Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.
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Children's health
High dose chemo and beyond. Onwards and upwards hopefully!
999 replies
Trazzletoes · 25/02/2013 21:42
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Praying4Beatrice ·
26/02/2013 18:20
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NorthernLurker ·
26/02/2013 20:36
Just rest!
'ended up nothing dramatic' sounds like you've had a scary day that's worked out ok at the end of it. We don't have to have details. Just rest and save your energy for cudling your young chap as and when he permits 
God bless his poor little thumb and battered liver
Trazzletoes ·
26/02/2013 21:49
Norks thanks for the ideas but I'm giving up chocolate in case I do have gallstones in advance of diagnosis as will need a stupidly low fat diet to make sure I don't end up in a&e. it is not making life easier at the moment! I could survive on Cadbury's alone quite happily.
Basically this morning everything pointed towards Joe having this VOD which is the liver disease. He has put on a kilo because of fluid retention 
. At the same time it looked like his digestive system was finally starting to sort itself out so that was positive at least.
An ultrasound this afternoon (which was really painful on his tummy and led to us both having a good old cry together) showed no problems with his liver. Hooray! However, he still has all the symptoms so what's causing them... General fluid retention and all the fluid is going in to his bowel (tmi - sorry). He is on a diuretic to get this back in to where it should be so it can be flushed out normally. In the meantime very much hoping that the pressure of the fluid doesn't lead to a perforation.
Some of his liver enzyme levels are higher than normal so it could be that it's the start of VOD and hasn't actually done any damage as yet...
Everything hurts him. He can't sit up or roll over without pain. His thumb is still really sore and black, bless him, but he has been so good and hasn't sucked it since Friday. It's a little bit less swollen at least. His favourite cuddly toy sits right next to his outstretched hand (having a sore thumb means that he cannot move his entire arm at all) keeping it safe.
I think part of the difficulty is that we have been in for 3 weeks now. Staring at the same 4 walls for 2 1/2 weeks. It's boring and it's horrible. I want my little boy back. I want my family to wake up under the same roof. I want to wake up next to my husband. I know there are plenty of other people who don't get that luxury; I know there are servicemen and women and their families who have huge amounts of anxiety and are separated for months on end. I just miss my husband. We only get to see each other for about 5 minutes a day. An hour once or twice a week if we are lucky.
And realistically we are only halfway through and possibly not even that.
On the plus side, my crochet is coming on a right treat though 
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dikkertjedap ·
26/02/2013 21:59
Sorry you are all having such a hard time.
Very sorry to hear that Joe is in pain. It must be utterly exhausting for Joe and for you and your DH.
Are his neutrophils still increasing? I very much hope that his digestive system sorts itself out soon and that he doesn't have early signs of VOD.
Poor Joe. Is there anything we can do to cheer him up? We may be able to send electronic cards? Or is there anything else we could do to make it a bit more bearable for him/you?
Hope you will all have an undisturbed sleep tonight and that tomorrow will be a better day.
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