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Original poster

High dose chemo and beyond. Onwards and upwards hopefully!

999 replies

Trazzletoes · 25/02/2013 21:42

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

OP posts:
Toastismyfriend · 28/02/2013 22:12

Different name, but long term splodger! Thinking of all you Trazzles xx (sorry you had a sad day Norks..hopefully tomorrow will be a little easier)

thewhistler · 28/02/2013 23:01

Hope today has been better.

Original poster
Trazzletoes · 28/02/2013 23:19

Oh Norks I am so so sorry that you've had a sad day. I hope that it's nothing too sad, IYSWIM.

P4B I'm popping to your thread in a minute. Don't you worry about us for a second, my dear. You focus every single one of your prayers on beautiful Beatrice. What a tough week you are having.

Big hugs to both of you.

Joe has been stable for a couple of days, although still extremely poorly. He managed to sit on my knee for half an hour today - the first time he has voluntarily got out of bed in about a fortnight.

His gut is no better, still no clue when it will start working again. The excess fluid is staying resolutely put. He is still in some pain. His Consultant is quietly concerned about the infection in his thumb.

He may or may not have a uti - it hurts him to wee. Bits of him ( usually his nose, currently his lips) are bleeding constantly.

Found out today that his Consultant is actually certain that he has the VOD (liver disease) albeit very mildly at the moment. It might get worse, very much hoping it doesn't. His neutrophils are coming up slowly - far too slowly for our liking.

And DD has a vomiting bug. So because of all this DH has had to back out of a friend's stag do. I'm so upset for him. He was waiting til the last minute as he desperately wanted to go but realistically Joe isn't doing as well as we had hoped by now, and with DD being sick. It's a big risk for him to go away as if I get the bug... There's no one to look after J. It's shit.

OP posts:
ninja · 28/02/2013 23:27

Oh Trazzle {{{ }}} it sounds really hard, it must be awful to see him going through this.

I hope the fact that he's stable and his neutrophils are going up means that it's another day ticked off until he improves.

Your poor DH too, I'm sure he would have benefitted from a change of scenery.

I continue to think of you and splodge and cross my gingers and hope that tomorrow is an easier day x

thornrose · 28/02/2013 23:31

I am thinking of you and your family xxx

dothraki · 28/02/2013 23:37

Trazzle x

NorthernLurker · 28/02/2013 23:54

Yes it's another day down. If he was able to sit on your knee for the first time in a while that is an improvement so lets just hold on to that. Sorry about dh's time away but he's clearly made the right choice.

Tomorrow is the 1st of March Trazzle. You never have to live February 2013 again. Keep going.

BarmeeMarmee · 01/03/2013 00:01

Trazzle so sorry to hear things aren't going as well as you had hoped. Thinking of you all and sending you lots of love and prayers. Gingers are still firmly crossed for you here.

barefootcook · 01/03/2013 01:12

Hi Tazzle

Good to hear that Joe was feeling up to having a cuddle on your knee- that must have been comforting for you both. I hope you have better weekend and Joe makes some good progress. Thinking of you all at this rotten time.

minmooch · 01/03/2013 06:32

Trazzle I am thinking of you all.

Strangely my son had an infection in his finger whilst on treatment. Our consultant called in the hand specialist in the hospital (sorry they will have an official name) who came in twice a day to keep an eye on the infection and came up with ideas as to who to treat if they needed to do something more than just antibiotics (I'm thinking an op to drain infection). Luckily it wasn't needed but perhaps you could ask your consultant if there is advice from the relevant 'hand' doctor in your hospital?

I am sorry that they suspect VOD liver disease. Every aspect of treatment is so distressing and each bit can have such devastating consequences. We think we've 'only' got the cancer to fight but the reality is very different.

I'm sorry DH had to cancel going on his friends stag do but it is more important that he stays here.

Wishing you all much strength. Xxxxx

thewhistler · 01/03/2013 07:29

Trazzle, it's shit, and I'm so sorry..

I hope Joe and cuddles happen today too.

Badvoc · 01/03/2013 07:52

Trazzles.
Still keeping you and joe in my thoughts.
So sorry he is still so poorly.
Another day down as you say.
Sending love xxxx

SPBInDisguise · 01/03/2013 08:27

nothing to add, but still thoughts and prayers xx

dikkertjedap · 01/03/2013 08:46

Oh Trazzle, I am so sorry that Joe and all the Trazzles are having such a tough time.

Brave Joe seems to be battling on so many fronts. I very much hope (all gingers crossed on all fronts) that his VOD remains mild and that the doctors can find out what is going on with his digestive system and thumb.

However, it is very good to hear that the neutrophils are on the up, albeit slowly, and that he came out of bed, although briefly, yesterday. Does he sleep a lot? Would he listen to stories?

I think Min's suggestion to have a hand specialist looking at his thumb is a very good idea.

Sending lots of love, gentle hugs, and lots of strength to all the Trazzles.

Thanks Brew Thanks

VenetiaLanyon · 01/03/2013 09:08

Lots of internet ((((((((hugs)))))))))) to all of you. Glad Joe was able to sit on your lap, and it's hard but it was the right call on the stag weekend.

ToffeeWhirl · 01/03/2013 09:37

I think theWhistler sums it up really.

((hugs))

superfluouscurves · 01/03/2013 11:02

Sending prayers and blobs of light/strength from over the channel Trazzles

Aw at Joe sitting on your knee for half an hour x

WhoKnowsWhereTheTimeGoes · 01/03/2013 11:30

So sorry to hear about the bug Trazzle and that Joe is still so poorly,

drjohnsonscat · 01/03/2013 11:52

Lord this is so hard for you all. I'm so sorry - makes me feel stupid for ever moaning about anything. Hoping this massive sledgehammer that's smashing chunks out of your lives right now is also smashing up that cancer. A heartfelt St Davids as a sign of Spring - that's hiding for now but is hopefully just around the corner.

upto11 · 01/03/2013 12:01

What everyone else has said. It is beyond shit and I'm so sorry.

I am thinking of you, and praying.

pinkhousesarebest · 01/03/2013 12:03

I woke up in the middle of the night thinking of you all. I have two thumbsuckers, so I know how important a little thumb is. Praying that today will bring some light.

Thumbwitch · 01/03/2013 12:32

Ahh Trazzles - that is shit indeed. I hope that they can fix his thumb up and stop the VOD getting any worse.
Prayers for neutrophils increasing and everything else improving - poor little love.

Perhaps you could get him one of these as encouragement?

xx

Jamillalliamilli · 01/03/2013 13:27

Trazzles sorry to have not been around, trying to fix my (nothing compared to yours) problems.
You can only ever do what you can, and you have and continue to in every way. You and your DH are the best parents Joe and your dd could hope for. Prayers for strength and success for Joe and all of you, and I hope there?s more sitting on knee today.

TeaMakesItAllPossible · 01/03/2013 14:29

I'm so sorry that it continues to one step forward and two steps back for all the Trazzles.

Continuing to think of you all and splodging away for Joe, DD and you and DH.

LillethTheCat · 01/03/2013 14:56

Just popping over to send you all my wishes Trazzles Sorry to hear how things have progressed. Hope things start to improve soon.