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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:
Socci · 13/10/2005 23:53

Message withdrawn

batters · 14/10/2005 10:16

This reply has been deleted

Message withdrawn at poster's request.

teeavee · 14/10/2005 10:19

I'm thinking of you all as a family - stay strong, and be there for each other.
xx

Blu · 14/10/2005 13:37

Droile - we're here thinking of you, even if you find that you just can't reply. How do you think you will spend the weekend?

RnBlood · 14/10/2005 13:44

Droile - I cannot put into words how sorry I am to hear your news. All my poistive and best wishes to you and your family x

tamum · 14/10/2005 13:47

I'm still thinking of you all too.
xxx

blueteddy · 14/10/2005 13:49

Message withdrawn

Original poster
Clarinet60 · 14/10/2005 14:38

Thanks everyone.
I don't know how we'll spend the weekend really. DH and I are just in our separate corners atm.
I'm going to give Ang a ring Rickman, I'm determined, no matter how long it takes. but thanks.
I think we'll get used to it in a few days, but just need some time out from being a human being - that feels the right thing to do.

OP posts:
Issymum · 14/10/2005 15:35

This reply has been withdrawn

This has been withdrawn by MNHQ at OP's request

Blossomhill · 14/10/2005 15:39

Droile - I have been following your posts and like many on here really cannot find the words to say what I would like to. However I really wanted to send you all of my love and positive wishes to you and your family xxxxxx

Blu · 14/10/2005 16:12

Retreat as much as you have to Droile. Shut yourself down and go onto auto-pilot if that's what you need to do. You must be shocked ridgid. I wish we could take it in turns to be you for a while, to give you real 'time out' - to live this for you, instead of you having to live it all yourself. If I could, I would do some of it.

soapbox · 14/10/2005 18:35

Droile - its not much to offer, but we are away the weekend after this (22nd and 23rd) from Friday - back Sunday. If you wanted a couple of days away, near to London, you would be most welcome to stay here!

If that weekend doesn't work then we are also away the following one (29th and 30th weekend).

So if you fancy a change of scene just shout!

LadyTophamHatt · 14/10/2005 18:41

Just seen this update again I'm sorry but this is another occaision where words fail me.

I'll just send you and you family my love and best wishes for some positive news soon.

xxxxx

(emmatmg)

HausOfHorrors · 14/10/2005 18:46

This reply has been deleted

Message withdrawn at poster's request.

Mirage · 14/10/2005 20:46

Droile,I am so sorry to read your news.I wish that there was something I could do to help.

Does your DS like tractors,animals ect?I know that you are north of Manchester,but if you ever find yourself in the Midlands,you are more than welcome to bring him & his brother on a visit to my Dad's farm if you think they'd like it.

Thinking of you all.
Mirage

puff · 14/10/2005 20:58

Droile, I haven't posted on here before - just haven't known what to write, but have been thinking of you often.

puff xx

Original poster
Clarinet60 · 14/10/2005 22:04

Soapbox, it's a tremendous amount to offer, I'm touched beyond words and so was DH when I told him.
Blu, that's an amazing wish, I'll never forget it.
Mirage, that's lovely. We live on a farm too, but someone else's is always much more fun.
Issymum, you're right, thanks.

Tonight, ds called candy-floss 'candy-frost'.

OP posts:
bunny2 · 14/10/2005 22:16

Droile, I have never been able to think of anything constructive to write here till last night when I remembered someone I wnet to school with and was good friends with for a while. She had a brain tumour and it was successfully treated. She went on to be the biggest party animal ever then got married and settled down to raise her 3 children. In other words, she is having a wonderful and very 'normal' life.

Although I dont know you, I think about your family alot.

soapbox · 14/10/2005 22:23

Droile - its just an empty house - not much at all really

Its yours if you want it

Cam · 14/10/2005 22:44

Droile - am sending you and your family my love and thoughts, Cam xxxxxxxxxxxxxxxxx

Marina · 14/10/2005 22:55

And other Mners live near Soapbox Towers to be on hand to squire you all about...I think Blu's wish is one of the best and wisest things I have ever read on Mumsnet and something I heartily subscribe to.
Just logging in to see how you are, basically.

Callmemadam · 14/10/2005 23:19

Issymum has said everything I wanted to, but better: lean on us, we are here 24/7 for you.

soapbox · 14/10/2005 23:21

Marina - agree Blu's wish captures all of our hearts right now

Original poster
Clarinet60 · 15/10/2005 12:33

Thanks Bunny. The trouble with ds's tumour is that it isn't one of those nice ones that you can have for years without much trouble. It's diffuse, so it can infiltrate close or distant structures within the brain; it's not the lowest grade (it's grade 2), and that type has a tendency to progress to more advanced grades. The trouble is, the bit that's left is inoperable for largely the same reasons as it's dangerous to leave it. It's near a major blood vessel which it could squeeze and starve of oxygen. When they invade, there's a chance that they destroy what gets in their way. He's only 3 and it's already grown enough to be problematic and partially removed. We were lucky with the direction it grew in previously, but now it's gone into dangerous areas. The average survival age for a grade 1 is 10 years from diagnosis. For a grade 2, it's >5 years. That isn't a hard & fast time scale, it's just an average - there will be outliers either side.
Sorry if that's tmi.

OP posts:
tamum · 15/10/2005 13:06

Droile, I don't know how you can begin to cope. You are being so realistic, and so impressive really. I know it's best to be realistic, and you have to face the worst case scenario, but do try and keep in your mind that there are well-documented cases of spontaneous regression of astrocytomas. It can happen; it may not and of course you have to face that, but no-one can completely predict the course of thse tumours in children. I wish so much that there was something I could do.
xxx