My beautiful Joseph with his blue eyes, ready smile and arms always open for a hug or a tickle fight

[Trazzletoes]

He has survived the most horrific cancer treatment with his smile, joy and love intact. Unfortunately the neuroblastoma has survived too.

Trazzle what a hard thing to have to do, tell everyone. I would imagine the more people you tell the more an unreal situation becomes real . Your bravery and dignity shine through your posts. I know you've got some hard decisions ahead but I believe that you and your DH will continue to make the best decisions for your beautiful Joe.

Delighted to hear that a trip to Disneyland Paris is a possibility.

I now have my appointment for 9am on Friday morning so pity the poor member of the NHS who has to deal with me . I shall channel my inner super-Joe and will donate a pint of my red stuff without crying but I might sweat a lot

I hope you all get to Disneyland Paris glad to hear it's an option x

Oh Trazzles, what tough decisions you're having to make for little Joe, and having to tell others the bad news must be hideous.

I really hope that Joe stays well and you can all enjoy sme amazing times together - just ask if there's anything he's like. Between us I bet we can pull anything together - this is MN after all.

As others have said, I'm so so sorry. This must be unbearable & I don't know what to say. Just wishing you all strength & sending much love.

If there's anything you need to make DLP happen, please just say.

So sorry to read this.xx

So sorry to read your updates. Also willing to donate to send your dear little son to DL. I really feel for you all.

So sorry to read your updates. You and joe are constantly in my thoughts. It is so deeply wrong that any child should have to go through this. I will be donating blood. I wish I could do more. X x

'We are out-patients today at the hospital for various reasons and keep coming across nurses who have been looking after him commenting on how brilliant he looks and how well he is doing and then I have to tell them'

Oh, Trazzle. I'm so sorry!

We never had to tell anyone, although Aillidh's odds of long-term survival were very poor and she was ill in PICU for nearly a fortnight before she died, it was still relatively sudden, but I still can't bear the thought of going near that hospital or unit.

(((())))

Devastated for you all to have had this news, lost for words really. As always I will continue to hold you in my thoughts and hope that the decision making process for you and DH is as easy as it can possibly be, if you know what I mean...not easy...nothing about this is easy..just can't find the right words really.
Love to brave, brave Joe and to the rest of the extended Trazzle family xxx

So very very sorry to read your latest posts . There are no words, but I wanted you to know I am praying for you in North Yorkshire, praying for strength really.

I gave my first blood donation in February inspired by Aillidh's story and will donate again as soon as I can - June I think. I am working on persuading my DH to donate as well.

Keep strong Trazzle and feel us all holding you up x

Telling sounds like another hugely painful bit of a hugely painful time I'm so sorry, Trazzles, and am thinking of you and Joe and the whole family.

I can't donate blood, or organs, due to medical history but can and will set up standing order to give to Cancer Research. Wish I could do more.

Trazzle, I just wanted you to know that there are many of us who haven't posted much or at all on your threads before - and many more, I expect, who still haven't - but are thinking of you.

Other friends of mine lost their little girl a few months ago . They managed quite a few of those type of trips with her - including Disneyland.

God, I'm so bloody sorry.

CRUK donates so little of what they take in to research into childhood cancers like neuroblastoma .

Booked in for the end of June. It went be within the month, but its the only date I could make childcare work. It's a really good idea, lets all try and book in. Imagine the difference we can make.

Trazzletoes my love, I don't really know what to say, but that you are in my thoughts. X

Disneyland definitely possible :)

Expat, what cancer charties support research into the likes of neuroblastoma or acute myeloid leukaemia? We have a charity night at work soon and it's my teams chance to chose the charity. I would like to put forward one.

Trazzles, still thinking of you. Although the prognosis isn't what you had hoped for, it does sound like Joe is rallying after the chemo. I know its of little comfort, but that's a positive, in a round about way. I'm sorry that's come out all wrong, I just so wish I could take away all the crap for you. Bastard cancer. (((((Hugs)))))

Neuroblastoma Society hth GlaikitF?

Fizzy the Neuroblastoma Alliance has been particularly helpful to us. There is another one also called Families against Neuroblastoma.

Neuroblastoma Alliance works tirelessly to help children and families affected by these awful disease.

The Aila Coull Foundation was set up by the parents of a child treated with Aillidh who also died of paediatric AML and their charity is whom we donate to now as 100% of donations go to research into paediatric AML, a poorly understood disease with largely very poor survival rates, though AML accounts for 20% of all paediatric leukaemia cases.

X-post with Trazzle.

Sadly, last week, we attended the funeral of another child taken by neuroblastoma who had been treated when Aillidh was alive, too.

Our friends found www.nsoc.co.uk to be a massive help when their son had neuroblastoma. Absolutely awful bloody disease. My heart goes out to you and your beautiful boy.

Thank you I will have a look into them. There won't be a huge donation, but whatever we raise my work will match it pound for pound. I would rather see it o somewhere that has made a difference to someone I "know" iykwim.

Dh is giving blood on Friday as the van is at his work! He roped in 5 other people to go along with him. All for joe and ailidh xxx

I would like to help Joe go to Disneyland. When you have time, Trazzles, please can you post details of the charity who will be funding you?

Neuroblastoma Society is run (well, chaired) by a friend of mine. They are funding a lot of great research. They're on Facebook and Twitter if anyone would like to follow them.