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

847 replies

Trazzletoes · 17/09/2013 20:47

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.

OP posts:
ClockWatchingLady · 29/11/2013 20:45

Thinking of you and Joseph every day, Trazzles.

XX

bobkate · 29/11/2013 21:58

Yep - same as clockwatching, thinking of you all x

onedev · 30/11/2013 09:49

Another thinking of you. Hope today is a good day.

ChippingInLovesAutumn · 30/11/2013 10:23

What a year :( Still, he doesn't have a chest infection, he has completed all of his treatment and hopefully you can go home this weekend & stay there!! Much love xxx

LatinForTelly · 30/11/2013 22:15

Is it too much to hope that Joe got to the party, Trazzle? Thinking of you all, as ever.

Sillybillybob · 30/11/2013 23:42

This reply has been deleted

Message withdrawn at poster's request.

MrsCakesPremonition · 30/11/2013 23:45

Fingers crossed that Joe gets home tomorrow.

(BTW do you need to check your name?)

Trazzletoes · 30/11/2013 23:48

The party is tomorrow afternoon [grimace].

Today I've been on my annual Christmas shopping extravaganza with a friend so DH has been in the hospital. Today's Dr said that "because he had been so sick on admission" he needed 5 days I/v antibiotics.

The fact that he was "so ill" was news to us as, apart from having a temperature he was pretty chipper! And all his levels had been good etc. DH questioned it and fortunately Joe's nurse today was a Charge Nurse and had been there when we were admitted and could tell the Dr that he had been broadly fine. So the Dr has spoken to the Consultant, Joe's paracetamol has been stopped and if his temperature stays down he could be discharged tomorrow in time for the party. I am not holding my breath but quietly hopeful.

He's had a good day though. We took him in to the play room for a bit and he's been quite bright. He'll be discharged on oral antibiotics but he will be home. Hopefully.

OP posts:
onedev · 01/12/2013 09:55

Gingers crossed he gets to go to the party! Thinking of you all as always. 1st December already - it's been a long hard road for you, but you are all doing so well. Keep plodding on, you're getting there & your strength is an inspiration. Thanks

PacificDogwood · 01/12/2013 10:01

Oh, fingers crossed here too, Trazzletoes, I so hope he makes it to the party.
Did he have a chance to open the first door on an advent calendar today?

ajandjjmum · 01/12/2013 15:58

Hope you're enjoying the party as I type! Smile

StealthPolarBear · 01/12/2013 20:54

How did today go?

ancientbuchanan · 01/12/2013 21:14

Hoping so much today was good and he got to see Santa.

bobkate · 01/12/2013 22:48

Really hoping he got to go to the party today x

Trazzletoes · 02/12/2013 06:55

Hi! Sorry to be so slow updating - busy day!

The lovely lovely Doctor on the ward bumped Joe to the top of the ward round so he could be discharged on time if at all possible. Party wAs at 1pm, and we arrived a few minutes after.

Massively grateful to all the staff on the ward who did everything in their power to get him there.

We all had a wonderful time - Joe tired quite quickly so we left well before the end, but he loved meeting Santa so much and they got great presents - he is now absolutely convinced of Santa's magic because the presents he and DD were given were so perfectly chosen.

I said to DM that it was sad that so many children are having treatment. She pointed out to me that every child in that room was happy Xmas Smile

And of course too many faces were missing.

The Doctors think Joe had a virus so have sent him home without antibiotics - hoping they are right as we have exciting plans for next week and I really hope he doesn't get poorly again!!!

OP posts:
Trazzletoes · 02/12/2013 06:56

Oh yes, and if you are on Facebook and like pictures of children having fun, the Candlelighters page has a link to the photos from the party.

OP posts:
saffronwblue · 02/12/2013 07:29

yay for Joe and Father Christmas! So, so happy to read this. x

PacificDogwood · 02/12/2013 08:21

Smile How lovely!

pepperrabbit · 02/12/2013 12:18

I'm so pleased you got to the party Smile
Fingers crossed for a healthier week.

ClockWatchingLady · 02/12/2013 12:42

Hurray for Joe, you, the Christmas party and so many happy children Xmas Smile

Ragusa · 02/12/2013 14:25

Woo Hoo!

bobkate · 02/12/2013 14:41

So pleased he got to the party....and wow, no wonder he didn't want to miss it. Looked like a wonderful time if I've found the right photos. And there were lots and lots of smiling children in them. What a wonderful organisation. Here's hoping Joe gets to take part in those exciting plans of yours! x

ancientbuchanan · 02/12/2013 19:39

Eyes a little damp here. So glad he got there. Hurrah for Santa and Joe.

barefootcook · 02/12/2013 20:10

Wonderful news Trazzle. Hope Joe keeps enjoying the festivities.

onedev · 02/12/2013 21:42

So pleased he got to go. Smile

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