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DS has brain tumour - update

381 replies

Clarinet60 · 14/09/2005 11:01

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?

OP posts:
blueteddy · 27/09/2005 22:00

Thinking of you.x

ponygirl · 27/09/2005 22:19

Droile, thinking of you and your ds. x

morocco · 27/09/2005 23:24

thinking of you droile x

jabberwocky · 28/09/2005 00:01

Droile, have been following this and just wanted you to know I'm thinking of you and your little ds.

Gilli · 28/09/2005 21:38

Droile, have only just rejoined mumsnet and found your news: I am praying today went well for your DS....hugs

WideWebWitch · 28/09/2005 21:40

Thinking of you and your boy Droile.

tigermoth · 28/09/2005 21:43

oh droile, I am thinking of you, I so hope the operation went ok. xxx

doormat · 28/09/2005 21:44

Droile hope everything goes well.
thinking of you all
xxx

Clarinet60 · 28/09/2005 23:47

Just got back late tonight - the surgery went really well. They removed as much of the tumour as they could - it extended deep into dangerous areas, so they had to leave some. He'll return for chemo or radiotherapy in a couple of weeks. It's an astrocytoma, grade 2 they think, although won't know for sure until his full results come back, which takes time.

He recovered really well and I'll go into more details tomorrow - tired now. He's eating and drinking and playing with trains just as if nothing has happened! Everyone at Alder Hey was lovely.

OP posts:
Janh · 28/09/2005 23:52

Oh, Droile, what a relief to see you!

So glad to hear how well he is atm, and hope chemo and/or radio will work their magic on the rest of the tumour in due course.

ediemay · 28/09/2005 23:53

how fantastic - bless him with his trains. I hope you get a good sleep tonight

suedonim · 28/09/2005 23:58

It's great to hear your good news, Droile. Bless your little ds - he sounds like a real trooper!

butterflymum · 29/09/2005 00:07

That's great to hear that the op went well and he is in good spirit. There will still be many doors to go through but at least the first one can be closed and you can all take positive steps towards the next one. Take care of yourselves and continue to be strong.

butterfly

Clarinet60 · 29/09/2005 00:08

Sorry to have made you all worry from lack of posts, but I was totally stuck down at Alder Hey It's a 2 hour drive with traffic, and DH himself only came back twice. I asked him to post on mn for me, but I just got a 'look'. I had Potty's number and wanted to phone her to put a post on for me, but every time I picked up the phone, my voice just got choked.

OP posts:
Janh · 29/09/2005 00:10

Ohhh noooo, don't feel bad Droile, it's just really nice to hear from you and with such good news

lanismum · 29/09/2005 00:17

great news, so glad he coped with having the op so well!!

handlemecarefully · 29/09/2005 00:42

Droile,

really pleased that the op went well and that he has recovered so quickly from major surgery...

HuggyBear · 29/09/2005 03:15

((( droile and family )))

PollyLogos · 29/09/2005 06:10

What lovely news to see first thing in the morning! So glad that the op went well, it's amazing how quickly children recover from them isn't it?

Very best wishes for the next stage.

LadyTophamHatt · 29/09/2005 07:07

I have no idea how I've missed this updated thread, droile.

I'm never really sure what to say on threads like this but I felt disrespectful reading it all and not posting.

I'll just say you're all being very brave and my heart goes out to you all. I hope Ds make a good and speedy recovery.

(emmatmg)

ggglimpopo · 29/09/2005 07:48

Message withdrawn

tigermoth · 29/09/2005 07:55

droile, I hope you can take it easy today - you must feel so drained from all this. So glad to hear you ds is feeling so well and the operation did such a lot to aid his recovery.

potty1 · 29/09/2005 08:08

Droile - so pleased to read your post this morning. Glad he's recovered so well.

Hope the results come back soon and you can get on with the next step, in the meantime take care of yourself.

dejags · 29/09/2005 08:23

Thank you for letting us know how you are all getting on. I have been thinking about you all.

Glad to hear that your DS is recovering well. Keep us posted.

dejags
x

Hulababy · 29/09/2005 08:25

I am glad the op went well.