Childhood leukemia: how a deadly cancer became treatable

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.

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.

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.

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.

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.

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!

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...

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

Made possible by government funding of basic scientific research. This is what your tax dollars bought, and what they're currently trying to destroy.

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.

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.