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.

WoW! The server hasn't let me on all night, so it's wonderful to come back to this. Thanks all of you, thanks for the bed offer Marthamoo, and Marina & Bundle & MI, thanks for the offer of info - I'd be grateful for anything you can find out.
Good news from the GP - she fully understands and says that because of the Patients Charter, we can choose where we want to go and she'll refer us to Alder Hey! She says that all of the specialist centres, including Manchester, will give excellent care, so not to worry about either transferring or staying put.
So that's a relief and I feel much better tonight.
Marina, I can't believe it's nearly a year since the cliff nearly fell on DS as he lay on Rockham beach! What a load of near misses he's had.

omg droile how on earth have I missed this? Thinking of you and your family xxxxx

Thanks Mosschops, that's reassuring. Hope your experiences as a patient was positive.

Good news Droile, I'm so pleased that your GP has been able to reassure you that you can be referred to your hospital of choice

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Thats great Droile, if you ever need any help with anything send me a CAT, I live in Liverpool and don't mind being sent out for illicit pizzas if you get fed up of ronald mcdonald house and the canteen..

droile, that's lovely news

I'm glad you got your referral to Alder Hey - and I hope it's nicer than Manchester (have you been at MRI or Wythenshawe?) Reassuring to know to know you're going to the best place possible.

So glad you have the option of Alder Hey Droile.
Lots of love and keep us all posted as and when you can. XXX

Droile - still thinking of you - have nothing helpful to offer - but do have experience of DS going through operations and being in hospital - and know how frightening and stomach-jolting it is beforehand - but how much more re-assuring and 'normal' it all seems once you are actually in hospital and getting on with it. Children sail through being in hospital - will come back and see if i can help once you ar approaching the 'nitty-gritty' of being admitted.
XXX

Droile, hope everything goes well for your ds. Your GP sounds great and I'm sure you'll be getting the best of treatments.

Thanks all.
Marthamoo, we were at Pendlebury.
Thanks Fastasleep!
Blu, yes, I can imagine it being better once we're in and actually doing something. This waiting time is stringing me out, but having said that, I'm glad we're having some time off first to digest it all. We're going away for a few days next week for a treat, before it all begins.
xxx

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Droile -I really don't know quite what to say

I know you will do a splendid job of keeping it together for yor DS and the rest of the family, but if there is anything at all we can do to help you through this difficult time, please shout!!!

hey Droile I am sorry to hear that...I really hope that all works out ok and that when you and little one goes back you are tended to as the best......please let us know what happens with the little one......take care both of you.

Hi, I'm so sorry to hear about your son. I lost my son in 2002 age 4 after a 15 month battle with a brain tumour. It didn't work out for us but no reason to think that it may not for you. If you need to talk please email me and I'm happy to chat ([email protected]).
Have you heard anything about the link between childhood brain tumours and aspartame? It's the crap they put in our kids drinks and diet drinks when they take out the sugar. I don't touch anything now that says no added sugar - sweetner can't be broken down by the body, sugar can! We only buy high juice now and don't touch anything with sweetners in.
Hope you are doing ok.
In my prayers.
Sarah xx

Good luck Droile, Mr Malluchi in alder hey is excellent (just had a new baby boy himself) he trained in Nottingham (also an excellent centre).

Good luck Droile, Mr Malluchi in alder hey is excellent (just had a new baby boy himself) he trained in Nottingham (also an excellent centre).

Droile, my thought and prayers are with you. I hope your son gets good treatment at Alder Hay & quickly.

Did you see the program on BBC last night - about a neurosurgeon in London. I think he was dealing with similar problems - maybe it would be worth doing a search of the BBC website to find if there are any contact details or support groups.

Just seen this thread Droile. What a worrying time for you all. Don't know what to say really- sincerely hope that all goes well for your DS xx

Sarahx2005

It's really brave of you to support Droile after what you have been through. Droile mentions that for her ds it looks like his tumour is benign - so everybody is rooting for that obviously.

So sorry to hear about what happened to your family though

Thanks Sarah, it's very kind of you to get in touch and I will be emailing you.
Have you met him, Renaldo? He certainly sounds good.
I did see the programme last night, or rather, we taped it. Very timely.
Thanks Mears and everyone.

Droile - I hope the program doesn't upset you. I think I would have found it generally encouraging if I were in your place. But it may be a bit close to home for you at the moment.

They were dealing with epilepsy - is that what your ds has been diagnosed with ?

I know very little about it - but from the program last night it seemed that the epilepsy/seizures were coming from a part of the brain that was "abnormal" - not sure if that is what you would define a tumour as.

Whatever, I really hope you get things sorted out for your little boy and that you have confidence in the surgeons/doctors.

Droile - glad you will have a few days away, and hope you all enjoy yourselves.
When you first discuss the surgery with your consultant, ask for an early theatre slot - keeping young children off food and drink before an op is much much easier if surgery is as early as poss in the morning. Most hospitals are aware of this and will do it anyway - but just give them the nudge.
Where are you going on your hol?