Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

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:
onedev · 19/08/2013 14:21

Fantastic to hear that he's been having fun. Fingers crossed for this week & that Calpol will be enough. Go Joe! He's such a star.

northernlurker · 19/08/2013 20:20

Glad he had a good weekend Smile

Original poster
Trazzletoes · 19/08/2013 20:23

It never goes as planned! Joe's heart scans came back fine, but he got massively upset during his ECG so they couldn't use the reading. As a result he's been admitted and had to be sedated at bedtime so it could be done. Necessary but so frustrating. He can now go ahead with his injection in about an hour. If he's then ok, after an hour we can go. Though back tomorrow morning. And possibly back during the night if he gets a temp.

Hospital is 10 mins drive during the night. Trying to decide whether to go home if we can...

OP posts:
northernlurker · 19/08/2013 20:27

I would go. If he gets a temp then you go back and kind of wish you'd stay put but it won't be a major issue. If you stay put and he has no temp but you both get a bad night because that's hospitals for you - well you''ll kick yourself all day tomorrow.

Original poster
Trazzletoes · 19/08/2013 20:48

He's so beautiful.

OP posts:
onedev · 19/08/2013 20:57

Oh Trazzle - he is beautiful. Hope you guys get to go home.

Original poster
Trazzletoes · 19/08/2013 23:31

We're home. Hoping not to go back overnight!

OP posts:
Nocakeformeplease · 19/08/2013 23:41

Will keep everything crossed for you that you don't have to go back tonight.

It's wonderful to read about the big smile on his face Smile

minmooch · 20/08/2013 01:20

Glad you are home - hope you get to sleep in your own beds all night xxxxx

Thumbwitch · 20/08/2013 08:08

Hi Trazzle - just spent some time catching up on your posts to see how things have been - still a massive rollercoaster, obviously. So glad that you've got Joe at home for now and you've been having some good times in among the rubbishy stuff.

Still got gingers crossed and light splodging from Aus - prayers too. xx

tholeon · 20/08/2013 20:09

Of course he is beautiful. Glad you are home and that he met Igglepiggle and Captain Barnicle xx

Quangle · 20/08/2013 21:40

Hope you and the beautiful boy sleep well.

Original poster
Trazzletoes · 20/08/2013 21:49

Joe's tummy has already started to go wrong again. He's been sick a few times today and his food seems to be going through pretty quick again.

Although he's not neutropenic, if he gets a temperature he'll be kept in hospital and treated for c. diff. As temperatures are a common side effect of the treatment, I'm geared up for a 2am dash in. I'm feeling quite despondent that his gut is already struggling. He still has almost a fortnight of these injections to go. Sad

OP posts:
ToffeeWhirl · 20/08/2013 22:02

Oh, Trazzles, I'm sorry Sad. I hope you don't have to go in again in the early hours.

MrsFrederickWentworth · 20/08/2013 23:15

Will Splodge for you tonight, not sleeping so might as well be productive.

Poor him, poor you, love and strength to you all and especially his gut. He has so much guts in the metaphoricsl sense, we will just think of his actual one.

IwishIwasmoreorganised · 20/08/2013 23:20

Hope you all manage a settled night at home

XxX

Thumbwitch · 21/08/2013 04:59

Poor little Joe - will cross everything, light everything and pray that his tum settles down. x

Original poster
Trazzletoes · 21/08/2013 07:26

Amazingly we've all woken up at home! His temp got up to 38.3 - at 38.5 its straight in to hospital... Above 38.0 we have to wait an hour and redo it. It dropped to 37.3 so back to sleep! Am shattered though.

He's just woken me up and is singing the hokey-coked Grin

OP posts:
onedev · 21/08/2013 08:15

Yeah!! Grin

MrsFrederickWentworth · 21/08/2013 08:16

Can imagine how tired you are, with that thermometer doing the hokey cokey too.

But lovely you are still at home with cheerful music. Ace Joe.

tholeon · 21/08/2013 20:12

Oh poor you and him with his tummy troubles. He sounds so sweet and lovely with his singing, just the sort of thing my little boy would do. When will he be four? X

Original poster
Trazzletoes · 23/08/2013 16:45

He'll be 4 in just under a fortnight. Really hoping he won't be in hospital... But there's a good chance he'll be an in-patient.

So far he's had a load of high temps this week but thanks to good organisation from the nurses we haven't had to bring him in overnight. That may change tonight - you never know!

He's going to need a blood transfusion over the weekend at some point - he's 2 points above where they will normally transfuse which is slightly irritating as anaemia symptoms are all things he already has - pale, irritable, lethargic, nausea... I'm not very good at spotting it even when I'm looking for it.

He's been so brave putting up with the injections this week. In so proud of him. He hates them because they hurt but he's let the nurses inject him without too much fuss.

OP posts:
barefootcook · 23/08/2013 20:38

He's such a little trooper. Do you have any plans for his birthday yet or will you wait until closer to the time?

onedev · 23/08/2013 21:35

He really is doing so well - fingers crossed you're all at home for his birthday!

MrsFrederickWentworth · 23/08/2013 21:43

Trazzle, do they give him.vampire bat stickers for injections? Ds used to get them for those and for bloods at gosh, snails when he had had to wait for ages, and a choice for other bits.

If they don't, you can get them. They cheer one up, we used to collect them.

Hope the weekend has good stuff as well.as the transfusion.

Don't feel.guilty about the anaemia. I'm still crap at spotting Ds's and keep getting told off.

Swipe left for the next trending thread