Still no cranios found this site?

[rochelle]

Hello out there,

i feel like i am talking to a big open empty space where there is only blackness and i am shouting but there is no one to hear me!!!!!!!!!!!!!

How can i find parent carers of Cranios? I know we are a rare breed, being that a craniopharyngioma is 1 in a million, but there should be more than just my son. I have managed to find TWO others in the UK, but where are all the others???? Only you people know how i am feeling - WHERE ARE YOU ALL???????????????????????

Rochelle
XXXXXX

[moge]

You are not alone, you can't see me, and all of us at p chat, but we are here, wishing you and your babe well.

I have been in touch with a young mom on twitter with an 11 mnth old, there is another on Cafe Mom who has this. I've done some studies on this recently, Cranios are what 17% of all child hood brain tumors? If I remember right, but that is close. They are out there, I'll remember to send you links as I come across them. I'll dig those links out for you later today or tonight on the other moms who babes have this that I have already tagged.

moge

[carwal]

Hi Rochelle

It's Caroline

How are you? How is Taylor getting on? It's so frustrating that we seem to be the only parents from the Pit Foundation that have found our way here! Where are they all? By now we would have all met up but communication was lost. I know Henry's tumor wasn't a cranio but we all now have similar issues to deal with post treatment. Shall I PM you with my tel number? Can you Pm on this website?

Anyway speak soon.

Caroline xx

[moge]

Hi again,

Sorry I got distracted, If you Twitter this lady has a baby boy with p. tumor. Newly diagnosed, her name there is CBS247. I'll dig the other name out later.

moge

[Bubbles]

Hi Caroline
You can PM from this site.
On the right hand side where it says your name, location etc, there is a little man with pm next to him.
Thats where you need to be.

and yes, where are all the Cranio mums and dads, there were quite a few of them on the other site.

Bubbles

[Paul Clarke]

Hi guys,

just thought I would pop my head in here to borrow some sugar for the coffee. Is there anyone that had a good relationship with the Foundation that might persuade them to alert the relevent people that we are here? Is there another way of getting in touch with them by email? Kit Ashley still refuses to acknowledge my emails, or indeed, any emails that come from an Irish IP address. It would be so much better if they could be persuaded to work with us.

I have proposed marriage to Kit but she didn't reply. At least it wasn't a no! What should I do with the ring? I think I should bring it back to where I got it and get my €1.99 back.

Paul

[sadie]

Hi all it Jakes mum from the Pituitary foundation ,
So this is where you all are , I have been googling pituitary forums for ages on AOL , have downloaded google chrome and up you popped , how are you all ? Well done paul for setting this up you gave me some great advise on the pituitary foundation website , you always spent time on your replies and Im extremely grateful for your help .

Rochelle and Caroline how are Taylor and Henry and yourselves , good I hope ? Im going to have a good look around the site now.

Take care Sadie xx

[Paul Clarke]

Hi Sadie

Delighted to see you here, you are more than welcome into our community. Most of the old guys are here and a lot of new people too. This forum is a little different to the Pituitary Foundation's. You can speak freely here. We have had over 1,800 posts since we set up and have not edited or deleted one yet.

Beware of Ratbags. She keeps getting out of her cage and yes, hr bite is worse than her bark but on the whole, she is harmless.

Looking forwards as ever to reading your posts. If you know of any other "lost Souls", let them know where we are.

Regards for now...

Paul

[rochelle]

Hi Sadie,

So nice to hear from you again!!!!

Taylor is doing ok - i will tell all another time - very tired - working too hard, going to bed now.

Speak soon

Take care

Rochelle

ps - How is Jake doing (and you of course!)

[sadie]

Hi,
Thanks for the welcome Paul I just wish I found the site a few months ago , I was in the process of moving house when the pituitary foundation abruptly shut the forum down , so I wasnt online as much as usual but netherless I felt totally lost as that was the only place to speak to other people facing the same issues as our family . Great to find this site and Im glad you took your time and knowledge to help others also thanks to your wife as Im sure she is still very much fighting your corner and helping you run this well done to you both .

Rochelle Im glad Taylor is ok and Im looking forward to an update ,Jakes ok too he recently had an eye test and as you know he lost the sight in his left eye but the right eye has improved since his last visual fields so pretty much normal sight in the right eye thankgod ,he is due a MRI scan next month so fingers crossed ! lifes still full of worry as you are aware but at least thing are better than 2 years ago ! also due to the GH he is 5ft 8 inches now and hes not even 13 until january the 18th i have to look up to him now as Im only 5ft 5inches ! Look forward to hearing from you Sadie xx