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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:
WhoKnowsWhereTheTimeGoes · 21/11/2013 13:32

I haven't posted for a while, but am still thinking about you all.
xx

nemno · 21/11/2013 14:36

Sorry to hear your latest. Thinking of you x

NorksAreMessy · 21/11/2013 14:39

X

JetcatisBack · 21/11/2013 14:49

I don't think I have ever posted Trazzles (maybe once) but I always read for updates, and every day you are all in my thoughts - sending you all lots of strength and best wishes xx

pepperrabbit · 21/11/2013 18:24

Oh Trazzles, thinking of you and Joe. I hope they can sort it out.
Hugs. x

tholeon · 21/11/2013 20:25

I am so sorry, this disease is tortureing you. I hope and pray things improve xx

DawnOfTheDee · 21/11/2013 20:30

Thinking of you and Joe and have everything humanly possible crossed that things improve x

Almostfifty · 21/11/2013 20:43

Oh you poor, poor things. I hope it's settled down now.

I keep checking for updates but rarely post too, but I have been keeping an eye on things.

onedev · 21/11/2013 21:50

Oh that is shit, especially when you're so close to the end. Hang in there. Sending lots of love - splodges & gingers crossed. xx

PacificDogwood · 21/11/2013 21:56

I v much hope things have settled by now.
Wishing you and Joe a peaceful and restorative night x.

Sillybillybob · 21/11/2013 22:21

This reply has been deleted

Message withdrawn at poster's request.

howmuchworse · 22/11/2013 07:11

Another occasional poster but frequent lurker, am often thinking of you, J and your wider family. Good strong thoughts winging their way to you. One day/hour/minute at a time like before, you can do it.

girlsyearapart · 22/11/2013 07:11

How are things now trazzles?

pushmepullyou · 22/11/2013 07:19

Thinking of you Trazzles x

bobkate · 22/11/2013 19:26

Aw shit Trazzles, sounds awful. Gutted for poor old Joe, and you. Must be terrifying to be on your rollercoaster Sad. Huge love to you all, such a bloody ordeal you're living through xxx still sending Essex splodges all the time xx

ancientbuchanan · 22/11/2013 21:58

Splodges from south London. Hoping the weekend us good.

LongStripedScarfWearer · 22/11/2013 22:01

((((Trazzles))). Thinking of you x

Trazzletoes · 22/11/2013 22:18

Thanks all. His tummy is hanging on for the time being.

Tonight could be his last night in hospital! Except it won't be because he's had constant temperatures all week so we are bound to be back as soon as he is discharged but there you go...

He is just having his last round of antibodies flushed and then his last nasty injection. Hurrah! This part of the treatment is just so nasty I cannot wait for it to be done.

He has been so amazing this week. I am so proud of how he copes with all this.

Funnily enough his nurse tonight was his very first nurse in oncology and is also his favourite so I'm pleased about that.

I can't remember whether I mentioned that they found a nasty bug in his blood last week but suspect the blood sample was contaminated. They are retesting for it now. Usually if his scans come back clear he would keep his Hickman line in his chest for a few more months but if he has this bug it will hide in his line and make him extremely poorly so they will just take his line out to prevent that. We shall see.

He is a little superstar anyway, as always.

OP posts:
bobkate · 22/11/2013 22:24

A little superstar with a superstar mummy Smile Good on Joe's tummy xxx

PacificDogwood · 22/11/2013 22:27

Love and strength to you all x.
So glad he is (a bit) better - and that you sound still-standing as well.

I have a Joe too (3.7) which makes your Joe's story just that little bit closer for me iyswim.

Hope you do get home v soon.

ancientbuchanan · 22/11/2013 22:43

He is an absolute super star. And so are you.

Canthaveitall · 22/11/2013 23:27

Sounds like good news. I wish you both a restful night.

barefootcook · 22/11/2013 23:29

What a week Trazzle. Can't believe you are almost there! I really hope the last bit goes smoothly. Thinking of you guys, as always.

onedev · 22/11/2013 23:44

Superstar indeed. Go Joe!

ajandjjmum · 23/11/2013 15:01

Hope you all have a great weekend Trazzles.