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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.

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Trazzletoes · 24/11/2013 22:42

Hey, just a quick update that Joe finished his treatment early Saturday morning and was discharged at tea time yesterday. He's doing ok - it takes him a few days to brighten up after the antibodies so he's not quite himself but he has enjoyed being in his own bed and watching a couple of films.

Tomorrow we start the last fortnight of tablets! That's all that now stands between him and relapse so hopefully it's already worked well.

He's very glad not to be having more injections in his legs though. He hates them and they've been in his treatment at the start (when I had to do them) and at the end. And they are painful.

Because he still has a line in his chest he is at risk of serious infections ( the children get extremely sick extremely fast - ambulances and the like) so we still go in if he gets a temperature. Another member of the household has developed a fever tonight so has strict instructions to stay well away!

Fortunately for us the Consultant who is on this weekend is fairly chilled out about things. That, and the fact that they are hugely short on beds, meant that we were allowed to give Joe paracetamol at home for 24 hours after discharge, which is great, provided we took him in if he was actually unwell. It just saved a lot of temperatures and a lot of phone calls to them and trips in.

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ajandjjmum · 24/11/2013 22:56

Fingers crossed that Joe continues to cope, and will soon be feeling brighter. So glad you're seeing that light at the end of the tunnel - even though keeping everything crossed still! Smile

You're an amazing Mum Trazzles.

ToffeeWhirl · 24/11/2013 23:08

Fantastic news, Trazzles. So glad you and Joe are home now.

You're an amazing Mum Trazzles.

^^
And this.

onedev · 24/11/2013 23:34

Well done guys - so close to the finish line now. Your strength & determination are an inspiration. Gingers crossed temp stays down & you get to stay at home. Splodges.

NorthernLurker · 24/11/2013 23:37

Hoping everything goes very smoothly for you now. Praying for Joe and for you all. Smile

Zhx3 · 24/11/2013 23:59

I am crossing all of my fingers and toes for you and Joe, Trazzle x

Turnipsandpumpkins · 25/11/2013 00:43

Great news that Joe is home, will be thinking of you over the next few days x

ancientbuchanan · 25/11/2013 09:07

V glad you are at home and hoping for no fever nor infection.

Splodging like mad.

pepperrabbit · 25/11/2013 12:43

Glad to hear you are home now Trazzles Smile

bobkate · 25/11/2013 17:42

What a relief you're home, really hoping these next two weeks go as quickly as they can. I bet it'll feel like a lifetime to you. Hope you don't mind me asking but at the end of the fortnight, what happens then? Will he have to have more tests to see if the treatment has been successful or is that something you just have to wait and see what happens?
Another wishing for no infections or fever for super Joe xx

DawnOfTheDee · 25/11/2013 19:37

So glad to hear you're home - fx it stays that way x

RubyrooUK · 25/11/2013 19:37

So glad you are home x

Almostfifty · 26/11/2013 22:26

What lovely news.

I am so pleased for you all.

Trazzletoes · 28/11/2013 20:24

So Joe has posted an actual proper real fever tonight so I'm back with him in hospital waiting for confirmation he has a chest infection.

It's my own fault for getting excited about the ward charity Christmas party at the weekend with Santa and presents... He missed last years' because he was in hospital with an infection. Oh wait...

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RubyrooUK · 28/11/2013 20:27

Oh bugger. Will send you all my most infection-fighting vibes and hope that fever cools down quickly....

kohl · 28/11/2013 20:34

Have everything crossed that it clears up asap. Have been and will continue to pray for you guys.X

onedev · 28/11/2013 21:17

Crap! Sending lots of good wishes.

StealthPolarBear · 28/11/2013 21:21

Me too. Hoping it clears soon x

greenhill · 28/11/2013 22:02

Hope it clears soon. You are in my thoughts x

Trazzletoes · 28/11/2013 23:11

He's had an x ray and doesn't have a chest infection but is dehydrated a bit so is staying in on fluid. They'll put him on antibiotics just in case and get the oncology drs to make a decision tomorrow.

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ancientbuchanan · 29/11/2013 07:37

Thinking of you for today.

saffronwblue · 29/11/2013 07:40

It is such a damn rollercoaster. Thinking of you.x

ajandjjmum · 29/11/2013 18:40

Hope Joe's feeling better today.

Hassled · 29/11/2013 18:48

Oh blimey - was thinking of you and just caught up on the last couple weeks (I lurk, crap at ever knowing what to say). Just hoping he gets to see Santa. How you've stayed so sane and strong and lovely is beyond me.

DreamingOfAFullNightsSleep · 29/11/2013 19:42

I don't think I've posted since the first thread, as I'm another who doesn't know what to say, and by the time I think of something passable others have posted, so i go back to lurking.

I'm just popping up to say you're both superstars. I daren't even imagine what you're going through/gone through but I'm crossing everything Joe sees Santa this year!

Splodges from the north west

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