Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Children's health

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

Original poster

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:
Original poster
Trazzletoes · 29/07/2013 22:32

It's a good thing re: c diff! He's a carrier so has had it as an infection 3 times so far, I think... But they have tested his business and although the baddies are still present, they can tell the difference between them being present and them running riot and infecting him. They aren't infecting him so the diarrhoea can be treated ( they wouldn't treat him if he had an infection as it would be counter-productive - the body needs to be rid of the bacteria ASAP) and he can come out of isolation (he was isolated a bit again today as they had let him out too soon!).

OP posts:
onedev · 29/07/2013 22:43

Glad today was a better day. Hoping it continues tomorrow.

greenhill · 29/07/2013 23:14

Glad you felt reassured by the consultant. Here's hoping for a good night's sleep and a better day tomorrow.

Nocakeformeplease · 30/07/2013 08:38

I'm so glad you managed to speak to Joes consultant and that he was able to reassure you. Am thinking of you and your gorgeous boy and desperately hoping that things stabilise so you can get treatment progressing again x

Almostfifty · 31/07/2013 07:14

How's things Trazzles?

Original poster
Trazzletoes · 31/07/2013 07:29

Singing along to Postman Pat while I'm trying to sleep Angry Grin

OP posts:
Original poster
Trazzletoes · 31/07/2013 07:53

That's Joe singing, me not sleeping...

He was taken off his I/v feed last night which will hopefully settle his liver a bit. DH was in overnight... Recently J has had quite unsettled nights, needing on average a nappy change every hour until around 1am or so then calming down a bit after that. He only had 3 last night and none since 9.30pm! They class diarrhoea as 6 dirty nappies in a 24 hour period. I think yesterday he had 7 though some were tiny... So hopefully today will bring further improvement.

OP posts:
ajandjjmum · 31/07/2013 09:31

Hope you have a positive day today - with Postman Pat, Fireman Sam and anyone else who's around!

Almostfifty · 31/07/2013 09:46

Aw, bless. My boys used to love Postman Pat. Hope for only one pooey nappy today.

CoteDAzur · 31/07/2013 10:02

Delurking to wish your beautiful little boy the very best recovery, Trazzle.

greenhill · 31/07/2013 11:24

I hope you all have a better day today and that his tummy settles.

My 3yo DS loves Postman Pat too. He's started to shout special delivery and then drops wooden bricks out of the bottom of his trousers...

TwentyTinyToes · 31/07/2013 14:39

I really hope Joseph continues to feel better today and treatment can get going again. X

Original poster
Trazzletoes · 31/07/2013 20:11

Started this morning with everyone really happy with Joe's progress and some discussion about whether he would be going home tomorrow or Friday - Doctors said Friday. Exciting!

Then, of course, he has started to retain fluid (due primarily to the Imodium). If the fluid retention gets much worse then he will have to stay in.

OP posts:
Praying4Beatrice · 31/07/2013 21:03

This reply has been deleted

Withdrawn at the user's request

onedev · 31/07/2013 22:25

Hugs from me too - such a roller coaster. Here's hoping you guys get home.

ChippingInHopHopHop · 01/08/2013 19:14

Oh love - it's so bloody frustrating isn't it! It's so sodding relentless :(

How have things been today?

Original poster
Trazzletoes · 01/08/2013 20:11

With any luck we'll be home tomorrow. He is retaining fluid but not to a concerning degree so far...

Diarrhoea was much better yesterday, got worse again today but I'm blaming that on his daytime feeds suddenly being doubled in speed (to give his tummy a rest in between but I think in retrospect we need to increase more slowly!). Everyone seems very keen to see the back of us.

We will need favourable liver results in the morning as well but they've been ok so far I think.

No one mention the "h" word...

OP posts:
Asheth · 01/08/2013 20:41

Everything crossed that you get home tomorrow . I'm sure you and Joe can't wait!

ToffeeWhirl · 01/08/2013 21:22

How long have you both been in this time, Trazzle? It feels like a long time from my perspective, so it must feel like an unbearably long time for you and Joe. I really hope you get home tomorrow.

Original poster
Trazzletoes · 01/08/2013 21:34

Toffee its been 4 1/2 weeks if you don't count the Saturday night - Monday morning we were home the first weekend. He was basically admitted on 1st July so we have missed the entire month.

Yes, it's a long time. I so hope he doesn't react like this every time but at least now I can expect it.

And hopefully it means the meds are doing their job. They seem to quite want rid of us all of a sudden and every time I raise a concern - don't worry I'm sure you'll be going anyway... Eeek!

OP posts:
ChippingInHopHopHop · 01/08/2013 22:04

LOL - it's hard to know which is worse isn't it - when they want you to stay, or when they want you to leave!!

When is he due the next one?

ToffeeWhirl · 01/08/2013 22:06

What a long time Sad. I thought it must be. Joe (and you, of course) will be so happy to be home again.

Best of luck with the liver results tomorrow. x

Original poster
Trazzletoes · 01/08/2013 22:31

He has 2 weeks at home on the vitamin a (if his liver has stabilised) and then a week of injections as an out-patient but may need in-patient care, followed by a week as an in-patient. It's those 2 weeks that have messed up his guts. It may or may not happen again. They can't know for sure.

OP posts:
greenhill · 01/08/2013 22:31

Good luck for the liver tests tomorrow.

Hassled · 01/08/2013 22:34

4 and a half weeks - my word, you must be beyond shattered. Fingers crossed you're out of there soon.