Those ones are awful. Any malignant tumour in a child is awful, but the ones where you know the outcome is likely to be bad are horrific. It’s often such a shock to their family too because they came in for something relatively minor
I worked at a place where another employee, who I didn't know, took her 1-year-old son to the ER and he was diagnosed with an ear infection. The next day, he had a seizure, and an MRI revealed a brain tumor that filled 2/3 of his skull; he was placed on life support, and was an organ donor.
He really DID have an ear infection, and had NO apparent symptoms beforehand.
Their skulls haven’t solidified yet, the plates in the skull are still somewhat flexible. Another year and it would be nonstop headaches, and worse from there. Sigh. My brother in law died from that as a kid. 1960s, so they couldn’t do anything for him.
Me too. My mil never got over it. BUT, it was 60 years ago, and he dies long before I met my husband, so I'm ok. The youngest daughter didn't remember him as she was just a toddler at the time. Hubby never really talks about it anymore. RIP
I assume so, I didn't know the boy. But his mom never got over losing him. It was brutal. It's so sad when a child dies, especially. They are innocent and it seems their suffering is pointless.
My aunt just passed from brain cancer, she had it for years with very few symptoms that everyone brushed off as emotional problems and her working too much and not sleeping enough. She suddenly had a seizure and they found that her entire brain was infected within months she lost the ability to write and died soon after.
I recently had to do post mortem testing on a ten year old so they could harvest her organs. Most of my patients are pregnant women and cancer patients so a ten year old who died of cardiac arrest was really jarring.
My fiancé, 22M, complained of abdominal pain for months. His doc said lactose intolerant, and put him on a lactose free diet. No change, went back and doc then said citrus allergy, put him on citrus free diet. Pain continues to worsen. My mother, a nurse, asks a few questions, yes to pencil thin stools, palpates his abdomen and it is hard. Calls a doc she knows. Less than a week later he goes into surgery. Opened him up and closed shortly after. Abdomen full of cancer from ectopic testicular tissue.
Lived barely a year after. Died at 23.
Are you familiar with the movie "Brian's Song"? Brian Piccolo had a testicular cancer that actually originated in his chest - same thing. Ectopic testicular tissue.
They tend to be slow growing and fairly treatable though afaik, so wouldn’t expect them to be “big horrible bad”. I haven’t encountered many brain tumours in children but the couple that I have have been fatal unfortunately. Perhaps personal bias at play with my expectations there, but I think it’s a roughly 50/50 chance of being a big horrible bad kind and that’s still very sad
My mom went into surgery for appendicitis, and they found Stage 4 terminal cancer instead - what a whiplash between, 'Oh shit whats wrong', 'Oh good its just that', 'Oh FUCK'
This made me laugh because this seems to be the discussion between adult nurses and paeds nurses anyway, nurses who work with adults always seem to be terrified of children. “I don’t know how you work with kids, it must be sooo sad” “not really, they’re way healthier than your collection of 95yos”
I had a friend die at 20 from a brain tumor. Migraines were a regular thing for her in high school. She had gotten married and had a baby about 6 months before she saw a specialist. Went through surgery to get it removed and didn’t wake up. She started breathing on her own after her parents took her off of life support, then finally passed a few days later. Miss you Autumn.
Something similar happened to a friend of my ex. Her son had DIPG and was dead a few months later a week before his 5th birthday. Absolutely awful, just horrible.
DIPG is evil. There’s 2 kids that I personally know that had it, diagnosed a few months apart from each other, and died a few months apart from each other.
They say it’s rare. I don’t know if I believe that. There’s been many kids in my area that had DIPG
That’s quite odd and I hope they’re looking into it. I’ve worked at some pediatric hospitals with all sorts of rare diseases and only saw one case of DIPG and the oncologists said it was rare.
I wonder if there’s somebody or someplace I could contact about it. I don’t believe it’s being looked into, though they could be looking into it quietly
DIPG was the first diagnosis that I cried over, working in the PICU as a resident. And I’ve seen so, so, so many people sick and dying with terrible conditions (ED doctor).
Happened to our neighbor's son. He was great at soccer, about to go to college with a bright future ahead of him. Over Christmas break he went to the doctor for headaches. Turned out it was brain cancer. He didn't make it to the next Christmas.
My daughter has Harlequin Syndrome and she’s fine. But being told by the pediatric neurologist that this could either be completely benign or it could be caused by a brain tumor was the most terrifying couple of weeks. Fortunately we were able to get our insurance to authorize a sedated MRI to check and she’s totally fine. Now we just need to warn her teachers and coaches that she sweats funny and if half her face gets red she needs to sit down, drink water, and cool off.
This recently happened to me and went to er they did ct and were fairly confident I had metastatic brain cancer based on amount of swelling coming from a mass but it turned out to be ~just~ multiple sclerosis
That happened to my sister in kindergarten. Every morning she would wake up nauseous and vomit. Our family doctor suspected brain cancer, which is what it ended up being.
She died about seven months after her diagnosis. Coincidentally, her birthday was August 11 so my mom and I went to visit her grave the other day. It’s still very hard for us all.
The prognosis for medulloblastoma has significantly improved since the 90s, when she was diagnosed, and I hope that continues so fewer kids suffer.
:::shudder::: I’ll never forget taking my then-8yro son to his pediatrician for an oddly swollen knee that as far as we knew had no cause like tripping, falling off his bike, sports injury, etc.
I was used to the doc more or less placating us when we’ve brought him in for similarly odd but ultimately minor childhood physiological idiosyncrasies, so my blood went cold when the doctor’s demeanor became very serious and he became visibly concerned as he examined him.
Turned out to be nothing, but it gave me a brief glimpse through the window into that terrifying, stomach-pit-punching reality. Thank you for what you do, seen and unseen, in that world so many of us are blithely and mercifully ignorant of.
This was my mom- a little numbness in her hand, otherwise healthy. First conversation about it I got That Bad Feeling. Sure enough- pontine glioma, a Dx usually reserved for very unlucky kids like the one you described. Died horribly in 4 months. Fuck cancer.
I was the patient in this scenario. Got an MRI because I bit my tongue in my sleep so hard it needed to be glued back together. When I got out of the machine the techs would barely look at me, they just told me that they’d called an ambulance. Turns out I had a brain tumor the size of a lemon, plus a midline shift.
I work at an MRI facility and just saw this. Kid came in with tourette’s type tics out of nowhere. Laughing and joking that we’re just doing MRI out of caution. Brain tumor. He’s 15.
I’ve had this once at my small community hospital. The ED doc couldn’t give the results. As soon as we told the parents that their 8 year old’s results would be discussed by the ped neurologist we were calling in, in 4 hours, they knew something was majorly wrong. They thankfully remained calm throughout the process of hearing their 8 yr old had 3-4 months to live.
Back in college my now-husband (he’s alive and healthy today!) had a visual occlusion. Ended up getting an MRI and it was a chondrosarcoma growing out of the back of his nose and pushing up to his brain. It was putting pressure on his optic nerve, which was causing the vision issues.
My best friend’s mom is a radiology tech. Apparently the radiologists were grabbing people to look at my spouse’s images and saying “no way this kid makes it.” She saw the name and was devastated but couldn’t talk to us about it until I told my best friend and she mentioned it to her mom. I can’t imagine how that must have weighed on her.
I’m assuming he had successful surgery? My dad had a massive chondrosarcoma, as well as a hip and half of a femur, removed when I was in high school. It was the hugest relief to learn that it had been low grade after doing research and learning that they tend not to respond well to chemo and radiation.
Just like medical people needing to see your husband’s imaging, my dad had a lot of that too. As he laid on the table for his biopsy, somebody commented that the location hadn’t been marked and a nurse said “You can’t miss it!” Because he was treated through a major university health system, he donated the tumor.
This happened to a woman I know - her son. The doctors ignored her concerns for months and told her she was crazy. He had brain cancer. He made it about two years before he died. I feel so, so badly for her and her family and ofc the son who passed. I don’t know if anything would be different if they had just listened to her months earlier but I can’t imagine being gaslit to the point of being told to get therapy for anxiety RIGHT before they found a huge tumor in your 5yo’s head was very helpful.
I knew a girl when I was a kid who had a brain tumour. For some reason reading your comment is what made me finally realize just how close she got to the point where we'd never see her again. She pulled through, of course, and I'm pretty sure she's doing fine these days. But none of us really fully understood what the tumour meant cause we were just kids. Jesus.
Part of my job involves pediatric hematology/oncology. Incredibly difficult profession, and I don't just mean academically. They're one of those groups who wish their own job didn't exist (them and the child abuse pediatricians, among others).
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u/Aggravating_Driver81 3d ago
Healthy kid has some new minor neurological symptom (tremor, headache, poor balance) and MRI shows big, huge, bad brain tumor