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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Children's health

Joseph's ongoing journey with Neuroblastoma

997 replies

Trazzletoes · 13/05/2013 22:24

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

OP posts:

Report

Ragusa · 06/09/2013 21:43

Getting a card in to Cbeebies on time has always been one of those things I've aspired to do... DD has given up asking now . So kudos to you for doing it.

Sorry about Joe's stomach issues, hoping it settles down over the weekend. Hope there's some pain relief he can have.

bobkate · 06/09/2013 21:48

Happy birthday to Joe, albeit belated. Really hope he enjoys his special birthday weekend xx thinking of you all often x

TeaMakesItAllPossible · 06/09/2013 22:47

A card on Cbeebies. Ok I'm impressed. Glad Joe is impressed with it really too. Love that he's playing cool already but lovely kind boy thinking of his sister. Poor you. I marvel at the creations that are shown.

And completely understand how you would keep details like that private so no apologising Trazzles - may the party be ok and not too traumatic.

Sorry to hear his tummy is still painful. Such a brutal treatment. He's amazing that he continues to make progress - like the standing. Here's to less pain, more standing and a bit of walking and kids that tidy up the playroom over the weekend.

tholeon · 07/09/2013 17:38

So hope the party has gone well, happy belated birthday dear little boy. Very impressed by cbeebies card making x

Trazzletoes · 07/09/2013 22:53

sorry, party is tomorrow... Although our house does look like its already been trashed by many children!

OP posts:

Ragusa · 07/09/2013 22:54

Well, here's to the fabbest birthday party ever, in that case .

onedev · 07/09/2013 23:02

Have fun tomorrow!

saffronwblue · 07/09/2013 23:05

Thinking of Joe- hope the party is lots of fun x

Trazzletoes · 08/09/2013 05:47

Thanks, its happening over lunch because at the time he was getting tired mid-afternoon. Now, of course, he has to go for a nap at bang on 12 so whether he'll be awake for any of it remains to be seen. We'll do the cake first anyway.

OP posts:

minmooch · 08/09/2013 08:02

The sun is shining here Trazzles hope it is for you and for Joe's party. Xx

Almostfifty · 08/09/2013 09:02

Hope it all goes well and that he's so excited he manages to stay awake for it.

MrsFrederickWentworth · 08/09/2013 15:50

Hope it went well and you can now recover.

onedev · 08/09/2013 16:27

Hope it went well today - it must surely be wine time now so hope you're able to relax!

Praying4Beatrice · 08/09/2013 22:26

This reply has been deleted

Withdrawn at the user's request

Trazzletoes · 09/09/2013 06:32

Thank you all. What can I say? The party surpassed my wildest dreams. Joe has had a tough week recovering from being in hospital. He's barely moved from in front of the TV, back to square 1 again with his walking. As in, he isn't even trying to walk. Party was 12-2 but this week he's been having a desperately needed nap by 12.30 every day...

First of all he refused to see the other kids when they arrived but I think he's so unused to boisterous, "normal" playing it takes a while. After a few minutes his curiosity was piqued. And then he saw the bouncy castle and off he went! He just wanted to bounce and was really trying to walk. He didn't really talk to his friends but he was joining in with pass the parcel and it was wonderful.

He had to have 20 minutes to himself in the middle to watch Octonauts and calm himself down but afterwards he wanted to go straight back on the bouncy castle. He even tried some sweets! This is the boy who hates having food in his mouth...

He even managed not to nap, though by bedtime he was a screaming wreck but I guess that's not too unusual for children on party-day...

It was still a bittersweet day though. His party was exactly the same as last year. Last year we had no idea that anything was less than "perfect". There was no question in our minds that organising his parties would stretch on for years in to the future.

The contrast between him then and now is like being smashed in the face with a sledgehammer. And what about next year? Will we still be timidly celebrating another year under his belt and sending him off to school? Or will it be no celebration at all?

OP posts:

tholeon · 09/09/2013 06:42

Morning sweetie. So lovely about the pass the parcel and the bouncing and the sweets. Clever boy. But yes it must seem like a sharp and utterly wrong contrast to last year. Love x

ClockWatchingLady · 09/09/2013 08:01

Good morning Trazzles. What a little STAR! Bouncy castle, sweets, pass the parcel... That sounds amazing.

And, for you, probably every emotion under the sun (alongside unbelievable exhaustion?).
Sending a massive hug.

Almostfifty · 09/09/2013 08:26

Oh bless him, I'm so glad he enjoyed it.

I hope you had a glass of wine when you got them both down.

ToffeeWhirl · 09/09/2013 10:07

I'm so happy for you that the party went so well, but completely understand your bittersweet feelings. Nothing is normal or easy anymore, is it? ((hugs))

TeaMakesItAllPossible · 09/09/2013 17:36

That wee boy of yours knows how to pull it out of the bag doesn't he?

Glad the party went well. And yes, it's completely normal for them to be a screaming mess in the evening or at the gates of DS2's secondary school in front of 400 teenage boys

God, I really want him to have birthday parties for decades
Trazzles. It must be so bastard hard to have every joyful moment with a "what if" attached. I know I've said it before but are an amazing woman.

MrsFrederickWentworth · 09/09/2013 21:12

Fantastic, well done all of you, and no matter what happens, best or worst, you have given him a most wonderful day. To be brave enough to try the sweets is amazing. And to bounce before and after, go Joe.

Yes, screaming mess in direct proportion to success of party. Saddest ones when Ds didn't enjoy because ill or people were foul, so was perfectly behaved at end.

Well done that Joe. Hope dd had little bounce too...

onedev · 09/09/2013 21:23

Well done Joe - he is a star! I can only imagine how bittersweet it was for you - it must be so tough. Hugs.

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Hassled · 09/09/2013 21:26

I'm so glad he had such a happy time - and you should be bloody proud of yourself for creating such a happy time.

The bittersweet thing - it sucks, so so much.

PoppyWearer · 09/09/2013 21:28

Happy Belated Birthday Joe! I can well understand your mixed emotions, but well done for getting through the party, Trazzle.

Howstricks · 09/09/2013 21:28

Good on you Trazzles..thinking about you all and wishing you well x

Flip

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