work through it and make sense of it. And I wanted that. Because I did believe that was like the smartest model that I had access to, again, with a little bit of reluctance to use Claude for this because of what I found to be an overly emotional experience the first time.
But Gemini 3 is much faster, probably five times faster, maybe even more than that, maybe five to 10 times faster. Shorter responses that are more focused, that just feel like you were talking to the most brilliant person you've ever met, who is really getting your question and who is framing answer to your question for you in a way that is really sophisticated, has the right information, but is also much easier to digest than GPT-5 Pro has been. So I think Gemini 3 is going to be, assuming this is a Gemini 3 checkpoint, I think that's very likely to be the case. I think it's going to be a huge deal. And it might be, interestingly, the first time when Gemini has like a persona advantage relative to other models. I've loved Gemini 2.5 Pro for many things. By the way, transcription. So again, information, it's so bad. These tests show up in the portal when they come back from the lab. Sometimes other things show up in the portal, other times they don't. We're still waiting for certain key test results to show up in the actual portal. They're not good with moving this information to patients, in large part because I don't think in general the patients really have anything to do with it historically. And so most people probably aren't even asking for it. But I have been asking for it, and a lot of times they've brought me paper printouts. And I'm like, Oh God, can you give me a PDF of this or send me the original? And it's like, Nope. So there I'm at the hospital with paper printouts half the time on some of the most important things at that. And I don't have a scanner. So I'm literally just taking a snapshot of the document with my phone. And that's obviously not the best representation of it. Some of the documents too have weird artifacts on them. It might literally have been faxed from the lab that did the analysis. But clearly there's been document lossiness by the time it's handed to me. So it's not super easy to read at times, even just with the naked eye. Then you got the photo and then trying to get AI to do that. I would say if you have your mileage may vary, but I would say if you have a screenshot of a website and the text there is like super crisp as rendered on a screen, you're probably fine from an accuracy standpoint to put that in directly. However, if you're taking a picture of a text document, GPT-5 Pro is actually not that great still at transcribing something that challenging. Gemini 2.5 Pro is better. I would say it is clearly the best at transcribing documents like that, but still can make errors in subtle things where you've got tables and it's ad hoc, the layout is weird, and It's all just some of these documents are gnarly. So for those sorts of things, I would use Gemini 2.5 Pro to do the transcription. And then still you've got to systematically, like very carefully check it. When you're talking about something that is like what kinds of cell types are active in your son's cancer, you want to make sure that information is 100% correct. And when you're given this sort of seemingly previously faxed and then printed document that's not easy to read. I don't think you can really trust any of the transcription at this point quite well enough to nail that. Gemini 2.5 Pro would be my go-to, but you're still going to have to review. Anyway, that's a bit of a digression because I was on Gemini. I think Gemini 3 is going to be a huge deal. I think it's going to be a persona and a style advantage, and maybe also a raw intelligence advantage. It has seemed very smart, but I would say that GPT-5 Pro has generally had very similar content. I wouldn't say it's missing things. When I've asked for lists, we're like, how would you prioritize? How would you taxonomize? Generally speaking, the information that I'm getting back can be reconciled to be the same information. But the presentation and the analysis is just so pitch perfect coming from this model that I think is Gemini 3 that I think it's going to make a big splash. And I think people might soon find themselves going to Gemini by default a lot more than they currently do. As much as I have loved Gemini 2.5 Pro, I trusted GPT-5 Pro more. But Gemini 3, over the course of a few hours, literally last night, as I was really getting into this, how am I gonna, what should my plan be in case I ever get this terrible news and I want to be able to act immediately on getting the news, I would say, The model I believe to be a Gemini 3 checkpoint, it's just given me exactly what I want. It's giving me really detailed, really sophisticated analysis, packaged up in a way that is really easy to read, pretty opinionated, but has, in part because I do have GPT-5 Pro there to check it against, it really is earning my trust and has become like, Just in my first session, it has taken over as it's the model I'm like most excited to read the outputs from.
And GPT-5 Pro is more of a checker, do these things line up? Whereas before it was GPT-5 Pro that was like the number one source. I think the model I believe to be Gemini 3, I think is taking the top spot. So that is pretty notable from just a pure AI standpoint. So what are we gonna do? First of all, we gotta get this additional genetic information to figure out which subtype of cancer of Burkitt lymphoma does my son have at the genetic level? Because the prognosis actually does differ based on that. Then it recommends, I think this is really smart, and an oncologist friend had suggested something similar, get a second opinion. What does a second opinion mean? I think for us, we have pretty high confidence that the treatment that's happening right now is the best available treatment, but getting on file establishing a relationship with, I think we're probably going to do two leading oncology centers that are doing clinical trials with the different kinds of drugs that are used to treat this cancer when it comes back. That's a step that we can take now. And these, some of these centers do have formal remote second opinion services where for not a huge amount of money, like under a thousand dollars, you can submit all your documents and they'll have one of their oncology team members like work through your case. and say if they think you're getting the right treatment, and then also you're on file with them and you can establish this relationship of if and when this happens, we want to come and we want to be part of this or that clinical trial, and they can start to already steer you in the right direction as part of that second opinion process. But Gemini 3 is also, again, the model I believe to be Gemini 3 is also doing a phenomenal job of that and really fast. It's using search. I have found that I need to tell it to cite sources if I actually want it to cite sources, otherwise it blows past that. But when told to cite sources, it does a good job of it. It did a really great job of giving me the taxonomy of different drug types. There are these engineered cells called CAR-T cells, which are basically a part of the immune system. They take these out of the patient engineer them to attack the cancer cell based on markers that the cancer cell has and then put them back in the body and then they go attack the cancer cell. This is cutting edge stuff. It is. logistically challenging. So I asked a ton of questions around, can I do that now? Could we even go to that treatment now? This chemo is going to be rough, right? Could we do anything that's like sort of an immunotherapy? Seems like maybe more easy on the patient, but I think Gemini three made many good points around, look, this protocol works. Follow the protocol. You've got, there's almost nothing in all of oncology that has better outcome than this. So do the thing, don't distract. Again, really good analysis, mechanistic understanding of this drug could interact with this and this other way, or one of the problems with the immune therapies is the chemo knocks your immune system down so bad that the immune therapies can't work until the immune system has had a chance to come back. So there's a lot of nuances to it, and I think this model has really done a phenomenal job of explaining to me All the different ideas that I've had for different ways to customize my son's treatment regime are not in fact good ideas at this point. And in many cases, save that for later, save that for later, that could be a good idea later, that could be a good idea later, but don't do it now. Very compelling. I've come away quite confident in its analysis time after time as I've tried to probe, is there anything different that we could or should be doing? Another class of thing is just drugs that attach to a marker on the cancer cell and recruit other immune cells within the body to come and attack them. None of these things are super effective, but these are the trials that are pushing the frontier for what can be effective in the case of recurrence. The thing that the AI surfaced for me that I had not heard of anywhere else that the doctors never talked to us about that I think we absolutely do want to do is a thing called ctDNA. This is circulating tumor DNA. And basically what happens is you can do a Because we have a tissue sample, we can request that the tissue sample be sent to the lab and they do a genetic fingerprint on it. And then later you can do blood tests and they're very sensitive. I believe the number is five cells in a million it should be able to detect. So if this cancer is coming back in a meaningful way at all, it starts to show up on the ctDNA before it would show up with other diagnostics, and then you can get a jump on doing some treatment. Our oncologist was aware of that, but said, nah, it's not really standard, whatever. A friend of mine who's also an oncologist said, yeah, I don't really recommend that for my patients. It's not really proven. And if it does come back positive, then, you know, what are you going to do? Would you treat based on that if you can't even. But she happens to work in a more solid tumor realm.
Whereas these lymphomas, because they grow so fast, I'm in the model, I believe to be Gemini three, we're both on the same page that for this particular situation, the literature shows that what they recommend is basically inadequate. What they recommend is like monthly appointments with blood draws. But again, the blood draw is just going to show the LDH, which is at that point, you're probably starting to get sick and then quarterly scans. which you don't wanna have too much radiation from the scans. By the time they can see it on a scan, it's starting to be kinda large. Again, I think that varies a little bit depending on if it's a solid tumor cancer versus a, I think they can spot small things there, but for the lymphoma, and again, it's growing so fast. Anyway, the bottom line is the monitoring regime that they recommend doesn't seem to work that well. Most people who do have a relapse come back because they're sick. They don't start treatment because a diagnostic identified the issue before they were sick, they come back because they're sick, which makes sense because again, if it has a 24-hour doubling time, you're going to be sick pretty quick. So one thing we are probably going to do that we wouldn't have done otherwise, I didn't even know about otherwise, is this CT DNA where you send in the tissue now, they do the fingerprint, then later on you do the blood tests, you can do them periodically, you can do them however often you want to. And if you get a positive, especially after a bunch of negatives, like we should also be able to use this throughout the treatment process to confirm with even more confidence than the usual scans that, and maybe we could even, I haven't thought about this until right now, but maybe we could even save our kids some radiation exposure from the scans if the CT DNA tests are coming back negative. 'Cause that should be the most sensitive test that there is for, is this cancer cell present in the body or not. If it's not at that level, you're probably not going to see anything on the scan either. In fact, they say that sometimes, again, I'm just learning all of this from AI. I'm not Googling at all. Often with a mask like my son has in his abdomen, you can be cancer free. but there's some scar tissue that's still left there. And so it will show up on the scan as, Ooh, there might still be something there. It's hard to say, we don't know. And then I guess a lot of times they have to do an extra biopsy to get that tissue and then they come back and say, Oh no, it was just scar tissue, you're okay. Or maybe it was cancer, but the point is they don't know. The ctDNA should be trustworthy enough that could see this like scar tissue on the scan. But if the ctDNA shows no cancer in the blood, then you should be good to go. You should be confident enough that you don't need another biopsy or you don't need another, maybe you could even avoid the scan. But regardless of that, that I think is gonna be the main thing that I will do differently from probably what the doctors would advise is assuming, and it seems very likely, knock on wood at this point, that we get through this treatment and he gets to the other side and he's well, and then we're just, okay, God help us, don't come back, don't come back. Also, another notable thing about this birkett is that if it does come back, it typically comes back pretty fast, usually within the first six months, almost always within the first two years. Beyond that, you're pretty much thought to be in the clear. So we wouldn't even have to do this for that long of a time. I think this will become standard. This will become standard. But as of now, it is not standard. And I think we will do something that the doctors have not advised and have been advised against. And that is just get these tests so we know at the earliest opportunity, ideally before he becomes sick, if the cancer is in fact coming back. And then because we'll have these relationships already established with these major centers, and will know what kind of clinical trials they have going on and based on those early conversations, what they recommend. As Gemini 3 or the model I believe to be Gemini 3 put it, if ctDNA comes back positive on a Tuesday, you want to be infusing one of these next-generation drugs on a Thursday. And you have to have that early monitoring to be doing that, otherwise you're going to be really sick. And another thing, too, that it helped me understand is that all these drugs, but that includes these next-generation CAR-T cells and these bispecific immunotherapies, they all have side effects and the side effects seem to scale with the amount of disease that there is. The reason they give this gentle chemo first is to de bulk the tumor so you don't have too fast of a tumor breakdown and overwhelm your body systems. With these next generation drugs, they call, they cause something called cytokine storm syndrome and That's bad. That's really bad. But it happens because of the interaction between the drugs and the cancer cells. It's something that is very tough to manage clinically.
But the literature Gemini 3 helped me understand is like very clear that the greater the burden of disease or the more cancer is in your body, the more this problem can get out of control and that the process of being treated itself causes a lot of the medical harm. So Catching it really early with the latest diagnostic tools, treating it as fast as possible should mean best chance of successful treatment. Often the doctor will say there's no data that proves that, but Gemini 3 is like very confident and it makes a ton of sense to me that you would want to be treating as early as you can detect any meaningful amount of cancer coming back and That's going to give you the best chance in multiple ways. One, the side effects of this cytokine storm issue is not going to be nearly as severe. And also like these cells evolve, right? Everything evolves. Cancer cells evolve. They evolve to evade drugs. That's what makes the bounce back cancer so bad, right? It's basically some cell in there. You might have got all the cells, but one of those cells evolved a mechanism to evade your treatment and now it's coming back. Now you have these additional lines that can potentially get it, but it might evolve a way to avoid that treatment as well. The fewer cells there are, the fewer at bats it as a class of cells has to evolve that next generation escape. So it seems like early detection is good. But in something with a 24 hour doubling period, which has this kind of tendency in these like rare, extremely bad cases to evolve additional ways to evade the latest and greatest treatments, you want to do that with the smallest detectable amount of cancer that you possibly can. So that's basically our plan. We haven't done the second opinions yet, and we haven't chosen what class of drug do we think is more or less good. And part of that is going to depend on the genetic information that we still need to get back. But I'm confident already, and we're only eight days from when he got a pretty confident Final diagnosis, which is notably nine days from when he started chemo because again, it was moving so fast. They started the chemo even before the full diagnosis. Already, my wife has been living at the hospital 24/7. Huge thanks to my parents as well as my sister and her husband and my wife's sister and her husband for coming over and staying with our other two kids at various points in time. I've been at the hospital like 18 hours a day. There's been a ton going on there. He's all the fluids, he's peeing every 45 minutes, just helping him get up and use the potty every 45 minutes to an hour has been a lot unto itself. That's like basically around the clock job. To say that I haven't had a lot of time to do other things is an understatement. And yet already at this point, I have been able to make this much sense of what's going on. I wouldn't say I'm done, like I'll certainly be doing more to be at day eight from diagnosis. starting with a knowledge base of zero and to understand the dynamics, the different kinds of this cancer that there can be, what those mean, what the different types of drugs are that are used to treat it, how they work, why they can't be used necessarily right now, where with specific centers there are trials going on, which of those places have these second opinion remote offerings that allow you to get into their system ahead of time. To have all of that mapped out at this point is just incredible to say that AIs are starting to accelerate science. I think that there's a lot of evidence of that, but certainly they are accelerating medicine and any and just think about any new area of science you want to get up to speed in, right? I knew nothing two weeks ago about this, and now I'm conversant with true experts and even at the bedside with basically the AI doing it on the avatar for the AI that can hold my own in conversation and have ask intelligent questions that the doctors don't feel insulted by and really make sure we're having a good meeting of the minds for my son's care. So that has been invaluable, really invaluable. Okay, couple final reflections. One thing I would say that this makes very clear to me is that the idea that AI is a bubble that the value isn't there, that it'll never amount to anything, whatever different ideas people have. Obviously, some VC investments are going to go to zero. Who knows? Like maybe even OpenAI will default on some of its data center build out payments at some point. Obviously, they're redlining that as much as they can. So there's a lot of different meanings of bubble. But one thing I will say for sure is that AI has been indispensable in this process in all the ways that I've outlined, and the consumer surplus is absolutely insane. I'm paying $200 a month for GPT-5 Pro. I don't know what Gemini 3 is going to cost to access, but it won't be more than that.
Another deep research report that I had ChatGPT run is estimating the total cost, which fortunately I have health insurance. What is the insurance company going to pay out for all this care that my son is getting? It estimated 500,000 to a million and a quarter dollars over the course of his six months. So the cost of the AI, even at the $200 a month, relative to that, is somewhere between under a 10th of a percent and 0.2%, and that's paying $200 a month. That's the most expensive AI subscription that there is, at least mass marketed today. And it's under a 10th of a percent up to maybe 0.2% of the total medical cost. It is GDP destroying, I think, in various ways. The higher costs come with more complications. By using the AI all the time, I am helping to minimize mistakes and complications. By getting on top of the mold problem, I'm minimizing risk of infection. That's another complication that could drive costs up. We might have moved if we weren't able to get confidence in our current care, which fortunately I have got good confidence in now. We might've moved to another city and gone to an even more expensive center and rented a house and done whatever other expenses we would've had associated with that. And that very well might've been worth it if we didn't have the confidence to know that what we are getting is basically as good here as it would be at any of those places, at least for now while we're in this kind of main protocol. It's a paradoxical, the economic situation here is weird. Consumer surplus is insane, it's GDP destroying, what would I have paid if they were Price discriminating. That's how you'll know if they ever really get evil. That's when you'll see it is when if they really were like, Nathan, we know your son has cancer. What are you really willing to pay for ChatGPT Pro during this time? I genuinely think I'd pay $10,000 a month and feel pretty good about it. And even then, it would only be five to 10% of the overall cost of his treatment. The AI doctors are basically here. They can't do everything. Obviously, they can't do procedures. They can't do physical exams. They obviously just can't order and prescribe stuff. But in terms of analysis, quality of reasoning, consistency with what we've seen, explanations, you really do have AI doctors now. And the consumer surplus on them is absolutely insane. And I think it's all anyone needs to know about AI is if your kid has cancer, Do you use the AI or not? And the answer is you use it a lot more and you get a lot more value out of it in the most stressful, scary, overwhelming context that you've ever been in your life. You turn to AI a lot more than you do otherwise. And I think that just makes clear that like the value here is truly undeniable. There's no revealed preference stronger than what you do when you're trying to take care of your kid. And I can tell you with a hundred percent confidence and sincerity that the AI came through huge for me, for us, for him in this process. Another kind of even higher level meta reflection there is there are no D cells in the pediatric oncology unit. I've always been of mixed mind on AI, and I still am. I've always said, I want my AI doctor, nobody better get in the way of my AI doctor. And I feel that as strongly as I ever have. What I think I feel even more strongly now is the idea that delays in AI progress come at real cost to real people. One of the more painful outcomes of this, obviously, if the worst were to happen and we were to lose our son, which again, I think is very unlikely at this point. But still scary, and it's definitely still in the back of our minds. And for my wife, it's in the front of her mind, I think, all the time. I'm able to keep it maybe a little bit more in the back of my mind. But if something like that were to happen, how much would it suck to be like, this all happened one, two, three years before an AI might've been able to figure out how to cure this disease? And that's gonna be even more the case with real N-of-1 conditions. We have the AI doctor. We don't yet have the, even though we're seeing glimpses of it, we don't yet have the full on AI oncology researcher who I could say, here's everything that there is to know about my kid. Go find a cure for a case that is a sort of case report level rare. We don't have that yet, but we're probably not going to be waiting too much longer for it. And I always recognize this on an intellectual level, but I have definitely come to feel in a much deeper way that delaying that, it means people will die that wouldn't otherwise have to die. And that is something that we should take very seriously and we should not delay unless we really have to. At the same time, of course, I do stand by my decision to sign the recent call for a ban on superintelligence.
I think, at least for my son, given his favorable prognosis, I do still think like an uncontrolled recursive self-improvement loop intelligence explosion is probably more likely to kill him and a lot more people besides than his cancer is at this point. So I'm not saying we should let the companies run wild or have no governance or enter into recursive self-improvement loops without a much better understanding of what's going on internally in the systems than we have today. But I do think it's it's important for me to be intellectually honest about the fact that delays in the timeline to the AI oncologist who can take your end of one case and have a real chance of going out and figuring out what to do about it for you. Delaying that, the cost of that just has really been brought home to me and made so real. And I don't want to see that delayed any more than we absolutely have to for existential security reasons. China got to have one kind of one comment on China can we race China to cure cancer seriously I've said this before but this is a race that is worthy of two great civilizations and everybody benefits the whole rest of the world would benefit I seriously want to see a gold medal tracker for cancer cures. We know that the Chinese government loves to compete for gold medals. The US obviously doesn't want to be anywhere but number one on the leaderboard. I want the Cancer Cure Olympics, and this is the race that we should be having. And obviously it goes beyond cancer as well, but we should have that race. There was already a war on cancer, and it didn't necessarily amount to as much as we might have hoped. But this time, I think if we do declare war on cancer, we might win that war. And then there's more beyond that that we obviously will want to do. I think let's not demonize Xi for speaking about extending healthy lifespan. Obviously, there's a lot to not like about Xi. There's even more not to like about Putin, and there's even more still not to like about Kim Jong-un. It's certainly counterintuitive to see those three in conversation with each other and feel like there's good ideas coming out of it. But when they were understood to be talking about, yeah, with all this technology and AI and biotech, we could imagine extending the human healthy lifespan to 150 years. Yeah, it's not crazy. They are not crazy if we're talking about that. They should be talking about that. I want the President of the United States to be talking about that. Why are we so behind in terms of our vision, our expectations, our standards for progress that we have Xi, Putin, and Kim Jong Un leading the way? It's an absolute failure of imagination, failure of leadership that we don't have our own version of that. And not only is that, in my view, a shameful omission from the American and broadly the Western political leadership just unto itself, but then we risk, because these guys are obviously so bad in so many other ways, we risk that an idea like extending healthy human lifespan gets understood as a bad thing, like only the kind of thing that despots or authoritarians would care about. And that could not be further from the truth. We should look back on the progress that we've made in extending healthy human lifespan and view that as an absolute unalloyed good, that this is the fruits of all of the prior generations of humans working together to get us to this point. It's only been in the last like one to two generations that my son's condition could be cured. So that's an incredible thing, right? But the idea that we're going to potentially get negative about that idea, the very idea of extending healthy human lifespan because we're only hearing about it from some of the world's worst people, the idea, the right thing to do there is not to throw out the idea that we want better, that we want better for ourselves, for our kids, for our parents. The right thing is to start articulating our own positive vision and actually start trying to deliver on it with urgency so that when they talk about it, they sound like also rants as opposed to being ahead of us and our sort of mimetic immune system, feeling the need to downgrade and dismiss the idea because of its source. That also has come home to me in a really powerful way. I guess final thought is I think the medical system has served my family very well here. Again, just the fact that there is a protocolized treatment that works so well, the fact that they were able to expedite so much of the scheduling to get enough clarity, the fact that they were willing to flex the rules and do the chemo, get it started before the final diagnostic. Couple mistakes were made along the way, or you at least could have imagined catching it earlier if somebody was a little bit more astute. But overall, I do think we've been served very well.
But at the same time, I do feel like the structures on which the medical establishment runs will soon be handcuffs. There is just so much information out there. The ability for AI to power through that information with one particular patient in mind absolutely is already more than what the human doctors can do for any single patient. And I think this means that standardized medicine, while it has been good because, you know, how many people really could deviate from the best proven protocol that was double-blinded and all that good stuff and actually get more expected value from it? Very few people can do that historically. I flatter myself, maybe I could have just with Google and six months worth of work. But now we're entering an era where anybody with Gemini 3 access can do that and can really start to come up with their own plans that are going to be well grounded, that are going to be conscious of side effects, that are going to be conscious of drug interactions, that because the patient and cares so much more than anyone else, obviously, and because the AIs have so much more processing power than you can otherwise bring to bear on anything like this, you're going to see patients showing up with ideas that very plausibly do beat the standard of care. I have not been able to find anything like that in my case, to be clear. That's a direct, that's in direct relationship to the fact that the protocol is so well established and the prognosis is so good. If the prognosis were not nearly so good, I think even now I might be able to use a Gemini 3 to come up with a better plan than the standard of care. And you're just going to have this happening over the next year or two, but honestly, just year, you're going to have this happening by the millions across the country, and the medical system is not prepared for it. I remember the classic line, Rage against the dying of the light. I would say rage, rage against the lack of a right to try. This has always been true, but it's becoming absolutely critical now that we allow people to take more ownership of their own medical care and allow them to drive some experimentation. Yes, some people will use that badly, but if they just use the best AIs that are available retail today to come up with a plan, often enough, they're gonna have a good idea. And I think often enough, the doctors will come to recognize that too. At this point in time, I wouldn't say you wanna be talking too much to your doctor about the fact that ChatGPT told you this 'cause they've got a lot of baggage. But a year or two from now, they're gonna understand because patients are gonna make them understand that the AIs do have the ability to reason about this stuff at a high level and to add value to many standard of care protocols. I guess actually I do have one, right? The ctDNA one is one, because that's not standard. And I think it's an obviously good idea. But even more so, and not just diagnostic, not just monitoring, but like active treatment plans right now, that's going to be brought home to the doctors, but then the rules are going to really stand in the way. The rules about that's only available in this clinical trial. That's not approved. There's all these liability concerns around I as a doctor, if I do the standard of care, I'm not. at risk of being sued because I did the right thing according to the profession. That's the standard of care. That's what I can rest easy at night, and that's what I've been legally advised protects me. But that doesn't mean it's in the best interest of the patient, and I think that's going to become very clear. So I think we're going to need reform at the level of just legally giving people more access to try things. Those rules had a point. I'm not denying that, but with the AI ability to advise everyone, The quality of decisions that patients are going to be able to make for themselves is going to be dramatically improved. We're going to need reform on liability. We're going to need some sort of different standard that just because you did something that isn't the standard of care doesn't mean you were negligent. In fact, you probably, in many cases, were doing better than the standard of care. If you took proper steps and had AI review the case, if you approached it the right way, standard of care is not the end of history. And then data, we're also going to need reform of data. We opted our son into the research program where they're going to track him and whatever. But the battle to get data just from the hospital staff to us in real time has been a battle. I have no idea exactly what they're going to be sharing or in what format, but I can pretty much guarantee that it is dramatically suboptimal. And especially, again, as especially if you imagine a sort of more right to try environment where people are doing a lot more different things, that will create much more diversity of data that's out there, making that stuff available for then AIs to reason over.
We have the opportunity to create better outcomes in the short term, richer data environment that will inform even more and better analysis, which will inform even more better outcomes and The doctors aren't quite ready for it, but I think they will be convinced by their patients. I think over the course of this last week, I think I have won the confidence of our oncologists. And again, I wouldn't be able to do this by myself, but because of the value that I'm able to get from AI, they now trust me. I think that the questions I'm asking are not just a Google and I saw this term and I think this is the thing, but I am actually doing my homework and I do have real expertise, not in my head, but at least supporting my efforts. I think the doctors will get there. The rules, though, on these various dimensions are going to have to catch up. So that's it for now. Really, really crazy. Last three weeks. Scary. Emotional at times, for sure. Really grateful for all of humanity's collective effort to get to the point where there is an effective treatment. Can you imagine the pain of having this happen and there not being an effective treatment, knowing that just two, three, five years from now, an AI might be able to sort it all out just for your individual case. We absolutely should not delay that. Obviously, existential risks still matter tremendously. But man, not just the AI doctors are here, but the AI medical analyst that can really deliver you strong personalized medicine is coming online too. And it's an amazing thing. I'll leave it there for now. Please reach out to me if you have ideas, if you think I've missed things. If you're doing research at the intersection of AI and cancer, that's definitely become a sudden interest for me. I suspect that there will be a couple more AI for cancer episodes coming up on this feed over the next few months. But yeah, for now, wish us luck. Thankfully, the prognosis is really good. It's going to be a rough road. Chemo is not easy. That's another thing I think could get better for sure. Once they, once we really understand this better, pretty sure that a less aggressive treatment would work for a lot of people. But for now, we don't quite have that information and feel like it is probably worth doing the harsh, the full harsh treatment because that is the thing that's proven to work best. But yeah, fortunately for now, prognosis is good. So wish us luck. Share any information you think would be valuable that I haven't covered here. And I'm sure we'll have an update before too long. Thank you for being part of the cognitive revolution.
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