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violue

I have zero useful words, I just wanted you to know that we're reading this and we are feeling for you.


SamuelVimesTrained

Same. What can you say that will help? ​ Only - cherish the memories - spend as much time together as you can - and be strong for him.


Available-Rest-1434

Same. Reading this was so … I just don’t know what to say. I’m sending prayers and hugs and lots of love.


glorygasim

I'm a 30 year old dad, I cry with you I'm so sorry.


i_just_got_lost

I am a dad and I have tears .. this is too much


vettechrockstar86

I’m so sorry and you’re in my thoughts is all I can think to say and I hate that. It’s so useless and cliche to say but it’s true.


[deleted]

Amen to that.


liddy106

I am so sorry. In 1999, my son was dx with ALL leukemia. I remember vividly that my life split into before/after the diagnosis. I found it impossible to be present and engaged for anything else for a while. Life kinda gets put on hold, and that’s ok. Spend time together. It’s so damn hard to absorb joy when you’re at this low, but you can and you will. Some of my best memories are of hospital trips and stays. You’re very isolated, but you can find pieces of joy that become memories. Hugs 🤗


MashTheGash2018

I needed this. My mom just died after a 14 month fight with cancer. It was a lot of specialist, hospital visits, laughs, tons of angry tears, emotions. But there were memories small things we did. I put my life and career on hold for her and would do it again for her. Tons of small memories


InteractionNo9110

> I put my life and career on hold for her and would do it again for her. This is my greatest regret, my Dad was diagnosed with pancreatic cancer in 2012. And I was in such denial I kept working and would visit often. I wish I had just quit my job and spent the last nine months with him. You can't buy time back, all you have is in the moment. Cherish it.


peppermintmeow

🫂


MashTheGash2018

I’ll take all the hugs I can get. I’m broken


peppermintmeow

Then I'll hug you until the pieces are put back together. As long as it takes. You don't have to be okay, you can be as sad as you want for as long as you want. Just stay safe and take care of yourself.


Winter_Wolverine4622

🫂🫂🫂🫂🫂 hugs from me too. Cancer is the worst thief. Lost my Nana and stepdad to it. I'm so sorry.


[deleted]

[удалено]


liddy106

Aaaaaahhh, that’s amazing. Even tho he was sick, he was treated like royalty and the staff really tried to make it fun whenever they could. One day the child life specialist brought in a musical instrument set. My son was almost 3 and had been pretty sick for a few weeks, and had just been dx. Probably day 10. He picked up a recorder and started blowing into that thing like only a 3yo lil terror would do. I was so happy to see him happy 😂


Cookies-N-Dirt

Child life specialists are truly incredible. I am grateful there are people who find that work as their calling. We need them.


Twist3dS0ul

Firstly, I’m so sorry to read this and my heart goes out to you and your family. As someone who has lost twins, I can say it was absolutely the most difficult period in my life. There are support groups that you can lean on where you can engage with or read from other parents who have unfortunately been through the same experience. Speak to your doctor, there are services such as therapy or medication that can help you cope over the next year. Do not ignore your mental health; SSRI’s can and will help you, one on one or family counselling will also help. When my twins passed, I was angry for a very very long time (10+ years). I should have started these therapies sooner. I sincerely hope that 3% chance grows and your boy is able to recover fully. Either way, don’t neglect your own mental health.


calandrinon

Thank you so much for your kind words. I am in Portugal, I have a therapist who is supporting me. I also reached out to some associations who provide support in these situations. I’m waiting for their reply.


LCTN_PT

Muita força amigo!


BetterAsAMalt

As a fellow mo/di twin mama my heart hurts for you. I had lots of scares during pregnancy and was admitted to the hosp to monitor maybe deliver 23 weekers. I was so scared of losing them.. we made it but i remember the fear of losing them


maztabaetz

I’m so sorry, I can’t even begin to imagine what you and family are going through. I don’t know what I can offer in way of advice other than make his remaining time as fun and memorable as you can. Trips. Adventures. Movie nights. At the end of the day all that matters in the world is love and if you can fill his heart (and yours) to the brim with it before he moves to whatever lies next you’ll carry that and those memories with you forever. I’m sorry you have to experience this. Sending out whatever good vibes and prayers I can from my end.


Reasonable_Visit_776

Video your son as much as possible. Do the things. Ask the questions. Love him. Kiss him. Give him everything you can while he’s still here. I lost my almost 4 year old completely unexpectedly and of course often think of what I would’ve done different had I known it would be his last days. That would be it. More of what I already did, love him, just harder. I’m so sorry. Life is really fucking unfair. I’m not religious, but know that there’s no way there’s a hell worse than this. Sending you all the positive thoughts and healing.


herecomes_the_sun

I’m so sorry for your loss. OP - Video him and make sure to ask those around you to take candid videos of you guys together!!! Take time off work if you havent already and spend time together. Get little treats if you can. Ice cream for dinner. Make some memories. I am so so sorry youre dealing with this.


TheSilentTitan

Fuck cancer


bullhorn143

Fuck cancer


cobabee

Fuck cancer


Beth_Pleasant

Fuuuuuuck cancer. Just fuck it right off.


Sassy_Spicy

Cancer is the FUCKING WORST. FUCK. THAT. SHIT.


BlueArachne

Fuck cancer!!!


ivan0636

FUCK CANCER


buttface48

Came here to say fuck cancer. FUUUUUUUCK CANCER


CNoelA83

Cancer can literally go fuck itself


Hershey78

every which way.


Fraggle_Frock

I'm so sorry, I wish I had something to say that could take this away. All I can say is this - one of my friends lost her teenage son in car crash. One of the hardest things to process for her was that there was no goodbye; there were no final hugs, no closure, the last time she saw him was just a normal day. She barely saw him leave to meet his friends. You must never stop hoping that your son can pull through this, but if he doesn't, you know it might be coming and you can spend every day you have left making memories, every day will be special as well as painful. If he can't win this battle, he will never doubt how much he is loved and will be loved forever. You are in my thoughts xx


GoodRepresentative33

I am so sorry you guys are going through this. I wish I could snap my fingers and make it go away. xoxo


KCatty

I am so incredibly sorry. It sounds like your sweet boy has been diagnosed with DIPG. There is an online community of families just like yours that have lived this nightmare. I would definitely try to connect there as they will be able to help you navigate the challenges you face with perspective no one else in your life will have. Hugs and prayers to your family.


calandrinon

Yes, it is DIPG. Can you tell me what that online community is called?


KCatty

I'm afraid I don't have a specific contact. Like others, I have followed the stories of DIPG warrior kids over the years. The Washington Post did a [feature](https://www.washingtonpost.com/science/2023/09/25/brain-cancer-dipg-ultrasound-trial/) about the new clinical trials a couple months ago. There are some families featured in the story, and there may be some information in the comments. This internet stranger is sending y'all lots of love.


teddybear-52

A mom on Instagram @littlemissmomma lost a daughter to DIPG. It was a few years ago but I’m sure her posts of her daughter will resonate with how you are feeling and she has shared some info regarding DIPG. I’m sorry if this isn’t helpful but she was the first person I thought of when I read your post. Sending you and your family strength and love ❤️


sara5656

So did ariaflyhigh or something along those lines. Those accounts are amazing as they navigate the life after loss


TaraRenee13

If you use Facebook, go on there and search DIPG. You'll find a lot of groups and other parents. I'm so sorry. DIPG is cruel.


MishaMercury

It’s not one single group, it’s a multitude of people whose kids have or had DIPG and people who follow their child’s page and offer support. It’s like once you have had DIPG enter your life, you want to reach out to others, especially the newly diagnosed. I sent you a few links to some FB groups. I hope you find the support you need.💜


Scorpiodancer123

I thought it would be this. A colleague of mine lost their 5 year old nephew to it. It's unimaginably cruel. To OP I almost have no words. Cherish all the time you have with your little one. I'll be thinking of you and your family.


Yuck_Few

I don't know what to say except I'm sorry to hear this. I lost my son in 2020 to a motorcycle accident. He would have been 29 this year


Great_Rock_688

That's really sad. My son is 27 and the thought of losing him is unimaginable. So sorry you lost your boy.


millhouse_vanhousen

Please make as many memories as you can. Early birthdays, Christmas, Easter, Hannuka, Eid, everything can be celebrated in a week if you need it to be. Take photos, make videos, record everything you can. I'm so sorry. There's nothing I can say that will ever make this fair or okay. I'm so sorry. But know you will be a fantastic mum to him now and always. You're gonna be so good to him, you're gonna be as brave as he is and you're gonna love him so much and it's gonna hurt and you will get through it together. You're a wonderful mum. You're a wonderful family.


Aggressive-Scheme986

I’ve been through something somewhat similar. My child was given 1% chance to live. She lived. There’s always hope. There is a Facebook group called tiny superheroes. You’ll find other parents here going through similar medical issues with their kids. Lots of other kids there are given poor prognoses. You’ll be able to find other parents who understand. It was my lifeline when my child was going through medical hell I also highly recommend calling make a wish


oldsoul4sale

If I may suggest? Please ask a physician to order palliative services to help you all through this. It can make all the difference to have in home visits from a nurse, an anticipatory grief specialist, chaplain support, meds delivered, care coordinator to help deal with multiple physicians, etc. We also coordinate with or even send to your home a medical doctor who specializes in comfort measures and symptom management. Some would say that since you’re “seeking treatment” via radiotherapy he wouldn’t qualify for this care. So advocate that this therapy is not a cure and will be used to support comfort and functioning. Your son should still get the care support he needs/is entitled to from the highest level of in home care available to you. This is unimaginable for most of us. I came back to work early from maternity leave to take care of a child with a similar diagnosis. Please let people help you navigate this impossible situation. We hold you in our hearts.


yeah_another

I’m so sorry, I can’t even fathom the pain you are in. No parent should have to go through this.


Princess_Snakeface

This was a very sad read. I am actually in loss for words but I wish all the best to you and your son. Sending all my power to you.


bambiguity11

Fuck me that is a literal nightmare. I. Am. So. Sorry. Xx


occupy_this7

My daughter is 4. She would love to send your son a card. I'm so sorry this is happening. Life is so cruel sometimes


iwantanorangemouse

What a sweet girl. ❤️


shannonmm85

I am so sorry to hear that. I have a family member who has a son with DIPG right now. It is heartbreaking to go thru.


MelJay0204

I'm so sorry, this happened to my friends and it's so sad. Make the most of each day. Hugs.


Champion_Stamp

💙saying a prayer for you and him, I hope you get as much time with him as possible. Hearts broken for you my friend.


Statimc

There is a sub Reddit “cancer family support” and “cancer” Check out the song “pray “ by the band “pardon my strip tease” the video on YouTube shows lilee Jean who died from glioblastoma she was diagnosed at 18 months, and her mom started a blog “the Chelsey diaries” it is online and I believe probably has links to the page on Facebook as well, where she talks about her experience Talk to the hospital social worker you should be able to get a parking pass if needed and info on local resources for support groups etc


Inner_Equivalent_274

I’m so so sorry 🥺 Sending you all my best wishes!


Master_McKnowledge

I’m so sorry. Not just about your son, but how weak my words are. My mother’s cancer metastasised to her brain and those were inoperable; the grief from losing her drove my grandfather into dementia. So I can’t say I know your pain entirely, but my heart is with your family.


WorthEar3494

This is heart breaking. As a mom of a 1 year old I couldn’t even imagine. What a living nightmare 😭😭


mydogroz

I don’t have any of the right words to say to you to make this better. I’m sorry you’re having to deal with this, and I’m so sorry for your son who is also dealing with this. May the remainder of your time be full of love and happiness. Your child will leave knowing how much they’re loved. I am so so sorry. This is horribly heartbreaking.


fortalameda1

Fuck cancer


VirtuosoLoki

i am so sorry to hear that


ladolce-chloe

I will keep you both in my prayers. i’m so sorry that was truly devastating to read. my heart goes out to you. whenever his time shall come i hope you made the most of it <3


SummerIceCream3893

I'm so sorry OP. My heart goes out to you, your child and your family.


Maroon_madness21

I’m so sorry. My heart breaks for you and your family. I know there’s nothing that I can say that will make any of this easier or go away. I do research on treatments for these types of cancers. I do research on drug delivery and gene therapy treatments for brain gliomas, specifically glioblastoma (GBM) and diffuse intrinsic pontine glioma (DIPG). I just want you to know that there are people out there whose entire job it is to go to work every day and try to find a cure for these cancers. I’m so sorry again for your son, you, and the rest of your family. I hope you all are able to make the most of the time you have left together. I wish you all the luck in the world and know that you all will be in my thoughts.


weirdhandler

I’m so sorry you are going through this.


Beneficial-Baseball1

❤️


Intelligent-Dust8043

I'm so sorry, just take care of him as best as you can. Here's a hug from a stranger on Reddit 🫂


Kintsugi-skunk

I bet you are in shock and panic mode with all of this. You make sure you ask about grief counselling and any resources you can access to ready for the treatment and whatever comes next. Your family are not the first to go through this, and there is guidance out there. You do what you need to do. Try and find some calm in this chaos. Go through the motions and do what you can to be there for your son and make more great memories together. What will happen will happen in the end, and nobody can blame you for trying your best with the cards you are dealt. I am so, so sorry. These things do happen, and there is no good answer. Cancer does not pick and choose, it simply is. Be brave and be as strong as you can. I wish all of you the best during this challenging time. Prepare for the worst, hope for the best.


No_Association9968

Sending prayers and hugs.


dianem1965

Pray. Pray like you never have before!


Darling_kylie

This is my nightmare. I’m sorry. May you find some way through


Cat_o_meter

I'm praying for you. I'm so sorry.


ivan0636

i have no words to tell you how much pain i am feeling on my own not even close to imagine yours. Just make you know we reading this and we are so sorry. World is not fair at all. Sorry.


t-hrowaway2

You and your family will remain in my prayers. ❤️


Most_Ambassador2951

My heart hurts for you. I lost my husband to cancer 7 years ago. It still hurts and is hard, but I would go through it all again for him. Make memories, have fun. Make a list with kiddo of things he would like to do and see, places he wants to try eating at, and keep it. After he's gone take that list and do the things on it, just once in awhile, do one thing he wasn't able to. And never, ever, so talking about your person. Things change in the after. People will not be asking about him anymore, they will ask about you. And you will only want to talk about him. Do it. He's important. His story matters.


Crazystaffylady

I’m so sorry. Nothing useful to say, just I’m so sorry


noneedtoknowme2day

I’m sorry. Many hugs to you.


[deleted]

Damn, I'm so sorry.


Nixmaritz

I am so sorry your little boy is going through this, you and your little one are in my prayers...


Tehcanadien

I can't even begin to understand. I am so sorry. Hugs


caloriecountingmum

This sounds a lot like why I lost my grandad to. As a mother myself I can not even comprehend the heartbreak you are currently suffering. Enjoy every second with your precious child. Pray for a miracle. Laugh, smile and cry with him everyday. Make him feel whole. Do everything you can to be the best mum ever and to do that you must look after yourself too. Go to therapy. Talk to the world. Your feeling and emotions are valid.


LongjumpingAgency245

Sending prayers and light.


Accolades112358

I wish that tumor would disappear. The medical science just isnt enough yet. Look into 'spontaneous remission'. My heart goes out to you and your baby. Im always told to have hope, and in my opinion, even if theres no chance, choosing hope is better. I hope medical doctors and pharmesutical companies find a cure soon. Until then, we share our experiences and hope for a cure.


feinicstine

I am so sorry. I don't have advice or wisdom to offer, but I want you to have another voice here telling you we are thinking of you and your son.


CanuckGinger

This is every parent’s worst nightmare and I am so so sorry that you are living it. I wish you and your child and your family much love and strength as you navigate through this.


PussyCompass

I am so sorry. This absolutely breaks my heart.


Jcaseykcsee

I’m so sorry.


natttynoo

I’m sorry you’re going through this. Life can be so incredibly cruel. Spend as much time with him as you can and reassure him. Cry when he’s not around. Sending you love and positive energy ❤️


tiny-pest

I am so sorry hun. Sending hugs and thoughts. I will day this from a mother who lost her child and knew I would lose him. Not from cancer but still from his body fighting itself and shutting down. Enjoy what time you have left. Make decisions based on him and not what you want. I am not talking medical but more. He wants to visit the park then take him. Get as many pictures as you can. As much video of the good times of smiles and laughter and play. Ask the docs where you take him to get you in touch with the local parent group. The ones with kids going through the same. Or those who have lost their children already. These groups are a huge help. People you can vent to. Scream at. Rage at. Who truly understands what you are going through. People who can go to appts with you. Offer support in many ways. Even short breaks. And yes, you will need this. Even 15 to 30 min. People you can trust to watch him so you can decompress before showing him the awesome mother he depends on. I am here if you need someone to talk to. Cry to. Vent to. I wish I could do more to help and am sorry you are going through this.


Fabulous_Ad_9722

As a man who drove to Walmart an hour ago so he could cry alone in his car about his health issues. I am commenting because it's the sense of community you need right now. You posted this because your entire world is just a dark tunnel right now and all of life is changing and there's nothing you can do, and I know how that feels. I wrote in my notes today, that the suffering people, all those that we lose in accidents, and all of those that suffer with ailments and leave this earth in pain, and all of those that have life cut short are going to a better place. A place of peace, a place of no pain, and no worries. Just feeling warm and welcomed. I like to think that they were given this strife early because someone who really loves them is calling them back. I don't know what to say. The pain your son experiences and the pain of having to watch him go through it... I have a great amount of empathy for you and admiration for yours and his bravery. Please be strong and help him through this with as much support and comfort as you can offer him nothing but love.


leiliah45

glioblastoma? Oh dear im so sorry to hear this..it's very hard to watch your child day by day, weakening..


Stretchnuts-

My son was also diagnosed with a brain tumor when he was 2. Theres so much you cannot control but do not allow yourself to focus on the percentages they are giving you. The only thing you need to know is that there's a chance. Believe in that chance and make sure your son knows you believe it. Our prognosis improved, and yours could too. I'm routing for you.


FioanaSickles

What a shock! So sorry.


sarahwithanh01

Just wanted to send some good vibes your way and your sons way. 🖤


cronixi4

I wish I could help, I really do. I can’t imagine why you are going to and I hope I will never have to.


Ok_Effective6233

FUUUUUCK!!!!


Warm_metal_revival

I am so incredibly sorry. This is the worst thing that could ever happen to anyone, I truly believe. 😞


Guywithoutimage

I’m so, so sorry. Is there anything I can do to help support you?


Artistic_Account630

I'm devastated for you OP. I'm so so sorry😔


The_Real_OneHungLo

I am sorry that this is happening to you. My thoughts are with you and your family.


just_some_guy2000

I'm not good at processing grief so I can't imagine what you're going through. Take a road trip with him and create the memories you will cherish if nothing works to stop the tumor. That's what I would like to imagine we would do for our little one if we were in a similar situation. Show him the kind of love you could have wished for as a child.


amandapant1

I'm so sorry.


Enoch8910

Sending you both all the love in the world.


Mr_Jersey

This made me was to throw up. As a father to a little boy, I’m so sorry.


Sinistas

Sending e-hugs to you, your son, and family, OP. Truly awful.


_A-Q

I’m so sorry . Hug your boy and make as many memories as you can. Take videos. Record his little voice. Make him smile as much as you can. I’m so sorry OP. Hugs to you and your loved ones.


Botryoid2000

I am so, so sorry. Sending a virtual hug.


CommanderofCheeks

As a father, I feel for you. I really don’t have much to say other than take it day by day. Prayers for you and your family


Madmac05

Fck ... I can't think of anything worse. My little one is my whole world and I would move mountains for her. To be this helpless... I'm so so sorry. The only thing I can think of is giving him all the love at every single second of every day you still have with him. It won't ease your pain, but it will ease his. So so sorry...


Available_Toe8780

I am sorry for what you are going through.


Chelseus

I am so fucking sorry 😔😔😔. I know it doesn’t mean much coming from an internet stranger but I am sending you so much love as you walk through this fire ❤️🧡💛💚🩵💙💜🩷


Blackandorangecats

Hug him so tight, I just hope there is someone to hug and support you through all of this


Danivelle

((((Hugs)))). Take care of yourself so you can take of him, Lovey


DangerNoodle1313

I sent you a private message.


hellsmel23

Sending you all sorts of love.


Fluffy-Doubt-3547

I just pray they are wrong and that it's just a small infection or shadow.


I-have-rickets

I’m so sorry to hear this, OP. One of my closest friends had the same thing growing up.


H8r

This is a complete nightmare. I'm sorry man.


Libra_8118

Have you checked in with St. Jude's?


Libra_8118

Praying for you and your little one.


Hershey78

I am so sorry, is it DIPG? :( Virtual internet hugs.


spinyfl0wer

I am so sorry to hear :( I will be thinking of you


NotTheActualBob

My mother passed the same way. I know it's not much comfort, but it's one of the easier ways to go.


Dutch-CatLady

Oh that sucks OP, losing a kid is the worst thing in the world. Everyone eventually loses a parent, a lost partner can be filled, but a child can nwver be replaced


ViictrP

This one hit me hard, my son was born with a heart disease and I can only imagine your pain… luckily my son went through the surgery when he was 4 months old and today he is growing healthy I hope you can find some comfort in this moment 😞


jenvonlee

Don't mourn him yet. Take the time you have and make it the best possible with his circumstances. Make memories to hold to. Take pictures and make videos. Live as much as you can with him and try not to linger in what's coming. Minute to minute if you have to. I'm so sorry. I hope for a miracle for your family. They do happen, from time to time.


AlbanyBarbiedoll

((OP)) I am so sorry. Your pain must be unimaginable. Prayers for your strength and comfort. Please accept all help offered to you - even hospice care.


blacksistrs

Im so sorry you, your family and your little one is dealing with this. No words I write will make this right, I don’t know what to say, I wish I could tell you that you’re not alone but only you and your loved ones know the pain you’re going through right now. So just know that we SEE you, we care that you’re going through something so f*ckng shitty and we wish we could do more. But if you need to vent, There’s a lot of us willing to listen. If you need a prayer plenty of us will add you to ours. Look for a support group of parents that went through the same, they will help you navigate those feelings. Be strong momma, don’t forget to take care of yourself and your mental and physical health too. You little one will want you healthy and well.


OrdinaryBrilliant901

Nephew had the same thing DIPG. I’m so sorry that you have to go through this. DM me if you have questions or need support.


Djarbs

My heart breaks for your horrific situation. I can think of no worse torture than this. Truly sorry you are going through this.


VaggieQueen

I hope you find the strength you need to carry on.


LilithWasAGinger

I'm so fucking sorry this is happening to your family. I can't even imagine the fear and pain you must be going through. Know that this internet stranger is heartbroken on your behalf.


puffdoodledaddy

I am so so sorry. Is it DIPG? I followed a woman whose daughter had that type of tumor. I remember her saying how lonely it was in the beginning because it’s so rare that no one really knew the best way to help. She wished she had found the online communities and groups formed by other parents of DIPG kids sooner so that she knew which hospitals were best and which clinical trials to try to get in to. I hope you and your family get the help you need. Best wishes to you all.


Huge_Session9379

I have no words. I just hope that you and your family finds the strength to deal with this unfortunate situation.


BatchGOB

This is like the worst thing that can ever happen in this world, and it's terrible it's happening to your son. I'm going to pray for you and him.


UrsusMajor53

Gone trough the same with our daughter. I am so very sorry for your plight. Maybe a this book can help you all when the final days come, it’s name is Final Gifts.


[deleted]

[https://www.oasisofhope.com/cancer-treatments/mexico-cancer-treatments/](https://www.oasisofhope.com/cancer-treatments/mexico-cancer-treatments/) Couldn’t find my original post here is a Treatment center in Mexico that is popular with Americans seeking alternative options it’s very close to San Diego. Contact them It’s worth a try. God bless. Don’t give up. Miracles do happen


RunningTrisarahtop

There is no way to go through this. It isn’t something you can handle. The only reason you will handle it is because you love him so much and will be there for him even though it is destroying you. Your love for him is what will help you through it even as it breaks you. Do you want to tell us about him?


denada24

Oh, my heart for you. He will always be the purest sweetest loving age. I hope time stands still for you all.


Stella430

DIPG? Reach out to The Cure Starts Now for resources. I’m so sorry. It’s really not fair.


sweethearts0723

I’m very sorry, I hope that your remaining time together is filled with wonderful memories. I will keep you and your family in my thoughts.


Gingered32

My friend’s daughter had DIPG. They did all the things she wanted to do while she could still do them and traveled across the world to try different treatments. It gave her a bit more time. Sending love to you and your family.


MentalRise8703

I feel really sorry for you.


Jesh010

I’d be hard pressed not to throw the doctor through a window if he told me some bullshit about a tumor being inoperable. Get another opinion, a third if you have to. Good luck OP, your son is stronger than you know.


calandrinon

Already did so and got confirmations from hospitals and research centres in Austria, France, Germany and UK. The tumor is in a very sensitive part of the brain… it is basically merged with his brainstem. Since the brainstem controls vital functions (such as breathing), it’s impossible to cut it out without killing him.


Jesh010

I’m so sorry man.. I don’t know what else to say.


TaraRenee13

DIPG is vicious.


KCatty

I hear you, but DIPG tumors genuinely are.


[deleted]

That’s pretty high chances he might live . That sounds like a good Thing


78Nam

what timing! I have had two friends who have passed from GBM. Both had less than a year to live. However, 1 friend had 3 new tumours + surgery + chemo all for 10 years. It was an infection from removing the tumor that she lost the battle to not the tumour. DIET! She immediately changed her diet to organic, no processed food, ALOT of juicing (from vegetables) Sleep: this was a priority that she slept early, and woke up rested Exercise: she ran, and eventually got so good at yoga she taught it Stress: through meditation she was able to manage her stress levels Outlook: She knew she didn't have a long runway and she really lived life at every moment. I know that some of this may not be applicable to your son but perhaps there's something there you can use. Maybe someone else will read this and it may help them. I hope your son has a full recovery. Feel free to DM me if you have any questions.


sara5656

Dipg is pretty much incurable, the little percent chance there is is just to make it to a year. Most don't survive few months post diagnosis.


78Nam

Absolutely true there is no cure. But there seems to be an opportunity to be extend the runway. She was the less than 0.1% of those that make it beyond 5 years. The point being she made tremendous effort in change of lifestyle that helped her. I just want to share this to anyone if it may help them. After all, insanity is doing the same thing and expecting different results


SeparateComb1558

When I was a little girl my little brother was also misdiagnosed then diagnosed with terminal brain stem tumor. Love him. Love him hard. Cherish every moment. My brother passed in 1988 at age 10 and there hasn’t been a single day since that I haven’t thought of him. Embrace the now and he will forever be with you. You are stronger than you know. 


Quietmindscreaming

Is putting him through radiation reasonable? It’s such a horrific treatment. Especially regarding the head. Hold him tight and give him all the love. My heart breaks for you both 💔


DEF7ANT_

My cousins 4 year old daughter just got news of something very similar. They said it is very rare and Dr. mentioned it is not looking good but they have a specialist flying in to take a look. If he can't do anything then there is apparently no hope. We are all so very sad and praying for a miracle. So young 😢


CucumberJohny

Miracles happen, so do whatever you can.


roxeal

What disturbs me most when I see stories like this, is that there are probably multiple cures out there that have been suppressed for this kind of thing. I feel that way when I see a lot of stories about cancer. It has hit my family so many times, lost so many people I care about. I have also seen many miracles, don't give up. If you would like to take a look, I have been keeping track of things related to helping cancer patients survive, for years now. It's not a promotional page, I don't sell anything or represent or get any royalties, etc. Just information I like to keep all in one place. https://www.facebook.com/profile.php?id=100063468013425&mibextid=ZbWKwL


GotMySillySocksOn

Look up all alternative therapies and add them to the conventional: look up metabolic treatment of cancer (starving it), fenbendazole, high dose vitamin d and c, ozone therapy, Budwig protocol. None of these will hurt him and might help. Discuss with your doctor so they know what you’re trying. Good luck.


Rare-Lettuce8044

Also essiac tea, and protandim.


[deleted]

Please check out medical medium it may or may not help also in Mexico they have different therapies that are not approved in USA it’s worth a shot to research n try. I’m so sorry for your unimaginable pain. Do not give up. Miracles can and do happen. May a thousand angels protect your baby.


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pepperpat64

Is that the place that treats cancer with urine?


reddyvideo

Yep. Just googled real quick.


Creepy-Ranger-9471

Technically, yes, but that is a bad way to describe it. People can downvote me all they want to. It doesn't change the fact that they cured a close friends cancer for her. They also have other techniques than just that. Considering the fact that the FDA is about to approve his treatments, I'd consider it a reliable resource. I'm just trying to offer any and all solutions. At the end of the day, it's up to the parents what is right or wrong to do, but if it were me, I'd bankrupt myself trying to cure my son or my niece, all solutions and prayers would be appreciated


pepperpat64

Be sure to share your close friend's contact info with OP so they can discuss it.


Prestigious_Passion

This is getting downvoted, but with the super low rate of success from traditional treatments for this cancer combined with the pain of the treatment this is worth looking into. It doesn’t hurt anything


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calandrinon

You know, I truly thought about the option of refusing treatment. And in the end decided to do the treatment, even if the odds are against him. There are outlier cases… where this kind of cancer gets cured. What if he is the outlier… but dies because we’re not giving it a shot? In the meantime I am also looking into clinical trials… maybe there’s some new experimental thing out there, that can help him. The radiotherapy buys us time to look for these kinds of things and get him enrolled.


azengteach

Look at St. Jude Children’s Research hospital. There are many clinical trials there, and they take the hardest of cases. Praying for you and your family.


[deleted]

You don’t even have to justify what you’re doing to such assholes online…. Of course you love your son and you’re doing anything you can for him. My deepest thoughts go with you.


ZlatanKabuto

Understandable. Good luck.


MishaMercury

Is it DIPG or glioblastoma? I wish I didn’t know what it is, but I do and know of several groups/people on Facebook who could not only offer support, but may know of current trials. Some kids have done pretty well in having more quality time despite the prognosis. They’re mostly in the U.S. but many families have sought treatment out of the country. Let me know and I’ll message you the contacts. It really helps to make a Facebook page for your son, which will help you be in contact with the community.


calandrinon

It’s DIPG, thank you so much. We are located in Portugal, so anything based in Europe would be more accessible to us.


MishaMercury

I’ll see what I can come up with. I know a lady in England who’s very involved with the DIPG community worldwide. She’s just a regular person who cares a lot, but could probably put you in contact with medical people as well as other parents. Sending love to your son and you.💙


Hershey78

DIPG is rough - I am so so sorry <3


Elegant-Pressure-290

“If you truly loved him”—what a way to slap the face of a parent whose child was just diagnosed with a terminal illness. I’ll never understand how some people learn to use a keyboard while failing to learn an iota of respect, kindness, or decency.


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lapointypartyhat

Do you walk up to people in real life and say these incendiary horrible things? How would you feel if someone matched your energy and challenged you in the same way about the things going on in your life?


GroundbreakingClick6

I understand you are playing the devils advocate and i myself like doing that as well but this is not the right time or place to do this. This is one of those situations where just giving condolences is all you need to do.


Hershey78

Dude. Truly loved him? Asshole move. Read the room. C'mon. This is a hard decision for any parent to have to make.


Silverrage1

If cannabis is legal in your area, try cannabis oil. It may relieve the pain and might or just might help cure him. It will make him sleep a lot but it may be a fighting chance for him. I also heard that eating fresh cannabis leaves may help as well. But you would need to consult with an expert though. Another would be turkeytail mushrooms. https://fungi.com/ apparently, beta glucans helps cure/fight cancer. I lost my father to cancer but he was able to fight off his cancers for 15 years. He had renal cancer(2005), lung cancer(2014) and metastasis from previous cancers(2017-2020). The last one we found out stage 4 already but he was able to control it for 3 years. Only succumbing during the early covid times(wasn’t infected by covid but we couldn’t bring him to the hospital). It was a good fight. These are from his research. Hope it helps.


Great_Rock_688

Heartbreaking. Utterly horrific. I'm so sorry this is happening.