Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

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

Joe vs. The Cancer

999 replies

TrazzleMISTLEtoes · 08/12/2012 23:26

My 3 year old DS, Joseph was diagnosed with the cancer Neuroblastoma in October.

Survival rates are approximately 1 in 3.

He's coming to the end of chemo and so far, chemo is kicking cancer's butt. 3 cheers.

OP posts:
TeaMakesItAllPossible · 28/01/2013 18:25

Oh God. I sound like Father Dougal!

dikkertjedap · 28/01/2013 18:55

What a lovely photo of Joe - what a star! Smile

Gingers crossed that he can go home soon.

x

Trazzletoes · 28/01/2013 19:03

Er, yes, Tea he has grown. A lot. Despite losing all that weight he has shot up to the point where he has no trousers that fit and told me his shoes were too tight as we left for the hospital last week.

He is not even 3.5 and is wearing 5 year olds' clothes.

Everyone is expecting us to leave tomorrow. His appetite is still non-existent (apart from custard!!!) but he is drinking and has walked to the playroom 3 times today. He has been sat up practically the whole time. He has only had paracetamol once today as well (which is good because we can't give it to him at home).

He's doing fab, thank you all.

thewhistler · 28/01/2013 19:31

Brilliant news and hurry for custard.

narmada · 28/01/2013 20:07

Hurry to the custard Wink! Really pleased is going as well as can be and hope you're all released tomorrow.

onedev · 28/01/2013 21:45

Well done Joe Grin

Cookingupastorm · 28/01/2013 22:33

Again in my thoughts and prayers...sending love to you all xxx

TeaMakesItAllPossible · 28/01/2013 22:51

Cor. That's some growing. Good on him. Fighting his way through everything he has to and growing!

It's hard for little ones that look bigger than they are. People expect so much of them and emotionally they're just little still.

Custard. Yum.

ToffeeWhirl · 29/01/2013 00:02

That's great news! I really hope he's well enough to go home tomorrow .

MaggieMaggieMaggieMcGill · 29/01/2013 00:14

Glad to hear that 'the operation went well. Any news on the biopsy?
The two months chemo is going to be tough (understatement of the century).
Have you heard back from the McMillan nurse?
More splodgy light coming from north London xx

Trazzletoes · 29/01/2013 07:28

Initial results may be back next week but they have no impact on how's treatment so it's more for our curiosity than anything else: how dead was the tumour, were there any surprises...

Not heard from the Macmillan nurse at all and not seen Joe's consultant on this admission . Currently no idea when we are due back... Whether its next week, a fortnight, a month...

Joe has had a settled night so we should be home today unless they are concerned that he is barely eating - but he is tolerating his overnight feeds ok.

We also need Joe's NG tube changing which is frustrating too because no one wants to do it so we have been fobbed off with excuses for the past 2 days and now can't leave til it's done. I've just realised I can take him round to the oncology clinic if I have to though and get it done there, not that they will prioritise it either but at least the chairs are comfy.

MaggieMaggieMaggieMcGill · 29/01/2013 09:05

That all sounds unnesscescarily frustrating, hope everyone pulls their finger out soon!

dikkertjedap · 29/01/2013 09:07

Sounds very frustrating that his NG tube hasn't been changed and that you have to chase it so much. Hopefully, it gets done soon and Joe can get home.

I hope that the Macmillan nurse contacts you soon and that you don't have to chase her as well.

Otherwise are there any other people who can give you the information you need? Would the Neuroblastoma Alliance be able to answer your questions???

I hope you all have a good day and that things will go as smooth as possible.

Trazzletoes · 29/01/2013 10:11

Tube is now done as I told today's nurse that I was fed up of waiting, she had drawn the short straw due to her colleagues' faffing and I had had enough.

Am packed and just waiting for DM to arrive so we can leave.

We will get the info at some point and I'm certainly not letting them lay another finger on him until we've been given all the details. We still don't know when we are due back in, but that's nothing new. It's just frustrating.

dikkertjedap · 29/01/2013 14:20

Hopefully you are all home and having a good day.

I am sorry to hear that it is such a struggle to get the information you need. I know there is a lot of short staffing on the NHS but that cannot be a valid excuse. It seems more like a management issue. Do you have a specific person to liaise with, eg consultant, specific nurse etc. or is it totally random depending who is on duty?

I hope it gets sorted soon, not fair on you, not fair on Joe.

Sad
TeaMakesItAllPossible · 29/01/2013 15:49

That's really frustrating - must make it very difficult to plan anything. Do other patients at this stage of the treatment have the same wait to find out exactly when?

Am [smiling] at the thought of you and Joe sitting with your coats on, mittens on, bags all backed and ready to go. Reminds me of leaving hospital with a new baby or going on a school trip.

May home be warm and cosy. May you all get rest and fortitude for the next stage.

onedev · 29/01/2013 18:47

Sorry for the frustration but hopefully you'll be nicely settled at home now.

thewhistler · 29/01/2013 19:39

V frustrating but nice assertiveness is the way through and you seem to be good at that, well done.

Holding you in my thoughts.

ToffeeWhirl · 29/01/2013 20:33

Trazzle - well done for being so assertive. Your son needs you to be just that. Hope you get home soon. X.

hellohellohihi · 29/01/2013 21:27

Enjoy getting home. Joe sounds amazing. Hope you have a settled night tonight too x

Trazzletoes · 30/01/2013 07:10

Ooh I've had the nicest sleep!

Bit the bullet and applied for a blue badge yesterday when I realised how helpful it would have been yesterday.

Because of where the operation was Joe is struggling with core strength. He can't climb and struggles to walk any distance so I have to carry him everywhere (despite losing weight he is still relatively big) and its hard to manoeuvre him in to his car seat. Extra space would have been very welcome.

narmada · 30/01/2013 12:00

Glad you had a good sleep - it makes life so much better.

tholeon · 30/01/2013 12:35

So glad you had a good sleep. I hope that you find someone to answer the questions you have soon, having to wait isn't good. X

dikkertjedap · 30/01/2013 20:48

I hope that you all have had a good day.

Hopefully you will get the blue badge soon and I also hope that the Macmillan nurse has contacted you and has been able to give you the information you need.

x

NorksAreMessy · 30/01/2013 22:33

Night night trazzles
I am sprinkling you with some more lovely sleeping potion :)

Swipe left for the next trending thread