DS has brain tumour - update

[Clarinet60]

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?

Good news Droile - good luck for next week. Can't imagine how you must be feeling. I'll be thinking of you all. xx

thinking of you all and wishing you all well for Tuesday

Good luck.

Thinking of you.

Been following this Droile, and wanted to wish you all well for next week. x

Droile, will be think of you, your son and the whole family on Tuesday.

Thanks everyone.
We've had a scared weekend, but a good one spent doing lots of nice things. Childcare for ds1 is all in place and he seems to be accepting it now. He's going to a different friend every night and DH will be able to take him to school, except for Wednesday itself, so he'll stay over at a friend's Tues night.
ds2 is blissfully unaware - hospital to him means different toys. We'll tell him on Wednesday that he might wake up with a sore head, but other than that, don't think there's much else he can take in.
I'm numb, but relieved that it's finally sortable.
Thanks for all the good wishes,
xxxxxxxxxxxxxxxxxx

Will be thinking of you Droile. Keep us updated.

Driole, forgive me, i can't remember if you have had experience of a child having an oeration before.
My top tips (compiled when DS had 4 ops in 5 weeks!):
Find out what bedside phone system they have, and get a card for it - (no mobiles allowed!) - and arrange one other family member to be your contact for all the others so that you are not under the hassle of worried g'parents etc.
take lots of snacks and drinks for YOU - you don't want to be leaving DS to go to the hospital cafe once he has come round.
Take little thngs that he likes for him to eat / drink when he comes round and feels up to it- he will be v hungry and thirsty, and you won't want to wait for horrendous hospital food for him!
Double check with the ward staff where you should wait to be notified immediatley when he is out of theatre.
Prepare yourself - if he is in a children's ward, they can be emotional places. Lots of bonding and mutual support between parents, but also (possibly) some very poorly children.
Obviously DH will be with you - don't be alone when you have to take him down for the aneasthetic.
Find out exactly what the procedure will be when you talk with the aneasthetist beforehand: will you be able to stay with him until he is unconscious - can you both go or just one, will they use a canula, or just gas, first?
Children are incredibly resilient to hospital experiences. The pain is all yours!

My thoughts will be with you, Droile.
xxx

Droile, this few days running up to surgery is a really tough time.

Some good stuff there from Blu, I'll just add that when visitors come who ds is pleased to see take the opportunity to go and visit the loo, have a coffee and five minutes to yourself. It can be really 'full on' and demanding and you need to look after yourself too. If he's likely to be sleeping a lot take a good book, MP3 player etc as hospital time goes soooo slowly. Also will ds be going to ITU? Think seriously about having a look around first yourself so the place isn't a huge shock.

Thinking of you all X

I'm so pleased you have a quick progression now Droile after all the scary waiting.
We will all be with you in spirit and thought this week and especially on Wednesday. xxx

Droile, thinking of you and DS this week.

xx

Haven't spoken to you before but I've been following your threads and thinking of your family alot. All the very best of luck for the surgery and your DS's recovery.

I also will be thinking of you all on Wednesday Droile. Hope everything goes well.x

Thanks.
That's good info Blu & Potty, I especially hadn't thought of the snacks. He will be going to ITU. What sort of stuff won't go off?
I've packed plenty of reading matter, was wondering how many sets of his pyjamas to take, or do they make them wear hospital stuff when it's surgery?
Feeling wobbly today. My legs keep buckling, which would be quite amusing under different circs.

Droile - I'll be thinking of you all too and sending best wishes

Droile - very best of luck, I remember the pre-op nerves all too well. I was astonished though how lucid dp was just after the op, we saw him about an hour after the op finished and had a little chat about football!

Dp was provided with hospital pjs until he was well enough to move around etc without too much help.

Thinking of you and your DS.

XXX.

All the very best for Wednesday and the lead up to it Droile

Droile, my very best wishes. I will be thinking of you on Wednesday. You;ve got some great practical advice here- the only thing I would add is that the nurses explained to me when ds had an operation that I shouldn't assume that the op had gone badly because it seems to be taking ages- they prep them before the last person is out of the operating theatre and don't necessarily tell you that they're out until they are actually coming round. I don't know if it's like that for such an important operation, but it was certainly good advice for me (I was panicking after 2.5 hours). I have everything crossed for good news.

That's a good point Tamum - thanks.

Wishing you lots of strength and sending you big coping vibes Droile xxx

best wishes for this week droile

Droile, I'm pleased that action is being taken but know you must be so worried right now.
Good points from Blu, potty1, Tanum etc.- another thing: You'll probably be with DS2 when he goes under the aneastethic - prepared to be very upset then, it's very hard to leave them in the operating theatre.
I'd say to bring in his own pj's etc, he might not wear them for a few days but they'll be familiar to him and will mark another milestone in his recovery to see him back in his own clothes. Bring in as many pairs as you can - you can't wash them and his dressings etc might leak onto the PJ's. Soft day clothes are good as well.
Get a lot of trashy books and magazines - I couldn't cope with anything anything more highbrow during ds2's hospital stay.
Best of luck - I'll be thinking of you and ds2. Remember - children heal amazingly well, you'll be surprised at how fast he'll be back on his feet.

thinking of you all and wishing you well - I bet you will be amazed how quickly he's up and at it again!

all the advice sounds excellent. I don't have experience of ga but my nephew tried to beat up his mum when he was coming round afterwards - he didn't know where he was - keep out of firing range!

Good luck, Droile, for this week. We'll all be rooting for you and ds, you can count on that. xxx