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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 Thu 07-Mar-13 16:45:06

Phew.
So glad it's not what you feared.
Do hope the temp comes down x

It may be that the radiologist compared last nights x-ray with an earlier one so was able to draw more accurate conclusions? Doesn't mean last nights doctor was wrong to say something. It's really important that parents are fully informed. Of course any information has to be given alongside information regarding how reliable, certain it is etc. I would be exactly the same as you Trazzles, plan for the worst, hope for the best type thing? Whereas dh would be more for dealing with what's right in front of him and only that.

Praying for more good news smile

dikkertjedap Thu 07-Mar-13 17:47:31

Glad that Joe's consultants are in the loop with all things going on, even if during the evening and night. At least you don't have to worry about quality of care.

I hope that Joe has had a better day today and is no longer in pain and no longer sick.

Joe is such a brave boy, you must be all so proud of him, we, here at Mumsnet, are all so proud of him!!!!! So much gets thrown at him and he just tackles it and deals with it, what a super star!

Very much hope that the antibiotics are sorting out his infection and enabling his neutrophils to pick up.

I hope that tonight will be better for all the Trazzles.

Thinking of you all,

x

dikkertjedap Thu 07-Mar-13 17:50:10

Sorry, I didn't mean to be nasty about quality of care given by junior doctors BTW, it is just, when the situation is very serious/life threatening I have had some very bad experience with inexperienced doctors not getting seniors involved. sad

thewhistler Thu 07-Mar-13 19:45:26

Or even when it is not life threatening, happened to us last week.

I agree, I doom plan, DH treats every word literally.

So glad it wasn't the lung infection and hope they have got temp under control.

superfluouscurves Fri 08-Mar-13 08:17:05

What a gruelling roller-coaster Trazzles. I really admire the way you, Joe and your dh are handling it all. Just dropping in by to say still sending prayers, positive thoughts, strength your way xxxx

Fingers crossed for a better day today xx

Toastismyfriend Fri 08-Mar-13 09:43:51

And so another night passes. Hope today is a good one. Just wanted to say what great parents you guys are..however he is feeling, little Joe always knows one of you is there xx

onedev Fri 08-Mar-13 17:50:49

Hoping today is better.

narmada Fri 08-Mar-13 21:09:50

Me too.

dikkertjedap Fri 08-Mar-13 22:04:31

Hope today has been okay for Joe.

Thinking of all the Trazzles,

x

PseudoBadger Fri 08-Mar-13 22:07:51

I'm still thinking of Joe and you all xx

FoodieToo Fri 08-Mar-13 22:29:27

Me too. Thinking of you all during the day x. Really hope things improve.

Trazzletoes Fri 08-Mar-13 22:40:17

Another steady day. As the Drs are saying "he's a very poorly boy but he's stable, and we can work with that."

Neutrophils up again although always the possibility that they will go down tomorrow... Joe is struggling to talk because of his pain meds and his mouth bleeding periodically and being very dry - something we can't do much about for various complicated reasons.

He's very dopey from the drugs and still in a reasonable amount of pain as his tummy is soooooooooo swollen. It's upsetting to look at (its bruised from everything pushing on the inside) so I can't imagine how much it must be hurting him. He has put on yet another kilo - currently 3kg overweight. The Drs are being great though.

dikkertjedap Fri 08-Mar-13 22:50:26

Good news that the neutrophils are up smile.

Very sorry to hear that Joe is still in pain. sad sad sad
Also very sorry for you and your DH to see him suffer so much.

Hoping for an improvement tomorrow and that the doctors find a way of reducing the fluid retention (if that is what causes his tummy to be so swollen).

Hope tonight will be okay for all the Trazzles and especially Joe.

x

Poor boy. Poor all of you xx. Great that his neutrophils are bouncing back quickly up again though. They're bound to be up and down at he moment, but hopefully the fact that they are picking up in between dips should stand him in good stead for when he starts to properly turn the corner.

Trazzletoes Fri 08-Mar-13 22:52:35

Yup it's an inflamed liver but mostly fluid retention. They've knocked his fluid intake right back and he's on a couple of diuretics but the only thing that is really going to work is his liver sorting itself out again. Either that or he pops!

dinkydoos Fri 08-Mar-13 22:56:14

Sending you lots of positive vibes trazzle family. Stable is good, I know it must be so awful seeing him like this but keep what the doctors say in mind.
And come on ye neutrophils!

FoodieToo Fri 08-Mar-13 23:00:47

Trazzletoes I was in hospital for two weeks recently with my son with a very complicated pneumonia.

He was very ill and I was panicked. And a theatre nurse,who was just lovely,said to me that very often kids have to get worse before they get better.
This was after an op and they could not get his oxygen levels up.

They were wise words. Often treatment can be very severe. But hopefully the outcome will be good. Love to you and Joe. It's so hard to relax in hospital. Sleeping is so hard...

Hope you have a relatively peaceful night.

Trazzletoes Fri 08-Mar-13 23:12:54

Thanks. When I get to bed I should hopefully sleep well as I'm at home!

I'm just waiting for my sister to arrive at the moment - she was due to fly in to our very local airport an hour ago but her flight was cancelled and she was sent about 90 minutes away instead + a coach journey back to the airport. At absolute best she will arrive at midnight <sigh> <sleepyTrazzle>!

dinkydoos Fri 08-Mar-13 23:14:31

Oh dear, re sister! Can you just snooze on settee till she comes, text her to say knock loudly!

Trazzletoes Fri 08-Mar-13 23:19:54

I could but I'm off to pick her up from the airport. It's only round the corner and I don't want her to have to fight for a taxi and then have issues because the drivers get really cross at having such a small fare! It's annoying but it will be lovely to see her.

dinkydoos Fri 08-Mar-13 23:27:32

Aah, the snooze will have to wait then. Hope you can find a few interesting threads to while away the next half hour or so! Hope you all have a good nights sleep.

dikkertjedap Sat 09-Mar-13 00:07:27

All gingers crossed (and everything else for that matter) for Joe's liver starting to improve asap.

Hope your sister is with you soon and hope you all have a good night.

x

bobkate Sat 09-Mar-13 00:09:07

Ah Trazzle, yet more up,downs,up,downs. Bless Joe, he must be so peeed off at feeling rubbish. So young for him to make sense of what's happening to his little body. Still splodging and crossing everything x thinking of all the Trazzles x

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