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?

Yes, a couple of consultants had said that he might need chemo, etc.
DS1 is coping really well, although I know he feels a bit left out.
I felt terrible for the first few days we were home as everything caught up with me, but I'm feeling better now.

Droile- I am so glad your little boy has come through the operation and the the whole process went as well as it could have done really. You have come through so much together. Not surprised everything caught up with you just afterwards. You must have been running on scared adrenaline for ages. Very best of luck with the next stage.

(Kicking myself dor missing your update- checked this thread every day for ages then went and missed your good news! Doh.)

Droile, really positive news. So pleased he is home. You are doing so well coping with everything. Think of you a lot. xx

Thanks all of you. Dislocated, the wine and the bath went down great. Scummy, you were right about running on adrenanline, because I didn't feel as bad while we were actually in hospital, but once we got out, it floored me.
Myturntobeposh, thanks for thinking of us, it means a lot.
Next Tuesday is results day, so building up to that.

And we will be thinking of you and hoping those results are as good as they can be

Thinking of you Droile, thanks for updating us and as usual your DS is in my thoughts.

dejags
x

I won't have access to a computer for a week or so, so am wishing you all the best for next Tues, Droile.

Droile - forgive me, what are the results focussing on? They have identified the nature of the tumour,haven't they? Am I right in thinking that is a malignant type (an assumption from the fact that they are suggesting possible chemo?). So will the results tell you the plan for future treatment, or what?

Will be very much thinking of you, anyway. Each pressure eased is replaced by a new one at the moment, isn't it?

They haven't identified it definitively Blu - only histology can do that. They've told us what it appears to be - a grade 2, with 3 being malignant. We'll find out the full results from all analyses on Tues. Even benign tumours sometimes need chemo, etc if they are fast growing.

We will also discuss treatment plans on Tues, and the results of a scan he had just before we came home, to see how much is left in.

Oh, I see. Thanks for that, I understand it better now. You must feel you are having to become an expert very fast!

I hope the weekend has been 'ok'.

Hoping everything has gone ok for you today Droile.

How did it go Droile? Are you back from appt yet? Hope everyhting is ok. Thinking of you and that handsome boy of yours. TC x

Results day today then - hoping for really positive news for you Droile.

Hear hear. Thinking of you all today Droile and hoping the news is good.

Me too.

So pleased the op went well. Good luck for today.

Ditto...

Thinking of you Droile.
xxx

Good luck today.

Thanks everyone.
It was very complicated, so I'll just tell you exactly what they said. The tumour type is as they thought, except that it's diffuse, which means it has tentacles and is likely to spread. It's a worrying tumour because it's in a bad place and it isn't the lowest grade. They don't call any tumours in the brain benign now, because they're in the brain, basically. So the long term prognosis isn't brilliant, but in the short term, they will manage it as best they can. He'll have scans every 8 weeks. They may do some chemotherapy in a while, but he'll need a year of it and they'll hold off that until they've monitored it for a while, because it's so disruptive for him and it's not that effective on these types of tumours. Radiotherapy is out because of the damage it causes and further surgery will only be an option if it grows back to where it was. There was a room full of people observing while they were imparting this news and ds was wriggling, so we couldn't really ask many questions. An outreach MacMillan nurse will come to visit us soon, and he has another scan booked in for December.

Oh Droile, I can't imagine what you must be going through. When is the Macmillon nurse coming? how are you feeling? How is DS?

Oh Droile - it sounds like a long hard road to travel. I'm sorry that the outcome wasn't simpler, and that he is going to need long term follow up and treatment. At least you have full confidence in the medical team, and know that he is getting excellent care...and at his age, kids are quite resilient and cope better with it all than many adults would. Tough for the rest of you though

bloody hell droile

oh, ... Droile, i just don't know what to say babes. Just deleted about 5 lines as nothing seem approproate. So sorry that it's not the outcome we were all hoping for and that it's all so ...messy and .....
How are you babes?