https://www.smithsonianmag.com/innovation/childhood-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.
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.
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.
Popular, athletic, good-looking guy. Then one day it was announced in the school news that he had passed away.
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.
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.
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.
Here's a bit more about him from the obituary my sister wrote: https://www.northjersey.com/obituaries/pnys1147090
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.
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!
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 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.
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.
“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.
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.
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.
srean•11h ago