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.

We are in Leeds

Another one emerging from lurkerdom to join the throng of support for Joe. Crossed gingers all the way here.

No one would ever judge you for a decision like that. You are only deciding what you think is the best for your beautiful boy.

Anything, anything that you need help with, just ask. We are all here to help.

So sorry & sad to read your news Trazzle - that's horrendous! I don't know what to say but as others have said, if there is anything at all that you need, please just shout out.

I hope Joe enjoys the penguins & you all have a lovely day together.

You are inspiring & no one would ever judge - it's clear for all to see that you only have your DD & Joe's best interests at the heart in everything you do.

Still splodging & gingers crossed, praying for a miracle.

Splodging into your new thread and sending Joe lots of love and strength. I can't even begin to understand how you must be feeling, but can only repeat what others are saying that you are in my thoughts, that I am here for handholding and chocolate and anything else you need. Hope you have a lovely day today - you all deserve some fun. xxx

Words feel so inadequate sometimes. I'm so sorry for all you're going through.

Have a lovely day today, I hope the penguins are on form.

So much love and light to you all from the wide, open, blue skies of Cambridgeshire Trazzle. We're all thinking of you and Joe x

All you have ever done, all you have ever thought of, has been for Joe. No one will judge you for whatever choices you make.

I hope those penguins do their stuff. I recall taking Ds at the same age to Harewood to see the flamingos. Very cheering.

You know that anything we can do we will, whether virtual or real, whatever you ask.

Thank you, toomuch.

Trazzle, do you have a social worker who can help you get any practical support you might need? Are you getting any benefits you are entitled to?

Homestart are wonderful, they could offer a volunteer who could entertain your DD for an hour or two each week.

CLIC Sargent has a holiday home in Scotland which is free, carers available and hospital very near by.

He loves the flamingoes too but he loves the penguins best.

Oh golly, I am so sorry

Thinking of you x

So sorry to hear that trazzle. Sending positive vibes from across the Pennines.

lougle yes thanks, DLA and Carers Allowance plus J's blue badge.

Social Worker is great but he doesn't know this news yet. I'm expecting we will see him, and our Macmillan nurse, on Monday too.

We are looking in to the possibility of a few days away. I would dearly love to take Joe to Disneyland Paris but its probably not possible, I don't know. We have a great charity attached to the ward, too, Candlelighters, who also have holiday homes round and about. Thank you for the information though. It's very helpful.

I hope your DN is doing well. It's a very difficult thing to go through.

Thinking of you. So sorry to hear this.

Yup, the penguins are very funny.
And like all the Disney films.
We never managed to see a baby.
Enjoy.

Big love to Joe and all of you from SE London. I have two friends battling breast cancer at the mo. It truly is a bastard disease (we have our own word for it which involves slightly changing the first 3 letters but it's rather rude ) It's all so unfair, I hope you have a lovely day with lots of sunshine and penguins. Xx

I know there are no words to comfort you but please know you have a whole army on your side.

for Trazzles and family
XOXOX for the gorgeous Joe

Oh love. I hope that you manage to get some enjoyment out of today, the term 'life limiting' is so bloody cruel. My DD2 has a life limiting condition,
we don't know what the future holds for us, she might grow to be an adult, she might not.

I think of you all often (but don't post often). Sending just an extra bit of love and hope across Yorkshire for you all today xx

Oh Trazzle I am devastated for you all that the consultants have confirmed the neuroblastoma is still there after all he has been through.

As parents we have to make the best decisions for our children. The best decision you made was to give Joe his best chance and that was to go through the treatment. You will continue to make the best decisions for your child and no-one will or can judge you.

We are just over 3 weeks away from my DS's scan to see whether his 18 months of treatment have killed off his brain tumour. The whole 'journey' is wrong from the moment of diagnosis, treatment that is just as hideous as the disease, the randomness of who will and who won't get their cancer eradicated, the helplessness as a parent watching, the grieving for your child even when they are still here. It is all so wrong and so unfair and there aren't any words that can make it better.

As for Joe being in the wheelchair I'm sure at the moment he will delight in being with you all, out of hospital and seeing penguins. If he is too tired then he won't fight being in the chair. We call ours 'the chariot' and my son, older and more able to vocalist his feelings, is coming to accept that he needs his if he wants to be safe and get about. He does not like it but accepts he has to use it. I have not got used to the shock of seeing him in it but it allows us to do some normal family things that would otherwise be impossible. The difference between NHS standard wheelchair and a private individually fitted chair is enormous for both the child and the person pushing so you may want to consider this.

The sun is shining here and I hope it is with you today as you go and have fun with your precious children today.

You are in my thoughts.

Xxxxxx

PS as regards the Disney idea, would one of the children's charities not be able to help? They have qualified medical staff etc. xx

Oh trazzle. This is awful news. Am thinking of you all

Joe is always in my thoughts. As are you all. I hope the penguins put a smile on his beautiful face. X

Trazzle no-one here will ever judge you. Please use your thread however you need, to rant and rave and try out ideas. Hope the penguins step up today and hope Joe has some smiley moments.
xx

I can't find any words that seem fitting to say to you.

I'm truly sorry for you and all your family. Joe especially.

No one would judge you for any decisions made now. As a pp said sometimes doing nothing is the best choice to make.

Sending you all lots of love and positivity.

X

Hope, despite everything, you are all able to have some lovely fun moments with the penguins today, and that the sun shines for you all day x