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Original poster

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:
Hulababy · 29/09/2005 08:25

I am glad the op went well.

Amanda1 · 29/09/2005 08:43

Message withdrawn

Hausfrau · 29/09/2005 08:47

This reply has been deleted

Message withdrawn at poster's request.

teeavee · 29/09/2005 08:53

I'm also v. glad all went so well.

bundle · 29/09/2005 11:09

this is the best news, well done for hanging on in there droile and lots of love to your family, xxxx

SoupDragon · 29/09/2005 11:11

Glad it went well

kando · 29/09/2005 11:12

Fantastic news droile. Big hugs to you all.

doormat · 29/09/2005 11:12

Droile so happy for you.

binkie · 29/09/2005 11:15

So glad to hear from you, and your brave boy!
xxx

Toothache · 29/09/2005 11:17

Great News Droile! Here's hoping the news just gets better and better.

Monstersmum · 29/09/2005 11:20

Very happy that all is going well. You must be so relieved to be out of that waiting around time.

Happy thoughts!

iota · 29/09/2005 11:30

Droile - -so pleased to hear that the op went well. Best Wishes for the next stage

jabberwocky · 29/09/2005 11:34

So happy to hear that things went well, droile!

motherinferior · 29/09/2005 11:50

Oh good
xxxxxxxxxxxx

mymama · 29/09/2005 12:24

Good news Droile.

Marina · 29/09/2005 12:31

Such a relief to hear from you, and so glad he is home and doing so well. We have all been thinking of you so much Droile XXX

jacobsmummy · 29/09/2005 13:18

lots of love and hugs to you all and lovely DS

Original poster
Clarinet60 · 29/09/2005 13:56

He is doing really well today, so happy to be home. He's going from toy to toy in a really happy mood. I'm absolutely bushed, but glad to be home too after all that time away. You really exist in a bubble in hospital - I've totally lost the art of cooking and washing up. We stayed in the Ronald McDonald house, which is a house full of accommodation for parents with everything you need. Comfy beds, en suite, all charity-run and an absolute Godsend. We met some other nice parents there too, and on his ward, so the experience was as bearable as it could be.

Waiting for him to come out of surgery was the hardest part, obviously. He was in for 4 hours. I had wobbly legs and a strange light-headed feeling for the best part of 3 days. But Mr Mallucci is so lovely and positive and energetic that you are carried along with the feeling that everything is going to be ok, and that really helps. No wonder everyone wants him .

The tumour extends some way below the corpus callosum, but how far we don't yet know until we get the MRI results. The histology results take ages too, which is hard, but we've sort of got used to it now. His seizures remain under control, which is great, not least because if they hadn't, we'd have had to stay in hospital. One poor family were going to be in for over 6 weeks for this reason.

OP posts:
singersgirl · 29/09/2005 18:53

Really pleased that he's recovered well from surgery - I'm sure it's lovely to be home! All good thoughts for the next treatments.

Gem13 · 29/09/2005 19:06

So glad to hear everything went well and you are all home.

I hope you are looking after yourself too. I can't imagine the stress and worry you've been through.

Janh · 29/09/2005 23:34

Droile, I've obviously been out of the loop for a while - how did you manage to get to Alder Hey? Last I heard you were stuck at Pendlebury(?).

Glad you did though, he sounded so great on that R4 programme.

Don't worry about the washing-up. DH can do it

Original poster
Clarinet60 · 30/09/2005 15:08

Hi Janh,
The GP referral finally came through. There was a bit of a contretemps initially, which I talked about on the thread, but once that was over he had us in the following week with no messing about. It was really smooth, fast and efficient and we felt really safe with him and the whole team. So, after a very shaky start, things finally moved.

OP posts:
DissLocated · 03/10/2005 13:08

Glad to hear it all went well Droile and fingers crossed for his future treatment. I think it's probably time to treat yourself to a hot bath and a glass of wine!

morocco · 04/10/2005 00:05

that's fab news droile
I'm glad you didn't have to stay in too long, how awful for that family that had to stay 6 weeks - it would be enough to drive anyone round the twist. Glad they looked after you all so well.
remember to look after yourself too m'dear - put your feet up when you can.

Blu · 04/10/2005 00:53

Droile - just got back from 2 weeks away - I thought about you, and those dreadful hours of waiting during the operation, and am so relieved that the surgery went well.

It must be such a relief to have your precious little bundle home as a family again. How did your other DS cope with it all?

Were you expecting chemo and radio follow-up?