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.

here is batters's thread.

i think you mean frida kahlo? there is an exhibition on at the tate atm (or recently finished) so you might find some inspiration on line if you want to make a project of her.

much, much love to you and your family, bkxxx

Frida Kahlo Exhibition

Thanks bossykate, yes, that's the monobrowed Frida. I just saw a photo of one of her paintings in the paper where she was stuck up a tree and thought the moonlit background was very dreamy. I'm crap at painting, but I can do good night backgrounds.

Droile,

Glad you had a better day

re: "Maybe I could just send out a roundrobin or email telling people that the limbo period is hell and can they help fill it by dropping in for coffee"

I reckon if you contacted friends and told them that you would get lots of visitors. What stops most people is not lack of caring, but concern that they might be intruding. An open invitation will reassure them that you don't mind them 'bothering' you (as they might otherwise perceive it). Go on - do it!

Droile - glad you had a good day. The round robin is a good idea. I did that to let people know what was going on, mainly because everything was so hectic it was easier to keep in touch that way. The response was great.

Thanks for asking about dp, his headaches disappeared completely once everything had healed up.

Another better day. He only had one seizure. A good job, because there was a message from the helmet people (OT's) that there is a 5 month waiting list for assessment to see if he needs a helmet, but they'd squeeze him in on 30th August. Why they can't just take the consultant's referral I don't know. You couldn't make it up, could you? They don't want me to ring back to confirm the apptm till next Monday, when the relevant person will be in. So another phone battle tomorrow. I also rang the oncologist's sec again today, but she's gone awol altogether - nothing but ansaphone all day.
Both boys had a happy day so that's the main thing. Haven't done roundrobin yet, will get to it.
Posting is helping me a lot Batters, thanks.

Droile, i have just realised that I have been doing what some of your RL friends have been doing - not posting on here because I can't think of the 'right' thing to post but of course, there isn't such a thing. I do hope your ds continues to have better days with one - preferably, none - seizure a day. FWIW, I too think a roundrobin note along the lines you have outlined is a great idea.

Hi sis, thanks for the message, don't worry, I've done it too, many times.

I've emailed the oncologist's sec and feel better to be doing something again.

A 5 month waiting list to see if he needs his head protecting from damage?
Good grief.
Sorry - was off and away - but se you found Batters' thread. Actually you have convinced me to put York on my list for trips with DS.
can't believe what busy culture vultures you all are - i am fascinated by FK - but haven't got round to going to the exhibition.
Droile - is that something we could do? Club together to get a helmet privately?

Droile, hi honey. So happy that you had another good day, I really, really am. Sorry I doidn't check in yesterday, I was out at meetings then in the eve my neighboiurs kid came to escape his moody dad and stayed for ages.
I got your email before I left for the meeting so didn't reply but did send off the DVDs o hopefully will be with you soon.
Have yu got a digital camera? If yes will you take a pic of the art you create and post it on the memebrs profiles so I can see, it sounds like it'll be great/fab/funny.
You might sneak the boys in the pic too so I can see the little monkeys???
Anyway, hope today is sunny for you in all ways. Your in my thoughts al the time, TC x

Thomcat, it came this morning, all new and shiny - they're going to love it. Thank you so, so much. Haven't got digital camera but friend has, so can post art eventually. (It won't be great or fab, but it will be funny..)
Have got pics of boys on pc though, so will work out how to put them on members profiles so you can have a look. (Don't hold breath though, it takes me days to fathom out how to post links let alone....)
Blu, I could drone on about York and kids for ages - might do some more on that travel thread. As for the helmet, thanks for the offer, but we'll get it somehow. I think it's a good one for the MP to look at, whoever he or she might be...but we won't wait for that, we'll kick ass and get it. I'll keep you posted. In the meantime, it's bike helmet in the garden whether he wants it or not.
He's had 4 seizures today so far.

Oh sorry to hear it's 4 already today
TC xxxxxxx

They are watching ET now and loving it. Thanks again, Thomcat.
I've got cold feet about the roundrobin it feels a bit like a summons, a guilt trip. Any ideas about more subtlety? It's great for those who just wanted a green light, but for those who had no intention of coming, there might be awkward gaps in the conversation. I've got a feeling there must be another way. Or am I being stupid?

Thanks ks.

Droile

I don't "know" you as it were, but just read your thread and wishing you and yours all the very best. I truly hope things get easier for you. I'm sure there isn't much we can do at this distance, but I'll be looking out for you. Take it easy. Much love.

Have just caught up with this thread and want to join everyone in wishing you, your family, and particularly you're little boy, success with his treatment.

xxx

Droile, I am another one who has been watching your thread but haven't posted as I just haven't known what to say. So sorry that you are going through this . Am thinking of you, your family and especially your ds.

droile, can't you write the roundrobin so it's more like news about your son - and the rest of you, the add on paragraph at the end saying visitors are very welcome. I think just the fact you are sending a round robin will make your friends see you want to communicate and are thinking about them. That's should be enough to prompt some of them at least to contact you about visiting.

Droile, so sorry to hear this. I'm in the northwest too, don't hesitate to ask if I can help in any way.

Evening Droile, hmmm, I get what you're saying about roundrobin, i wouldn't feel too great about it either. I reckon that you DH texting a select few people to say could they check in on you is still an ok way, or with email, tailor type each email to each person. But best of all, phone them, phone the people you miss and need more support from and say 'Have you got a minute, I just need to hear your voice, feel a bit low/worried and just want to chat to my mate about normal stuff for a bit.' and then at the end of the convo say 'thanks, I just really need to know my friends are there for us right now, it means so much'. ????????

Glad they liked the DVD. Did you do any painting?
I've got a friend coming over tomorrow and we thoguth we'd take the kids to the farm but it's meant to be raining, so trying to think of something else to occupy a 3.5 yr old NT boy and a 3.5 yr old SN girl. An adventure playground would be great for him, not so great for her.
What are you up to tomorrow and over the weekend?

Hope the fits were few today and hope they are fewer still tomorrow and over the weekend.

TC x

Droile, can we help with getting a helmet? Is it a special type? What do you need, say the word, you know we'll all do whatever it is. Love to you and your boy. x

Thanks all.
Tigermoth, the 'news' roundrobin is an inspired idea. It shifts the 'purpose' of the missive. Ditto selected phone calls, Thomcat. I'll get on with both tomorrow.

Tomorrow is the great painting day. Just wait, ds1 will announce that he doesn't want to do any, but we'll get on with it anyway. How far would you have to go to the farm? It might not be raining - it was supposed to rain here today, but didn't.
Thanks Bosscat.
WWW, the helmet is specialised, with padding around the ear etc, coming further down than a bike helmet. I get the feeling that it's more a matter of being assessed to get one than being able to pay.

hello again
I've just been catching up on your news and am hoping you get the answers you want from the med team asap and that this helmet can be got a bit earlier than predicted - a 5 month wait is so rubbish! It must be very very hard having to wait so long - I'm sorry because earlier I posted that it might be good to know about it in advance - I was not imagining it would be so far in advance.

Be gentle on yourself too - you would be a saint not to be short tempered with the kids with the pressure you are under. You are a wonderful mum doing a great job!