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.

sending lots of virtual hugs to you and your family xx

Thanks for the case notes link. I read it further down this thread the other day, but had forgotten the detail. I think it's me who needs a check up from the neck up.
I feel really strung out and can't settle to anything, even though there are loads of jobs I need to do (not that the kids will let me do them).
I keep reading this thread over and over, I'm so grateful for your messages.
I think I need someone to talk to, but when I'm with friends I pretend to be normal so that they won't feel terrible. Everyone is really busy, too.
Just needed to offload.
I'll let you know what the GP says.

droile, don't worry about the housework, love. and don't try to protect your friends/family from what is happening. i think i'd be in a heap on the floor most of the time if i was in your position, so go easy on yourself. once you get referred i'm sure the hospital teams can put you in touch with other families - or you'll just get chatting, xxxxx

The team at Manchester are good, but the facilities are dire and we got off on the wrong foot with the staff. It's a long story. The main neurosurgeon is pleasant and apologised for what the others had done, but if you have a choice between between an all-singing-all-dancing centre and a place with identical treatment excellence but set in a non-too-clean, non-too-friendly dump with no playroom (apart from a cubicle with 6 toys) where the smell of cigarette smoke drifts down the corridors....

Well quite Droile - I can see what you mean.

eeeek. not sure about the neuro unit (we didn't actually meet any families but it did look v new) but lots of other units had families from staffordshire, oldham, places like that for inpatient treatment.

Droile - I'm so sorry to hear about poor little ds being so ill.

Thinking of you and sending you and your family very best wishes.

Please offload here anytime you like and I hope it helps you to cope.

Droile please keep offloading as you call it, you're sounding very together to me, I can only say how sorry I am that you're having to go through this. Best wishes to your little ds in the meantime.

Thinking of you Droile.

I thought we went thru hell recently with ds's surgery on his ear, but frankly thats a doddle compared to what you and your ds are having to deal with.

Love to you.

Good grief Droile I have only just seen this. You have been much in my mind (especially after we sat nervously on the beach at Woolacombe last summer) and I have been wondering how you are.
I can only add my very best wishes to you all for a safe and speedy outcome for your dear ds and your family.
Lots of good advice here but you cannot do better than tap into Wonderbundle's expertise and contacts.
Sending you much love. So appalled it has taken this worrying situation to bring you back to us.

i just do what i can..

Which is a very great deal as I have cause to thank you for

Sending you and your DS positive thoughts and well wishes......hope all turns out well for him

but seriously, the only thanks I need is for droile's ds to get the treatment he needs (pref in a spanking new unit )

Droile, I am so very sorry.

I do some writing work for one of the big neurosurgery hospitals - it probably isn't much help, but do let me know if I can try and track down some consultants at least to talk to.

Message withdrawn

Oh my goodness, Droile, I've only just seen this. Wishing you, your familiy and your little DS strength for the time ahead.

And something I have just thought of - have friend who is a Ward Sister at National Neurological Hospital (title?) in Queens Square in London. I could ask her for some advice too.

That's the hospital I do stuff for so I could help out on that one as well, Marina.

droile

just seen this thread - so sorry to hear this news - hope the biopsy is done quickly and that everything turns out fine

fingers, toes, legs and arms crossed
MP

Droile, only just seen this but wanted to offer love and support to you at this anxious time. Hoping so much that everything turns out fine for your little boy.

xxx

Go, MI. My pal is only doing the odd shift at the mo as she has a young child so you are probably able to get some names sooner than I. Fabulous, awe-inspiring place.
I wish we could all do more to help Droile.

droile...can't think of anything to say except i'm thinking of you and that he is lucky to have you both as parents....x

Droile, I have nothing useful to add but you have been in my thoughts a lot since I read this - take any and all help that wonderful MNers can offer, and hang on in there.

I'm in Cheshire (Macclesfield) btw - not very near, but not too far if you ever need beds for the night, or a meal...whatever.

Droile,
Huge hugs and much love to all of you at such a worrying time.
Really thinking of you and hope to read some enouraging and positive news soon. Please give your ds a huge mumsnet hug from all of us.