Joseph's last thread? Here's hoping...

[Trazzletoes]

My now 4 year old DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. It's a particularly aggressive cancer with an 80% relapse rate. Long-term survival statistics are not great.

Joe has had 8 cycles of chemotherapy, an operation to remove the main tumour, stem cell harvest, high dose chemotherapy and stem cell transplant as his bone marrow was destroyed, 3 weeks of radiotherapy and now 5 1/2 months of differentiation therapy and imunotherapy.

In April we learned he had relapsed and so had a 5% chance of ultimately surviving. Then, the relapse spontaneously un-relapsed but we don't know for certain what this means for his future. Whether its good or bad news.

He remains bright and cheery and gorgeous throughout.

Hope you are not in for long Trazzles, and that Christmas can restart soon. xxx

Will be praying you all get home soon Trazzles.

We're home - in the short term at least...

Oh thank heavens Trazzles fingers crossed you can stay put over Christmas!! Hope little J feeling a bit better x

Good. Long may you be there.

Trazzle sorry to hear J had to go in, but hopefully you can stay at home now. How is he feeling?

He's pretty much ok. 6 hours after paracetamol his temp was still only 37.1 so he's not too badly. He's a bit subdued, happy to just be sat watching tv all day I think!

We'll see though. If the blood from his line grows anything no doubt we will find out tomorrow and will have to go straight in then so fingers crossed it's just a virus.

Ah, fingers crossed for Joe.

I hope you'll have a happy Christmas wherever you end up spending it

So pleased you are back home, Merry Christmas Trazzles
Fx his temperature goes down.

Definitely fingers crossed. Merry Christmas to all the Trazzles & wishing you all the very best as always.

Gingers crossed Trazzle love.

I'll be lighting a candle for Joseph and yourselves at mass tomorrow when I make my annual trip to check what's occurring with the St Mary's massive, you know just in case and all.

I really, really hope that it's all under control.

Hopefully it's just some little viral thing then. How long does the line have to stay in for? Is it for the forseeable future or have they a removal date in mind?

All gingers crossed over here and we are sending a big Christmas splodge from Malvern. The whole FamilyNorks ask after Joe regularly, he is part of our life and always in our thoughts.

I hope you, Joe, DD and mr Trazzles are all at home today, regardless, I hope you are having a lovely Christmas day.

I hope you had a good day today.

Did you get xmas at home, all together? I so hope so and that you had THE best Christmas - just as you all deserve.

Been hoping against hope that you got to have Christmas at home, and that Joe got masses of FC presents :)

Hi, yes, thanks, we've been home since Christmas Eve. J has a stinking cold so his temperature is on the high side but not feverish at the moment. My DCs are both champions at slow present opening so haven't made it through their stashes yet.

Was so magical to all wake up together, just the 4 of us, on Christmas morning and we've basically just been skinning around and eating our body weight in pork since then.

It's been wonderful. We couldn't have asked for more.

Good news from Joe's consultant was that he expects his hearing loss to remain stable. It's a Grade 1 hearing loss (out of 4, I think) so as minimal as you can get and apparently only in 1 ear.

It seems somewhere along the line the chemo has caused a fracture near his coccyx which suddenly explains why he goes crazy at the end of long car journeys because "his bottom hurts".

His kidneys aren't happy but he's a long long way from needing dialysis and they may sort themselves out. Turns out the radiotherapy doesn't automatically cause 1 kidney to stop working as I had thought, it's just a possibility. So that's also good.

So basically, he's a bit broken but he's alive

Re: the line, Joe will have a urine test in 2 months time (they can diagnose neuroblastoma through certain elevated hormone levels in urine) and if it's normal then the line comes out then. Until then he will still have numerous blood tests and may need iv antibiotics etc etc etc so it's easier to keep it in as it's much easier for the nurses and for him. If he gets an infection in it in the meantime then it comes straight out and that's that but I'm hoping not as line infections are very scary.

Delighted you all had Christmas together, and love the slow present opening. We used to stagger it too, as Ds didn't want to open more than one or two per day.ime.

Poor him, with the coccyx. V v painful..

Will keep Splodging for no infections, good kidneys, etc. Go Joe!

Really happy to hear you had a family Christmas at home . Crossing my gingers that Joe's 'broken' bits heal up asap and that all his Christmas presents provide a welcome distraction.

Oh I'm so glad you had a lovely Christmas - was thinking about you. Poor Joe and his broken coccyx, though.

So pleased for your lovely family Christmas at home. Go Joe. Sorry to hear about all his broken bits, hope they heal soon.

Very glad you had a Xmas all together at home.

Poor wee mite - broken coccyx on top of everything else! So not fair.

Best wishes for continued progress in 2014. As hospital free a year as possible!