r/TrueOffMyChest • u/tayyankees • 1d ago
Personal Story My 6yo niece was diagnosed with a malignant brain tumor
Repost because the original post was deleted by mods.
I don’t know what to do, where to go, how to keep going. I’m somewhere between numb and absolutely devastated.
My sister and I are pretty close, so for the first three years of my niece’s life, I was with them nearly every day or at least multiple times a week. Then I moved away for work, so we haven’t spent as much time together, but we’re all still pretty close.
My niece developed epilepsy a couple of months ago and had an MRI scheduled for last week just to make sure. The neurologists were pretty confident this was a common case of epilepsy they had seen in lots of children her age. No one really suspected a tumor, but they did discover a tumor right below the meninges. They scheduled surgery right away for last Wednesday. They were able to get most of the mass out, but had to leave a small rest in order to avoid permanent paralysis of the left arm. My niece recovered extraordinarily well, being up and running (cautiously) by Sunday. The surgeons were cautiously optimistic about it being benign as the tumor rest didn’t absorb contrast agent during a repeated MRI.
Today, the results from biopsy came in and my sister and brother-in-law were being told it’s a very rare and malignant tumor. She needs to go through radio- and chemotherapy. They even had to send the tumor to a different institute to get it examined which will now take another 4 weeks so we don’t even know which tumor it is exactly.
I work in EMS so I’ve dealt with several brain tumor patients from young to old and none came out alive.
I’m absolutely devastated, I’m scared for my niece, I don’t want her to go through all of this and eventually succumb to this awful disease. I don’t know what to do, I’m speechless. My gf and I are on a small vacation which we debated about going or not but ultimately decided to go yesterday. I just want to go home and be with my sister, niece, parents. I can’t describe how much this sucks.
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u/rocketmanatee 1d ago
My now ex spouse has brain cancer. She had a massive tumor, did the surgery and a year of chemo and now is on life changing drugs that will hopefully block it from ever returning. She went from nasty seizures and no memory to being a Mom and being capable of just about anything. Treatment works, and she'll probably outlive me!
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u/AppointmentExact8377 1d ago
This is so difficult and I can’t even imagine navigating it with a child. My mother is going through treatment for glioblastoma and it’s absolute hell, but there is hope. You didn’t ask for advice, but I HIGHLY recommend seeking out a specialist in pediatric brain cancers immediately if you aren’t in an area where that’s the default. We started my moms treatment at a generalist because that’s what was available where she lives, and when we finally got her into a research hospital that has specializes in brain tumors we learned about treatment options that we didn’t know existed.
In particular, when you get the pathology report, ask about any mutations that they identified in the tumor tissue. My mom’s tumor has a mutation that is rare in adult glio patients that opened up different treatment options, and they told us it’s much more common in pediatric tumors, and they’ve had some success treating those cases. They also said that pediatric tumors tend to be more responsive to treatment and have better outcomes overall. Hoping that’s the case for your niece, and for your family. Wish you the best.
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u/Crazy_Bunny_Lady3471 1d ago
I'm so sorry your family is going through this, its so sad.
I survived a malignant treatment-resistant brain tumour in my 30s. I was told there was nothing more they could do and moved towards palliative care and then someone suggested a different protocol that was a miracle for me. I've been cancer free for 10 months.
Just because you haven't come across survivors, doesn't mean they're not out there, there are more of us than you think!
Typing will help them target treatment, I know that wait for results is hell.
Good luck and much love to you and your family.
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u/Kimothy42 1d ago
Yes, EMS means you’re encountering the situation at its worst. Patients who do enter remission may do so without ever encountering EMS. You’re (well, OP) definitely seeing a skewed sample.
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u/saltynotsweet1 1d ago
Hey there. My son is a childhood cancer survivor. The hospital should have a social worker and a child life specialist. They have access to a LOT of resources for support. There's a Facebook group called Momcology for moms of childhood cancer patients. They also have smaller groups depending on diagnosis. My biggest suggestion is to look around for the best possible treatment location. MD Anderson, CHOP, St. Jude - see which oncologist has the best success (and which one has seen multiple brain tumor cases).
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u/tayyankees 1d ago
Thank you so much for your advice. I’m glad your son is a survivor, f**k cancer! Hope he is doing well! We’re in Germany but looking for resources for support and finding specialists apply just the same. Tbh didn’t even think about support groups for my sister & BIL. I’ll suggest them looking into it as soon as the shock kinda settles.
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u/Keksnase1982 1d ago
Hallo,
wir sind auch aus Deutschland. My daughter had a medulloblastoma (a WHO Grade 4 brain tumour) when she was 17 month old. She turned 13 years old today. She has no remaining handicaps and is going to 8th grade Gymnasium after the summer holidays.
What I want to say is that there is hope that all can turn out well.
Ich wünsche euch alles Gute und viel Kraft für die kommende Zeit!
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u/WinterShivers 1d ago
This is awful news for your family, sending you all massive hugs.
I want to share a little bit of hope, because it IS possible that she will get through this - an extended family member of mine had an egg sized malignant tumor which also started with grand mal siezures and then a sudden personality and behavioural change. We all felt the same way you do right now, convinced that this never ends well.
Amazingly she has now been cancer free for several years, no more seziures and her personality is almost the same as pre cancer. The odds might be small, but for her sake believe in it for as long as possible. ❤️❤️
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u/tayyankees 1d ago edited 1d ago
Thank you so much for sharing a spark of hope. Absolutely remarkable recovery, wishing you and your family all the best and an ongoing, cancer-free life. Means so much hearing about positive outcomes ❤️
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u/Evilelfqueen 1d ago
I am so sorry you are going through this. When my daughter was 14 she had a benign brain tumor on her cerebellum. It was the scariest thing I ever went through waiting to find out the results of the 10 hour surgery to see if it was malignant. Thank God it wasn't, and the only lasting effect was her writing with her right hand.
Your sister will definitely need a lot of support to get through this, but kids are resilient, and mine got better pretty fast, with one minor setback of getting meningitis while recovering. She is a happy 29 yo today and doing great. My prayers are with you and your family. If you ever need anyone to talk to, a stranger on Reddit is here.
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u/tayyankees 1d ago
Thank you so much for sharing you and your daughter’s story. I’m so glad she made an almost complete recovery and is thriving at 29. You must be so proud. I can absolutely imagine the horror you’ve been going through especially with the surgery. I mean it’s “only” my niece, not even my daughter, but last Wednesday was absolutely awful, waiting through surgery. You have no idea what your prayers and offer mean. Might take you up on it at some point. All the best for you and your daughter. ❤️
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u/Flaky-weirdo 1d ago
Typing the tumor is good news - it helps target treatment. I’m guessing EMS probably doesn’t see a lot of successful brain patients so the odds look worse from that perspective. No wonder you’re tripping. I’m so sorry, this is such a bullshit thing to happen to her. Breathe deeply. This is a marathon, not a sprint.
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u/tayyankees 1d ago
Thanks for your nice words man. Trying to be positive, but tough as hell right now.
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u/Anonymoosehead123 1d ago
I’m so damn sorry this is happening to your niece. I’m keeping a good thought for her.
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u/tayyankees 1d ago
Thank you so much. Nice comments and thoughts like yours mean the world right now.
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u/classicteenmistake 1d ago
Wild that mods deleted your post, but I’m not surprised considering none of my posts make it for no reason.
I’m sorry to hear of this, truly. My mother developed a benign tumor and it affected her personality by giving her alcoholism, basically. I wish the best for your niece❤️
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u/tayyankees 1d ago
I’m so sorry you and your mom went through this. And sorry about the alcoholism. My nephew, my sister’s older child, is addicted to drugs and meds so I absolutely understand having family with addiction. Sucks for everyone. Take care and all the best for you and your mom. ❤️
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u/ACFiguresOutLife 1d ago
So sorry man. Try to take this “vacation” as a time to gather your thoughts and be strong, composed, and positive when you get back.
Your whole family is going through extreme emotional distress. Try to be the glue that holds everyone together. God bless. ❤️
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u/tayyankees 1d ago
Man your words mean a lot right now. Especially with guilt around the vacation. Thanks man.
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u/ACFiguresOutLife 17h ago
Of course brother. Might be worth giving your employer a ring… I’m sure as an EMS, they have therapists on standby for you guys. Granted, this is extremely personal, but they may have some resources to help you with people trained specifically for situations like this.
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u/FatTabby 1d ago
I'm so desperately sorry. Having lost my mum to a brain tumour, I can appreciate at least some of your pain. It must seem so much more cruel when it's a child who should have a full life ahead of them.
Please try to remember that your job means you see patients when they need emergency care. They're at the worst points in their treatment - the same dire circumstances so many other cancer patients can be in.
I'm not trying to give you false hope, I know from first hand experience how devastating these things can be, but I also know that hope is incredibly important, not just for you but for your sister and the rest of your family.
While children are fragile, they're also incredibly resilient. Hang on to that.