DS has brain tumour

[Clarinet60]

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.

Can totally understand your detatchment Droile. While dp was ill with his tumour everyone commented on how well I was coping with that, an 8 week old baby and a new bathroom being installed! I felt completely calm and rational about the whole thing, it was only when dp was back at work that I fell apart. It's a coping mechanism.

Droile i have only just seen this.

I'm so so sorry, i just don't know what to say You seem to be dealing with this very well.
Please keep us posted on how he is doing and give him a big hug from me.

Droile,

Could you ring Manchester and pester them directly - perhaps ask to speak to the PALs service (Patient Advice & Liaison)?

It makes me angry on your behalf that you're having to wait around like this.

Droile - only just seen this. Sorry that the seizures are back How dreadful for you all. I can completely understand the detachment too - dd was diagnosed with significant heart problems at 4 months and was lucky to see her first birthday. I feel like I brought her up at arms length that first year. It is just a coping thing.

Do you know the oncologist's name (and is this the Alder Hay referral)? I would call his secretary and nag a bit. IME the secretary is a good ally. Also ask if they have an oncology/neuro Liasion/Community Nurse - again worth getting in touuh with for some support. They have them for cardiac so probably do for neuro too.

Will be thinking of you. Stay strong and have a (((hug)))

Oh I'm so sorry to hear that, Droile. How is he now?

I'm sorry the seizures are back, Droile. If you want another 'good news' story then this is one. A friend's 4yo ds was rushed to hospital with double vision. Hydrocephalus was diagnosed and by the time he went into theatre that same afternoon he had gone blind. A permanent shunt was put in to relieve the pressure and a scan showed that he had a congenital hole in his brain. He made an amazing recovery, including his vision, and in fact became a new child. His mum said it was as though his pre-op life had been conducted in slow motion and he was now functioning at the same speed as everyone else! A more sophisticated scan revealed that he does in fact have a tumour, not a gap in his brain. My friend was told that this type of tumour tends to either grow rapidly, requiring urgent treatment or it just sits there and does nothing. Luckily, her lad's is in the second category and has stayed exactly the same for 5yrs. He now only has a check-up every couple of years so he has done very well.

Dislocated and Potty, that's a real relief about the detachment thing. A couple of times today when I cuddled him, the normal feelings came back and they were overwhelming, so I think it's probably a much-needed safety mechanism. DH doesn't seem to have it though.

The secretary/liason-call is a good idea - we'll do that Monday. It's still Manchester atm.

It was awful when his seizures came back. He's had 7 today in total. We didn't realise how much we'd got used to him not having them. He came a real cropper during one while I was in the kitchen and bashed his head on the door-frame. A special helmet is another thing we're waiting for.

suedomin, that's great about your friend's 4yo. I hope ds falls into that category. Someone else told me yesterday that they have a relative with a tumour that's safe enough to be left. I hope it turns out that way with ds, but with his seizures being so bad, I'm not sure.

dislocated, I haven't seen your dp's tumour story so will have to catch up.

motherinferior, sorry I haven't emailed you with those questions yet. I'm going round and round in circles at the moment and I don't know what they are any more, but I'll be in touch when I come round from it.

Droile, I hope you get an oncologist appointment soon, the seizures sound terrifying. I think Moo's right about the coping mechanism and I also think you have to do whatever it takes to get through this. Sorry if that sounds platitudinous. Remember to look after yourself too if you can won't you?

It doesn't sound platitudinous WWW, thank you.

Hi Droile, I've only just seen this. Blimey, I'm so sorry, how are you all???

We're weird Thomcat, thanks. Up and down. One minute we're thinking about how horrendous things might get, the next it's another ordinary day and we're doing ordinary things. It's nice that we have this time to be normal before he's admitted, but at the same time, it's torture too.

Ds1 is fine. He understands part of what is happening to his brother, but he just gets on with life the same, because for most of the time, nothing happens. It's very very weird.

Blimey, I bet you're up and down. Jesus, I can't imagine how weird it must feel, surreal I suppose. Is there anything I can do? Do you want to chat, can I do something more paractical, God knows what, send him and his brother something little in the post to cheer them up perhaps?

Ah Thomcat, that's really kind of you, but you mustn't. Ds1 has just had a trillion presents for his birthday and is extremely mercenary and blase at the moment. As for ds2...., I don't know.
To chat would be great.
Surreal is the word.
Sometimes I want to get in on ordinary conversations again, but at other times it seems too bizarre and almost an affront. I suppose another few weeks of this and I'll be used to it. Sometimes I just can't believe what's happeining.

Droile, I am reading your messages, and thinking of you a lot. I wish I could say something to make things better. My mother had a brain tumour and living through that with her, yes, I did feel detached and normal life took over at times. I agree it certainly was a coping mechanism for me - and for her, too, I think. I know the outlook for children with this condition is much better, and I hope you take strength from the positive stories here.

His seizures are at about 4-7 per day atm, Thomcat. What happens next - we'll know better when we've seen the paed oncologist. After that, his 'team' will get together and decide whether it's the type of tumour that they leave alone apart from monitoring, or the type that needs to be biopsied and maybe removed. This is the gist of what we can gleam from them - they are extremely tight-lipped until they've really worked it out from all angles. So what may follow is more waiting and more time in limbo.
Support systems - we've had a few cards, but most people aren't darkening our doors at all. I do feel for them - I've felt the same when others have been through stuff, you feel you ought to give them space. Well, there is a happy medium, but I know now that people going through traumas really appreciate visits and calls.
DH and I are supporting each other mostly. We've got closer, which is great. Who'd have thought it, eh?
Tigermoth, was your Mum's tumour removed? Did you have long waits too? It feels long - it's probably only been 3 weeks really.

Shit man, that many seizures, poor little soldier. How is he with them? I mean do they frighten him, how is he afterwards etc? God what a nightmare, and to top it all you've just got to wait. I understand they have to be tightlipped but how frustrating for you.

It's a shame that people are staying away, I kinda understand it but even still..... have you got a really close girlfriend who is there for you at least babes? I'm glad you and DH are closer. When Lottie was born and we were getting our heads round the fact she had Down's syndrome D was amazing, which helped enormously. Glad you 2 have each other. Whereabouts do you live btw?

In the northwest Thomcat. You must have been through a lot when Lottie was born, I feel for you. I have a couple of really close friends, but they each live a bit of a drive away, so I only see them once a week or fortnight, which isn't anywhere near enough atm. My mum lives near London and never ever comes up except outside her annual visit, except for funerals. I was brought up by my grandparents, so we're friendly but not close. I also have lots of other friends who aren't mega-close.
As for the seizures, he's disorientated when he comes out of them, but they don't frighten him. He just carries on where he left off, as long as he hasn't hurt himself. They usually last only 20 seconds, but when he's bad, he has up to 50 a day. Every time his meds are increased, they stop, then creep back up again, so we're still in that period.

Don't know if anyone saw that programme last Tuesday night, Born Different or something, which included a child with brain tumours and seizures? Well to look at, ds's seizures are exactly like that little boys, except ds has more shaking and rigidity. The expression on his face and the eyes are just the same.

droile I'm so sorry, was away when you started this thread so have missed it.
Just wanted to say that you and yrs are in my thoughts at this very trying time. Cannot imagine what you must be going through but may you have the strength you need.
cxx

Thanks Clary.

Rickman, have you heard from your friend since they got back from the hospital? I don't like to ring if he's been poorly again. Perhaps it would be better if i emailed her, if she's online.

droile, I am really sorry some of your friends are keeping their distance. This also happened to us when my mum was ill. Some friends were there for us, but others were too overwhelmed or felt they were being intrusive. Telling people how I felt helped, but some people just couldn't cope with the news and visiting and I had to accept that. Some friends found it easier to have long phone conversations with me or my mother, without actually seeing her.

You asked what happened to my mother, and I wish I could say she recovered. Unfortunately this was not the case. But she was over 80 years old and the doctors were VERY slow to diagnose and act. The symptoms she had were put down to her age, even though both she and I - and several of her friends - were urging the doctors to investigate for months beforehand. When the tumour was eventually diagnosed, the hospital offered no treatment as the doctors didn't consider my mum strong enough to benefit from it. Her gp tried to get the hospital to do more, but got nowhere. I suppose it's a question of funding when a patient is elderly.

I know the outlook is far, far better for children with this condition, and you have every reason to be hopeful.

Droile,

If I lived in the North West (rather than on the South Coast!) I'd be around yours like a shot, whether you wanted me to (a complete stranger - lets face it!) or not.

Are there are patient support groups or similar nearby?