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?

Oh Droile, so sorry you have all this extra hassle - just think 'wateroffaducksbackwateroffaducksbackwateroffaducksback...'. It is v unprofessional of them, imo. As if ANYONE would go forward with something so important concerning their child without a 2nd opinion! (Our consultant was the one who actually referred us for a 2nd opinion!!)But I do remember hospital administration, lost x rays, lost notes, mixed up op times, all taking a huge toll on nerves and energy.
Anyway - it's onward and forwards, now. Sorry about the childcare hoo ha - would your friends come and stay in your house do you think? Or agree to have you drop him at 6 am for a couple of hours early play with his friend?

I have met Scummy - she is the warmest, loveliest cuddliest friend any child could hope to meet - so if you REALLY get in a jam....

Glad to hear the seizures are still at bay.

XXX

Most have said, entirely understandably, that 7am would be feasible, but not 6am for him to be dropped off. It is a bit middle-of-the-nightish. And we don't have a spare room atm.

I said that on the phone to him yesterday, Bundle, using almost those exact words, but he just repeated what he'd previously said.

tbh, I can't understand why he took the gig in the first place if he feels so strongly. He could have just said he was full.

Thanks Scummy. I haven't got any family north of Watford, and DH's are elderly and problematic.

Thanks fastasleep, a good sorting might be good.

hi droile
glad to hear things are moving along, even if some not without hitches.
well out of order trying to tell you off - sometimes I am all for privatisation of the nhs then they'd have to develop a bit of a bedside manner and get a bit more used to people getting second opinions (but then I remember what a great institution the nhs is and settle back down). My experience with ds is that each consultant likes to run their own tests on absobloodylutely everything, even the most mundane things. it must be very frustrating to have to go through it all again.
thinking of you all

Good luck today Droile.

Success!
DS had his second scan this morning, and after viewing it, they decided that he's having his operation next Wednesday. A guided needle biopsy won't be possible because it's next to major blood vessels and they need to see well, so they're going to open him up completely for total access, and might remove the tumour at the same time. So we go in on Tuesday for the op on Wednesday. There were no wrangles or talks of colleagues today - just ds and his tumour, which was what was needed on Tuesday. I've got every confidence in the man now.

Glad to hear that you are in a position to move forward.

My thoughts and prayers are with you.

LGJ

Glad its going to be quick Droile. Thining of you. xxx

Hi droile. Glad it went well today and that your confidence levels in the consultant are up. Must be a sort of scary relief to be out of the waiting limbo, I guess. Thinking of you and ds and family now all systems are go and hope you'll all be able to relax and have a fantastic weekend before preparing for the big day next week.

I am very glad that it is going to be done quickly and very much hope that everything goes well. Sending you every best wish and hug.

Good news Droile. I'll be thinking of you all. x

Wow Droile - fast moving or what? I'm so pleased that you were treated properly today and that you have confidence in the surgeon.

Try to enjoy this weekend. I will be thinking about you next week and if there is anything practical I can do let me know. I'm about an hour away.

thinking of you droile and your little man. will say a prayer for you that it all goes well x

Droile very happy for you and DS that it is going ahead.

I can't imagine how difficult this next week will be for you

All of my best wishes though for a good outcome for all of you

iv not posted on your thread before, but iv been following it, so so glad your little boy is seizure free at the min, and that finally things are moving in the right direction, all the best for wed, everythings crossed for you!!

Oh Droile, another step forward.
I will be away but I will be thinking of you and your little lad. Nothing will make the hours when he is in theatre any easier for you, but he is in the right hands. Well done for that.
xxxxx

Thank heavens things are moving at last, Droile. Will be thinking of you all next week.

Glad that things are moving ahead and will be thinking of you next week.

I haven't posted on your thread but have been following what has been happening to you and your DS. Just wanted to say that I'll be thinking of you next Wed and am sending you lots of hugs in the meantime. It sounds as if everything is moving forwards now which is exactly what you and your family need. xxxx

I will be thinking of you and your family on Tuesday Droile - glad you feel confident with the medical team now. Best wishes, mears

Droile, I'm thinking of you and I'm glad this is moving on. x

Droile, darling, very pleased too that this is moving on.