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

(848 Posts)
Trazzletoes Tue 17-Sep-13 20:47:13

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.

iwasyoungonce Tue 24-Dec-13 10:59:22

Oh my god this has made cry. So happy for you and your family, and your gorgeous little boy. I have been following your threads from the beginning, and hoping so much for you all. What wonderful news - I hope you all have a fantastic Christmas, and a very happy and healthy New Year.

Ragusa Tue 24-Dec-13 11:39:48

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

NorthernLebkuchen Tue 24-Dec-13 12:44:13

Will be praying you all get home soon Trazzles.

Trazzletoes Tue 24-Dec-13 12:51:10

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

Slimchance Tue 24-Dec-13 12:52:21

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

ancientbuchanan Tue 24-Dec-13 12:57:48

Good. Long may you be there.

ChippingInLovesChristmasLights Tue 24-Dec-13 14:06:16

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

Trazzletoes Tue 24-Dec-13 15:29:34

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.

PacificDingbat Tue 24-Dec-13 15:31:04

Ah, fingers crossed for Joe.

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

GoingGoingGoth Tue 24-Dec-13 15:40:02

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

onedev Tue 24-Dec-13 17:01:34

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

TeaMakesItAllPossible Tue 24-Dec-13 17:18:52

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.

NorthernLebkuchen Tue 24-Dec-13 17:25:45

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?

NorksAreMessy Tue 24-Dec-13 22:22:35

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.

WaitingForPeterWimsey Tue 24-Dec-13 23:02:36

Message withdrawn at poster's request.

kohl Wed 25-Dec-13 13:55:48

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

ancientbuchanan Wed 25-Dec-13 20:44:36

I hope you had a good day today.

fizzly Thu 26-Dec-13 23:14:31

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

Ragusa Thu 26-Dec-13 23:25:26

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

Trazzletoes Fri 27-Dec-13 07:47:07

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 fgrin

Trazzletoes Fri 27-Dec-13 07:51:08

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.

ancientbuchanan Fri 27-Dec-13 10:01:53

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!

ToffeeWhirl Fri 27-Dec-13 10:13:15

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

Hassled Fri 27-Dec-13 10:15:51

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

onedev Fri 27-Dec-13 12:25:08

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

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