DS has brain tumour - update

[Clarinet60]

We went to Alder Hey yesterday and they were very efficient in terms of ordering a second scan for this Friday, etc, but we are back to square one in terms of whether/when a biopsy will be done, because the person we saw wants to start all over again and let his own team decide. This is worrying, because the oncologist at Manchester said ds needs a biopsy - I just hope the new team agrees. Also, we were wrapped over the knuckles for changing teams because they are all good friends together. I lost a lot of sleep last night fuming about the injustice of that, because the Manchester team lost letters, ignored requests for blood test results and generally had a 'some time any time' attitude that didn't put ds's welfare first, etc etc. Mustn't rant, this is supposed to be an update! So, scan on Friday (to see if it's grown) after that, who knows?

Droile. That's just so devastating and unfair honey. I'm absolutely gutted to hear this and wish with all my heart it wasn't happening.
Agree with blu that you are being a very wonderful mum. I'm sure that's not much comfort but it is very striking.
Please let me know if there's anything I can do, now or in the future. Lots of love to you and your husband and both sons.

Thanks so much, to everyone.
Tinker, I've got the number of a friend of a mumsnetter who has been through something similar but we haven't spoken yet, and now with princesspeahead's friend too, it would be a good idea to get in touch.
Morocco, we're further north than Manchester, but it would be nice to meet up.

Droile so sorry to hear the news. Hope you can stay as positive as this situation allows. Thinking of you and your family.

I haven't posted on your threads before but just wanted to send lots of good wishes to your little boy and all your family. It's so hard to think of anything to say.

Oh Droile, my heart goes out to you all. So unfair and frustrating (major understatement) that the news isn't more positive. If there is anything I can do, absolutely anything, please CAT me. Hope you are coping ok today. You are a tower of strength. xx

Forgot to say that I'm in Manchester too and am on maternity leave until next year. CAT me if you want to meet-up.

Droile, I am so sorry to hear this news. I would be happy to contribute to Ronald McDonald at Alder Hey and as my children are not far off the ages of yours I wonder if your ds' would like to receive little presents in the post, or some other treat?
If you plan to visit London with them and see the sights at any point, there are lots of Mners at the other end of the country who would be pleased and honoured to make your trip super-special in some way or other.
I wish there was more any of us could do but we can listen, or make phone calls...in that hard-to-explain way, you have so many cyber-friends here to help in whatever way we can.

Just thinking of you - I have followed your story from time to time and was hoping for an easier way forward for you. Macmillan nurses have an excellent reputation - can you see one as soon as possible?

droile, sent you an email. hope that helps...
x

Droile - I am so very sorry to hear this news. Like everyone else I had been keeping my fingers crossed for you.
My FIL had a "spider" tumour removed from his brain 6 years ago. He didn't have chemo though (don't know why). I know it isn't the same as a child but if you wanted to ask anything then I'd be happy to answer. My MIL would be able to fill me in on the bits I don't know as she kept a diary of it all.
Warmest wishes to you all.

Thanks again, esp to those who've emailed.
I really want to ring you, but I'm still having wobbly voice problems. Yoyo, that sounds interesting about your fil, I've never heard it called a spider tumour before.

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I have been following your story Droile, but not getting much chance to stay online for long at moment. I am sorry sorry the news wasn't more positive. I wish truely you weren't going thorugh this and my heart goes out to you and your family.

If there is anything we can do, you only have to say.

Droile, I'm thinking about you and your family, especially your little DS.

Really sad to hear this news. I hope you get to see the Macmillan Nurse soon, used to work with them and know that they are fantastic. Thinking of you XX

droile, very sorry to hear your latest news.

Can't think of anything else to say really. I don't know where you live, but we are not so far away from Alder Hey either, so if there's any way we could help please CAT me. (I don't know what your boys like but I have 2 large and enthusiastic footballers...)

I understand wobbly voice thing completely but we could communicate by note

(We are N of Manc too)

So sorry you're going through this Droile. I've been following this but not posted until now - just didn't know what to say I guess, but please know that you are all held in my thoughts and I hope things somehow improve for you and ds2 soon. Wish I could be more helpful.......

Oh Droile - I so wish it had been better news. I just don't know what to say - I can't imagine how you must feel. If there is anything I can do - just CAT me, I'm in Cheshire which is not too far away. My thoughts are with you all - though that seems so pitifully inadequate. I'm sorry.

I'm listening and appreciating but words are escaping me tonight.
xxxxxxxxxxx

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Droile, I completely understand your wobbly voice thing.
Are you and DH ok together? Wobbling together?

Just wanted to say goodnight Droile before I sign off tonight. Now, like often, I am thinking about you all.....

Hi Droile - so sorry to read your news. Don't know what else to say. Thinking of you all, mears.