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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:
bobkate · 19/11/2013 11:07

So pleased a bed was found for him. Here's hoping it's as smooth a week as it possibly can be xx

Canthaveitall · 19/11/2013 22:07

Long time lurker. I just wanted you to know I am thinking of you and Joe.

Trazzletoes · 20/11/2013 22:07

Joe's fluid retention hasn't been so bad this week... Well, it was but he was dehydrated because all the water was where it shouldn't be.

So he's had a catheter fitted today ( poor little mite) and got rid of 2 litres of fluid. 2 LITRES!!!

OP posts:
TeaMakesItAllPossible · 20/11/2013 22:16

OMG. That's a lot of liquid. Bless him.

You're so close to the finish now. I'd love to sweep you up and carry you all over the line.

Come on Super Joe and your amazing family.

PacificDogwood · 20/11/2013 22:20

Trazzle and Joe - just to let you know you are in my thoughts often x.

ancientbuchanan · 20/11/2013 23:21

2 litres.. he must have been so uncomfy. I hope he is happier now.

Splodging for the home straight.

kohl · 20/11/2013 23:35

You and Joe are in my thoughts and prayers often. You are incredible, and every ginger crossed for a sprint over the line.X

Trazzletoes · 21/11/2013 04:49

He's just been sick and it was really really green. Which suggests his gut has stopped working. Or is stopping working.

I could cry. I can't deal with this again. Not now we are so close to the end.

I just can't.

OP posts:
madwomanintheatt1c · 21/11/2013 04:55

Big deep breath and refuse to think about it, trazzles.

Only a couple of hours until morning and everything will look better.

Hang in there xxxxxxxx

Trazzletoes · 21/11/2013 06:13

I can't refuse to think about it. He keeps vomiting dark green. It's unavoidable to think about it.

I am so fucking fucked off with all this now.

OP posts:
Turnipsandpumpkins · 21/11/2013 06:22

Oh Trazzles.
That is unspeakably shit.
Thinking of you both, wishing we could help. (I'm crap at writing supportive words - sorry)

tunnocksteacake · 21/11/2013 06:22

This reply has been deleted

Message withdrawn at poster's request.

girlsyearapart · 21/11/2013 06:34

Thinking of you & hoping it means something non dramatic..
Good luck keep those gingers crossed

mynameisnotmichaelcaine · 21/11/2013 06:39

How rubbish. Thinking of you.

sybilfaulty · 21/11/2013 06:42

Thinking of you Trazzles. Hope today brings reassurance. Hugs

daisydotandgertie · 21/11/2013 06:56

I've just caught up with your thread and have had you in the back of my mind for months.

I have been just where you are with my DH and I'm crying with the memories of the way you feel - worried and awake in a hospital in the middle of the night over and over again; the smells, the noises. It was the same. Never ending. And awful.

You are doing more than is humanly possible for your lovely Joe - as much as you can and more besides - and even though each new problem, each new admission feels overwhelming, you are doing the most amazing job.

Keep going. You are incredible.

TeaMakesItAllPossible · 21/11/2013 07:21
RubyrooUK · 21/11/2013 07:28

Big hug. Don't often post but thinking of you. Hope things improve today. X

TheCountessOlenska · 21/11/2013 07:38

never know what to say Trazzles so don't post often but think of you and Joe every day.
Can i just double check - do i definitely need to wait till the baby is 12 months before i can give blood?

saffronwblue · 21/11/2013 07:58

Splodging and thinking of you.

saffronwblue · 21/11/2013 08:07

Splodging and thinking of you.

upto11 · 21/11/2013 08:37

I haven't posted for a while, but I think of you and Joe often. All gingers crossed for a better day today. Splodging from Devon.

ToffeeWhirl · 21/11/2013 11:29

So sorry, Trazzles. Just hang on there. This will pass, just as all the other unspeakable shit has passed. Big ((hugs)) to you for always being there for Joe when he needs you.

Thumbwitch · 21/11/2013 11:47

Hi Trazzles, also just caught up on what's been going on.

So sorry to hear that Joe is having more digestive problems again :(

Hang in there - I realise you have pretty much no choice but to do so, but remember that you have a huge amount of support from around the world.

Splodge of light and crossed gingers from Australia for you and Joe - hope it's resolved very quickly and he gets through this last round successfully xx

greenhill · 21/11/2013 12:11

Hang on in there. I hope things pick up for you and Joe very, very soon.