DS has brain tumour

[Clarinet60]

We finally got his MRI yesterday after waiting 5 months and there's a mass in the area that joins the 2 hemispheres. Of course, it was all systems go down to the childrens hospital in Manchester because the signs are that it's fast growing, that's why he's gone from 'funny turns' to daily seizures and then to 50 seizures per day. But when we got to Manchester, surprise surprise, they're not going to do his biopsy until 'some time next week' - he'll be slotted into their system.
So we came back home again.

He's well in himself, bouncing around like mad.
I'll let you know more when we know more, re benign/not.

sorry to hear about the news.... im sending some postive vibes to you {{{{{{{{{{positive and get well}}}}}}}}}

Oh Droile, i'm so sad to read that DS's seizures are down to a tumour

I have everything crossed for a positive biopsy outcome.

Droile, can barely imagine what you must be going through, it must be hell on earth - my very best wishes are with you all.

Sending you all the best wishes I can

Very sorry to hear this droile

best wishes to all the family xxxxxxxxxxxxxxx

Not sure what to say but wanted to post. Best wishes for you and your family xx

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Oh Droile, I am so sorry that you and your family are going through this.

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Oh you poor thing. I heard a program on radio 4 a few months ago where they said that some extremely large proportion of children with with brain tumors have them operated on and recover fully with no later problems at all.
I spent a year with an english family many years ago and one of the sons is now one of the leading paediatric neurosurgeons in the uk. His name is Conor Mallucci and he is in Liverpool. Might be worth trying to get a hold of him if you find you want more information or help. If you need to use my name to get him on the phone, feel free.

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So sorry to hear this.

So sorry to hear this Droile. Fingers crossed for next week.

Prayers will be said for a speedy recovery.

Sorry to hear this. Wishing you all the best.

Droile, what awful news. WIshing you all the best.x

Thank you for all these lovely messages.
That would be brilliant sophiames, I'll take you up on that. & rickman, I'd like to know as much as poss from your friend.

We've had a better day today in that we've seen his main neurosurgeon and he's gone into lots of detail and treated us kindly.
Although he doesn't want to give it a technical name until they've done more tests, the tumour is the size of a brussel sprout and appears to be benign. They can't do a biopsy until they've found out how it's attached and what blood vessels are serving it, because there's a risk of vessel rupture and stroke. So they're going to measure & monitor it over the next 2 months to observe changes & growth, via scans and more tests. Then biopsy (2/3 days in hospital) and possible removal (no details about that procedure yet). If it did turn out to be malignant, they would do chemo, etc to shrink it before removal, but the blood result, when they come, will give us more clues about that.
So we're pleased because it seems sensible to find out what you're dealing with before poking it around.
As for how I'm feeling, I'm much better today and so is DH. From the moment they showed us his scan results on Thursday and told us, we've been completely numb, but now we're thawing out because we can lead a normal life for the next 2 months, apart from his tests. On Friday I was consumed in rows with the staff on his ward in Manchester who were telling us nothing and who wanted me to sleep in a chair beside his bed while he received no treatment whatsoever, but this was a mistake and they've apologised now. The trauma of that kept me occupied, which may have been a good thing, but it made me very irritable over trivial things. I'm sleeping now, but food still tastes like cardboard.
Sleepyjess, 2 hour seizure, that must have been horrendous - the longest we've had has been a minute. You poor things.
WWW, I don't think there's anything you can do apart from send me information, but these messages are really helping. The positive outcome stories about brain tumours are very reassuring.
(He's 3 yrs old)
xxxxxxxxx & thanks.

Droile, I don't know how I've missed this, I'm really glad to read your update and have everything crossed for you all (great to hear that he's bouncing around anyway ).

SofiaAmes's old friend was on Case Notes on R4 recently (about halfway down the page) talking about brain tumours in children - he says some very reassuring things.

Thanks Janh, that was fascinating and very reassuring. I didn't realise Alder Hey was a top brain tumour centre. I asked his paed neuro to transfer him there on Friday when I was so disgusted at the Manchester ward, but she wouldn't, and didn't tell me it was a leading centre. Hmm. The facilities for parents and children there are supposed to be top notch, and if it leads in brain surgery too, perhaps we need a re-think.
Thanks.

I'm sorry to hear your news Droile.My sister is nanny to a little girl who has a brain tumour.Hers isn't malignant,put is inoperable.However she has had some sort of treatment & has come on in leaps & bounds since,she is hardly recognisable as the same child now.She has no ill effects at all from it & just has regular checkups at hospital.

Thinking of you all & sending positive thoughts.

droile, i'm so sorry i hope the prognosis turns out to be good.

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