My cousin developed leukemia as kid when he was only 3 years old in the end of the seventies.
At the time, specially in Brazil, the decease was a death sentence. His mother took him to dozen of doctors and specialists.
His condition deteriorated fast, and she endup trying even pseudoscinece stuff like spiritual healing and mediuns. She made a promise to the patron saint of her church, Saint Judas, to help people in the same situation as her.
At the time, the brazilian equivalent of the FDA was debaging releasing Interferon as a threatment for kids in Brazl. She was able to put him in trials and the treatment worked on him. My cousin is still alive and kicking to this day, but unfourtunaly, he became infertile as a result of the threatment.
To fulfill her promise, my auntie organized a group in the Rotary and over the years the raised donations, organize a charity auctions and received some land as a donation. In the place they started a children hospital for treatment of cancer called GPACI. The open in 1981, and today the hispital a reference of research and treatment of kids in Brazil.
I don't want to go deep into it today (Fathers Day here), but he's alive and well now. We rang the bell just over two years ago.
He is enrolled in a study through the Children's Oncology Group mentioned here, and underwent an experimental modification specifically for male patients.
Specifically, the current state of treatment protocols (when he started) was that males received an extra ~6 months of treatment as there was thought that the testes could serve as a repository for the cancer. The data says that is likely not true, and that the tradeoff for the longer chemo is worse than any risk present.
We were fortunate that he hit every single "best case", from him being diagnosed very early, to all of the best possible results from his blood tests at every point.
Many of my comments talking about my experience are buried, but there is plenty that I've said here on HN.
I went through chemotherapy for ALL as a kid and I had to do almost an extra year of treatment because I was male, for the reasons you mention in your comment.
Male kids before me, also had to do a surgery to remove something from their testes to make sure that there wasn't any chance of having the repository for the cancer left. I was lucky enough to not have to do that.
I do find it impressive though that this is still a thing as I was treated many years ago. My feeling was always that the treatment protocols, for ALL at least, tend to get more aggressive but also much shorter. Exactly because of the tradeoffs you mentioned.
Your little one is a hero. He might be too young right now to realize what he has achieved but please keep reminding him that.
Also, something that I don't see being discussed enough when it comes to childhood cancers, is the effect it has to the family as a whole. Parents especially, do come out with their own trauma from this experience and they need to heal too.
Finally, for anyone interested.
Stanford has an amazing Adolescent and Young Adult Cancer program (SAYAC)[1], hopefully more institutions have similar programs but I can't emphasize enough the value they can bring.
Elephants and Tea [2] is a magazine for adolescent and young adult (AYA) patients, survivors, and caregivers. Great place to learn more about the experiences from the people who are there or have been there.
Im going to think about this comment a lot today. Not in a “thoughts & prayers” way, just because this makes me so happy & proud for humanity, that we can do actually worthwhile things like this together. That’s the kind of stuff I want to think about on my silly made-up Dad holiday. Cheers!
My dad started his work as a Pediatric Hematologist Oncologist in the late 60s. He had a firm belief that cure rates could and would climb as a result of research and better clinical care. He spent his life pursuing both.
When people would ask him how he managed to stay so positive - he was one of the happiest people I’ve ever known - he’d reference the trends highlighted in this article.
That didn’t change how hard it was when he lost a patient, but I know he always had his eyes and his mind on the future.
This is an incredible example of science and medicine. Thanks OP for posting it.
I don't fully understand how he did it. I know he took a lot from the line in the Talmud that said "whoever saves a life, it is considered as if he saved an entire world."
My mom says that his baseline was incredibly high and that he was incredibly resilient. He also had a big rebellious streak, an analytical mind, and endless compassion.
I'm an ALL Leukemia survivor (~89' to ~95') and this is incredibly encouraging to hear. I'll never forget the long hospital stays, early-morning surgeries, and now, the long-term impact to my life (it changes your entire personality).
I hope we eventually stomp it out. No child deserves to go through that. Here's hoping we can take what's been learned in the West and see to it that all kids get access to affordable treatment.
I don't know how to quantify the impact it had on him from a personality perspective, as he is severely autistic and barely speaks. He was in treatment from age 3 to 6.
For the rest of his family (parents and sibling) it had a massive impact. I already had anxiety issues (TBI while in the military flipped that switch), now I have something my doc describes as health related PTSD.
The explanation of “How” is not made well. Here is the crux:
“This improvement in survival reflects the impact of intensive treatment regimens. These treatments usually still involve years of intensive chemotherapy, which is often physically and mentally challenging and can cause long-term side effects.”
“Intensive treatment regimens” is awkward jargon.
What this should say is “the right dose for the individual patient given their genotype, age, and disease subtype”.
Progress over the last 2+ decades has involved state-of-the-art genotyping of key gene variants involved in handling various aspects of cancer therapeutics: drug transporters, drug metabolizing genes (P450-type), and genes that modulate excretion rates.
What also must be highlighted is MAJOR progress in remission and survival without any major changes in the actual drug armamentarium (until very recently).
Finally a shout-out to NIH programs and extramural support that made much of this possible. And to Saint Jude Children’s Research Hospital in Memphis, Tennessee, with donations received from around the world. Bravo.
It's amazing to consider how many people have contributed parts to all the improvements listed in this article. It's not as spectacular and doesn't get the same immediate positive feedback as, say, saving a drowning child, but each of them has, on average, probably saved multiple lives, and more lives will continue to be added to that tally.
Don Pinkel is not well known but he was a pioneer in the 60’s at St. Jude in Memphis in developing the first combination treatments that pushed the childhood acute lymphoblastic leukemia cure rate from effectively zero to about 50%.
A typical child knows about one child with cancer. Back-of-the-envelope, the number a child knows would be (incidence rate of childhood cancer) * (typical K-8 size), but doubled since they observe all grades ahead and behind them. Incidence rate is about 20 per 100,000 and we might assume a typical K-8 is about 2000 students, so (20 / 100000 * 2000 * 2) ~ 1.
The first figure shows an order of magnitude decrease in mortality over the last few decades from childhood cancer. The average child growing up in the 70s would know a child that died from cancer, and today they would not!
Anecdata checks out. Had twin girls in my second grade class. One got leukemia. Even with a perfect match bone marrow transplant there was only one in my third grade class. Things have improved so much since 77
When I was a kid in the 90s and early 00s in Serbia, later Montenegro, I knew 2-3 kids that had leukemia at some point, and if my memory serves me well, all of them survived. One neighbor kid had it really rough (was in therapy for years, looked like hell), but still survived. Even then, the treatments were so available that surviving it was the expected outcome.
Just years before it was quite common for children to die from it - I know 2 couples who lost kids to it in the 80s and early 90s.
Another thing was that a couple of kids had congenital heart conditions. Those didn't fare that well. My classmate from elementary survived that with a pacemaker, but a neighbor suddenly died in her mid-20s, that was really sad.
I'm ALL survivor. Treated (I think - it's been a while) approximately from Spring '00 through 2003, a mix of middle school and high school.
The treatment absolutely has a lasting impact - often due to the severe side effects of treatment. But even with notable impacts to short term memory and deep concentration I was still able to get a CS degree and work as a SWE.
Something that's shocking to me: the chronic absenteeism rate nationally is about 30%. I barely hit the threshold for that (missing 10% of school) number while going through cancer treatment. It makes me very worried about the direction of the US that so many kids are missing as much school a cancer patient.
It should also be noted that the treatment process is a big burden on families, who will probably not want their child be alone for extended hospital stays, but may need to for work.
The big caveat, though, is access. These advances are still largely confined to high-income countries. Replicating this success globally is the next frontier
By your logic high income countries should cut funding for leukemia research and spend the money for increasing fertility as that would result in a net increase in the number of children.
+1 +1 +1.... I'm glad that all diseases have been cured so that no further research with public funds is necessary /s. How can some humans be so short-sighted to cheer on their own suffering...
What the article does not mention is that one of the more recent key biological therapies that is used is asparaginase, which has proven to be extremely effective for ALL.
Also surprisingly, the article did not mention that there's a severe shortage of this therapy currently in the world, which has recently affected treatment progress worldwide, especially in the developing world.
Asparaginase can be made dirt cheaply (it's used in food processing for breadmaking, frying, etc, to destroy certain carcinogens), but the product is extremely unstable for the kind of purity that is required for ALL treatments. The shortage is because there's only one manufacturer now.
One thing that Xers and xennials grew up with that later generations did not necessarily -- and unlike Atari consoles, wood paneling, and staying outside till the street lights came on, they're unlikely to yell to clouds about it on TikTok -- is the phenomenon of "knowing that one kid in school who died of leukemia".
Growing up, our leukemia kid was Donny Miceli. He was a great kid -- friendly, active, and athletic, even throughout all but the latest courses of his therapy. Could've been the Phineas to any number of potential Gene Forresters out there.
When our teacher announced that Donny had died, I was saddened but in a "didn't show it" way. It wasn't a blow to the system. It was something we all had seen a long time coming.
The school planted an apple tree in the courtyard in Donny's honor, with like a ceremony and everything.
How blessed are the later generations, that far fewer trees will be planted in school courtyards in recognition of students who are no longer there, due to leukemia.
That depends on the size of the school you went to. With 500 kids, it's unlikely to have even a single leukemia case in 13 years. It gets more likely with 1000 kids. And if you went to a giant school with 2000 kids, there probably was a case or two.
No offense, I don't know anyone who died of leukemia or even had it.
I think you may be experiencing a bit of the "blue car" effect. Of course everyone who went to your school knew someone who died of leukemia. They all knew the same kid.
And once you get to college, I wouldn't be surprised if you had run into a few other people who also knew people who died of leukemia.
But it was not as common an occurrence as you seem to think it was.
It's like 4 per 100k kids per year from ages 0-19, but a pretty high portion of that initial incidence is in elementary school ages -- so 1 per 1500 or so over the elementary to middle school years. And that's just leukemia.
Between school sizes, mixing of schools going to middle school, and auxiliary networks through family and parent networks-- you were pretty dang likely to know someone or know of someone who was affected by childhood cancer. No, it's not a universal experience.
In my extended social circle, I know of 3 cases of childhood cancer that would have had a high fatality rate 2-3 decades ago.
My cousin developed leukemia as kid when he was only 3 years old in the end of the seventies.
At the time, specially in Brazil, the decease was a death sentence. His mother took him to dozen of doctors and specialists.
His condition deteriorated fast, and she endup trying even pseudoscinece stuff like spiritual healing and mediuns. She made a promise to the patron saint of her church, Saint Judas, to help people in the same situation as her.
At the time, the brazilian equivalent of the FDA was debaging releasing Interferon as a threatment for kids in Brazl. She was able to put him in trials and the treatment worked on him. My cousin is still alive and kicking to this day, but unfourtunaly, he became infertile as a result of the threatment.
To fulfill her promise, my auntie organized a group in the Rotary and over the years the raised donations, organize a charity auctions and received some land as a donation. In the place they started a children hospital for treatment of cancer called GPACI. The open in 1981, and today the hispital a reference of research and treatment of kids in Brazil.
Here is the site if you wanna know more https://www.gpaci.org.br/
My son was diagnosed with B-ALL (RUNX1) in 2020.
I don't want to go deep into it today (Fathers Day here), but he's alive and well now. We rang the bell just over two years ago.
He is enrolled in a study through the Children's Oncology Group mentioned here, and underwent an experimental modification specifically for male patients.
Specifically, the current state of treatment protocols (when he started) was that males received an extra ~6 months of treatment as there was thought that the testes could serve as a repository for the cancer. The data says that is likely not true, and that the tradeoff for the longer chemo is worse than any risk present.
We were fortunate that he hit every single "best case", from him being diagnosed very early, to all of the best possible results from his blood tests at every point.
Many of my comments talking about my experience are buried, but there is plenty that I've said here on HN.
I went through chemotherapy for ALL as a kid and I had to do almost an extra year of treatment because I was male, for the reasons you mention in your comment.
Male kids before me, also had to do a surgery to remove something from their testes to make sure that there wasn't any chance of having the repository for the cancer left. I was lucky enough to not have to do that.
I do find it impressive though that this is still a thing as I was treated many years ago. My feeling was always that the treatment protocols, for ALL at least, tend to get more aggressive but also much shorter. Exactly because of the tradeoffs you mentioned.
Your little one is a hero. He might be too young right now to realize what he has achieved but please keep reminding him that.
Also, something that I don't see being discussed enough when it comes to childhood cancers, is the effect it has to the family as a whole. Parents especially, do come out with their own trauma from this experience and they need to heal too.
Finally, for anyone interested.
Stanford has an amazing Adolescent and Young Adult Cancer program (SAYAC)[1], hopefully more institutions have similar programs but I can't emphasize enough the value they can bring.
Elephants and Tea [2] is a magazine for adolescent and young adult (AYA) patients, survivors, and caregivers. Great place to learn more about the experiences from the people who are there or have been there.
1. https://www.stanfordchildrens.org/en/services/adolescent-you... 2. https://elephantsandtea.org
Im going to think about this comment a lot today. Not in a “thoughts & prayers” way, just because this makes me so happy & proud for humanity, that we can do actually worthwhile things like this together. That’s the kind of stuff I want to think about on my silly made-up Dad holiday. Cheers!
CONGRATS to you and your son. And Happy Father's Day! :)
My dad started his work as a Pediatric Hematologist Oncologist in the late 60s. He had a firm belief that cure rates could and would climb as a result of research and better clinical care. He spent his life pursuing both.
When people would ask him how he managed to stay so positive - he was one of the happiest people I’ve ever known - he’d reference the trends highlighted in this article.
That didn’t change how hard it was when he lost a patient, but I know he always had his eyes and his mind on the future.
This is an incredible example of science and medicine. Thanks OP for posting it.
Sounds like you already know this, but your dad's a hero. Infinite respect for the folks who dedicate their lives to helping others.
Thanks for saying that.
Here's a bit more about him from the obituary my sister wrote: https://www.northjersey.com/obituaries/pnys1147090
Baruch dayan emes. He seemed like an extraordinary person.
what a guy, your dad was a great person
Thank you.
It's hard to imagine the emotional weight of working in pediatric oncology back then, when outcomes were so bleak
I don't fully understand how he did it. I know he took a lot from the line in the Talmud that said "whoever saves a life, it is considered as if he saved an entire world."
My mom says that his baseline was incredibly high and that he was incredibly resilient. He also had a big rebellious streak, an analytical mind, and endless compassion.
My father knew a neurosurgeon in the 70s(?), when the outcome statistics were pretty bleak.
He asked him how he handled it, and the guy said "Because the few that I save wouldn't be, if we didn't do anything."
Sometimes, greater than zero is the win.
I'm an ALL Leukemia survivor (~89' to ~95') and this is incredibly encouraging to hear. I'll never forget the long hospital stays, early-morning surgeries, and now, the long-term impact to my life (it changes your entire personality).
I hope we eventually stomp it out. No child deserves to go through that. Here's hoping we can take what's been learned in the West and see to it that all kids get access to affordable treatment.
My son, not I, had ALL and is in remission.
I don't know how to quantify the impact it had on him from a personality perspective, as he is severely autistic and barely speaks. He was in treatment from age 3 to 6.
For the rest of his family (parents and sibling) it had a massive impact. I already had anxiety issues (TBI while in the military flipped that switch), now I have something my doc describes as health related PTSD.
The explanation of “How” is not made well. Here is the crux:
“This improvement in survival reflects the impact of intensive treatment regimens. These treatments usually still involve years of intensive chemotherapy, which is often physically and mentally challenging and can cause long-term side effects.”
“Intensive treatment regimens” is awkward jargon.
What this should say is “the right dose for the individual patient given their genotype, age, and disease subtype”.
Progress over the last 2+ decades has involved state-of-the-art genotyping of key gene variants involved in handling various aspects of cancer therapeutics: drug transporters, drug metabolizing genes (P450-type), and genes that modulate excretion rates.
What also must be highlighted is MAJOR progress in remission and survival without any major changes in the actual drug armamentarium (until very recently).
Finally a shout-out to NIH programs and extramural support that made much of this possible. And to Saint Jude Children’s Research Hospital in Memphis, Tennessee, with donations received from around the world. Bravo.
It's amazing to consider how many people have contributed parts to all the improvements listed in this article. It's not as spectacular and doesn't get the same immediate positive feedback as, say, saving a drowning child, but each of them has, on average, probably saved multiple lives, and more lives will continue to be added to that tally.
Don Pinkel is not well known but he was a pioneer in the 60’s at St. Jude in Memphis in developing the first combination treatments that pushed the childhood acute lymphoblastic leukemia cure rate from effectively zero to about 50%.
https://www.smithsonianmag.com/innovation/childhood-leukemia...
A typical child knows about one child with cancer. Back-of-the-envelope, the number a child knows would be (incidence rate of childhood cancer) * (typical K-8 size), but doubled since they observe all grades ahead and behind them. Incidence rate is about 20 per 100,000 and we might assume a typical K-8 is about 2000 students, so (20 / 100000 * 2000 * 2) ~ 1.
The first figure shows an order of magnitude decrease in mortality over the last few decades from childhood cancer. The average child growing up in the 70s would know a child that died from cancer, and today they would not!
Anecdata checks out. Had twin girls in my second grade class. One got leukemia. Even with a perfect match bone marrow transplant there was only one in my third grade class. Things have improved so much since 77
When I was a kid in the 90s and early 00s in Serbia, later Montenegro, I knew 2-3 kids that had leukemia at some point, and if my memory serves me well, all of them survived. One neighbor kid had it really rough (was in therapy for years, looked like hell), but still survived. Even then, the treatments were so available that surviving it was the expected outcome.
Just years before it was quite common for children to die from it - I know 2 couples who lost kids to it in the 80s and early 90s.
Another thing was that a couple of kids had congenital heart conditions. Those didn't fare that well. My classmate from elementary survived that with a pacemaker, but a neighbor suddenly died in her mid-20s, that was really sad.
I'm ALL survivor. Treated (I think - it's been a while) approximately from Spring '00 through 2003, a mix of middle school and high school.
The treatment absolutely has a lasting impact - often due to the severe side effects of treatment. But even with notable impacts to short term memory and deep concentration I was still able to get a CS degree and work as a SWE.
Something that's shocking to me: the chronic absenteeism rate nationally is about 30%. I barely hit the threshold for that (missing 10% of school) number while going through cancer treatment. It makes me very worried about the direction of the US that so many kids are missing as much school a cancer patient.
It should also be noted that the treatment process is a big burden on families, who will probably not want their child be alone for extended hospital stays, but may need to for work.
The big caveat, though, is access. These advances are still largely confined to high-income countries. Replicating this success globally is the next frontier
Practical speaking you are right. But the main ingredient in success is getting dosages and timing right, not ultra-expensive drugs.
The low income countries have more kids / higher fertility rates to make up for it.
Disgusting.
By your logic high income countries should cut funding for leukemia research and spend the money for increasing fertility as that would result in a net increase in the number of children.
That's a revolting inhumane comment.
Made possible by government funding of basic scientific research. This is what your tax dollars bought, and what they're currently trying to destroy.
+1 +1 +1.... I'm glad that all diseases have been cured so that no further research with public funds is necessary /s. How can some humans be so short-sighted to cheer on their own suffering...
Crap. And I thought it was god just being mysterious (again).
What the article does not mention is that one of the more recent key biological therapies that is used is asparaginase, which has proven to be extremely effective for ALL.
Also surprisingly, the article did not mention that there's a severe shortage of this therapy currently in the world, which has recently affected treatment progress worldwide, especially in the developing world.
Asparaginase can be made dirt cheaply (it's used in food processing for breadmaking, frying, etc, to destroy certain carcinogens), but the product is extremely unstable for the kind of purity that is required for ALL treatments. The shortage is because there's only one manufacturer now.
Main thing that, having had it happen to me, that I'd worry about w/ L Asparaginase: https://pmc.ncbi.nlm.nih.gov/articles/PMC4976870/. (In the sense of risk and monitoring, not avoiding use.)
Small mercies and immense gratitude.
One thing that Xers and xennials grew up with that later generations did not necessarily -- and unlike Atari consoles, wood paneling, and staying outside till the street lights came on, they're unlikely to yell to clouds about it on TikTok -- is the phenomenon of "knowing that one kid in school who died of leukemia".
Growing up, our leukemia kid was Donny Miceli. He was a great kid -- friendly, active, and athletic, even throughout all but the latest courses of his therapy. Could've been the Phineas to any number of potential Gene Forresters out there.
When our teacher announced that Donny had died, I was saddened but in a "didn't show it" way. It wasn't a blow to the system. It was something we all had seen a long time coming.
The school planted an apple tree in the courtyard in Donny's honor, with like a ceremony and everything.
How blessed are the later generations, that far fewer trees will be planted in school courtyards in recognition of students who are no longer there, due to leukemia.
https://en.wikipedia.org/wiki/Why,_Charlie_Brown,_Why%3F
That depends on the size of the school you went to. With 500 kids, it's unlikely to have even a single leukemia case in 13 years. It gets more likely with 1000 kids. And if you went to a giant school with 2000 kids, there probably was a case or two.
Jason Bell was the name, I think, of the kid in my high school who died from leukaemia.
Popular, athletic, good-looking guy. Then one day it was announced in the school news that he had passed away.
My sister, sadly. Long time ago now, but definitely filled with mixed emotions from this article.
No offense, I don't know anyone who died of leukemia or even had it.
I think you may be experiencing a bit of the "blue car" effect. Of course everyone who went to your school knew someone who died of leukemia. They all knew the same kid.
And once you get to college, I wouldn't be surprised if you had run into a few other people who also knew people who died of leukemia.
But it was not as common an occurrence as you seem to think it was.
It's like 4 per 100k kids per year from ages 0-19, but a pretty high portion of that initial incidence is in elementary school ages -- so 1 per 1500 or so over the elementary to middle school years. And that's just leukemia.
Between school sizes, mixing of schools going to middle school, and auxiliary networks through family and parent networks-- you were pretty dang likely to know someone or know of someone who was affected by childhood cancer. No, it's not a universal experience.
In my extended social circle, I know of 3 cases of childhood cancer that would have had a high fatality rate 2-3 decades ago.
What you’re demonstrating is called survivor bias.