[HN Gopher] Childhood leukemia: how a deadly cancer became treat...
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Childhood leukemia: how a deadly cancer became treatable
Author : surprisetalk
Score : 289 points
Date : 2025-06-15 13:12 UTC (1 days ago)
(HTM) web link (ourworldindata.org)
(TXT) w3m dump (ourworldindata.org)
| srean wrote:
| Small mercies and immense gratitude.
| bglazer wrote:
| 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...
| bitwize wrote:
| 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.
| bena wrote:
| 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.
| YesThatTom2 wrote:
| What you're demonstrating is called survivor bias.
| mlyle wrote:
| 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.
| dontTREATonme wrote:
| Yea got to agree, no child I knew personally or even knew of
| in school had cancer. However, two of my close friends in
| school died of other causes. And a sibling of a friend also
| died. So I definitely experienced loss.
| Glyptodon wrote:
| FWIW, someone I know thought the kid with cancer was getting
| away with playing hookie, and only discovered what was
| actually happening years later (when we were randomly
| catching up). Similarly, through a personal connection to the
| cancer kid, I learned another kid had survived Leukemia in
| elementary. And I don't think almost anyone else knew. So
| it's not really a given that everyone even knows. (At a high
| school with like 7 or 8 hundred kids.)
| stevoski wrote:
| 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.
| jltsiren wrote:
| 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.
| billforsternz wrote:
| A very HN reply to a poetic and heartfelt comment.
| jltsiren wrote:
| A reply to a comment with a false generalization and a
| personal anecdote.
|
| I'm gen X from a country where schools typically have
| 200-500 students. Small enough that rare things like
| leukemia didn't happen in most schools. They were something
| that happened to a kid in the news but not to a kid you
| kind of knew in your school. People generally didn't talk
| about leukemia or think about it, because it did not affect
| the life they experienced.
|
| Rare things still happened, but they were different for
| each school. In my school, someone I knew was murdered
| while visiting her family in Russia.
| ojbyrne wrote:
| My sister, sadly. Long time ago now, but definitely filled with
| mixed emotions from this article.
| wileydragonfly wrote:
| https://en.wikipedia.org/wiki/Why,_Charlie_Brown,_Why%3F
| akharris wrote:
| 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.
| ErigmolCt wrote:
| It's hard to imagine the emotional weight of working in
| pediatric oncology back then, when outcomes were so bleak
| ethbr1 wrote:
| 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.
| akharris wrote:
| 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.
| throwaway2037 wrote:
| > the line in the Talmud that said "whoever saves a life,
| it is considered as if he saved an entire world."
|
| I am not Jewish but I learned about this phrase watching
| the film _Schindler 's List_ in high school. That phrase,
| and listening to Ben Kingsley's character say it, has
| lived, rent-free, in my mind for the last umpteen years.
| felbane wrote:
| Sounds like you already know this, but your dad's a hero.
| Infinite respect for the folks who dedicate their lives to
| helping others.
| akharris wrote:
| Thanks for saying that.
|
| Here's a bit more about him from the obituary my sister
| wrote: https://www.northjersey.com/obituaries/pnys1147090
| hasmolo wrote:
| what a guy, your dad was a great person
| akharris wrote:
| Thank you.
| phonon wrote:
| Baruch dayan emes. He seemed like an extraordinary person.
| akharris wrote:
| Thank you so much. He was.
| throwaway2037 wrote:
| This obituary is so well written that it could be a front
| page star on HN. I am not joking. Incredible. You dad was
| the like the good guy version of the Terminator --
| unstoppable in all forms.
| akharris wrote:
| Thank you.
|
| My sister is an incredible write and he was a perfect
| subject.
| sizzle wrote:
| Sorry for your loss. He saved so many lives, what an
| incredible legacy he left on the world. He deserves to be
| celebrated widely. Please make a Wikipedia entry for his
| accomplishments?
| akharris wrote:
| Thank you. I've only ever had bad luck creating Wikipedia
| entries, though it's been a while.
| croisillon wrote:
| for people outside US: https://web.archive.org/web/20250415
| 180024/https://www.north...
| thrdbndndn wrote:
| I'm "outside US" and I can open the link directly. Is it
| blocked somewhere?
| croisillon wrote:
| i get constantly redirected to
| https://eu.northjersey.com/ probably because of GDPR or
| something
| sparklingmango wrote:
| Wow. Thank you for sharing. May his memory be a blessing to
| you and yours.
| akharris wrote:
| Thank you.
| ecshafer wrote:
| > he recalled that when starting his residency at the
| Children's Hospital in Philadelphia in 1970, the survival
| rate for the sick children was only 30 percent
|
| Jesus, 30 percent survival rate of children. I couldn't
| image working in that kind of situation and not be
| emotionally destroyed.
|
| > Going from a 30 percent to an 80 percent cure rate, I'd
| say we are getting there
|
| Your father is a literal hero.
| akharris wrote:
| Thank you.
|
| What I love about that quote is that he knew that, some
| day, the cure rate would go even higher.
| ErigmolCt wrote:
| The big caveat, though, is access. These advances are still
| largely confined to high-income countries. Replicating this
| success globally is the next frontier
| robwwilliams wrote:
| Practical speaking you are right. But the main ingredient in
| success is getting dosages and timing right, not ultra-
| expensive drugs.
| find wrote:
| 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!
| wombatpm wrote:
| 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
| CobaltFire wrote:
| 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.
| debrisapron wrote:
| 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!
| petesergeant wrote:
| > we can do actually worthwhile things like this together
|
| As long as there aren't dramatic cuts to science funding
| anonymous_9876 wrote:
| NIH is facing a 40% budget cut. Cancer research would
| dramatically slow down.
|
| 1. https://www.science.org/content/article/senators-press-
| nih-d...
|
| 2. https://www.fightcancer.org/releases/future-cancer-
| cures-jeo...
| mapt wrote:
| I think if we want research to survive we need to start
| funding it on a basis other than paycheck-to-paycheck. We
| need to acknowledge the adversarial nature of the current
| political situation.
|
| If you have a $50M study that takes 10 years, $50M leaves
| the budget on approval and goes into a foundation
| dedicated to that study.
|
| The alternative is this sort of atrocity - https://www.re
| ddit.com/r/labrats/comments/1kh21p5/discarding...
| cogman10 wrote:
| Ideally, we'd sever and isolate the NIH (and probably the
| CDC) from the government and make it operate a bit more
| like the federal reserve or USPS. We attempted to do that
| with the CFPB, but having an executive that can simply
| fire everyone running an agency really messes with the
| ability for such agencies to properly operate.
|
| Funding would be tricky. Nobody has pocketbooks big
| enough to send to the NIH other than the US government
| and we'd run the risk of it going years without money
| with hostile administrations. You might be able to self-
| fund if you included someone like the FDA in the mix and
| charged approval fees. But, ideally these organizations
| would be funded through general taxation as everyone
| benefits from their output. Funds shouldn't have to
| solely come from pharmaceuticals.
| pstuart wrote:
| Perhaps their funding could be self-generated if they
| were to patent their findings and license them in such a
| way to generate revenue where there's some juice to
| squeeze from the pharma sales.
| saalweachter wrote:
| The difficulty is that you still need a way to build
| accountability into the funding system.
|
| There _are_ valid reasons to pull a study 's funding
| early, politics aside.
| cogman10 wrote:
| Yeah, I really want people to understand this.
|
| I know HN doesn't want to get political in general, but
| this is an incredibly terrible thing that's happening that
| affects everyone.
|
| The cuts to the NIH based purely on the politics or
| perceived politics of the institutions doing the research
| will kill people. It very likely will be a death sentence
| for my wife with a cancer that has treatment options
| available but really needs additional research.
|
| Everyone that lives long enough will get cancer.
| Researching cancer and disease treatments is universally
| beneficial to the population.
| chrisweekly wrote:
| CONGRATS to you and your son. And Happy Father's Day! :)
| cpard wrote:
| 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
| CobaltFire wrote:
| Its fascinating to hear from someone who my son's enrollment
| would have affected. I'm hoping his data point can help tune
| treatment for more people in the future.
|
| And thank you for YOUR data point that helped my son have the
| option to not do those extra months.
| patates wrote:
| I can't even begin to think how hard that must have been for
| you and your son!
|
| I wish you a belated happy fathers day, and I wish you and your
| son the healthiest, happiest life.
| vdenis wrote:
| Hi, First time poster here, long time lurker, germline
| RUNX1-mutant myself. Father got AML, three decades of
| thrombocypenia for me, child is mutant as well, no event
| fortunately but under surveillance. Good news for your child!
| CobaltFire wrote:
| Fortunately only his cancer was RUNX1, not his whole genome.
| It was also trisomy-21. Essentially he had what his doc
| described as the "stereotypical" B-ALL for individuals with
| Down Syndrome, but he doesn't have it.
| searine wrote:
| Made possible by government funding of basic scientific research.
| This is what your tax dollars bought, and what they're currently
| trying to destroy.
| RRWagner wrote:
| +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...
| rglover wrote:
| 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.
| CobaltFire wrote:
| 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.
| rglover wrote:
| > My son, not I, had ALL and is in remission.
|
| That's excellent to hear. Send him a high five for me.
|
| > 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.
|
| I'm sorry to hear that. My own family was definitely affected
| by all of it. If it will help, I'd be happy to talk whenever
| you'd like (email [1], phone--whatever works)--it's a hell of
| a lot to process/cope with especially on top of the other
| stuff you're dealing with--don't hesitate.
|
| [1] me@ryanglover.net
| throwaway2037 wrote:
| > it changes your entire personality
|
| I believe it. There are few other posts here that mention major
| mental changes. If not too personal, can you share a story to
| explain?
| rglover wrote:
| Sure.
|
| I spent a lot of time in the hospital receiving treatment.
| Sometimes it was a few days, sometimes it was a month. My
| parents were working and so while I'd see them in the morning
| and evenings, most days I was on my own w/ the occasional
| nurse or doctor pop in. That led me to have a very
| independent (sometimes standoffishly so--mainly because I got
| tired of being poked at by doctors and nurses as a kid)
| personality and had to learn to amuse myself and be
| resourceful.
|
| In addition to that, while I would attend school fairly
| regularly, I was "the sick kid" who was gone for weeks or a
| month at a time, so I didn't really form a lot of early bonds
| with the kids in my class. As an adult lone wolf type, I tend
| to smirk at that because that's essentially what I had to
| learn to be in those early years.
|
| Another thing that I find amusing is that I would watch a lot
| of movies while I was in the hospital. I remember they would
| always play the same few movies:
|
| - Willy Wonka (Gene Wilder version)
|
| - Ghostbusters
|
| - Gremlins
|
| What's funny is that a good chunk of my personality is a mix
| of the characters in these movies. I like to have fun with
| people and keep them on their toes like Wonka, I like to
| invent/build/take risk on my own ideas like the Ghostbusters
| (my wife also said Pete Venkman reminds her of me), and I've
| always been a bit of a trouble maker/chaos monkey like a
| gremlin.
|
| As an adult, I've noticed that I have an in-built preference
| toward self-sufficiency and tend to work/be alone most of the
| time and I'm hyper-sensitive to people "poking" at me (or
| someone else--I love going after a bully). I'd also say that
| I developed a high EQ and awareness of and for others (like
| an ability to quickly read people and know what they're
| feeling--my grandpa refers to it as "acute awareness").
|
| Several years back the "why" of all this started to click
| when I read Maria Montessori's book--The Absorbent Mind
| [1]--on the first few years of childhood development (~0-6
| years). She explains that kids are like sponges and their
| personality forms relative to what they experience in those
| first few years. When I think about the mix of experiences
| during those days, I can't help but laugh--that theory is
| dead on.
|
| I also read Thomas Sowell's [2] late-talking children because
| I remembered being taken to a speech therapist as a kid
| because I refused to talk. I had no problem talking, I just
| didn't want to. Even today, I have quiet phases where I just
| kind of drift off into my own little world and don't really
| talk much.
|
| Would I say that having Leukemia specifically gave me all of
| these traits? No, but I would say that the combination of
| circumstances in relation to my treatment definitely did.
|
| [1] https://www.amazon.com/Absorbent-Mind-Maria-
| Montessori/dp/08...
|
| [2] https://www.amazon.com/Late-Talking-Children-Thomas-
| Sowell/d...
| Vinnl wrote:
| 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.
| fakedang wrote:
| 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.
| l-survivor wrote:
| 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.)
| cmclaughlin wrote:
| This comment took me on a walk down memory lane...
|
| The shortage of asparaginase (brand name Erwinaze) was very
| stressful during my daughter's recovery! This was in 2021.
|
| She had allergic reactions to two other medicines, and Erwinaze
| was identified as an alternative. We ended up getting a batch
| of Erwinaze, but she was allergic to that too. She ended up
| getting it on a slow drip under full hospitalization instead of
| a relatively quick visit at the infusion center.
|
| If anyone else is in a similar situation, this patient advocate
| might be able to help:
|
| https://www.angelsforchange.org/
| robwwilliams wrote:
| 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.
| cue_the_strings wrote:
| 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.
| l-survivor wrote:
| 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.
| throwaway2037 wrote:
| > notable impacts to short term memory and deep concentration
|
| So these are permanent? Is it caused by the cancer or the
| drugs? Is there any peer-reviewed research on the matter?
|
| To be clear, chronic absenteeism is defined by the US Dept of
| Education as: "students missing 10% or more of school". Eh,
| that is one day every two weeks. That's not so bad. Most kids
| can still get a pretty good education at that level.
| cmclaughlin wrote:
| Hello,
|
| Here's more info on the side effects to memory.
|
| * https://pmc.ncbi.nlm.nih.gov/articles/PMC6089371/ *
| https://curesearch.org/Learning-Problems-During-or-After-
| Tre...
|
| I think this sums it up (from the NIH study):
|
| "methotrexate exposure has also been associated with
| persistent cognitive deficits among survivors, including
| impairments of memory, attention, and executive functions"
|
| My daughter recovered from Leukemia (ALL). She's healthy now,
| but it was a nightmare. She was in the "high risk" category
| until the doctors realized the chemo triggered a rare kidney
| disorder. Once that was treated, the chemo started to work.
|
| I've observed some issues with her memory and cognition, but
| I'm happy she's alive and optimistic that she'll learn to
| work around the challenges.
| major505 wrote:
| 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/
| srameshc wrote:
| > She made a promise to the patron saint of her church, Saint
| Judas, to help people in the same situation as her.
|
| And there is hospital !! This a wonderful story, thanks for
| sharing.
| major505 wrote:
| yeah, thres a cool story. A wealth lady gave her a diamond
| neckless that was audictioned. The person who won the
| neckless in the auction gave it back to my aunt, so she could
| auction it again. The same neckless was auctioned like 3, 4
| times because of that. A lot of generous people helped her
| pave the way, but it was her wll and determination that
| focused this efforts.
|
| Personally I dont have a good relationship with her, because
| of things she done in the family, including to my own
| parents, but damn if this don't goes to show that even peolpe
| we may think are bad can can make the world a better place.
| She does have a lot of good karma to expend the rest of her
| life.
| lysergic wrote:
| My second closest childhood friend died from leukemia about ~18
| years ago, when we were about ~10 years old. I still think about
| him sometimes and even now as I'm writing this I feel some
| sadness.
|
| According to my mother his mother was head nurse of pediatrics
| and had not noticed my friend becoming sick, and he became very
| sick. He was given kemo therapy and subsequent bone marrow
| transplant, but he didn't get better. Apparently the kemo made
| him blind and more afraid until his death.
|
| And his death took a toll on his family, and especially his twin
| sister, which their mother lashed out at and was told by their
| mother that "she should have been the one dead."
|
| Childhood cancer ruins so many people and relationships, and I
| deeply hate this thing that almost seem intrinsic to the human
| condition.
| sgt101 wrote:
| Is there any plausible connection between these statistics and
| the ending of atmospheric bomb testing? Also the various
| catastrophic releases of plutonium into the atmosphere from
| satellite reentry?
|
| Could the gradual reduction be attributed to the decay of
| radioactive isotopes in the environment?
| mkesper wrote:
| No. This only looks at children that got leukemia.
| yoko888 wrote:
| Sometimes I think the most amazing thing is not that we have
| found a cure, but that we have learned how to keep looking for
| better ways. The reason why childhood leukemia went from being
| fatal to being treatable was not due to a major breakthrough, but
| to doctors and researchers constantly testing, adjusting, and
| learning over decades. The real miracle may be that medicine
| itself has learned how to keep improving. It may not seem special
| every day, but accumulated over a long period of time, it may
| save more lives. I think if other diseases can also accumulate
| and continue to advance in this way, perhaps similar
| transformations will occur.
| Thomvis wrote:
| My daughter died of AML earlier this year. AML is unfortunately
| much harder to treat than ALL. She was treated for almost three
| years (it came back twice). We "lived" with her in the hospital
| for around 1,5 years over that three year period.
|
| Many of the chemo medications she got have been a stable of AML
| treatment for decades. From what I understood from our doctors,
| the improvement in survival rate for AML has come from supportive
| care, i.e. the ability to keep the patient alive during
| treatment. Treatment of bacterial and fungal infections has
| gotten a lot better.
|
| AML is a very heterogeneous disease. The treatment depends a lot
| on the specific mutations the patient has. Research can only
| focus on so many target mutations at a time. We did see the
| progress over the three years we were there. I have high hopes
| that children with the same mutation as my daughter will in the
| near future have better chances, specifically thanks to menin
| inhibitors.
| cloin wrote:
| My 8 year old completes treatment for B-ALL in a couple months.
| It has been a crazy 2.5 years but he's almost through it. It's so
| surprising how it all feels so routine for the care team and how
| prepared they are during the times that something could go wrong.
| When it does go wrong, you really appreciate the swarm when the
| entire clinic circles up to lend a hand.
| CobaltFire wrote:
| Congratulations to your child!
|
| There is a lot I want to say as a fellow parent in that
| situation, but it's hard to articulate.
|
| I hope it's easier for you to kove forward (mentally) than it
| has been for us.
| AdamN wrote:
| Just a plug for the Max Foundation out of Seattle:
| https://themaxfoundation.org/
|
| Even where these problems are more solved than they were - the
| access is not broad enough for everyone to benefit. The Max
| Foundation works towards that access.
| ceefry wrote:
| Recently a movie was released related to childhood cancer (not
| specifically leukemia) called "Audrey's Children" starring
| Natalie Dormer (Hunger Games, Game of Thrones). I got to see a
| screening of it bc of my daughter's involvement with Camp Ronald
| McDonald, which happened as a result of her brother's (my son)
| ALL treatment. He is a survivor - it has now been 15 years since
| his last dose of chemotherapy.
|
| The movie was much better than expected and it's worth a watch
| imo. Definitely relevant to the advances that saved my boy's
| life, and a glimpse of a few of the incredible people who
| contributed to those advances.
| thinkcontext wrote:
| Wanted to give a plug for joining your country's marrow donor
| registry. As mentioned in the article one of the last ditch
| treatment options is a marrow stem cell transplant from a donor.
| Finding a compatible donor can be difficult. On average the odds
| of finding a match in the general population is 1:10,000, and it
| can be much worse for some sub-populations. National registries
| have greatly increased the odds of finding a matching donor but
| there are people that die while looking for one.
|
| Getting in the registry is easy in the US. You fill out a form on
| NMDP.org's website, they mail you a free kit, you swab your cheek
| and mail it back. Something like 1:800 people in the registry
| ever get contacted about being a donor, so its a pretty rare
| event. As far as being a donor, I believe around 90% of donations
| can be done by filtering the blood of the donor, the rest are
| done surgically.
|
| I was a donor a few years ago after matching through the
| registry. It was a pretty rewarding experience. Like many people
| I've had relatives and friends impacted in various ways by
| cancer. Usually, you get a very powerless feeling as you wait for
| the process to play out, being a donor felt good because there
| was something that I could do. Happy to answer questions about
| the process.
|
| https://www.nmdp.org/get-involved/join-the-registry
| skissane wrote:
| My niece Summer (on my wife's side) died from complications of
| leukaemia a couple of years ago, aged 13. They say the survival
| rate is now >=90%, but someone has to be the ~10% who don't and
| unfortunately she was one of them. It wasn't directly from
| leukaemia, she had a blood clot (apparently a side effect of
| chemotherapy) and that caused a fatal pulmonary embolism.
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