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[banabak]

Starting this thread in case anyone wants to chat. It's a few years down the road since my child's diagnosis, but I remember the first 6 months as if they were yesterday. It's the long haul for my child with a brain tumour that will go through periods of growth/progression

My DS age 5 has just been diagnosed with a brain tumour in his cerebellum. I feel completely abandoned, although we have ongoing access at our local hospital we won't be seen by the specialist in Leeds until January 2024. Although this is only a few weeks it feels like forever.

His paperwork says 'Probably low grade glioma' and all I do now is Google everything and terrify myself.

I guess I'm just looking to hear from People who have been in a similar sisituation and hopefully some stories of children who have survived this horrible illness. All I can think at the moment is what if this is our last Christmas with him 💔 .

To see your child go through this just rips you apart, no child should have to experience this!

Hey. This was us almost 2 years ago. My daughter's turned out to be a low grade (grade 1) glioma.

I'll PM you

@Hismummyforever we're here and we've got you. My dc has a low grade glioma in the cerebellum/brain stem. The one thing I've learned over the past few years is how much we need people in the same boat, we get it.

My child had a high grade tumour in their cerebellum. Still here, fit, well, doing sport and spending time with friends. I thought they wouldn't see their next birthday or Christmas . In hospital (outpatients) we met a boy with low grade tumour diagnosed at preschool now about to transition to adult care. But wish you could be seen sooner- you will feel better once there's a plan. Brain tumour support and brain tumour charity have nice people who know how you are feeling like banabak and somuchgoo.

So we finally got to see the Neuro doctor on Friday and found out DS's tumour is in an inoperable position- in one of the pundacles connecting the cerrabellum to the brain stem and surrounded by healthy tissue that would cause so many detriments his quality of life would be basically non existent.
So now we wait for confirmation after his next scan whether this is low grade as they are thinking or not. How do people actually carry on and not put their whole life on hold?! I just hope and pray every day for something positive when he gets that next scan (although the poor boy is already mentally traumatised it's going to be a battle to even get him to the hospital!)

Life is so cruel xx

😢

I'm sorry it seems like a tricky one.

Don't be afraid to get a second opinion on operability. And a third etc, but for now, see what treatments they do offer that can hopefully shrink it.

As for how you carry on and not put your life on hold, if you find the answer please let me (and many others in this position) know. I think we just muddle through.

We are waiting for scan results this week, and tensions are so high in the family. In terms of finding a new firm of normal to muddle through, go easy on yourself. The wait to find out if it's low or high grade is probably one of the worst parts. For us, as they operated (90% gone, 10% now left), the wait was only a week, but it is indescribably hard. Take whatever support you can and just concentrate on getting through each hour. It won't be much comfort to you (it wasn't to me anyway), but they must be fairly confident of it being low grade if they are waiting until next scan rather than starting chemo immediately.

When first diagnosed I didn't know if she'd still be here a month later. I didn't know if she'd make it through surgery, complications etc. But here we are, not currently on any treatment, and being more hopeful.

I'm on a FB group for low grade glioma families. There are a lot in a similar situation to you guys, and inoperable for low grade often means ongoing treatment etc, but it's rare that they can't control it. And some have been told its inoperable, and some hot shot American doctor gets it all out. I'm not sure I'd take the risk personally, but it might be good to seek out similar there for support.

Hugs x

@Hismummyforever it's a new way of living. I don't think waiting for results or news ever gets easier, and certainly it never gets easier when there's headaches, surgery etc but the 'normal' parts in between definitely becomes easier. And I am someone who could never have imagined saying that for at least the first 18 months post diagnosis (and anti-depressants help too).

@Somuchgoo fingers crossed for scan results.

Hi I'm new here but I'm searching for anyone going or been threw the same as myself, my daughter has been having problems with her tonsils snice January this year she has been on lots of antibiotics and nothing will help her, we were referred to ent where the lady was speaking to us and after examination she said yes I think we should take these out me and my daughter were over the moon but she mentioned a word malignant basically she needs them removed the old way with a scalpel and sent to a lab. Now I didn't know what malignant was until I googled it and basically they are testing my princess for cancer, ( I phoned her back to confirm) she's as white as Casper not really eating much energy levels down she hasn't gotten rid of the cough she has and basically I'm just out of my mind with worry, has anyone else been threw this before should the lady have said cancer, and what are the chances it is cancer

@vickiexo sorry you are so worried. When is the surgery? If the doctor thinks there is something dodgy looking I would expect the surgery to be done quickly. You probably need to phone back and ask about timings and why she thinks there might be a problem. Good that the doctor is alert and looking at it. Good luck with it, keep us posted.