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.

good news about the seizure free week droile - you're all getting there, a step at a time.

Next Tue morning?
So when is his biopsy?

Dear Droile, I don't know you but just wanted to add lots of positive vibes and to say that Alder Hey is a fantastic hospital. Best of best wishes to you all and your DS.

Hi Droile,

Not popped into this thread for a while as I've been away. Really glad that ds is currently seizure free. Keeping everything crossed that you have a date for the biopsy soon.

Pissed off on your behalf that your Round Robin didn't work. I know their your friends and all - but, what the hell is wrong with people! grrrr!

I know, hmc. I think that really, I fall between several stools in that each one thinks it doesn't apply to them. I should have bitten the bullet and done it by post - I may do that yet. To be honest, I feel as if I now can't be bothered and I've got used to being on my own - you know how you get petty about it in the end? That's where I'm at

Blu, we still don't know when the biopsy is! The oncologist guessed it would be in 4-6 weeks (2 weeks ago) but couldn't say because he didn't know the surgeon's schedule. The surgeon's secretary is like the scarlett pimpernel to get hold of, and when we ask the general secs and reception staff on the ward, they say we'll receive notification by post. In other words, they don't know either. I think the surgeon is probably very busy.

Thanks Ediemay, that's good to know.

I'm sorry you are not getting any support from your friends, even after your round robin

Glad to hear DS is still seizure free at moment.

Hi Droile,

Am amazed your round robin didn't work, what did you say when you called them?

Hope you get some concrete progress soon, I'm checking back on this thread regularly to see how you and your DS are doing.

Thanks Hula.
Dislocated, I said something to the effect that it had been lonely and I'd appreciate some visitors, because the limbo period was hard to take. I said I understood that people may be hesitating because of not knowing what to say or for fear of intruding, etc, etc. I said, to each one, do call for a coffee, won't you, and I'll try and call round to yours too... stuff like that. Each one made the right noises and so on, but I wonder if it sounded a bit like a summons. I really tried not to make it sound like a rebuke. Perhaps people now feel like they have to check in and make regular contact, and feel awkward and unnatural and unspontaneous.. I don't know. I'm just thinking aloud. I know it's hard to be in their shoes too.

Droile, thinking of you and your DS. Really sorry you're not getting the RL support you deserve .

What miseries they all are then. I was kicking myself when on Woolacombe beach this summer for not CATing you in good time beforehand to see if you were living anywhere nearby, with the hopeful objective of meeting you after corresponding with you here all these years. How could anyone just ignore a request for a bit of extra company FGS? At a time like this.
so glad he has been seizure free and is keeping cheerful. Wishing you all the very best for next Tuesday. XXX

Droile, I find it incredible that your friends still aren't lending you support with your situation. I can't imagine what they are thinking, tbh. I hope virtual support from MN goes a little way to filling the void - if only we could send coffee, chocolate and alcohol down the internet wires!

Droile - I can't believe they haven't responded to such a simple and direct plea, like suedonim says, hope we can fill the void a little.

Ah, that would have been nice Marina, but we live in the northwest and were only in Woolacombe visiting friends last year.
Mumsnet is helping a lot, and so are the couple of good friends I do have, but they aren't nearby and can't drop their lives, so I was hoping to spread it all thinner.

Durr, of course. You would hardly be trekking from N Devon to Merseyside for your son's treatment. I wish there were more of us nearby you at the mo. How are you and dh doing? X

Hi Droile, great to hear that ds is still seizure free. Sorry for taking so long to get back to you! We're not exactly sure what the patches are on her MRI, but her consultant mentioned "tuberous sclerosis" which sounds horrendous and in a lot of cases is quite serious. It's basically (I think - if anyone has any greater knowledge, please feel free to butt in!) learning difficulties from mild to severe and problems with various organs in the body. They are leaning towards the TS diagnosis but only because dd has little white patches on her skin (which look a bit like scarr tissue). She has no learning difficulties whatsoever and the only other thing she has is epilepsy. They have recommended that she go for a genetic testing, a CAT scan, a kidney (or liver) scan and is seen by an optician as any problems in these areas can all point towards a more firm diagnosis. As we are now in Holland, this process is taking quite a while as she hasn't even been referred to a paediatrician yet! (Sorry to waffle on a bit)

I hope your ds remains seizure free and good luck at your appointment. Hugs, Kando xx

I hope you get a proper dx soon, Kando. DS was looked at for TS - they searched for skin patches every time we went for ages, but only found 1 or 2.

We are coping better as time goes on thanks, Marina. I think we're getting used to it, and as he hasn't had his biopsy yet, everyday routine is still normal. Lack of seizures is wonderful and I'm sure he is cheered up by the freedom.

Hi Droile, godd to see your name come up and glad your little soldier is doing ok, as are you by the sounds of it.
TC xx

Hi Thomcat, xxx

Hello lovely. You ok?

I'm so glad the seizures have stopped for the moment and things are feeling a bit less horrible, Droile. Lots of love to you.

Thanks Scummy.
Hi Thomcat, yes, I'm ok thanks.
Perhaps I'd better start a new thread, as this one looks like it'll be taking off down the M6 soon.
Thank you to all you lovely mumsnetters for making it so long!

Thanks Scummy.
Hi Thomcat, yes, I'm ok thanks.
Perhaps I'd better start a new thread, as this one looks like it'll be taking off down the M6 soon.
Thank you to all you lovely mumsnetters for making it so long!

Thanks Scummy.
Hi Thomcat, yes, I'm ok thanks.
Perhaps I'd better start a new thread, as this one looks like it'll be taking off down the M6 soon.
Thank you to all you lovely mumsnetters for making it so long!

whoops!