A band of “Cancer Cowboys” once known as the ALGB—Acute Leukemia Group B—are, in large part, responsible for flipping the mortality rate of childhood leukemia from 90% to 10%, where it stands today.
“The Cancer Cowboys arguably better utilized many of the newer meds becoming available—6-MP, methotrexate, daunomycin, Cytoxan,” Tim Wendel, member of the Cancer History Project editorial board, lecturer at Johns Hopkins University, and author of “Cancer Crossings: A Brother, His Doctors, and the Quest for a Cure to Childhood Leukemia,” said to The Cancer Letter. “Most of the old guard…were giving them to the patients one at a time. What the ALGB group did was, ‘Screw this. We don’t have time. We’re going to do it in combination two, three, even four at a time.’”
While researching his book from 2013 to 2017, Wendel spoke with the doctors of ALGB, among them longtime St. Jude Children’s Research Hospital CEO Donald Pinkel, who died March 9, Jerry Yates, Lucius Sinks, James and Jimmie Holland, Emil “Tom” Frei, and Emil J Freireich. Wendel’s brother Eric was treated at Roswell Park Comprehensive Cancer Center beginning when he was diagnosed in 1966, until he died in 1973.
Obituaries written by Wendel and Donald Pinkel’s daughter Mary Pinkel appear here and here. Obituaries by Roswell Park Comprehensive Cancer Center and St. Jude Children’s Research Hospital appear on the Cancer History Project.
The ALGB’s approach was not a part of the status quo in the medical community.
“It had to be a conversation with Pinkel, or maybe it was Jerry Yates. They kept saying, ‘Yeah, everybody was against us,’” Wendel said. “It’s got to be doubly difficult to take on a shapeshifter of a disease like cancer and then have no support for extended periods of time from many of your peers or those in your professional community.”
The ALGB would ask questions like “What happens when you put methotrexate with daunomycin?” and answer them with: “I don’t know, but this kid’s dying. Let’s find out.”
“That was where they got really criticized. But, frankly, that leap of faith is also what helped turn the table against childhood cancer,” he said. “These doctors were the ones who dared to take it on. In doing so, they came up with many of the things that we just so much take for granted today when it comes to cancer research and cancer care.”
In speaking with these doctors, Wendel was wowed by Pinkel’s bedside manner—even over the phone.
“His bedside manner and just his empathy was just off the charts. I’ll tell you at first, it was a bit alarming. It was like, ‘Hang on a minute, I’m doing the interview here,’” Wendel said. At times, it led to more understanding on my part. Pinkel was the one who asked me, ‘“How old were you when your brother died?’”
In one conversation with Pinkel, Wendel mentioned that his brother technically died of the chickenpox rather than ALL.
“When Pinkel heard this, he asked for my mailing address. A few days later, a letter from him arrived in the mail. In the envelope was a copy of a clinical trial about the impact chickenpox can have upon kids with cancer. It was written in the early 1960s and Pinkel was the lead author,” Wendel said in a separate interview.
On the other hand, James Holland was a bit “more gruff,” Wendel said. So when Wendel heard a rumor that Holland could recite a favorite poem by heart, Wendel took a risk and asked about it.
“Off the top of his head, he recited this poem I had never heard. He had this beautiful voice, such a baritone voice. This kind of voice that just commands attention, turns heads,” Wendel said. “Now he’s turning the tables on me. He says, ‘And of course you heard that poem.’”
Holland had recited four lines of Elegy Written in a Country Churchyard by Thomas Gray, published in 1751:
Full many a gem of purest ray serene
The dark unfathom’d caves of ocean bear:
Full many a flower is born to blush unseen,
And waste its sweetness on the desert air.
Holland then said: “I love the cadence of that, how it rolls off the tongue. I learned it when I was young and I’ve never forgotten it. To me, it’s about believing good work can be done, how good work can be accomplished if you’re willing to push on.”
“That’s him,” Wendel said. “This is what Holland recited off the top of his head, just blew me away.”
Wendel met with Lucius Sinks several times at a restaurant called the Boar’s Head in Charlottesville. Sinks succeeded Pinkel as the director of pediatrics at Roswell Park when Pinkel left in 1962, and Wendel’s brother Eric was one of his patients.
“Our first few lunches were disasters,” Wendel said. “You could just see him looking at me, thinking, ‘This guy doesn’t know anything. Why is he trying to do this project?’”
One day, Sinks showed up with a white canvas bag full of books about cancer, including 2,000 pages written by Holland and Frei.
“I’ll never forget him saying, ‘You’re starting to ask the right questions. These will help,’” Wendel said. “He had gone through and actually put stickies on—especially that 2,000-page thing, I never would’ve gotten through that.”
“These were key concepts that would help me understand the disease, also what these guys were trying to do,” Wendel said. “I still remember getting in the car to drive back up to Northern Virginia and going, ‘OK. I think we’ve turned the corner here a little bit.’”
Wendel spoke with Alexandria Carolan, a reporter with The Cancer Letter and editorial associate with the Cancer History Project. This transcript has been edited for brevity and clarity. A podcast featuring Wendel appears here.
Tim Wendel: Why now, why write about this? Part of it was—it’s this amazing story and these amazing medical pioneers, but they’re about ready, at least some of them, and some did, [to] leave us. Again, I’ve never quite had a project like that where it’s just been all of a sudden pedal to a metal. Then the other thing was, oh man, the learning curve just for me, because I didn’t know this stuff. Another quick story, I’ll bore you with a couple more stories. They’re all in the book at least in some part.
TW: But it’s so funny because I live in Charlottesville now. That’s where Lucius Sinks was living. And I thought at first my brother’s main doctor was Pinkel, but Pinkel had left before my brother Eric started the clinical trials, started the treatment at Roswell Park, because Pinkel had left to go start St. Jude, even though a lot of what Pinkel had put in place became the standard at Roswell Park. So I’m going, “OK, hang on. Who’s the director of pediatrics if Pinkel left in ‘62, ‘63 and my brother started there ‘66 is when he was diagnosed?” I find Lucius is the one who succeeded Pinkel at Roswell Park as director of pediatrics. He’s in Charlottesville.
I started coming down to Charlottesville and we always met at the same restaurant, the Boar’s Head, outside of town. We always met at the same table. I’d always reserve it. I’d always get there early, about a two-hour drive down from the DC area. Our first few lunches were disasters. You could just see him looking at me, thinking, “This guy doesn’t know anything. Why is he trying to do this project?” And I believe it was our third lunch. He came in and again, I’d always get there first. That’s something I always tried to do. Throughout all this, he was walking with a cane.
On this particular day, though, I see he’s walking with the cane, but then I see him carrying this big, white canvas bag. And he comes over to the table and there’s a lot of stuff in this bag. He just puts the bag down in the middle of the table and it goes “boom.” That’s how heavy it is. I’m going, “Lucius, what’s going on?” And he starts pulling out these books. One of them was 2,000 pages written by Holland and Frei about cancer.
TW: Another one is a book, actually, he had written. Several I kept, several, he said, “Get back to me when you can.” But I’ll never forget him saying, “You’re starting to ask the right questions. These will help.” And he had gone through and actually put stickies on—especially that 2,000-page thing, I never would’ve gotten through that. These were key concepts that would help me understand the disease, also what these guys were trying to do.
I still remember getting in the car to drive back up to Northern Virginia and going, “OK. I think we’ve turned the corner here a little bit. I’m much more excited about things.” Those were fun times.
TW: You can throw in Frei and Freireich, too, you know, even though they weren’t Roswell Park.
TW: They were all markedly different in personality. And I think sometimes an approach, I don’t know that for sure in philosophy. I think it was Holland at one point who told me, because they would get together every three months or so. I wish I’d been a fly on the wall during those meetings, because it just sounds like there were intense debates and arguments.
As Holland said, “We would fight like cats and dogs.” And I know they did, just over how to proceed medically. They would often do it at these quarterly meetings, or on the phone, or whatever. The fact that they kept in touch so well, because they didn’t have Zoom, and they didn’t have email, and all this stuff, I just find amazing. They’re faxing stuff to each other.
But one of the things that they decided on early on, and I don’t know if it was a formal decision or just one that they all decided the best way to proceed was, “OK, we can fight all day. But at the end of the session, at the end of the day, we’re together. This group’s still paramount.”
Keeping the group together and being loyal to the group was amazingly important. I think one reason it was important was they were getting so much opposition and they were ostracized by so much of the rest of the medical community. I think they realized they better stick up for each other because that’s all they had.
They were getting, especially early on—we’re talking mid ‘60s into probably the early ‘70s—just being criticized all of the time. Pinkel’s the one who told me, and actually Jerry Yates too, some of the names that they were called just within the medical community. They ran the gamut. It was “poison pushers, misfits, fools.” And then the one I latched onto was “Cancer Cowboys.” Cowboys, as you well know, within the medical world, is not a nice thing to call somebody. It’s somebody who’s not sticking to the rules, and not sticking to the protocol, and not doing the due diligence that maybe needs to be done.
Going back, just thinking of these individuals, I was trying to figure out the best way to get the information and the understanding that I needed. For example, I only met with James Holland once, but we had some really good phone conversations. In fact, I still hear from a lot of the Holland kids.
They all said, “You got the essence of my father.” Well, actually the essence of both their parents, with Jimmie Holland, who was an accomplished doctor, too. But with Dr. James Holland, the best way seemed to be short conversations on the phone.
I would call him late in the day. He was at Mount Sinai by that point, I believe. He immediately said, “Yes, this is a good time, 4:15 to 4:45. That’s a good time. Reach me anytime. And once the questions get predictable, I’ll need to go.”
That’s when I would call him. He would be finishing up his day usually. That was a great time to get him. Whereas his wife, Jimmie, the first thing she would say would be, “How much time do you need?” …How they stayed married, I have no idea.
TW: They narrowed it down for me. I knew I needed Sinks. I knew I needed my brother’s main doctor, or again, the director of pediatrics. I must admit I was a little thrown at first, because I thought, again, it was Pinkel. Pinkel’s such an amazing story. He’s so much of that world — Western New York and Buffalo. He was from Buffalo. He’s a proud Buffalonian. I think one reason, St. Jude, and this is my opinion, St. Jude is such an accomplished research hospital facility today is he brought a Northern temperament and a civil rights, for lack of a better word, civil rights viewpoint or philosophy to that part of the world before that was accepted.
Soon after arriving in Memphis, Pinkel thought to himself, “What the heck am I doing here?” Pinkel comes across as very unassuming in some ways. He is very friendly. He’s like a Jimmie Holland. His bedside manner is awesome. But he’s got a real sense of right and wrong. Early on, when he was talking with Danny Thomas’s bunch there at Memphis, one of the things Pinkel told them was, “If I take this job, we’re going to do two things. Number one, we’re going to make treatment free to the families. And number two, we’re going to treat Black and white kids.”
Why now, why write about this? Part of it was—it’s this amazing story and these amazing medical pioneers, but they’re about ready, at least some of them, and some did, [to] leave us.
There was a bit of a pause at the table. You’re going to have to pardon my language a little bit, but one of them replied. Now, this is one of the Memphis crowd: “Well, I guess that’s OK as long as it’s the house help and not the field N—”… Pinkel was really taken aback by that. I think others of us, maybe like me, would just go, “Screw this. I’m out of here. These guys, at least some of them, are knuckleheads.” I’m not so sure I want to go to work, or work with these people, or at least some of them.”
It had a different reaction with Pinkel. Pinkel was just saying, “I’m going to show these SOBs.” He jammed civil rights, or at least pushing back against Jim Crow, down their throats. What he accomplished was incredible.
In all the conversations I had with Dr. Pinkel, he’s just a friendly guy. To see, time and time again, the fight in him, is just amazing. He applies it to Memphis, at least what Memphis was back then, and what he had to deal with in getting St. Jude built. In a way he also applies it to cancer—and he’s got a lot of fight. They all do. But it throws you back a little bit with him because you don’t quite expect him to go to the mat on such things almost immediately, and he does.
Just before the pandemic took hold, I did an in-person event for “Cancer Crossings” in San Francisco. I was doing a presentation, and I knew one of the Holland kids was going to be there. And then I was also told a couple of the Pinkel kids lived out there.
During my lecture, this guy walks in. As soon as he entered the room, I went “Damn. He looks like a Pinkel.” He sits in the front row next to this woman who I kind of missed before. And I’m going, “Man, she looks like a Pinkel, too. This is interesting.”
I do my thing, and then later I’m just standing up there, and so the Holland kid comes up, you got two of the Pinkel kids. Remarkably, they had never met each other, and yet they had shared this background in cancer research, but also in Buffalo.
They hit it off. They were like a couple of blind men around the elephant. They’d all had this shared experience and here was one of the few people in the world they could talk to about it. That was fun.
TW: Just asking questions. It’s not like my dad was a doctor. He was an engineer. But in a different way I shared part of this era, too.
Like I said, I haven’t talked to Mary Pinkel in a while. And I’m realizing in talking with you, I owe Mary a phone call or an email. After the book came out, the Hollands had a holiday party at their old place, a house outside of New York. They invited me and I drove up and had a great time. And I don’t know if that answers the question, but you can see I’m curious about them, this chapter of medical advancement.
Of course, a major part of “Cancer Crossings” is how my own family coped, how my siblings did things, and in how we got through it together. And so, in a way, I’m curious about how other siblings and families get through, because cancer is going to leave a scar. Cancer is going to impact you in some way that you’re never going to forget. I’m always curious about that. I’m always comparing notes on that and just saying, “Oh, that’s how they handled it. How cool is that?”
TW: I think they appreciated that. I know it drove them, at least some of the doctors, crazy early on, too.
TW: You come wandering in and not knowing things. But on the other hand, I think they, and especially ones like Pinkel, Lucius, for sure, they wanted to hear about my family, too, and how we coped. At one point, I asked Lucius if he remembered my brother. I realized this was really putting him on the spot, because he was treating hundreds of kids. He didn’t, at least not right away. But he said, “Do you have a picture of him?”
The one I sent him was of the whole family, in the last year of Eric’s life. Sinks sent back, he immediately responded, and said, “I’m sorry, I don’t remember your brother, but I remember your mother.” That’s because my mom was the one that always took my brother to the hospital for treatment at Roswell Park.
That’s really neat. You mentioned a bit also over email that they really cared about you, too, and were invested and curious about you. Can you talk a bit about that? And I know you also said that it sometimes felt like Pinkel was interviewing you. I’m curious what that experience was like.
That’s really neat.
You mentioned a bit also over email that they really cared about you, too, and were invested and curious about you. Can you talk a bit about that? And I know you also said that it sometimes felt like Pinkel was interviewing you. I’m curious what that experience was like.
TW: Like I said, his bedside manner and just his empathy was just off the charts. I’ll tell you at first, it was a bit alarming. It was like, “Hang on a minute, I’m doing the interview here.”
This reminds me of Michael Lewis’ approach. He had written “The Blind Side,” “The Big Short,” the “Moneyball,” etc. He insists he never interviews people. He says he has conversations. Now what’s the difference? Interviews are very much one way.
And this is something I get a little antsy about sometimes when I do interviews is I almost feel like I’m a word vampire or something. “Oh, give me more words, the insights.”
But with a conversation, it’s back and forth. With Lewis, if he disagrees, he’ll tell you, saying, “No, I don’t think that’s right. Why’d you do that?” It’s not like I’m going to tell doctors what they did was wrong, but I did show more gumption at times to say, “Well, hang on. A year before you did this and now you’re going in this direction.”
At times, it led to more understanding on my part. Pinkel was the one who asked me, “How old were you when your brother died?”
And I replied, “I was 17. And I was a junior in high school…” And he followed up with, “Well, that’s the kind of thing that impacts an entire life, doesn’t it?” And I said, “You are absolutely right.” Because at that time in my life, I made a number of very drastic changes in what I was going to try to do. I was supposed to be an engineer. My grandfather was a civil engineer. My father was a civil engineer. And I realize now, after my brother passed, I wasn’t going to be any engineer. If anything, losing Eric taught me that time’s short and you better do what the hell you want to do, because nothing’s guaranteed. That started with a Pinkel conversation.
Whereas Holland, for example, at least with me, was more gruff. Maybe it’s because we were doing pretty much everything on the phone. But I felt, and I think that’s in the transcript at some point, If I’m going to have a conversation rather than an interview, then at times I’m going to, roll the dice, shoot the moon.
With Holland, it was me asking him to recite some poetry. I had learned that growing up he learned a lot of poetry, and he loved to recite poetry. So, that led now in the conversation, with me saying, “I’ve heard you really enjoy poetry. What’s your favorite poem?” And it really threw him because we were talking medical stuff and he was going, “Who told you that?”
And I’m going, “No, that’s something I just heard, maybe it’s wrong.”
“It’s not wrong.”
“OK. Then I’d love to hear.”
Once I was able to reassure him that I wasn’t somehow yanking his chain, or making fun of him, or something, which I wouldn’t do, but all of a sudden the conversation turned. And off the top of his head, he recited this poem I had never heard. He had this beautiful voice, such a baritone voice. This kind of voice that just commands attention, turns heads. He does his poem. And then, now he’s turning the tables on me. He says, “And of course you heard that poem.” And I go, “Sorry, Dr. Holland, I’ve never heard that poem.”
He goes, “Well, you should have.” And he starts telling me where it is. I looked it up and it was a eulogy to somebody lost. The fact that’s the poem that he can do verbatim, that he can do just off the top of his head, with somebody just asking about it out of the blue. That was pretty insightful in a way.
TW: Yes, it did. There’s just one whole chapter on Holland and two major sections about Pinkel. In Buffalo, and you need Pinkel then in Memphis. Holland pops up all over the place, but other places he’s more of this, for ALGB, he’s the leader, he’s the ring leader. He’s the guy pushing against this and that.
With Holland, that favorite poem, written by Thomas Gray and published in 1751. It’s 144 lines. Here it is. And it was inspired by the death of Richard West, who was Gray’s friend and fellow poet. And this is toward the end of that chapter. And this is what Holland recited off the top of his head, just blew me away. Hang on I’ll just read a couple of lines, it’s about four lines.
Full many a gem of purest ray serene The dark unfathom’d caves of ocean bear: Full many a flower is born to blush unseen, And waste its sweetness on the desert air.
Full many a gem of purest ray serene
The dark unfathom’d caves of ocean bear:
Full many a flower is born to blush unseen,
And waste its sweetness on the desert air.
That’s what he just came up with off the top of his head. I was going, “Holy Moly.” And then a little bit later, in that, he said, “I love the cadence of that, how it rolls off the tongue. I learned it when I was young and I’ve never forgotten it. To me, it’s about believing good work can be done, how good work can be accomplished if you’re willing to push on.” Which, that’s him.
A lot of the Holland thing, at least stepping back and getting a sense of him is chapter 14. Because he blew me away. One of the things I liked about Holland, too, was he was being groomed to be a lawyer and then went into medicine. And he talks about looking through a microscope, really, for the first time and just going, “Whoa, OK. This is where I’m going.” And he was supposed to be. His dad was a lawyer, I think his grandfather was a lawyer. So, just the fact he went against family tradition is something I can relate to.
TW: They were called Acute Leukemia Group B. It was headed by Holland and other top doctors were Frei, Pinkel, Sinks, and Zubrod at the Division of Cancer Treatment at NCI, the National Cancer Institute, who put them together. They roughly came together in 1962.
There’s a photo in “Cancer Crossings” on page 15. It’s ALGB, Acute Leukemia Group B. It looks like he got up on a ladder or a table and he’s just doing a big group shot, and right up front is Holland.
At first this whole group seems so big. There are very few women. Looks like there’s two or three in there. There’s Pinkel. You can see everybody. At first, it seems it’s maybe 40 people, maybe 50 at max, somewhere between 30 and 40. And it looks like such a huge group, but then you realize these are the only ones in America or even the world daring to take on childhood cancer. And at that point it doesn’t seem like very many of them at all.
Holland headed them up. They formed in ‘62 and they started with a congressional grant and away they went. One of their first trials was using Vincristine, 6-MP, prednisone. This is not to take anything away from Sidney Farber and what was going on in Boston and other places. But the Cancer Cowboys arguably better utilized many of the newer meds becoming available— 6-MP, methotrexate, daunomycin, Cytoxan, etc.
Most of the old guard, and I guess I’ll put Farber in the old guard, and maybe that’s unfair—really wanted to study them. “OK, here’s this new one, what’s this do now?” And they were giving them to the patients one at a time. What the ALGB group did was, “Screw this. We don’t have time. We’re going to do it in combination two, three, even four at a time.”
And they didn’t have time to do maybe all the extensive studies. “What happens when you put methotrexate with daunomycin?” “Oh, I don’t know, but this kid’s dying. Let’s find out.” And that was where they got really criticized. But, frankly, that leap of faith is also what helped turn the table against childhood cancer.
Look at the disease that my brother had, acute lymphoblastic leukemia. When my brother was diagnosed, it had a 10% survival rate. Today, 90% of those kids are living to be adults. And that’s because of this group and how they were willing to just go for it. These doctors were the ones who dared to take it on. In doing so, they came up with many of the things that we just so much take for granted today when it comes to cancer research and cancer care.
TW: I didn’t quite get it at first. It had to be a conversation with Pinkel, or maybe it was Jerry Yates. They kept saying, “Yeah, everybody was against us.”
I just kept skimming across that and it wasn’t until later on, where I went, “What do you mean they were against you? What’s this about?” It’s got to be doubly difficult to take on a shapeshifter of a disease like cancer and then have no support for extended periods of time from many of your peers or those in your professional community.
I think that’s just got to be really, really difficult. That’s one of the things that I admire about these doctors and nurses so much because it’s one thing to do something difficult, but it’s another thing to be doing something difficult and then everybody going, “You’re an idiot. What are you doing this for?”
Almost every one of these doctors had a medical mentor who tried to argue them out of going into this field. They just said, “No, this is a career ender. What, are you crazy?” If you looked in the Handbook of Pediatrics back in the 1960s under the heading “ leukemia,” the entry is a little over a page, that’s it. And if you look at what treatment is, or ways to care, or what can be done—it’s make the patient as comfortable as possible because he or she won’t be with us that much longer.
It was a complete cave. It was waving the white flag. That’s what these doctors and nurses, and the nurses were just as important, that’s what they refused to do. I think it’s one thing not to wave the white flag if you’ve got a little bit of a cheering section, but I think it’s another thing to try to battle something or not wave the white flag if the crowd around you is booing you, just saying “You’re an idiot.” They got it with both barrels in a way. And that extended for quite a long period of time.
And you can see, I was struck by it because I just kept assuming, OK, they’re going to take on this difficult thing and try their best, and the medical community is with them. No. Much of the medical community was opposed to them.
That I just find remarkable, how they just kept going. I think in some ways that’s why they, despite their differences in personality and approach, this is why they stuck together. They only had each other.
TW: I was writing all the time. I tend to write research. I go back and forth. More or less, the arc was roughly 1966 with my brother’s diagnosis, and 1973 when he died. There’s a little bit about what goes on into the late ‘70s and such.
But that was the arc. I was fortunate that a lot of the major medicine or advances in this world happened during that time. I fudged it somewhat. The discovery on the blood centrifuge machine, for example, is a little bit after my brother’s death. But I loved it so much, we wedged in there.
Also the golden era of cancer research at Roswell Park ends within five, certainly 10 years after my brother’s death. And part of it is just these things that are out of the doctors’ control.
Roswell Park gets a new director and he’s not as savvy as the ones that were there who brought in Pinkel and Sinks and Holland. The money from the state doesn’t dry up, but it’s not as abundant as it once was.
The others read the tea leaves and said, “Time to go.” They start to scatter with the wind. This happened within a couple years after my brother’s death. I feel that Roswell Park is having another golden era right now, but that first golden era was over.
“Cancer Crossings,” the title, came from the sailing trips we used to take as a family across Lake Ontario, and which is 40 miles across the open water. My dad was emphatic that all of us learn to sail. It wasn’t until I was finishing this book, I called my dad up and said, “Did you teach us all how to sail because it was your own personal pushback to having a son diagnosed and eventually die of leukemia?” There was this pause. And he said, “Of course it was.” I went, “God, you could have told me that at some point and kept me out of therapy.”
Because the thing is, my dad wasn’t the most religious guy. He’s a very spiritual guy in a way, for him, sailing was a very spiritual exercise, activity. The wind is invisible. It never stays the same. It’s always changing in velocity or direction, and you’ve got to know what to do. You’ve got to be able to trim your sales.
He felt if he could teach us all how to sail, we’d be fine moving ahead in life, and in a way I think he was right. So what we did with the cover is the artist drew little waves in yellow, and there’s a little boat, down on the fourth wave down or so.
I remember when the book came out and I sent copies to the doctors. Sinks immediately said, “I love this cover.” I’m going, “Well, great. What do you love about it?”
He added, “I love the waves.” And I go, “OK, Lucius, keep talking to me. You’re losing me. What do you love about the waves?” And he continued, “The way that they’re drawn. None of the waves is equal. With some of them, it’s a little bit more faint. With others, they continue from one side to the other.”
I still didn’t get what he was referring to.
“Don’t you see?” he said. “Those are like the clinical trials.”
“The waves are like the clinical trials?”
“Yes, that’s what we’d be looking for in the clinical trials. We’d be looking for those little variances, how they differ just a bit, because no clinical trial is uniform. Just like the waves here are not uniform. And it’s when you find those subtle differences, the small differences, that that means you’re onto something. That means you’re starting to figure out potentially how the medicine and even how this disease works.”
I even talked with the artist afterward. He wasn’t doing anything like that, but that’s the way a lot of the doctors responded to it.
TW: Yeah. Sometimes you luck out.
TW: Yeah. We were talking a little bit earlier—when do you end the book? I’ve always been intrigued. Could I do a volume two on this? Maybe when Pinkel leaves St. Jude, what goes on? Who does he hand it off to? Maybe.
Obviously, my brother’s left the scene at that point. Buffalo has probably, at least for a while, left the scene. I’ve always kicked that around a little bit, but then you’re not quite sure how you are ever going to end it, because we’re still dealing with some degree of cancer.
Also, if I had to do it all over again, I would have had more about the nurses. It was difficult work. But so many stayed on, and they stayed because they felt they were being listened to. They felt that they were part of this effort. That seems like a no brainer right now. But at that point in time, from what they told me, it was very much outside the box, in fact, so much so that Holland, echoed by Sinks, told the nurses at Roswell Park, “You’re with these patients more than we are. We need to listen to you. You need to tell us things.”
For many of the nurses it was a highlight of their careers because they were being treated as equals. That was pretty unusual back then.
TW: We just finished the holiday season and I still hear from a couple of them.
TW: I think that’s what I think you see in successful hospitals or facilities today. It is a team effort. And again, it’s one of those things that seems like a natural thing to do. But again, we’re back to these doctors willing to listen, and going beyond willing to listen, they’re searching out the nurses, and they’re saying, “OK, what do you guys see?” And that’s the way they would often start their day—debriefing the nurses, which makes a lot of sense.
TW: I guess a little bit back to family, we’ve been talking a lot about the doctors, which makes perfect sense. But cancer, obviously, it impacts every family sometimes in a different way. I still tell people I’m the oldest of six, even though I lost a brother. One of the things we had to do as kids, as siblings, especially when Eric was off to the hospital, was come together as a family.
We really had to, in some ways, take care of ourselves. Everybody ended up with different important roles. I was the driver, the chauffeur. I was able to get my license a little bit earlier. They had a provision that actually applies to farm equipment and people driving tractors. But as a result, I was driving by myself by the age of 15 and a half. And that meant I was getting my siblings to school and picking up my youngest sister from daycare, especially if my mom wasn’t coming home that night. I became the wheels guy.
My sister Susan became a very good cook. My middle brother, Chris, and he’s still this way- was the one who held everything together on the home front, especially with the younger ones. I’ve got a younger brother after him, Bryan, and then a younger sister, Amy. Chris would babysit them. He’s always been the glue guy, so to speak, the one that holds it together, which I think is the role of the middle sibling anyway.
We’re all very, very different. In some ways we’re like the doctors a little bit. We certainly have our arguments, and we have our disagreements—and the fur flies. One of the things that we don’t do that I see with other families , is we don’t hold grudges. At least not too much.
When it’s done, it’s done. If I’ve learned any lesson out of all this it is that time’s short. Don’t let grudges mess it up. Don’t let excuses mess it up. Don’t let fear mess it up, do it. My father died last March and we were able to have a large memorial service for him outdoors. My brother Chris was the emcee. All of us spoke about different things in my father’s life, but we all brought more or less what we were good at to that day. It was really cool just to sit back, and watch it, and realize that even though we can drive each other crazy, it’s not going to keep me from calling any of them tomorrow.
You go through something like this, the death of a sibling, those petty things? They don’t matter. You find a way to move past that.