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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:
spagblog · 12/10/2005 10:55

I'm so sorry that you and your family have to go through this. I hope that you have all the support that you need for the tough times ahead. Hugs to your DS

HausOfHorrors · 12/10/2005 10:55

This reply has been deleted

Message withdrawn at poster's request.

JoolsToo · 12/10/2005 10:56

I can only wish you, with all my heart, a happy outcome. Good luck in the coming months Droile.

ThomBat · 12/10/2005 10:59

Just had a proper little sob at work. It's just so bloody unfair. I want to do something but don't know what. What can i do? Would it be ok to send him a gift or something, oh I don't know, just feel that I need to do something. What might help or be nice?
Does he have nay idea of what's happening? What are you telling him?

handlemecarefully · 12/10/2005 11:03

There is something I want to say Droile, and I'm not sure whether to say it as I don't want to be tactless, crass, unhelpful so I will blurt it out with good intentions and hope it doesn't cause offence:

What about if we had a mumsnet whiparound to raise some cash so that you can all have a fantastic family holiday since you've been under (and continue to be under) so much strain lately...and you probably need something to lift flagging spirits...?

If that is a totally naff suggestion is there something else we could do?

I expect a lot of people who have been following your ds2's treatment feel that they desperately want to reach out to you and help, but don't know what / how / whether we can help

handlemecarefully · 12/10/2005 11:03

I can see Thombat feels the same way!

eefs · 12/10/2005 11:06

Droile. I've been thinking of you and hoping for better news. I'm so sorry about this latest twist and the uncertainty. How are you coping? How are DH and DS's? Remember how young and resiliant he is and the fantastic healing powers they have at that age. Keep your strength up and keep positive.

PollyLogos · 12/10/2005 11:06

I have to be honest and say I don't know what to say except that I have been thinking of you all and will continue to do so. I would offer any practical help if I could except that I'm not in the UK.

PottytheVampireSlayer · 12/10/2005 11:06

Droile - sorry it wasn't better news. It sounds like a long road for you all.

Hope the nurse can offer you some much-needed support. Will be in touch. Hugs X

Original poster
Clarinet60 · 12/10/2005 11:13

It's really kind (understatement) of you, but I don't think that either of us could accept any money, but I know how you feel.
I feel miserable today and DH is cross so I suppose he does too. It wasn't a big shock because we knew that a tumour in that area could only get up to no good, but I suppose when you hear the actual words it makes it feel real. Ds knows nothing about it, it's all going straight over his head and I suppose that's best at this stage.

If you really want to have a whip-round, put it into the Ronald McDonald House at Alder Hey. I can supply details if you like.

Thombat, I don't think there's anything you can do except what you are doing now, which is being there and listening. This is going to be a very long haul and you'll probably be sick of it soon. I know I am.

OP posts:
Original poster
Clarinet60 · 12/10/2005 11:14

I don't know when the nurse will come.

OP posts:
hhhhenleyonthames · 12/10/2005 11:16

Oh Droile. I am so sorry that things are complicated and the news is not the news that it should have been.

Please take care. We are all here for you.

hhhhenleyonthames · 12/10/2005 11:19

Ring the nurse and arrange a time. Ring also the Paediatric liason nurse (your local surgery will have the number) as they are often brilliant and very helpful.

M2T · 12/10/2005 11:20

Droile - Don't post much on this thread, but have been watching and hoping and keepping everything crossed for you.... and I still am.

laligo · 12/10/2005 11:27

dear droile - i haven't posted to you about this before, but wanted to send you good wishes.

one thought that may help a little... advances are coming thick and fast in research in this area - as this is a long-term situation you're facing, there may be a new solution on the horizon at some stage. hope so.

ThomBat · 12/10/2005 11:27

drolie, i will never feel 'sick' of listening to anything you have to say. God,if all I can do is listen then bloody hell woman bring it on. We've got each others email now so we don't have to do it on here if you don't want.
Will you let me do something else though. i know you don't want money but if your boy ever feels upset of poorly or anything, will you tell me/us and perhaps we could all just send him something very small, token type gifts in thjepost and maybe halp to cheer him up, for a bit. Will you do that, please?

Sorry, i just can't not do anything at all and I need to do this for me, would that be ok?

Meanwhile, i'm totally here to listen in any way I can. Be it on mumsnet or via email. I'm going to email you my phone numbers now as well.

TC xx

butterflymum · 12/10/2005 11:30

Droille, you are a mum of such amazing strength and courage to have shared that last post in such a straightforward manner. Perhaps your consultant would be agreeable to meeting with you again in less stressful and more private conditions so that you can ask the many questions you will undoubtedly have.

It is this strength/courage and the support of your family, friends and cyber-friends that you need to lean on now, so that you can continue to do your best by your son and move positively through the challenges ahead. The MacMillan nurse will no doubt also give you as much help and encouragement and guidance as she/he can.

Your son is so very fortunate to have you as his mum and I am certain this will be reflected in how he, in his own childlike way, is coping and will, I am sure, continue to cope in the days, months, years ahead. However simple your explanations to him are, done with honesty and love they will, in his own way, be understood.

Keep strong and take care.

butterfly

gingerbear · 12/10/2005 11:53

You and your son are often in my thoughts. Much love, from the bottom of my heart. xx

Nightynight · 12/10/2005 11:55

droile, I have been following your story too. sorry the latest news isnt better, and am praying for better news for you in the future.

ks · 12/10/2005 11:55

This reply has been deleted

Message withdrawn

Original poster
Clarinet60 · 12/10/2005 13:25

Thanks Thombat, he'd love that, & thanks for the email.
Butterflymum, that's a good idea - I'll ring his secretary today.

OP posts:
bundle · 12/10/2005 13:28

hello droile

I'm sorry I have mislaid your address, could you please CAT me again with it so I can send that CD, thanks bundle x

jabberwocky · 12/10/2005 13:31

Droile, I haven't posted often as I frequently feel at a loss for the proper thing to say, but I think of you and your son often. I'm so sorry this wasn't more straightforward. I know everyone hoped that the surgery would get the entire tumor. My prayers are with you and your family.

Blu · 12/10/2005 13:41

No Droile, we will not get sick of listening. In fact, I am quite nervous of asking you too many q's and pissing you off - but it's quite helpful to know exactly the hard facts you are having to juggle with, so thank you for your update.

I am so ANGRY that this damn thing is diffuse - so unfair that they just can't clear it up, end of story. It's so cruel on you all. You must be feeling this a million times over. So sorry.

You are doing brilliantly.

And I will send a donation to the R McDonald House at Alder Hey. I spent time with some parents who were living in the one at Kings when DS was in hospital.

I hope the MacMillan nurse is helpful - I'm sure she will be. She might not be able to answer all your medical q's though, might she? Sorry about the bank of onlookers in your appointment. Will you get a chance to follow-up with any more q's? It seems important to have all your q's answered.

Droile - sorry if this is way further than you want to go, if so, please just ignore the q and accept my apology - but when they say less good in the long term, do they mean return of seizures? Or impaired function? Or worse?

Hold tight Droile, you are being a very wonderful mum.

batters · 12/10/2005 13:54

This reply has been deleted

Message withdrawn at poster's request.