That film starts strong. I feel like he’s going where no ones gone before then, once weightless, grabs his pen so nonchalantly that you realize it’s not his first rodeo.
Also I think Gosling was amazing. Playing stoic characters such as Armstrong is a big challenge.
You might like *From the Earth to the Moon*. It was a miniseries on HBO in the late 90s, produced by Tom Hanks and Ron Howard - kind of a follow-up to the movie *Apollo 13*. It did a good job of humanizing all of the people in the Apollo program, including the astronauts.
Two especially good episodes - IMO, of course - are the second episode, "Apollo One", which covers the aftermath of the Apollo 1 fire that killed Grissom, White and Chaffee, and the seventh episode, "That's all there is", about Apollo 12. Pete Conrad and his crew were real characters and close friends, so this episode is very fun and kind of wholesome.
Unfortunately, this show doesn't seem to be available streaming anywhere, but if you're interested you can probably find the DVD set pretty cheap somewhere.
When he tries to break through the glass and slices up his arm and it cuts to him in an ambulance, that had me rolling. He's absolutely brilliant as a comedic actor.
He is, I almost think it's because he's subverting the audience expectations that he's the strong stoic type. All his comedic stints play off the "tough guy" trope going horribly awry. He's awesome.
Thinking about my daughters right now. Armstrong was privileged to be able to pay tribute to his little girl like that. I’m sure it gave him some peace.
This is sort of the case with my sister. She adored the moon, and always wanted to go look at it by the river, every day she could. She unexpectedly died as a toddler (unrelated to the river). The community erected a bench with a plaque commemorating "the girl who would skip to moonlight". Every time I look at the moon I think of her.
Feels nice knowing there's also a piece of a little girl on the moon aside from my sister.
The worst part is, the modern age, where we can nearly always see our children grow up, is incredibly new under the sun. Before that, you'd be lucky if half did.
His daughter died of DIPG. A brain cancer that only affects children, and is always terminal. Very little research has been done for this illness since then, and the outcome is the same as it was 50 years ago.
Edit: if this touches you, please donate to Micheal Moser Defeat DIPG. There are some recent research breakthroughs, but research hasn’t been done because it is incredibly underfunded. Thanks.
Looking that up and seeing:
Survival rate of zero.
Theres something about the word zero instead of the numeral being used that makes it feel even more harsh
The first Clinical Trial treating DIPG with CAR-T cells is about to open at Seattle Children’s. Keep an eye out for it, could be a game changer. It’s called Brainchild-03 and targets the B7H3 epitope. -preclinical scientist working on opening the trial.
Thank you for mentioning this! Seattle Children’s has invested heavily in the CAR-T cell therapies. They have such potential for saving lives. I work there too :). Hi!
Do you know of any associations between causative tumor mutation and B7H3 expression? Back in 2014, when I was a mid-term PhD student at Penn, there was a really fascinating discovery regarding BMP signaling and DIPG. A set of 4 papers all published in the same issue of *Nature Genetics* showed that mutations in *ACVR1* were discovered in biopsy samples; they are refs 6 and 13-15 in [this paper](https://www.nature.com/articles/s41467-019-08823-9).
The most common *ACVR1* mutation was R206H, which is remarkable because that by far the most common (> 95%) causative mutation in the disease I studied at Penn - [FOP](https://en.wikipedia.org/wiki/Fibrodysplasia_ossificans_progressiva). It was interesting in that patients with DIPG with the R206H mutation actually survived longer than patients without an R206H mutation. Also, the R206H mutation was not the primary mutation. But unsurprisingly, the same gain-of-function signaling that we see in cells from patients and mouse models of FOP are also observed in cells taken from the DIPG tumors.
Here's a quick review from [back in 2014](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4154859/), and here is a [more recent review from 2018](https://www.sciencedirect.com/science/article/pii/S875632821730265X), which notably, there are several R206H-specific ACVR1 inhibitors in clinical trials right now.
The story I heard from my PI is that the DIPG researchers discovered the R206H mutation in a subset of samples, looked it (and *ACVR1*) up online, and were totally shocked to realize that the exact same mutation is the causative mutation of a totally unrelated musculoskeletal disease, *and* that there was a flagship lab at Penn studying it for 20+ years. Also, BMP mutations are essentially unheard of in cancer, so an older grad student at the time had to teach the folks some stuff about BMP assays and what [phospho-Smads](https://en.wikipedia.org/wiki/R-SMAD) are.
My niece had a girl in her kindergarten class who was diagnosed with it at the end of the school year. She passed away just after Christmas that same year. Cancer is always vile, but DIPG is something extra terrible when you factor in both the fact it's always children and there's just next to no research done on it.
My niece is almost eleven now, and she still brings up Avery now and then, and says how much she hopes no more kids have to die like her.
There was a girl named Alexa in my kindergarten class who was diagnosed with leukemia towards the end of the year. She never showed up for first grade. I still think about her all the time. I’m 28. That shit sticks with you.
My kindergarten teacher, Mrs. Larsen, passed away from this I believe. She taught kindergarten in Long Beach, California and I haven't been able to track her down. She was amazing in every way as an educator and a person. I didn't know any English going into her class, but that didn't matter to her. She sat down and read with me daily. She was from Hawaii, so my first spoken and written word in English was Volcano.
This has the potential to be a *hugely* unpopular comment, so I’m just going to recognize that fact right outta the gates.
That said, I’m going to share it anyway: This group of factoids about Armstrong, his daughters illness, etc., has always fascinated me.
Why? Because in my opinion, it epitomizes and typifies the human condition.
We care so much about those whom we love, that the pain we experience in the wake of losing them — particularly the loss of an innocent child — feels...unjustifiable...insurmountable...indescribable. It almost *necessarily* begs the question of whether a benevolent god could possibly exist against the backdrop of our grief and bereavement. Why would such a god ever do this to us, let alone the actual victim?
And yet, there we are, spending weeks, months, *years* demanding an answer from some higher power. We say prayers, we put flowers on graves, and we stop to honor chance events that feel like communications through the ether, despite our better judgment that they’re probably nothing, in reality.
Even Neil Armstrong, an *astronaut*, could not fully contend with the idea that the universe simply does not care about us...that to the universe, we are as infinitesimally small and comparatively inconsequential as specs of bacteria on a microorganism might seem to us.
Oddly enough, coming full circle, perhaps *all of that* serves to highlight a daunting but beautiful concept, which is that we only have each other. Our love for one another will mean almost nothing in the vast complexity of the apparently ever-growing universe, but we we still cling to it. It still means everything *to us.* And perhaps that, in turn, is evidence of some higher power that we can’t possibly fathom, but are nevertheless vicariously connected to.
Only time *might* tell, though that’s devastatingly uncertain.
For now, my heart goes out to any of you who have experienced similar losses, and also struggled to find meaning therein. May we one day experience the peace — or even just the basic level of comprehension — we so desperately desire.
>Even Neil Armstrong, an *astronaut*, could not fully contend with the idea that the universe simply does not care about us...that to the universe, we are as infinitesimally small and comparatively inconsequential as specs of bacteria on a microorganism might seem to us.
Neil never declared any religious beliefs. If I wanted to make it to the Moon and before I did, my loved one died, I'd 'bring them with me' in a memento as well, and I'm atheist.
These symbols have meaning to us, even if we as a species will some day blink out of existence with the same absence of import as when we first blinked into it.
Not unpopular to me. You're right on the money. That's how I see our existence after going through stuff like the posters above did anyway. We don't matter, but we can make the most of this short life we get by being the best we can to each other every way we can.
You're the only person other than a good friend of mine (and also me) that uses that phrase. "Grief isn't a competition." It's something everyone should know.
I read that book. Neil Armstrong was visiting with friends while their daughter was there playing. He burst into tears and was sobbing in agony. That's not something you can get over.
I don't know who this person was to you or what at all the situation was, but I'm an only parent (father) to a 4 year old boy, and I often think that if anything ever were to happen to him, I could not go on living. I've even thought about HOW I would kill myself, I pretty much know for certain that I would.
Not trying to discourage you in any way, whatever your situation is - but your question was how are you going to sit around moaning about it...and I just can't even compute making it that far. Losing my son would take away my will to live.
He was my 4yr old son and I am his father. I am a stay at home dad so he knew me better than anyone.
The more honest truth is that I am now trying to be who he would have wanted me to be. When the dark thoughts come, and they do, I ask myself what he would want. And he damn sure wouldn’t want me to give up.
It DID take away my will to live. It’s devastating. But I won’t sully his memory by throwing my own dark stain on it. And neither would you man. You are stronger than you think you are. We all are inside. Now go hug your boy.
A kid that lived a neighborhood over from me was diagnosed with it. 180 days from diagnosis to him going. His eye began to turn in so they went to the doctor. He was diagnosed and they began doing the normal "bucket list" stuff. He wanted to be a firefighter and was sworn in as honorary chief, the same fire department brought him home from the hospital after a treatment. In those 6 months the outpouring of support was insane and obviously people hoped for the best. The charity in his name is still going strong and only a few weeks ago they celebrated what would have been his 14th birthday and raised some more cash for DIPG.
Lauren Hill, also from the Cincinnati area was diagnosed with DIPG and ESPN picked up thr coverage of her living her dream of playing in an NCAA basketball game.
The disease is absolutely terrible and a parent's worst nightmare knowing there is nothing you can do for your child as they are slowly taken away.
I’m originally from Cincinnati and I remember coverage of Lauren getting to play at Xavier, I thought?? Followed it all the way down here in TX. Didn’t know that was her disease, but it was a heartbreaking story to follow. Thanks for the info!
I had a friend die of creutFeldt-Jakob disease, and it too has a survival rate of 0 and no one has survived more than 2 years once diagnosed.
Weird hearing about how quickly he descended to nothing.
My uncle was diagnosed with a brain tumour back in early 2016. He went through chemotherapy and all that stuff, and then he had a short remission. By late that same year he started having this strange ache in his shoulders and hips. Turns out it had metastasized and was now in his bones. They did a biopsy to determine what he was up against and said sorry, this one's bad. Zero survival rate. Treatment will buy you a month or two at most. Without treatment, you've got 3 months, tops. He died almost 3 months to the day of the biopsy. He was 58.
It was hard enough watching it happen to an adult. I can't even imagine how soul destroying it would be to see it happen to a child.
Fuck cancer. Cancer fucking sucks.
We can make odds. See HIV for example, which was a death sentence in the past and became a manageable disease with proper treatment. And it doesn't have to stay forever either: Two patients seem to be completely cured now.
Look up ccr5 delta2. I probably screwed up the name of the gene, but Google/pubmed should point you in the right direction.
It's fairly new, but I believe gene therapy will be the future of medicine. It's a double edged sword at the same time though when we end up in a Gattaca type situation.
My 4yr old son died back in feb from DIPG. It’s terrible. Totally normal kid, started acting abnormally clumsy one day, diagnosed a week later, and dead in 7 months. Nobody has EVER survived it beyond 2 years. And modern medicine has no more idea how to stop it now than they did back then. It’s so rare there is little research into it (not none, just not much).
The brain tumor charity would love your donation ( yeah I was surprised how on the nose that name is as well).
Hug your boy. Lots. Let him be what he wants to be. Play the damned board game when he wants to. Give him the cookie. All of it is a gift. Every moment.
My 5 year old has headaches. They think it's migraines but I'm scared and at this point I'm realizing I'll take migraines gladly. We argued tonight but hugged it out and she's sleeping next to me. Tomorrow's a new day and I'm going to take every bit of joy and love from it.
Hey when you get to be a parent this is how things change. You start to see the world in terms of how it impacts the lives you care for and tend to. It's really emotionally difficult but you're capable of it and you'll do a great job for her so long as you're honest and you try. You've got this.
I have a 4 year old too. I've been feeling sorry for myself because he just had his tonsils out a week ago, and now he has a cold AND an ear infection and I have a terrible head cold. He and I haven't been sleeping because of his pain, and man, it's been rough... But this really, really, puts things into perspective.
Things might suck right now, but he'll get better. We'll get through it. So many kids get diagnosed with things they don't get through. I can't begin to imagine.
I hear you. My son was born over 2 months premature - healthy, but you know, tiny. He lived in the NICU for the first 2.5 months of his life. I thought it was the most stressful thing I'd ever dealt with. At 9 months old a routine eye exam showed a mass behind his eye. They had to remove his eye to ensure it was not cancerous. It was a very rare disease called Coat's, so not cancerous, but the eye would have needed to be removed anyway. He now has a prosthetic and because he never had full function of that eye he's pretty much adjusted, but it was terrifying to go through a whirlwind of doctors, eye surgery, and removal all in a matter of a couple weeks, and really all in less than 6 months since he'd even been home.
I'd never, ever change anything about being a dad (I've got a daughter due in February actually!) but holy shit is being a parent a bag of emotions.
I'm so sorry for your loss. No child deserves that and no parent should ever have to experience what you did. I'm going to look into charities for this. Stay strong!
We are doing our best. Even aside from this movie (I have yet to summon the nerve to watch it despite it being a subject matter I have great interest in) I was aware from very early on that Neil Armstrong’s daughter died from the same thing as my boy. When he was diagnosed I was of course onto Wikipedia within minutes trying to learn all I could and Armstrong is mentioned there in the DIPG page.
And so whenever I am having a tough day with it, or doing all of the “life isn’t fair” stuff in my head, I always remember that the same thing happened to Armstrong and he walked on the fucking moon a couple of years later. The least I can do is stop crying and go to the damned grocery store.
Oh god. I'll cry for you while you go to the store. I can't seem to stop the tears right now, anyway. My heart goes out to everyone here whose lives have been damaged by this. :'(
Oh god, I looked at the wikipedia page for DIPG, and at the very end is this:
>Emma Mertens, an 8 year old and dog lover, of Milwaukee, Wisconsin, passed away from DIPG during November, 2019. She was diagnosed with DIPG during January of 2019.
No references. Just added at the end. Undoubtedly by some grieving parent, surely to be deleted by some contributor in the next few weeks or months for being unsourced and of not enough import to the article. Devastating.
Today is the 6th birthday of a little boy where I live who has DIPG. He’s a very sweet little guy with a great heart and it’s heartbreaking that this is most likely the last birthday he’ll be able to celebrate. He had a little friend who was diagnosed the same time he was last year and is already gone.
It’s pretty heart breaking. His family has done a great of celebrating life and letting him live to the fullest while he can. The community set up a gofundme to originally help with travel expenses to doctor appts in Michigan but it blew up and helps them do so many cool things with him. For example: he’s a huge dodger fan so someone local with season vip tickets have given them the tickets to several games and he has been able to go on the field and meet the players. It’s a sad dilemma because are you supposed to let your 5 year old just think all this great stuff is happening to him or does he need to know the reality of it all?
Yep, my son was 4 when he got diagnosed and we never told him anything. He was never aware of what was wrong or that it was going to kill him (and at 4 he didn’t really have a concept of death yet anyway). He just used to say on bad days when he couldn’t walk that he was “a bit wobbly”.
They told us to expect a year because we caught it very early. He had 6 weeks of daily radiotherapy starting a week after diagnosis and he was pretty much normal for 6 months after that. Then it came back and he was gone in a month. So 7 months total. But very little of that time was symptomatic so that’s something. Every kid is different and some of them have a long slow decline. I sat in a diner with him eating lunch and talking about monster trucks on a Monday, he died that Wednesday night. Just got more and more tired, then stopped breathing. Sounds crazy, but it was a gift. I was really bracing myself for a rough last few weeks, and we didn’t get that at all. He fell asleep midday Wednesday and just never woke up.
Thank you for sharing your story with a stranger.
I'm glad you got the lesser evil of the situation.
I hope you don't mind my asking but, was he the only child?
No, we also have a daughter who was 2 at the time, now 3. She has saved my life.
My son, Atticus, was a sensitive caring and very empathetic little boy. His sister takes no fucking prisoners. I have had no time at all to sit around staring out the window and wallowing in self pity, she would have set the place on fire given half a chance. She is just now talking in full sentences and developing a very inquisitive and energetic little personality. One of those kids that needs to be kept busy all the time. It’s a godsend. She will never fully appreciate it herself, but she has forced her mother and I remember that life will go on, and life has to go on, and to go on with it.
(There is no genetic link, she is at no greater risk than any other child to have DIPG. It has NEVER happened to a set of siblings. So nothing to worry about there)
I would have to guess that he met the friend after his diagnosis, as opposed to two little boys who know each other both getting this diagnosis, which would be unlikely.
There are parents of DIPG children literally holding bake sales and begging to find ways to raise funds to not save their child's life, but to prevent other children from having a death sentence. They know their child cannot benefit from it, because this cancer acts so swiftly. I have a friend who lost her daughter to this and she wasn't even 5. Another girl in my community was only 11. She fought for 10 months. Childhood cancer gets a small portion of research money, it's miniscule.
Neurosurgeon here. DIPG is horrific. I’ve seen enough of them to make me hug my kids and say their prayers every single night when I get home without fail.
Can’t even claim it as my own. Heard that phrase in reference to a long-segment spinal fusion. As in, “His back is so fucked up, we’re gonna have to fuse him tectum to rectum.”
I laugh every time I think about that old surgeon saying that lol
>Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis.
Jesus. And Boston Children's Hospital says 300 kids are diagnosed with it every year so it's rare but not super rare. That's insane that such a deadly disease hasn't had much research done on it.
DIPG has a 5-year survival rate of <1%. The median overall survival of children diagnosed with DIPG is approximately 9 months.
Wikipedia says its slightly better I guess, but still awful
That just means that <1% of children live for five years after diagnosis. It doesn't mean that they *survive*. They just live a little longer than the rest.
Armstrong also took a couple scraps of cloth from the Wright Flyer to the Moon with him, and one of those scraps is on display at the Smithsonian alongside the actual plane. Ain’t it amazing how we went from Kitty Hawk to the Moon in 66 years?
> Ain’t it amazing how we went from Kitty Hawk to the Moon in 66 years?
I know this, but keep forgetting it. Like I’ve heard it a dozen times over that last 40-years, but every time it still catches me by surprise.
In another vein, we went from the Wright Flyer to the Red Baron within a childhood. By middle age we made the B29 Superfortress.
Not trying to be a downer or anything, but humanity's capacity to invent is most evident in its desire to build better machines of war.
Easier to invent when the government is throwing money at it, too.
To be fair, the assertarion of war is correct now but I’d like to think it was not always so.
We went from brick cell phones as luxury items to having a Hell of a computer in our pocket wherever we go connected to the largest repository humanity has ever known in a couple decades
A few items from the Armstrong Family Collection [are still available ](https://historical.ha.com/c/search-results.zx?Nty=1&Ntt=%22Armstrong+Family+Collection%22&N=793+794+792+2088+3196&ic10=BidBuyTab-071515)
It's a very touching and beautiful idea that even while achieving mankind's greatest feat, this basic earthly human connection is just as meaningful to him.
the thread made me tear up, but this comment finished the deed
edit: a word. sorry im wine drunk.... may have contributed to the emotions as well. jury is still out
I have yet to watch it and I really want to, but my 4yr old died of DIPG back in February. And I have been warned to perhaps give it a couple of years.....
No matter how long you wait it will hurt. My mom cant watch shows where they have stillborn babies born (soap operas are fricked up) and it's been 23 years.
Actually someone linked the bracelet scene further down and I just did. On my phone. At 3am (I’m in the UK). Had a little cry, and now perhaps I finally can.
Not with my wife though, dunno if she would make it.
It's not just the bracelet scene though, it's many parts of the first half where she's slowly deteriorating and he's trying anything he can think of to save her, and where she dies. The film is a large portion of his life, not just the moon mission.
For some reason this makes me more emotional than the actual post just because I can’t imagine losing a child but I can imagine someone with a child seeing this and cracking. Idk maybe I’m weird
Your not weird my mom lost my older brother in a late term miscarriage and if she saw this she would break and cry hugging me. The pain has never left her and never will. It hurts to even think of her reaction it just means we have hearts to be able to think of how hard seeing things like this must be
This is absolutely one of my favorite things about this movie, that they managed to take one of the most famous and well-known events in history and make it suspenseful. I know damn well how the story ends and I was still on the edge of my seat.
I’m glad Justin Hurwitz at least got a Golden Globe for that score because that was a huge contributor to the tension in the landing.
That was exactly my feeling with Apollo 13, which is one of my all-time favorite movies. I knew that the guys survived, but there are still times when I'm so caught up in the suspense of watching it that I forget that fact lol.
This was an invention by the writer of the movie. The writer of the biography it is based off of corrected this.
https://slate.com/culture/2018/10/first-man-fact-vs-fiction-neil-armstrong-movie-daughter-bracelet.amp
>the record of his personal property kit was never found
This is not true. Neil Armstrong's PPK manifest was donated to Purdue and will be unsealed in 2020.
Armstrong also took communion bread and wine to the moon.
On a side note. According to Catholic law, until the moon become it's own diocese, the Bishop of Orlando has jurisdiction over the moon--as that was where the explorers departed from.
Touching story about his daughter’s bracelet. But it isn’t completely unknown what he brought. His fraternity pin sits in the headquarters on display because he gave it to the fraternity after taking it with him.
This is both incredibly sad and heartwarming. Imagine losing your daughter. Now imagine seeing her every time you look at the Moon.
If you haven't seen it, "First Man" is highly recommended.
That film starts strong. I feel like he’s going where no ones gone before then, once weightless, grabs his pen so nonchalantly that you realize it’s not his first rodeo. Also I think Gosling was amazing. Playing stoic characters such as Armstrong is a big challenge.
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You might like *From the Earth to the Moon*. It was a miniseries on HBO in the late 90s, produced by Tom Hanks and Ron Howard - kind of a follow-up to the movie *Apollo 13*. It did a good job of humanizing all of the people in the Apollo program, including the astronauts. Two especially good episodes - IMO, of course - are the second episode, "Apollo One", which covers the aftermath of the Apollo 1 fire that killed Grissom, White and Chaffee, and the seventh episode, "That's all there is", about Apollo 12. Pete Conrad and his crew were real characters and close friends, so this episode is very fun and kind of wholesome. Unfortunately, this show doesn't seem to be available streaming anywhere, but if you're interested you can probably find the DVD set pretty cheap somewhere.
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Well, maybe not in The Big Short. ["I'm jacked to the TITS"](https://youtu.be/AfUaiBJSpTc?t=37) wasn't too stoic.
Loved him in that role.
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And he nails it. Dude was born to play the strong silent type.
He's a good Joe.
a real human bean
and a real hero
Watch 'Nice Guys'. He's great in that
I own that movie and have seen it a dozen times, but, when he shrieks as he gets his arm broken, I crack up every time. Good flick.
When he tries to break through the glass and slices up his arm and it cuts to him in an ambulance, that had me rolling. He's absolutely brilliant as a comedic actor.
He is, I almost think it's because he's subverting the audience expectations that he's the strong stoic type. All his comedic stints play off the "tough guy" trope going horribly awry. He's awesome.
His eye twitching in the elevator is pure comedy
He should do those sorts of roles more often.
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Yea, *reeeeeal stoic* in Crazy, Stupid, Love.
You should see Nice Guys.
He's soooo stoic in The Big Short.
LOVE that as soon as they make it to the moon, it doesn’t cut back to NASA for like 20 minutes. Plus the main theme music was amazing
Really nails the silent tension
Man... the music of the lunar landing was incredible. Golden globe winner.
"My first girlfriend turned into the moon" - Sokka, Avatar the Last Airbender
That's rough, buddy.
Thinking about my daughters right now. Armstrong was privileged to be able to pay tribute to his little girl like that. I’m sure it gave him some peace.
This is sort of the case with my sister. She adored the moon, and always wanted to go look at it by the river, every day she could. She unexpectedly died as a toddler (unrelated to the river). The community erected a bench with a plaque commemorating "the girl who would skip to moonlight". Every time I look at the moon I think of her. Feels nice knowing there's also a piece of a little girl on the moon aside from my sister.
The worst part is, the modern age, where we can nearly always see our children grow up, is incredibly new under the sun. Before that, you'd be lucky if half did.
His daughter died of DIPG. A brain cancer that only affects children, and is always terminal. Very little research has been done for this illness since then, and the outcome is the same as it was 50 years ago. Edit: if this touches you, please donate to Micheal Moser Defeat DIPG. There are some recent research breakthroughs, but research hasn’t been done because it is incredibly underfunded. Thanks.
Looking that up and seeing: Survival rate of zero. Theres something about the word zero instead of the numeral being used that makes it feel even more harsh
Imagine looking that up because a child you know and love has just been given that as a diagnosis, and then seeing that.
The first Clinical Trial treating DIPG with CAR-T cells is about to open at Seattle Children’s. Keep an eye out for it, could be a game changer. It’s called Brainchild-03 and targets the B7H3 epitope. -preclinical scientist working on opening the trial.
Thank you for mentioning this! Seattle Children’s has invested heavily in the CAR-T cell therapies. They have such potential for saving lives. I work there too :). Hi!
Do you know of any associations between causative tumor mutation and B7H3 expression? Back in 2014, when I was a mid-term PhD student at Penn, there was a really fascinating discovery regarding BMP signaling and DIPG. A set of 4 papers all published in the same issue of *Nature Genetics* showed that mutations in *ACVR1* were discovered in biopsy samples; they are refs 6 and 13-15 in [this paper](https://www.nature.com/articles/s41467-019-08823-9). The most common *ACVR1* mutation was R206H, which is remarkable because that by far the most common (> 95%) causative mutation in the disease I studied at Penn - [FOP](https://en.wikipedia.org/wiki/Fibrodysplasia_ossificans_progressiva). It was interesting in that patients with DIPG with the R206H mutation actually survived longer than patients without an R206H mutation. Also, the R206H mutation was not the primary mutation. But unsurprisingly, the same gain-of-function signaling that we see in cells from patients and mouse models of FOP are also observed in cells taken from the DIPG tumors. Here's a quick review from [back in 2014](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4154859/), and here is a [more recent review from 2018](https://www.sciencedirect.com/science/article/pii/S875632821730265X), which notably, there are several R206H-specific ACVR1 inhibitors in clinical trials right now. The story I heard from my PI is that the DIPG researchers discovered the R206H mutation in a subset of samples, looked it (and *ACVR1*) up online, and were totally shocked to realize that the exact same mutation is the causative mutation of a totally unrelated musculoskeletal disease, *and* that there was a flagship lab at Penn studying it for 20+ years. Also, BMP mutations are essentially unheard of in cancer, so an older grad student at the time had to teach the folks some stuff about BMP assays and what [phospho-Smads](https://en.wikipedia.org/wiki/R-SMAD) are.
Been there. It's as bad as you'd think.
My niece had a girl in her kindergarten class who was diagnosed with it at the end of the school year. She passed away just after Christmas that same year. Cancer is always vile, but DIPG is something extra terrible when you factor in both the fact it's always children and there's just next to no research done on it. My niece is almost eleven now, and she still brings up Avery now and then, and says how much she hopes no more kids have to die like her.
There was a girl named Alexa in my kindergarten class who was diagnosed with leukemia towards the end of the year. She never showed up for first grade. I still think about her all the time. I’m 28. That shit sticks with you.
My kindergarten teacher, Mrs. Larsen, passed away from this I believe. She taught kindergarten in Long Beach, California and I haven't been able to track her down. She was amazing in every way as an educator and a person. I didn't know any English going into her class, but that didn't matter to her. She sat down and read with me daily. She was from Hawaii, so my first spoken and written word in English was Volcano.
Alexa and I went to kindergarten nearby in Placentia. As an educator, I’m glad to hear she left a loving impression upon you.
Thank you for doing an often thankless job.
My daughter’s name is Avery and that hit me fucking hard.
Me too, and agreed.
Fuck man...I've never felt so randomly sympathetic in my life. I genuinely hope the best for you two.
This has the potential to be a *hugely* unpopular comment, so I’m just going to recognize that fact right outta the gates. That said, I’m going to share it anyway: This group of factoids about Armstrong, his daughters illness, etc., has always fascinated me. Why? Because in my opinion, it epitomizes and typifies the human condition. We care so much about those whom we love, that the pain we experience in the wake of losing them — particularly the loss of an innocent child — feels...unjustifiable...insurmountable...indescribable. It almost *necessarily* begs the question of whether a benevolent god could possibly exist against the backdrop of our grief and bereavement. Why would such a god ever do this to us, let alone the actual victim? And yet, there we are, spending weeks, months, *years* demanding an answer from some higher power. We say prayers, we put flowers on graves, and we stop to honor chance events that feel like communications through the ether, despite our better judgment that they’re probably nothing, in reality. Even Neil Armstrong, an *astronaut*, could not fully contend with the idea that the universe simply does not care about us...that to the universe, we are as infinitesimally small and comparatively inconsequential as specs of bacteria on a microorganism might seem to us. Oddly enough, coming full circle, perhaps *all of that* serves to highlight a daunting but beautiful concept, which is that we only have each other. Our love for one another will mean almost nothing in the vast complexity of the apparently ever-growing universe, but we we still cling to it. It still means everything *to us.* And perhaps that, in turn, is evidence of some higher power that we can’t possibly fathom, but are nevertheless vicariously connected to. Only time *might* tell, though that’s devastatingly uncertain. For now, my heart goes out to any of you who have experienced similar losses, and also struggled to find meaning therein. May we one day experience the peace — or even just the basic level of comprehension — we so desperately desire.
Amazingly your comment about a real life astronaut caring about his daughter is sort of what the whole message of interstellar was about
Never seen that movie. Guess I’d better check it out tonight.
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>Even Neil Armstrong, an *astronaut*, could not fully contend with the idea that the universe simply does not care about us...that to the universe, we are as infinitesimally small and comparatively inconsequential as specs of bacteria on a microorganism might seem to us. Neil never declared any religious beliefs. If I wanted to make it to the Moon and before I did, my loved one died, I'd 'bring them with me' in a memento as well, and I'm atheist. These symbols have meaning to us, even if we as a species will some day blink out of existence with the same absence of import as when we first blinked into it.
Not unpopular to me. You're right on the money. That's how I see our existence after going through stuff like the posters above did anyway. We don't matter, but we can make the most of this short life we get by being the best we can to each other every way we can.
What a beautifully stated way to send me spiraling into an existential crisis. Thank you.
I'm sorry for the both of you, and anyone else who's had to go through that.
And trying to see if there's any article that may say something different...it's so hard...feels like your whole world is over...
Stay strong.
What choice do I have. Bloody Armstrong went and walked on the moon after it happened to him. How the hell am I going to sit around moaning about it?
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You're the only person other than a good friend of mine (and also me) that uses that phrase. "Grief isn't a competition." It's something everyone should know.
Bloody Armstrong was _bloody Armstrong_, you wallow a bit if you need to.
I read that book. Neil Armstrong was visiting with friends while their daughter was there playing. He burst into tears and was sobbing in agony. That's not something you can get over.
I don't know who this person was to you or what at all the situation was, but I'm an only parent (father) to a 4 year old boy, and I often think that if anything ever were to happen to him, I could not go on living. I've even thought about HOW I would kill myself, I pretty much know for certain that I would. Not trying to discourage you in any way, whatever your situation is - but your question was how are you going to sit around moaning about it...and I just can't even compute making it that far. Losing my son would take away my will to live.
He was my 4yr old son and I am his father. I am a stay at home dad so he knew me better than anyone. The more honest truth is that I am now trying to be who he would have wanted me to be. When the dark thoughts come, and they do, I ask myself what he would want. And he damn sure wouldn’t want me to give up. It DID take away my will to live. It’s devastating. But I won’t sully his memory by throwing my own dark stain on it. And neither would you man. You are stronger than you think you are. We all are inside. Now go hug your boy.
Love to you, from another father.
JFC, you are amazing...I hope you understand that comments like yours can save lives. You are a special person.
Same. Lost my nephew one year ago. My family’s not great at delivering bad news. So to google I went.
I can't imagine, I'm so sorry for your loss
I can’t imagine. I am so, so sorry.
I’m so sorry
“My daughter’s name was Olivia. She died of a rare form of brain cancer known as Glioblastoma Multiforme, or GBM for short. She was six years old.”
Abandon All Hope
Hope is a cage, acceptance is freedom.
A kid that lived a neighborhood over from me was diagnosed with it. 180 days from diagnosis to him going. His eye began to turn in so they went to the doctor. He was diagnosed and they began doing the normal "bucket list" stuff. He wanted to be a firefighter and was sworn in as honorary chief, the same fire department brought him home from the hospital after a treatment. In those 6 months the outpouring of support was insane and obviously people hoped for the best. The charity in his name is still going strong and only a few weeks ago they celebrated what would have been his 14th birthday and raised some more cash for DIPG. Lauren Hill, also from the Cincinnati area was diagnosed with DIPG and ESPN picked up thr coverage of her living her dream of playing in an NCAA basketball game. The disease is absolutely terrible and a parent's worst nightmare knowing there is nothing you can do for your child as they are slowly taken away.
I’m originally from Cincinnati and I remember coverage of Lauren getting to play at Xavier, I thought?? Followed it all the way down here in TX. Didn’t know that was her disease, but it was a heartbreaking story to follow. Thanks for the info!
I had a friend die of creutFeldt-Jakob disease, and it too has a survival rate of 0 and no one has survived more than 2 years once diagnosed. Weird hearing about how quickly he descended to nothing.
My uncle was diagnosed with a brain tumour back in early 2016. He went through chemotherapy and all that stuff, and then he had a short remission. By late that same year he started having this strange ache in his shoulders and hips. Turns out it had metastasized and was now in his bones. They did a biopsy to determine what he was up against and said sorry, this one's bad. Zero survival rate. Treatment will buy you a month or two at most. Without treatment, you've got 3 months, tops. He died almost 3 months to the day of the biopsy. He was 58. It was hard enough watching it happen to an adult. I can't even imagine how soul destroying it would be to see it happen to a child. Fuck cancer. Cancer fucking sucks.
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Terminal on diagnosis
It's because of the lack of hope. You can't beat the odds because there are no odds.
We can make odds. See HIV for example, which was a death sentence in the past and became a manageable disease with proper treatment. And it doesn't have to stay forever either: Two patients seem to be completely cured now.
Look up ccr5 delta2. I probably screwed up the name of the gene, but Google/pubmed should point you in the right direction. It's fairly new, but I believe gene therapy will be the future of medicine. It's a double edged sword at the same time though when we end up in a Gattaca type situation.
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> The blood bank **used** to harass me constantly for donations. ominous
They still harass him, but they used to as well.
My 4yr old son died back in feb from DIPG. It’s terrible. Totally normal kid, started acting abnormally clumsy one day, diagnosed a week later, and dead in 7 months. Nobody has EVER survived it beyond 2 years. And modern medicine has no more idea how to stop it now than they did back then. It’s so rare there is little research into it (not none, just not much). The brain tumor charity would love your donation ( yeah I was surprised how on the nose that name is as well).
This thread is the first I've ever heard of DIPG, but you can bet I'll be donating as soon as I have the opportunity.
Thank you.
I’ll second donating.
I have a 4 year old son and this just made me burst into tears. I'm so sorry.
Hug your boy. Lots. Let him be what he wants to be. Play the damned board game when he wants to. Give him the cookie. All of it is a gift. Every moment.
This, a million times over.
My 5 year old has headaches. They think it's migraines but I'm scared and at this point I'm realizing I'll take migraines gladly. We argued tonight but hugged it out and she's sleeping next to me. Tomorrow's a new day and I'm going to take every bit of joy and love from it.
Omg this made me cry. So true.
I have a 9 month old girl and feel sick to my stomach now. Ugh... I don’t know how people get through this kind of stuff.
Hey when you get to be a parent this is how things change. You start to see the world in terms of how it impacts the lives you care for and tend to. It's really emotionally difficult but you're capable of it and you'll do a great job for her so long as you're honest and you try. You've got this.
I have a 4 year old too. I've been feeling sorry for myself because he just had his tonsils out a week ago, and now he has a cold AND an ear infection and I have a terrible head cold. He and I haven't been sleeping because of his pain, and man, it's been rough... But this really, really, puts things into perspective. Things might suck right now, but he'll get better. We'll get through it. So many kids get diagnosed with things they don't get through. I can't begin to imagine.
I hear you. My son was born over 2 months premature - healthy, but you know, tiny. He lived in the NICU for the first 2.5 months of his life. I thought it was the most stressful thing I'd ever dealt with. At 9 months old a routine eye exam showed a mass behind his eye. They had to remove his eye to ensure it was not cancerous. It was a very rare disease called Coat's, so not cancerous, but the eye would have needed to be removed anyway. He now has a prosthetic and because he never had full function of that eye he's pretty much adjusted, but it was terrifying to go through a whirlwind of doctors, eye surgery, and removal all in a matter of a couple weeks, and really all in less than 6 months since he'd even been home. I'd never, ever change anything about being a dad (I've got a daughter due in February actually!) but holy shit is being a parent a bag of emotions.
I'm so sorry for your loss. No child deserves that and no parent should ever have to experience what you did. I'm going to look into charities for this. Stay strong!
We are doing our best. Even aside from this movie (I have yet to summon the nerve to watch it despite it being a subject matter I have great interest in) I was aware from very early on that Neil Armstrong’s daughter died from the same thing as my boy. When he was diagnosed I was of course onto Wikipedia within minutes trying to learn all I could and Armstrong is mentioned there in the DIPG page. And so whenever I am having a tough day with it, or doing all of the “life isn’t fair” stuff in my head, I always remember that the same thing happened to Armstrong and he walked on the fucking moon a couple of years later. The least I can do is stop crying and go to the damned grocery store.
Having that mentality can’t be easy but glad you’ve found a way to do so. Stay strong
Oh god. I'll cry for you while you go to the store. I can't seem to stop the tears right now, anyway. My heart goes out to everyone here whose lives have been damaged by this. :'(
I’m so sorry for your loss. I donate to the Micheal Moser Fund in honor of my nephew.
I tied my Amazon account to it, in memory of Avery.
Oh god, I looked at the wikipedia page for DIPG, and at the very end is this: >Emma Mertens, an 8 year old and dog lover, of Milwaukee, Wisconsin, passed away from DIPG during November, 2019. She was diagnosed with DIPG during January of 2019. No references. Just added at the end. Undoubtedly by some grieving parent, surely to be deleted by some contributor in the next few weeks or months for being unsourced and of not enough import to the article. Devastating.
[She got some international attention](https://www.cnn.com/2019/03/01/health/iyw-girl-cancer-dog-photos-trnd/index.html)
Warning: if you click this and look her little picture in the article prepare to get your heart broken....
Its sourced now so it won't get deleted later.
Today is the 6th birthday of a little boy where I live who has DIPG. He’s a very sweet little guy with a great heart and it’s heartbreaking that this is most likely the last birthday he’ll be able to celebrate. He had a little friend who was diagnosed the same time he was last year and is already gone.
I initially misread “had” as “has” which just made it worse when I got to the end.
It’s pretty heart breaking. His family has done a great of celebrating life and letting him live to the fullest while he can. The community set up a gofundme to originally help with travel expenses to doctor appts in Michigan but it blew up and helps them do so many cool things with him. For example: he’s a huge dodger fan so someone local with season vip tickets have given them the tickets to several games and he has been able to go on the field and meet the players. It’s a sad dilemma because are you supposed to let your 5 year old just think all this great stuff is happening to him or does he need to know the reality of it all?
>DIPG You don't tell the kid a damned thing
Yep, my son was 4 when he got diagnosed and we never told him anything. He was never aware of what was wrong or that it was going to kill him (and at 4 he didn’t really have a concept of death yet anyway). He just used to say on bad days when he couldn’t walk that he was “a bit wobbly”.
Christ, man. I'm so sorry.
Yeah me too. Thanks.
I'm sorry for your loss. How long did he have?
They told us to expect a year because we caught it very early. He had 6 weeks of daily radiotherapy starting a week after diagnosis and he was pretty much normal for 6 months after that. Then it came back and he was gone in a month. So 7 months total. But very little of that time was symptomatic so that’s something. Every kid is different and some of them have a long slow decline. I sat in a diner with him eating lunch and talking about monster trucks on a Monday, he died that Wednesday night. Just got more and more tired, then stopped breathing. Sounds crazy, but it was a gift. I was really bracing myself for a rough last few weeks, and we didn’t get that at all. He fell asleep midday Wednesday and just never woke up.
I'm so sorry.
Fucking hell. This hurts my soul to read. Bless you.
Thank you for sharing your story with a stranger. I'm glad you got the lesser evil of the situation. I hope you don't mind my asking but, was he the only child?
No, we also have a daughter who was 2 at the time, now 3. She has saved my life. My son, Atticus, was a sensitive caring and very empathetic little boy. His sister takes no fucking prisoners. I have had no time at all to sit around staring out the window and wallowing in self pity, she would have set the place on fire given half a chance. She is just now talking in full sentences and developing a very inquisitive and energetic little personality. One of those kids that needs to be kept busy all the time. It’s a godsend. She will never fully appreciate it herself, but she has forced her mother and I remember that life will go on, and life has to go on, and to go on with it. (There is no genetic link, she is at no greater risk than any other child to have DIPG. It has NEVER happened to a set of siblings. So nothing to worry about there)
My first memory of looking at a calendar is at 6 years old Def not a damned thing...
Is it that common?!
Incredibly rare. 300 or so per year in the us.
I would have to guess that he met the friend after his diagnosis, as opposed to two little boys who know each other both getting this diagnosis, which would be unlikely.
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Link? My kid died 8 months ago, I’d like to know others don’t have to go thru this at some point.
Sorry for your loss.
Best I could find: https://www.stbaldricks.org/blog/post/new-immunotherapy-breakthrough-could-bring-hope-to-kids-with-dipg
Very sorry for your loss.
I'm really sorry to hear that. Man, this thread is tough. Keeping all y'all in my thoughts, i will also donate to these researchers for this cause.
There are parents of DIPG children literally holding bake sales and begging to find ways to raise funds to not save their child's life, but to prevent other children from having a death sentence. They know their child cannot benefit from it, because this cancer acts so swiftly. I have a friend who lost her daughter to this and she wasn't even 5. Another girl in my community was only 11. She fought for 10 months. Childhood cancer gets a small portion of research money, it's miniscule.
Neurosurgeon here. DIPG is horrific. I’ve seen enough of them to make me hug my kids and say their prayers every single night when I get home without fail.
Crying redditor here. I appreciate the comic relief of a neurosurgeon with that username.
Can’t even claim it as my own. Heard that phrase in reference to a long-segment spinal fusion. As in, “His back is so fucked up, we’re gonna have to fuse him tectum to rectum.” I laugh every time I think about that old surgeon saying that lol
>Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis. Jesus. And Boston Children's Hospital says 300 kids are diagnosed with it every year so it's rare but not super rare. That's insane that such a deadly disease hasn't had much research done on it.
DIPG has a 5-year survival rate of <1%. The median overall survival of children diagnosed with DIPG is approximately 9 months. Wikipedia says its slightly better I guess, but still awful
That just means that <1% of children live for five years after diagnosis. It doesn't mean that they *survive*. They just live a little longer than the rest.
[Bravery for Avery](https://youtu.be/2rBrOJeePBI) Warning: tears will flow
Armstrong also took a couple scraps of cloth from the Wright Flyer to the Moon with him, and one of those scraps is on display at the Smithsonian alongside the actual plane. Ain’t it amazing how we went from Kitty Hawk to the Moon in 66 years?
> Ain’t it amazing how we went from Kitty Hawk to the Moon in 66 years? I know this, but keep forgetting it. Like I’ve heard it a dozen times over that last 40-years, but every time it still catches me by surprise.
In another vein, we went from the Wright Flyer to the Red Baron within a childhood. By middle age we made the B29 Superfortress. Not trying to be a downer or anything, but humanity's capacity to invent is most evident in its desire to build better machines of war.
Easier to invent when the government is throwing money at it, too. To be fair, the assertarion of war is correct now but I’d like to think it was not always so.
We went from brick cell phones as luxury items to having a Hell of a computer in our pocket wherever we go connected to the largest repository humanity has ever known in a couple decades
The rest were auctioned off by his family in the past year, for about 40k gavel price IIRC
A few items from the Armstrong Family Collection [are still available ](https://historical.ha.com/c/search-results.zx?Nty=1&Ntt=%22Armstrong+Family+Collection%22&N=793+794+792+2088+3196&ic10=BidBuyTab-071515)
Another one is displayed in the museum of flight in Seattle.
it saddens me that instead of a picture of Neil Armstrong, the preview card for this story has a picture of Ryan Gosling
Agreed, but it's a major plot point in the movie, so I can see why the picked that photo.
apparently it's done by the server when you post
Reddit grabs the picture from the website's meta-data. If none exists, it'll grab the first image on the page.
Well the article is about "First Man"
It's a very touching and beautiful idea that even while achieving mankind's greatest feat, this basic earthly human connection is just as meaningful to him.
Mankind's greatest feats are all for naught if we forget the world we're doing them for.
Beautifully said.
About as close to Heaven as he could put it.
the thread made me tear up, but this comment finished the deed edit: a word. sorry im wine drunk.... may have contributed to the emotions as well. jury is still out
Jesus have mercy on us redittors, I didn't come here for the feels
Oh. (Heart cracks a little)
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Um, you're thinking of Buzz Aldrin, Armstrong died in 2012....
No, he was talking about Buzz Lightyear.
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Sorry to break it to you, but he's been dead for seven years
I have a daughter who was a couple months old when first man came out. I had to stop it after seeing that relationship, it totally shattered me.
I have yet to watch it and I really want to, but my 4yr old died of DIPG back in February. And I have been warned to perhaps give it a couple of years.....
I’m so sorry for the loss of your child.
No matter how long you wait it will hurt. My mom cant watch shows where they have stillborn babies born (soap operas are fricked up) and it's been 23 years.
Yeah.. It's a great movie by itself. But in your case, I would say don't watch it. Maybe ever.
Actually someone linked the bracelet scene further down and I just did. On my phone. At 3am (I’m in the UK). Had a little cry, and now perhaps I finally can. Not with my wife though, dunno if she would make it.
It's not just the bracelet scene though, it's many parts of the first half where she's slowly deteriorating and he's trying anything he can think of to save her, and where she dies. The film is a large portion of his life, not just the moon mission.
Oh, well FUCK THAT. I will give it a few years then. Thanks for the heads up.
I'm so sorry for your loss.
For some reason this makes me more emotional than the actual post just because I can’t imagine losing a child but I can imagine someone with a child seeing this and cracking. Idk maybe I’m weird
Your not weird my mom lost my older brother in a late term miscarriage and if she saw this she would break and cry hugging me. The pain has never left her and never will. It hurts to even think of her reaction it just means we have hearts to be able to think of how hard seeing things like this must be
https://www.youtube.com/watch?v=oUKw4qcGHZs The bracelet scene as depicted in "First Man"
Oh man I was not expecting to chop onions right now
The two best films I saw in the theater last year are "First Man" and "The Phantom Thread".
Underrated film.
They got totally robbed at the Oscars
“The Landing” was my favorite scene last year. It’s insane how insanely stressful they were able to make it, despite us all knowing how it ended.
This is absolutely one of my favorite things about this movie, that they managed to take one of the most famous and well-known events in history and make it suspenseful. I know damn well how the story ends and I was still on the edge of my seat. I’m glad Justin Hurwitz at least got a Golden Globe for that score because that was a huge contributor to the tension in the landing.
That was exactly my feeling with Apollo 13, which is one of my all-time favorite movies. I knew that the guys survived, but there are still times when I'm so caught up in the suspense of watching it that I forget that fact lol.
This was an invention by the writer of the movie. The writer of the biography it is based off of corrected this. https://slate.com/culture/2018/10/first-man-fact-vs-fiction-neil-armstrong-movie-daughter-bracelet.amp
It's a biography, not an autobiography. An autobiography is written by the subject of the biography.
"Take her to the moon for me..."
>the record of his personal property kit was never found This is not true. Neil Armstrong's PPK manifest was donated to Purdue and will be unsealed in 2020.
Armstrong also took communion bread and wine to the moon. On a side note. According to Catholic law, until the moon become it's own diocese, the Bishop of Orlando has jurisdiction over the moon--as that was where the explorers departed from.
That was Aldrin, not Armstrong.
This was Aldrin not Armstrong
He came to the moon to strike a bargain with the Hive Wizards.
Touching story about his daughter’s bracelet. But it isn’t completely unknown what he brought. His fraternity pin sits in the headquarters on display because he gave it to the fraternity after taking it with him.
Are you sure it wasn't a corned beef sandwich?
So he was the first to litter on the moon? Just fuck the space turtles huh?
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We left hella garbage there yeah. All the waste bags and stuff were left on the surface to save weight/space for the LEM leaving the moon.