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?

Best of luck for Friday Droile.

You are amazingly together. I think of you often

dejags
x

I can't believe they can give someone a hard time over wanting the best possible care for their child You must be so frustrated - seems like you are just treading water at the moment. I really do hope things start to get moving soon, Droile, it's just not good enough. How are ds's seizures now?

how frustrating droile

you hang in there

and don't be afraid to tell them exactly why you felt you had to change teams

thinking of you all

you only want the best, droile, hang on in there and good luck on friday, much love, xxxx

Driole - good to hear from you.....and rant away if you feel the need

Don't feel 'told off' about seeking a second opinion, you have to know that you are doing your best for your ds and that he has the best people looking after him. Go with the team that you feel comfortable with. Good luck with Friday's scan.

Has any support been forthcoming from your friends? And is ds still seizure free

Oh droile. What tossers to give you a hard time over changing hospitals. If they are all good friends together why don't they go with the previous team's results, eh? Hello! Get a bedside manner, Dr Div. I guess you can only try your hardest to let it all wash over you because it sounds like they are very thorough even if their social skills leave something to be desired. Loads of good luck for Friday. How is ds doing day to day?

Scummy, you go girl. You've said it all so fragrantly
Thanks for the update Droile, we've all been thinking of you, hopefully Friday will have given the Alder Hey team time to get their toys back into the pram and get on with their real job of giving your ds the treatment he needs.
Lots of love and hopeful vibes for Friday's appointment XXX

Ohhh Drolie. FFS. How utterly frustrating for you all. Jesus.
Well look really the very best of love and luck for friday. I think of you of quite often as I drive to work for some reason, but Friday you'll be in my thoughts all day.
Thanks for the update.
TC xx

Oh droile that is all you need is Dr's giving you a hard time, as everyone says you are only doing your best. i hope you get some answers soon and i WOULD THINK IT WOULD BE APPROPRIATE THAT A BIPOSY IS DONE. I WILL KEEP MY POTTY FINGERS THAT DS IS STILL SEIZURE FREE TOO oops so sorry for caps

Oh Droile! Who DO they think they are? I haven't posted on your thread before I I have been feeling for you and wondering how you are getting on.

I would point out WHY you changed teams/hosp whatever. Point out that as a mother you want someone who is putting your DS FIRST and not being so inefficient in the basics.

Will be thinking of you.

Aww Droile, I'm thinking of you and your little one! The team are definately good, but I never said they weren't aresholes!! (Consultants and surgeons always tend to be up their own bums)

My little cousin in law's doing as well as can be expected, and they haven't had any concerns over the standard of care as yet! Don't think you'll be bumping into him as he visits one of the chemo wards now rather than the neuro ward... but if you get any crap let me know and I'll get his mum to have a word (she is/was a neuro nurse before all this happened so she knows them all very well indeed and could give them a good sorting for you! )

I hope everything goes as well for you guys as it possibly can xxx

Rapped over the knuckles?? What?

ScummyMummy said it.

Drs are really funny about second opinions. My dh had one recently and you'd think his consultant had had his teddy taken away.

You're in the right place I'm sure droile. Best wishes.

Thanks everyone. Marina, you made me LOL, which is no mean feat with the way I am feeling today. Throughout all this, our experiences at the hands of the medical world have caused us more stress and grief than the bloody brain tumour itself, which is staggering really. I think I'm going to have to put the whole sorry tale down on paper and copy it to the chief exec of Manchester and my MP, which has been suggested by several people. I didn't want to do it, because each person concerned has only done one or two things wrong, but added together, it's made a big mess.

I had a nice supportive evening in that a friend took me out for a drink, but another problem that's reared it's head is that no-one can look after DS1 from 6am to school time, as we have to be in Alder Hey for 8am. Some have kindly offered to have him sleep over the night before, but he's had screaming ab-dabs at the suggestion. (He's never been a sleep-over boy). DH and I both need to be there, because DS2 has to have a GA and also, they are going to discuss findings and treatment plans afterwards, and gawd knows what will be said.
I'll keep you posted. Writing down my rant is making me feel better, I think.

Yes, he's still seizure free, thank goodness

droile, sorry about the childcare stuff, adding to your worries. when i had dd2 i was more worried about dd1 being OK than the c/s I ended up having. I only met Mallucci @ Alder Hey, so don't know rest of team..2nd opinions do seem to spark off a weird reaction in medical bods, a sort of "why are you doing this?" (implication: to US, ie the medical profession) and label people as a result. But as others said, hope they can put this behind them and Get On With It

Yes. He was nice in other ways, but certainly didn't like his friends being dissed. Actually, I didn't diss them for ages and ages, not till he'd really pressed me - I just went with the 'friends near Liverpool' line that the GP had assured me was the best tactic. I think if I'd have met him in any other context, I'd have thought he was a nice guy - I guess what I mean is that he's a good surgeon and a nice person, he just doesn't like me and DH.

And everyone else who's met him (CM) says he's lovely, so it looks as though me and DH are the common denominators - but we've honestly never been anything other than courteous and friendly to everyone we've met at both hospitals. Must just be a run of bad luck.

Droile- how are ds1 and you and dh with new people? I could come up and help if you wanted- I have this week off and it'd be nice to see oop North. I could pop in and introduce myself to you and ds on Thurs evening then bog off to a b&b and return about 5.30am, potter about for a bit and then take your ds to school. What do you think? I'm police checked and know some people on the boards in rl who could vouch for me not being a criminal (at least I hope they would!). Totally understand if you'd rather not but the offer is there. CAT me if it's an option. As I say, I totally understand if it isn't.

Scummy, that is SO kind and I'd love to see you, but DS would freak just as much being left with someone he'd only just met (and I'm sure he'd love you too, but YKWIM) and I'd probably be too distracted. But really, thanks xxxxxxxxx

I know what you mean, droile and I think my boys would be the same. I did want to offer though and the offer stands, so if you're desperate, just drop me a line. How about family? Is there anyone who you could call on?

I'm sure that's not the case droile, he probably just feels a bit disloyal to his colleagues, maybe next time you see him you could say I think we got off to a bad start, let's be friends

scum the hero

You must ignore their tellings off and carry on doing what is best for your ds and the family, Droile.

It's like one giant masonic club, the consultant thing. When we tried to sue the consultant wrt the effects of epilim on dd1 (he told me there were no side effects) every hospital appointment we had ended up with one of them telling us why we were wrong. And these were often in different hospitals for different things!

I hope you don't have to wait too long for things to start happening.

What the do the medics friendships have to do with the best treatment for your son, Droile??? I think that's really unprofessional of the specialist. If you have the strength to complain, then I reckon it would be a good thing. It might save some other parents getting put through the mill. Thinking of you and ds.

I'm sure the consultant hasn't developed a dislike for you Droile - you're just feeling very sensitive atm (understandable). Good luck for Friday - still feel palpable disbelief that it has taken so long for your son to progress through the care pathway. After all a 3 year old is surely PRIORITY, PRIORITY, PRIORITY - aggghhhh!!!!!