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DS has brain tumour

324 replies

Clarinet60 · 22/07/2005 11:54

We finally got his MRI yesterday after waiting 5 months and there's a mass in the area that joins the 2 hemispheres. Of course, it was all systems go down to the childrens hospital in Manchester because the signs are that it's fast growing, that's why he's gone from 'funny turns' to daily seizures and then to 50 seizures per day. But when we got to Manchester, surprise surprise, they're not going to do his biopsy until 'some time next week' - he'll be slotted into their system.
So we came back home again.

He's well in himself, bouncing around like mad.
I'll let you know more when we know more, re benign/not.

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triceratops · 28/07/2005 12:57

A little girl I used to teach (age 5) had a brain tumour the size of a tennis ball removed. It had interfered with her sight and made her have bad headaches. I felt awful at the time because I recommended that her mum take her to the opticians for glasses, I didn't realise how serious her condition was. She was fine and back to her normal cheerful self six weeks after the op although she lost all her lovely long hair which upset her.

I hope you get a positive outcome very quickly with your boy Droile. Good Luck.

SofiaAmes · 28/07/2005 15:32

I don't know how public it is, but believe conor's baby died at birth, so maybe not a good idea to mention it.

bundle · 28/07/2005 15:37

gosh, sofia, I had no idea, that's awful.

motherinferior · 28/07/2005 19:56

Droile, love, I will try and find out what I can - can you CAT me and let me know exactly what you would like to find out? I also wrote an article (for JakB, in fact, years back) about preparing yourself, and your child, for your child's visit to hospital which might be useful.

Clarinet60 · 28/07/2005 20:14

OMG, that's terrible, the poor man.
throckenholt, he has had epilepsy for the past 6 months which they think the tumour is causing.
We're going to York, blu.
Triceratops, that sounds really encouraging, for her to be better 6 weeks after the op.

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Clarinet60 · 28/07/2005 20:18

MI, I've CAT you. Also, the article would be great, thanks.

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Clarinet60 · 28/07/2005 20:20

Sarah, I've read a little about the aspartame thing. Ours don't drink/eat things with sweeteners in, not at home anyway, but it is worrying.

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Clarinet60 · 29/07/2005 23:05

We're off now for a week.
Will let you know of any developments when we get back.
xxxxxxxxxx

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Janh · 29/07/2005 23:06

Have a lovely time, Droile

morocco · 29/07/2005 23:13

hello droile
I've just read this - what a shock for all your family. I hope this doesn't sound wrong, but how lucky you have had time to come to terms with this a little and think through where your ds will have the operation etc. It's good that you are able to choose the hospital where the operation will be. I will be thinking of you all.
Both my cousin and my brother had brain tumours as teenagers and both made excellent recoveries. I have heard that the recovery for children is, as is almost always the case, much better than for adults - dont' they just bounce back like little balls from everything??!
Much love

Clarinet60 · 29/07/2005 23:33

Yes, they seem to have good prognoses wherever you look. It is good to be having this 'time out' to come to terms with it all too.

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Sarahx2005 · 30/07/2005 22:30

Great news droile - have a great holiday - spk soon. Sarah x

Clarinet60 · 09/08/2005 22:35

Hi Everyone, we're back.
Had a good time with great accommodation and loads to do, although it was a strange holiday as we were wondering if things will ever be the same again. Ds has been better seizure-wise, as his medication has increased, but his behaviour has gone downhill in that he's uncooperative and stroppy. We're still waiting for our next appointments re further scans and we also have to see a paed oncologist, who is the final member of the team, but don't yet know when. Have heard nothing about Alder Hey yet.

The waiting is a strain. It's his big brother's birthday tomorrow (he's 6), but I've only managed to pull together a minuscule party at Brewsters, which is what he wanted, but I still feel it's going to be so different from the mammoth affairs of other years.

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motherinferior · 09/08/2005 22:36

Email me re questions, honey; I will do what I can although I cannot promise absolutely everything. Am thinking of you.

Clarinet60 · 09/08/2005 23:05

Thanks mi, although I don't know where to start.

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rickman · 09/08/2005 23:22

Message withdrawn

Clarinet60 · 09/08/2005 23:48

I will rickman. I hope they're ok, it must have been a shock to have to go back to hospital.

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handlemecarefully · 10/08/2005 15:46

Glad that you had a good time on holiday. Good luck with the birthday preparations.

Ds2's stroppy behaviour might well be age related rather than tumour related. My 3yr old's behaviour always deteriorates on holidays - too much excitement.

When do you go to the hospital next? It seems like an inordinate amount of time to make you wait to find out whether it is benign - bit harsh I think.

Can't believe how measured and calm you sound - but I guess you have to stay strong for the children don't you rather than let anxiety overwhelm you. Still in awe of you though

handlemecarefully · 10/08/2005 15:47

Just re-read your post that you haven't heard any more re appointments yet. Ring them up and chase them.

bundle · 10/08/2005 15:50

droile, thinking of you, xxxxx

Clarinet60 · 11/08/2005 23:06

He had an appointment with his general paed today, but she didn't know any more and was as frustrated as us. What's holding it up now is waiting to see the oncologist, the final member of the team, after which they'll all get together and decide if they agree. She said it was pointless her guessing yet, but they may shrink it via steroids, chemo or radiotherapy. Then again, she thinks they'll want a tissue sample ultimately. She's doing all the ringing round and chasing up for us, but she did say that she'd rung Manchester and they'd been unhelpful. I think that's the measure of that place - the surgical/etc teams are great, but the admin/communications side of things are atrocious.

Lots of people have said I seem calm. I suppose it's because I only seem to have 2 speeds - hysteria or calm. I don't feel calm inside much of the time. I have typed some incoherant posts, but I've scrapped them. Actually, the typing process helps you to focus. But I do feel that if I could only 'break down', I'd feel a lot better, but I still have all the usual functions to perform, so I suppose it's off the cards.

I'm on a short fuse with the children, unfortunately. I seem to have slipped into a weird phase of almost viewing ds2 as if he's someone elses, which may be a safety mechanism, but it doesn't feel very nice, because it means I have no patience.

Other people have said that his stroppiness may be a phase and it may well be, but he's also doing things that neither of them have done before, such as hitting and attacking.

DS1's birthday went really well. He had a tiny party (2 friends) at the local Brewsters and enjoyed it just as much as the big ones - so there's food for thought for other years!

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marthamoo · 11/08/2005 23:17

Droile, thanks for the update. I don't know what to say that's of any comfort but I'm sure your 'detachment' from ds2 is just a coping mechanism - you are trying to hold it all together and focus on the practical and do-able. His behaviour is completely understandable too - I spent quite a lot of time in hospital as a young child and was apparently a little mare after each stay

Hope you get to see the oncologist soon - can't believe you are having to wait. Your experience of Manchester is shocking - though my Mum had a bad time there after her heart attack I would have thought they'd be more on the ball with children.

I'm glad ds1's birthday was a success - you can save the grand bashes for future years.

Hang on in there - wish I could say something truly wise and reassuring, but all I can manage is that I'm thinking of you all.

Clarinet60 · 11/08/2005 23:48

Thanks, I think you're right, he's bopund to be reacting.

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Clarinet60 · 11/08/2005 23:49

BOUND to be reacting. I've got a loose connection tonight - it keeps throwing me off.

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Clarinet60 · 12/08/2005 11:24

His seizures came back this morning, after 6 seizure-free days.

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