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.

Drolie - sending you lots of love and positive vibes xxxxxxx

Droile, I'm so sorry to hear this. My best wishes are with you and your family - though that sounds so insufficient. You have been missed around here.

I am so sorry, I will be thinking of your family.

It's not insufficient prufrock, it means a lot.
You don't realise how important these messages are until you really need them - thanks.

lots of good thoughts and loving positive vibes heading your way.

xx

Droile.. my thoughts are with you, it must be so stressful.

I hope you get lots of help, please take care of yourself.

Sory, completely missed this but wanted to send loads of positive vibes and also to support you in fighting for whatever is right for your son.

Hello Droille

Only just noticed this post.

Have missed what has been happening since the epilepsy diagnosis a few months ago so was shocked to hear about this development. Hard as it is for your son and indeed you and your husband to be going through all of this, I hope that knowing now that something is there will hopefully mean that he can be treated more appropriately/effectively/quickly and with a good outcome.

Much support has already been sent your way on this post and I would just like to add to same. Your emotions will undoubtedly be all over the place but take strength from knowing that however you are feeling, low or high, someone here will be available to listen/share with you/ give encouragement. To be strong for your son you will need to be strong in yourself and I am certain you and your hubby will be. Your son is young and will probably thrive on all the attention he will undoubtedly receive in the coming days/weeks/months. Use good days to store up positive energy to help you through the odd 'draining' day.

Thinking of you all.

butterfly

Sorry to read about this. I hope he continues to be well.

droile, thinking of you, wondered where you had been. So very sorry you this horrible uncertainty is part of your lives for now. I'm so glad your talk with the neurosurgeon helped you, and you feel ok about him finding out more before deciding to operate. I hope you draw strength and knowledge from these messages on mumsnet now and in the next few months.

Droile - Thinking of you and your family XXX

I can't find anything about neurosurgery on the Alder Hey website - it seems to be mainly cardiac.
Does anyone have any information?
I've tried contacting them, but their site has an intermittent connection.

Alder Hey, my cousin in law who's 2 and a half had a tumour removed there... They have a brand spanking new neuro ward and some brilliant surgeons and consultants, the little one I know was cared for at the highest standard by everyone he came into contact with, his parents are very thankful to everyone there...

He's just finished his first lots of chemo, he just got home for the first time a few weeks ago...

It was absolutely terrifying they removed a tumour the size of the surgeon's fist, and it was very touch and go... but he made it! I can't imagine what you're going through

I would try phoning for more info? I'm not that helpful as I wasn't allowed to visit with being pregnant, having a toddler and my cousin in law's compromised immune system..

Droile, how very frightening for you. All my best wishes for a speedy and happy resolution to this.

so sorry to hear this Droile, hope you have a happy and successful resolution to this x E

droile, I met one of the surgeons at the brand new unit at Alder Hey (I think fastasleep mentioned her cousin was treated there) who was incredibly positive about the way children respond to treatment of brain tumours (I'm a radio producer and there's a link to the programme here ).

You know everyone here is thinking about you, xxxx

Good grief Droile, I've only just seen this. What a bombshell. Now I've found this thread I'll be following it all the way through and offering what moral support I can.

Of course, hope this thread comes to a swift conclusion with a benign diagnosis.

Illness of a child - can't think of anything worse. So sorry about all the anxiety that you are going through

(droile - the consultant I met was Connor Mallucci, v charismatic and kind, just lovely. He sees about 50 cases a yr. let me try and dig out some more info for you and CAT you, xxx)

Bundle & Fastasleep, I can't thank you enough, I'm in tears thanking you. I've got an appointment with a GP this afternoon and I thought I was going to be going in to her with nothing but wishful thinking about Alder Hey. Now I've got ammo. I just hope and pray she agrees to refer him.

I'm feeling a bit lost today.

droile, I'm sure the people in Manchester are good too. Have CAT you, and will send you all the info I have (basically a transcript of an interview with Mallucci re: tumours in children) but please don't fret if you don't get referred over there, I'm sure they are very good at what they do too. xxxxxxxxx

The big 3 are Liverpool, GOSH and Birmingham but around 15 or 20 other centres do treatment too for brain tumours, Manchester must be one of them.

Droile I've only just read this, sending you all our best wishes, we hope you get through this trying time quickly and safely {{Hugs}}

Manchester? - likely to be a big teaching hospital? Generally teaching hospitals tend to attract some of the 'best' medical staff