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.

Thanks morocco. I've managed to reign my temper in over the last few days and feel much better about it now. They are both behaving better since I did that, which is illuminating.

I think I must be going through various phases, as I seem to change every few days.

Droile, can you pay to be assessed? Can we help? Off to work now but back much later.

Droile - just catching up here. I too think the 'news' mail is a good idea, hope you find that it's the 'polite nudge' that some of you friens need.

Any news from the secretary yet? - keep nagging. Hope you have a lovely day today with as few seizures as possible. And don't forget that we're waiting to see the photo of your boys.

Don't know www, but I'll ask when the dude I'm supposed to ring on Monday shows up.
Just received a copy of the letter the gp I went to see before our holiday (about transfering to Alder Hey) has written to Mr Mallucci. Trouble is, she only posted it last Friday. How much longer is that going to hold things up? Meanwhile, the Manchester oncologists sec trundles along without getting back to me.
Ta potty1.

some info I found on protective helmets. apparently hockey helmets are very good protection but I can imagine quite claustrophobic to be worn all day. helmet info

Here's one of the companies that make the proper medical protective helmets - you can order through the website but you need to register first and I couldn't see a cost. Danmar Products
"Other helmets are made especially to protect people with medical needs, including very small children. Some of them come in choices of style or color that may be more appealing to those who don't want to look like a hockey player. Lightweight, hard-foam helmets made by Danmar, for instance, provide good protection. Danmar helmets come in a wide variety of styles that can be customized for individuals with seizures. Custom-made infant-sized helmets can be ordered either through the rehabilitation department of a hospital or through Danmar Products, Inc. "

This is another crowd that make the protective helmets. These ones look softer and don't seem as intrusive. They can be ordered via the intenet and cost between $168-$182 + postage depending on his head size. It could do in the meantime if it really is a 5 month wait until he is assessed and I'm sure we could help with the costs. let us know.
the blurb: "ProtectaCap is another helmet that provides good protection. It is a soft, lightweight helmet made with core components that are engineered specifically to absorb and dissipate energy, so the helmet is both protective and durable. This kind of helmet can even be machine washed and dried! The ProtectaCap comes in many sizes, colors, and patterns to meet individual needs" Plument

Let us know - if he is not willing to wear the football helmet and you feel he needs more protection but are stuck in the limbo of waiting for appointments, this might be the answer.

I hope your painting day goes well - was never sure how to take Frida Kahlo myself, I might give her another go.
eefs

Thanks eefs, this is great. I must admit, I never expected them to be so expensive.

OK, how do you put pics into member profiles? Step-bystep idiot intructions please!

Frida is underway. She's up in her tree, but she hasn't got any hair yet.

DS1 has been v. prolific, but his masterpiece is ET, complete with neck. (The disc with solar system info is great Thomcat).

DS2 has done some circles and is v. happy.

We're painting, in case it was unclear.

Hiya, Droile...just saying 'hello', really.

the helmet sounds like a bit like a boxing one - I wonder if sports shops sell childrens boxing helmets?

Hi Droile - Glad you're having a good day. Wish we could see you art work though!

Droile - you need to start a thread in member profiles first then it gives you the option of uploading a photo. If the pic on your PC is large then you'll need to resize it. Shout if you need a hand with it.

Hiya Droile. Glad the painting was a success and am so pleased to hear that ET has gone down so well

What r u up to the rest of the w/end?

Re the helmet, Blu's idea of a kids boxing helmet is a great one.

TC x

Boxing helmet idea is a good one. That's what we'll look for tomorrow. I don't know what's happening the rest of the weekend Thomcat, it's a blank so far.
Thanks potty, I'll try that next.
Disslocated, my friend with a digital camera is coming up next week, so I'll try and get a photo of it on here.

Oh Droile how awful for you. One of my old friends has a son who had a brain tumour removed when he was a tiny baby. He's now at secondary school and doing well. He has a permanent shunt and has to have ops sometimes to replace it, but he's fine and they have just been on holiday to Florida.

Droile,

From your posts you sound like you are coping a little better recently - not that you should feel obliged to be strong / brave etc, but it's just nice to hear you sounding less frazzled. Nice for you I mean!

HMC, yes, I've felt much better lately, bar the odd wobbly day.
Aloha, that sounds positive. I've been wondering about a shunts.
Good news in the post - the oncologist will see him next Thursday. At last!

Oh good news Droile.

I wonder if you'd take a few tips from someone who see's loads of consultants.....?

Write down a list of all your questions.

Take your time to ask them all, don't be rushed and make some notes if you need to.

Ask to receive a copy of the clinic letter (the one that's sent to the other members of the team and to your GP) or a summary of your appointment. It just helps to clarify things for you.

Sorry if this is just telling you stuff you already know, I wouldn't want to offend .

How's he been today?

Thanks Potty, good ideas.
He's been much better, thanks. He had a seizure-free day yesterday! Fingers crossed.

Is it today Droile? If so, good luck, I hope you get a clearer picture of what you are dealing with and a good idea of the next step.

We are at orthopaedic review today so I'll think of you in your waiting room whilst we sit in ours.

Take care.

Only just seen this thread - so sorry to hear about your Ds. Sending you lots of postive vibes

Can I add my sincerest wishes for your son. Hopefully now that summer is nearly over and everyone is back from their holidays things will start moving.

Hey Droile.
A seizure free day, wohooooo, how fab, so, so pleased.
And great news about the oncologist, let us know how it goes won't you.
TC x

Hi Droile. Wishing you more seizure free days and that things get moving now.

Thanks for remembering, guys.
When we finally got there (caught up in massive M6 jam) they were hopping mad with Preston hospital for not sending his scan results back down in time - they arrived 5 mins before we did. The oncologist apologised for the delay - it turns out he hadn't received the referral letter, so if it hadn't been for my calls and emails, we'd still be waiting now!
Anyway, he wants to have a biopsy done. He can't tell what type of tumour it is otherwise, and although he has 5 possible names for it in his mind, he doesn't want to name it until it's biopsied, which is fair enough. He said it's a rare spot to have a tumour (corpus callosum, the bridge between the hemispheres) and he's never seen one there before. He thinks ds was probably born with it and it's causing problems now because it's grown. Biopsy will be in 4-6 weeks.

Alder Hey will probably not happen now, because none of them got things moving fast enough. By the time they put him on their list for assessment, he'll be in Manchester having the biopsy. We were in a better ward yesterday, but when he has his op, it'll be back to the grotty one
Being back there brought back all the shock of it and my dinner tasted of cardboard again last night, but feeling better today.
Potty, hope your review went well too.
This our 7th seizure-free day!

Good to hear from you Droile. Don't you just love the M6? Yippee to 7 seizure free days, long may it continue.

Glad it went OK and that you have a (slightly) clearer idea of what's happening. It's not good when you have to keep on at them to get things moving forward but it often seems to be the way I would say keep Alder Hey on the boil a little longer only because if this is an unusual site for the tumour they may have more experience when the time comes for further treatment.

Will be thinking of you over the next few weeks whilst you wait for the biopsy. Take care and keep us posted.

Everything was fine with us,thanks. Waiting (interminably) for another CT and review again in a few months