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Original poster

Joseph's ongoing journey with Neuroblastoma

997 replies

Trazzletoes · 13/05/2013 22:24

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

OP posts:
Original poster
Trazzletoes · 28/08/2013 01:40

Ugh. We're awake. Joe has just been quite sick and his

pha0nose tube came up through his mouth. Very scary for both of us and extremely distressing for him. His bedding has had to be changed. Twice. He's now got a hacking cough, whether from the pain relief or the vomit burning his throat, I don't know. He's very upset so we're sitting together until he feels better.

OP posts:
BaconandEgg · 28/08/2013 01:44

You poor things. Is there anything you can do to distract him from the distress? My thoughts are with you.

barefootcook · 28/08/2013 04:40

Are you still awake? You poor things. Joe must be so frightened. I hope the wee guy has calmed down and you can rest together until morning. If you want to chat I'm awake- it's 3.40pm here!

Original poster
Trazzletoes · 28/08/2013 05:24

Awake again. He's having an ECG as his heart rate keeps shooting through the roof Sad v scary.

Not much sleep had here.

OP posts:
prissyenglisharriviste · 28/08/2013 05:48

Oh Trazzle, thinking of you here xxx
Fingers crossed for an uneventful morning and good results from the ECG. I used to have to leave the room when dd2's sats bottomed out, so kudos to you for just pulling the assistance cord. (Gentle hug) poor wee Joe is just working so hard x

tholeon · 28/08/2013 06:58

What a shit time you are having, so sorry. No you can't win, but you are doing the best that anyone could possibly do.

greenhill · 28/08/2013 08:07

Hoping for you to have a quiet morning and some sleep today x

mynameisnotmichaelcaine · 28/08/2013 08:16

Hope things settle and you get some sleep today. It's rubbish enough when these things happen, but happening in the middle of the night makes everything worse!

Original poster
Trazzletoes · 28/08/2013 08:35

After an hour of panic and stress and upset, the ECG showed that Joseph's heart rate was just fine and its the machine that wasn't working properly.

Thank goodness because it was zipping between 150 and 240 every few seconds.

Was horrible though even though am very relieved it was not him being unwell [yawn]

OP posts:
Almostfifty · 28/08/2013 08:54

Oh Trazzles, thank goodness for one small mercy. I hope he's not in so much pain now.

Original poster
Trazzletoes · 28/08/2013 09:03

His pain's fine. It stops almost as soon as the infusion stops. It's 8 hours long plus one hour to flush his line so 9 hours in total.

We're just both grumpy this morning we're so tired!

OP posts:
mynameisnotmichaelcaine · 28/08/2013 09:27

How annoying! But what a relief that it was the machinery rather than Joe! Hope you both manage to get some rest today.

minmooch · 28/08/2013 18:14

Oh Trazzles it's so hard to watch our children in pain knowing that we sanctioned their treatment. But you are doing it out of love for your child. My DS is now old enough to make decisions about his treatment. He can stop it anytime now if he feels it is too much. I am so frightened that he will stop it but also frightened that he continues with it for me. The whole thing is hideous but without this treatment our children have little chance.

Hugs and strength always.

ninja · 28/08/2013 21:23

Trazzles - I haven't posted for ages but always following and thinking of you. It sounds so hard and as ever you sound so amazing and Joe so lovely.

onedev · 28/08/2013 22:03

Hope you get some sleep tonight - so scary. Glad that Joe is now pain free. Still splodging.

SPBisResisting · 29/08/2013 08:19

Struggling to keep up with this as phone struggles with long threads. So sorry Joseph is going through this tough week, phew that it was the machine that was faulty!

MrsFrederickWentworth · 29/08/2013 08:55

Splodging and gingers crossed for a better day.

Original poster
Trazzletoes · 31/08/2013 07:29

Joe has done better as the week's gone on... His pain meds weren't really working at 40 on Tuesday but yesterday they were at 10(!) and he was comfy so v pleased with that.

Although he still has diarrhoea, the doctors have stopped his Imodium (my only complaint being they didn't actually tell us so Joe and I had a surprise night on Thursday with tummy trouble). Still they know now how unimpressed I was.

They're keeping him off it til the end of his treatment as they are worried his digestive system will shut down more again and Imodium slows it so not a good combination.

It was at this point last time that we realised there was a problem so really hoping he can make it through the last lot. We can tell its slowing but really hope it can limp across the line! One more day Joe! Come on!

OP posts:
ShiftyFades · 31/08/2013 07:33

Gingers crosses for Joe, come on Joe!

(((Hug))) for you Trazzle x

Hassled · 31/08/2013 07:34

Yes - come on Joe!

Still thinking of you and your lovely boy.

onedev · 31/08/2013 08:19

Definitely - come on Joe! Such a little star.

greenhill · 31/08/2013 09:16

Fingers crossed for Joe, one more day, you can do it!

CoteDAzur · 31/08/2013 09:37

Wonderful to hear that Joe has less pain, Trazzle Smile

Just one more day, Joe! You can do it!

SPBisResisting · 31/08/2013 12:15

x

ToffeeWhirl · 31/08/2013 16:37

That's great news!

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