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Children's health

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Original poster

High dose chemo and beyond. Onwards and upwards hopefully!

999 replies

Trazzletoes · 25/02/2013 21:42

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

OP posts:
TeaMakesItAllPossible · 12/03/2013 09:18

Just letting you know Joe and the Trazzles are still in my thoughts.

BarmeeMarmee · 12/03/2013 10:30

Thinking of you all and hoping that all is going well.

seeker · 12/03/2013 12:42

Hoping that things are continuing to go well.

dikkertjedap · 12/03/2013 13:07

Hoping it is still onwards and upwards for Joe.

Thinking of you all.

x

Toastismyfriend · 12/03/2013 13:29

Checking in and keeping my fingers crossed. x

narmada · 12/03/2013 17:29

Me too. Hope all going ok.

LillethTheCat · 12/03/2013 17:54

Just checking in. Hope all is well (or at least as well as it can be)

Kalypso · 12/03/2013 18:26

Also have my fingers crossed for Joe's continuing improvement. Thinking of you xx

kohl · 12/03/2013 18:30

Thinking of all of you.

Labootin · 12/03/2013 18:30

Fab x

bobkate · 12/03/2013 20:38

Thinking of you all and hope all is ok x

Original poster
Trazzletoes · 12/03/2013 21:41

Hi, apologies for being away. I avoided MN as much as possible on Sunday and then Joseph has moved wards (just for cleaning) and the Internet signal thing isn't great there.

He has been pretty steady really. His neutrophils have got, and remained, high enough for him no longer to need medicine to boost their production. Hooray!

This also means that his thumb infection is looking better although he has had an x ray to rule out any problems in the bone.

He is still having his sips of water and is having a slow feed through his NG tube. It had increased to 6ml an hour today but he wasn't absorbing it so they've knocked it back to 2ml which is how it started on Saturday. A bit disappointing but not the end of the world.

And last night heralded his first dirty nappy in 3 weeks!!!

His liver is still problematic. I think today he may have had more fluid out than in, which is what we want, but I'm not certain. And he is still a very long way from sorted out but he seems to be on the right track now.

Interestingly, he has skin peeling off various parts of his body but its problematic on the roof of his mouth because its bleeding (due to low platelets) and then scabbing over so his mouth is a total mess. Yesterday a nice chunk came out. I nearly threw up! Not my finest moment!

OP posts:
SPBInDisguise · 12/03/2013 21:53

Yay! To poo

Toastismyfriend · 12/03/2013 21:55

I have had many a moment with my kids when i felt queasy due to some injury/illness.(the barbie earring hooked up the nose, the throwing up of a small snail..don't ask!,)..and i'm supposed to be in a job where you don't get squeamish. Lots more good news now..who would have thought a dirty nappy could be so exciting. Onwards and upwards Trazzles, thinking of you every day x

NorthernLurker · 12/03/2013 21:56

Just checking in and thinking of you

ajandjjmum · 12/03/2013 22:00

Bless him - and you! Glad things are looking up. If it's any consolation DS has had mountains of oral surgery, and it does tend to heal more quickly than other areas. Fingers crossed this is the case for Joe, although I realise his little body has lots more to contend with.

Hope things carry on improving.

narmada · 12/03/2013 22:29

Well, brilliant news about poo. That must have been fab to see Grin.

dikkertjedap · 12/03/2013 22:38

So glad to see your update.

It may still be a long way to go, but he is going onwards and upwards, that is the key. He is doing so well and has come from so far.

Hope he is feeling a little better in himself as well, as it may be hard with his mouth??? Has he resigned himself to no thumb sucking at all or given the other one a go or is the whole sucking impossible given the state of his mouth?

Also very much hope that he has excellent pain control with minimum side effects.

All gingers crossed for his liver starting to recover.

x

Original poster
Trazzletoes · 12/03/2013 22:49

narmada it really wasn't! Happy that it happened, not so happy that it happened on my watch...

He is no longer a thumb sucker. His other thumb isn't right, his normal thumb still hurts too much ( and is too gross) and his mouth is too gunky. He states that he is never going to suck his thumb again Sad

OP posts:
dikkertjedap · 12/03/2013 22:56

Joe is a brave and clever boy - for most children it is hard to stop sucking their thumb and he has done it in the hardest of the hardest way. But he managed.

I hope the staff reward him with lots of stickers or reward certificates (if he likes those type of things), my dd has got a scrap book full of hospital stickers and bravery awards and even showed it once at school - including the not very brilliant menu on the children's ward ... She does not seem to have any bad memories about it (that is just me and my DH).

ninja · 12/03/2013 23:06

All sounding so positive, great that he can start to heal himself.

Gingers crossed that the improvements continue x

onedev · 13/03/2013 00:38

Poor wee love - he really is doing so well though! Well done to Joe & all the Trazzles!

Another day done - onwards & upwards.

barefootcook · 13/03/2013 06:21

Things sound a lot better Trazzle. Good for you and little Joe. Hope it continues.

blizy · 13/03/2013 07:10

Great news trazzles! Joe is such a little trooper, it must have been so hard for him to stop thumb sucking. I hope this is him getting better. X

minmooch · 13/03/2013 07:21

Oh yay for a poo! I remember being obsessed by DS and when/if he had pooed - still keep an eye on it even now! It's such a good sign. I remember punching the air in the hallway when I handed over DS first poo after surgery (would have bedn about 3 weeks too).

Glad Joe's neutrophils are staying high enough - such a relief to see that.

Much love to you all.