Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

High dose chemo and beyond. Onwards and upwards hopefully!

(1000 Posts)
Trazzletoes Mon 25-Feb-13 21:42:02

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

Badvoc Tue 26-Feb-13 14:07:55

Thinking of you all x

C

X sorry for typo

Splodging from Scotland again! Sending thumb healing vibes too. Much love to you all.

More splodges from west London.

Trazzletoes Tue 26-Feb-13 19:20:29

Ugh! I just don't have the energy to post about today. Ill try and put something up later. Ended up being nothing dramatic but it's been a long day!

thewhistler Tue 26-Feb-13 19:27:39

Don't, if you don't have the energy, have a drink, a bath and go to bed.

Tell us when you want to, not because you feel you must.

Sweet dreams.

Kalypso Tue 26-Feb-13 19:33:09

Hello there; I am so sorry I haven't splodged for a while, but another splodge from Berkshire. I have been thinking about Joe and you all a lot, every day (although, as somebody else said, sometimes I want to post but then can't find the words). I'm relieved to see you update that nothing dramatic has happened, although it sounds like you have had an utterly exhausting day. I hope Joe's poor little thumb shows some signs of improvement soon. It must be so hard for him to be deprived of that comfort (and soooo tiring for you dealing with the fallout). Lots of love to you all, and really hoping you all manage to get some rest.

Asheth Tue 26-Feb-13 19:34:09

Splodging from Devon! (I was on the other threads under another name) Sending Joe lots of healing vibes and have everything crossed that you all have a good, restful night tonight. x

ShiftyFades Tue 26-Feb-13 19:43:15

I hope the anti fungals are working and his temp has come down along with a rise in bp.

Try and relax this evening if you are at home, hope you're ok.
Always thinking and praying for you all xxx

LeonardoAcropolis Tue 26-Feb-13 20:09:08

A splodge from Essex! Thinking of you all Xxxxxx

dikkertjedap Tue 26-Feb-13 20:12:45

Hope Joe is okay and that you all manage to catch up on sleep tonight.

x

trazzles
If you do nothing else in your life but sit on the sofa and eat chocolate
If you do nothing kind for anyone ever again
If you never give a penny to charity or donate a single thing to a charity shop
If you never give anyone your last Rolo (unlikely, is Nestlé)
If you never buy the big issue again
If you only ever give Body Shop gift baskets for Christmas

IT WON'T MATTER

The love, tears, dedication, boredom, fight and sheer hard graft you have given to your lovely boy will count a thousandfold.

As always, I send you my kindest thoughts and deepest admiration.
Sleep well and may tomorrow bring good news and a little step in the right direction.

Badvoc Tue 26-Feb-13 20:35:04

Thinking of joe.
Wishing for a peaceful night for you all x

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 smile

God bless his poor little thumb and battered liver smile

onedev Tue 26-Feb-13 20:40:49

If nothing else, you're another day further forward. Hope you're all able to get a good nights rest & tomorrow is a better day. Thinking of you all & wishing you the very best.

SarahJinx Tue 26-Feb-13 21:05:19

Splodging in from Norfolk with wishes for the gorgeous Joe and his utterly wonderful mum.

Trazzletoes Tue 26-Feb-13 21:49:08

Norks thanks for the ideas but I'm giving up chocolate <sobs> 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 shock. 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 grin

Trazzletoes Tue 26-Feb-13 21:52:16

Oh and by the end of the day the gunk coming out of his stomach had increased again so it's like one step forward two steps back at the moment. He is still several days off even having a drink at the moment. Which is hard because obviously I can't drink in front of him but he also won't let me leave the room (ombviously I would take the opportunity to get a drink!) so I get more and more dehydrated. He wouldn't even let me get a shower today [grim]

ajandjjmum Tue 26-Feb-13 21:53:31

Trazzle
So much love and admiration coming to you and your family.
Hope you'll soon be looking back at this time (admittedly with horror), and thinking how all the grief was worthwhile.

Badvoc Tue 26-Feb-13 21:55:31

Oh trazzles sad
He is so brave.
And so are you.
You are almost halfway through this awful treatment.
Hold onto that.
You are both constantly on my mind and in my thoughts x

PseudoBadger Tue 26-Feb-13 21:55:33

As ever, I'm thinking of you and Joe xx

Almostfifty Tue 26-Feb-13 21:58:24

You poor, poor things. I hope you both get some sleep and that things improve tomorrow.

dikkertjedap Tue 26-Feb-13 21:59:40

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.

flowers

dinkydoos Tue 26-Feb-13 22:00:31

Trazzle, don't know what to say ever, but so many people are thinking of you and joe every day.
You are allowed to feel sad, stressed and bored, everyone would be in your position, but your love shines out for your family.
Crochet you say? Are all your relatives getting toilet roll crochet doll covers for Christmas 2013???

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