Mumsnet has not checked the qualifications, experience, or professional qualifications of anyone posting on Mumsnet Talk and cannot be held responsible for any advice given on the site. If you have any serious medical concerns about your child, we would urge you to consult your GP.

High dose chemo and beyond. Onwards and upwards hopefully!

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

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

dikkertjedap Mon 25-Feb-13 21:52:16

Nice that Joe managed a smile, but sorry to hear that he did not feel like playing.

I hope that his digestive system starts working soon and that his thumb gets sorted.

Very much hope that he does not have VOD, all gingers crossed in every possible way.

Thinking of you all and wishing you lots of strength and positive energy,
Hoping that you all have a restful night,
x

IwishIwasmoreorganised Mon 25-Feb-13 21:54:23

Fingers crossed that his bowel starts working and his thumb infection clears up.

Hopefully you both get a good bit of rest and some more smiles tomorrow.

Xx

ShiftyFades Mon 25-Feb-13 21:56:28

Sploding in on the new thread. Gingers firmly crossed that the VOD doesn't transpire, that his digestive system starts working and that the over-sucked thumb starts healing.

Great news about the count though, hope those little fighters continue to multiply.

Always my my thoughts. Hope you get plenty of rest tonight xxx

Signing in with light, love, gingers and splodges from Malvern.
As always, Joe is in my thoughts last thing at night.

X

narmada Mon 25-Feb-13 22:19:40

Little boy, come on, you can do it. We are all willing you on.

Keep going Trazzle.

ninja Mon 25-Feb-13 22:20:16

Thinking of you and hoping with all the rest x x

blizy Mon 25-Feb-13 22:27:01

Trazzle, I hope it's not the start of the VOD liver disease. I have my gingers crossed for Joe. X

Lovely to hear he is smiling at the telly.

Gingers crossed that VOD is avoided. Come on Joe. Yer big beauty!

Splodging and sending love from the south-west

tangledupinpoo Mon 25-Feb-13 23:04:53

Everything crossed here too that Joe doesn't develop VOD, and that he starts getting stronger and feeling more like playing very soon. Hope you both have a good, restful night. x

Trazzletoes Bosnia-Herzegovina Mon 25-Feb-13 23:09:04

DH just texted to say he has just spiked a temperature so they are starting him on anti-fungals for his thumb (it has gone black so it's fairly dramatic). The temperature explains why he has been off-colour again today though.

Blood pressure is low again - far from ideal. Another long night, I suspect.

ninja Mon 25-Feb-13 23:14:38

Oh Trazzle, I'm sorry there's more to worry about. Hope that you manage to get some rest and that there's better news tomorrow {{{ }}}

dikkertjedap Mon 25-Feb-13 23:19:52

Poor Joe - so sorry to hear what a raw deal he is getting.

Hope that any pain is well controlled and that his temperature can be brought under control quickly.

Gingers crossed for the anti-fungals and his poor little thumb. sad

Sorry to hear that it looks like another stressful night for you and your DH, very much hope that Joe at least will manage to sleep.

Thinking of all the Trazzles,

x

<squeezes Trazzle really hard>

onedev Mon 25-Feb-13 23:52:27

Splodging from Solihull & gingers firmly crossed that the night is better than suspected.

ToffeeWhirl Tue 26-Feb-13 00:39:26

So sorry to hear your latest news. I hope things start to improve tomorrow.

((hugs))

PlasticFlamingo Tue 26-Feb-13 02:06:29

I'm new to this area of Mumsnet, I am so sorry you are facing such a dreadful illness. sad
Sending hugs and strength to you all.

Cookingupastorm Tue 26-Feb-13 06:13:36

I hope the night went well. xxx

mynameisnotmichaelcaine Tue 26-Feb-13 06:15:54

Rubbish sad Sending lots of love.

bobkate Tue 26-Feb-13 08:15:36

oh bless him. I hope the night wasn't too bad for him and the rest of the trazzles xx Keeping everything permanently crossed xxx

Thumbwitch Tue 26-Feb-13 09:57:19

Poor Joe! hope he settles a bit soon, even without the comfort of his thumb (Sounds drastic! shock)
hugs for you all - light splodges and crossed gingers from Aus. xx

Awww, poor Joe and the thumb sad Hope the antifungals kick in soon and the temp drops.
Still in my thoughts very very frequently.

Sending love and good vibes xx

orangina Tue 26-Feb-13 13:09:18

Splodges from West London again from this lurker, and very best wishes and good vibes to you all..... keeping fingers and gingers crossed for you all...

thewhistler Tue 26-Feb-13 13:19:33

Splodges from a hospital in central London.

foofooyeah Tue 26-Feb-13 13:24:12

spodges from heathrow airport - sneding positive healing vibes to you all

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 Bosnia-Herzegovina 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 Bosnia-Herzegovina 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 Bosnia-Herzegovina 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???

Trazzletoes Bosnia-Herzegovina Tue 26-Feb-13 22:02:13

But aj what if it doesn't work? What if there is STILL cancer in his leg that has survived this?

Or what if he relapses in a couple of months and has gone through all of this for nothing?

Sorry, tired-and-emotional-Traz is no good for anything.

Just keep going Trazzles. It's boring and miserable and scary but it's going to be just a memory one day.

dikkertjedap Tue 26-Feb-13 22:05:06

Suffice to say, it is very important for your own health that you can drink. Is there any way you can hide a bottle somewhere and drink it with your back towards him? Alternatively, you may have to explain to him that you have to drink as otherwise you will get terrible headache because you don't have a tube with fluids (I know not nice, but nobody will gain if you become unwell).

Sorry about his tummy -really hope the doctors can find out asap what is going on.

x posted.

Now look - yes it might not work, yes he might relapse but you KNOW you and he have thrown everything you could in to this. There's nothing more to be done and whatever happens don't regret that you've been through this time. This time is you and Joe fighting as hard as you can and that's worth doing. Faint heart never won fair lady smile

You can spend hours on ifs and maybe and should have but really all you've got to do is play the hand you're dealt.

Trazzletoes Bosnia-Herzegovina Tue 26-Feb-13 22:10:52

I know. I'm sorry. Just having one of those days. Bed, here I come.

Don't be apologising either grin Hope you get a decent night

MelodyBaker Tue 26-Feb-13 22:17:53

trazzle sorry that today's been hard. And sorry joe is in so much pain. Soon,joe will have beaten this and your family will wake under 1 roof together.
Fingers firmly crossed

dikkertjedap Tue 26-Feb-13 22:19:42

Try to take one step at the time.

So far, Joe has done tremendously well. I think it is important to believe that he CAN AND WILL DO IT.

IF he does relapse, you will need to consider available options (GOSH has a trial going on, then there is the clinic in Germany and several places in the US). But for now, in spite of all the current difficulties, he has done very well.

I totally understand your worry, but there is nothing you can do except taking each day as it comes.

Really hope Joe and you can have a good rest.

You NEVER need to apologise here.
This is a safe place for you to rant, be pissed off, be less than perfect, we will NEVER criticise you or judge you or tell you off.
Whatever you do is the right thing to do. You are dealing with unimaginable crap and continue to do so with grace and humour and stoicism.

But now you need to go to bed.
Here is a kiss on your forehead x

IwishIwasmoreorganised Tue 26-Feb-13 22:26:33

Blimey, what a tough day. So many unknowns still.

Your mind is bound to be going through every possible scenario, that's what we do when we love someone.

You're all giving everything you can to fight this bastard disease. No- one can ask any more of anyone.

I hope that you can find a way of Joe understanding that you do have to drink, you're under such a lot of strain that keeping yourself well hydrated is very important (end of sermon).

Sleep well both, hope tomorrow is a little easier.
Xxx

Seabright Tue 26-Feb-13 22:36:43

Rant away on here, say whatever you want to. And sleep well.

LegArmpits Tue 26-Feb-13 22:39:29

(((((Trazzles)))))

ninja Tue 26-Feb-13 22:42:32

Dear Trazzles, please don't apologise. I can't comprehend what you're going through and you're still keeping going amazingly

Joe's done so well and is fighting so hard and so are you.

Sorry - really don't know what to say. Just wishing you some sleep x x

barefootcook Tue 26-Feb-13 22:58:22

Trazzle- just wanted to say I am thinking about you guys and hope you get some sleep and there is more good news in the morning. Try and stay positive and keep the goal in sight. You have done so well and must keep on fighting for your little man's life. There is no option! xx

kohl Tue 26-Feb-13 23:08:48

Trazzles you are magnificent. A huge splodge and a tonne of sustaining and healing wishes from Cambridge.

Cookingupastorm Tue 26-Feb-13 23:26:57

Well done Trazzle..another day done. Sleep is a good way of giving you that extra bit of strength to walk another step. My brother's little boy went through a dangerous,painful and life threatening illness when he was 3, these days he remembers none of it..my db of course went through living hell and he said his one saving grace was keeping the absolute belief that his son would get better. Keeping you in my prayers x

FoodieToo Tue 26-Feb-13 23:34:42

Saying hi to you both from Dublin. I read your updates every day and am amazed at your courage and good temper.
I am so sorry you are going through this.
I really,really think you will have a good outcome.
My thoughts and best wishes x

ajandjjmum Wed 27-Feb-13 00:12:57

I just wish that all the love and wishes sent by mumsnetters everywhere could guarantee the result we're all praying for.

ajandjjmum Wed 27-Feb-13 00:14:03

And this can never be for nothing. You're fighting with Joe as hard as you can, and you'll never regret that.
xx

Oh trazzle you've got me in tears - not a good look for starting work. You sound utterly worn out, and poor little j in pain and discomfort. You'll look back and wonder how you managed to get through it but you are and you will. And no chocolate Aaargh ( think that's the real reason for my tears).

Please remember this thread is for you, not us. For you to share or offload if it helps, or just pop on for sympathy and mindless chat if you'd rather not think/speak. No one is demanding an update. Only share all the details if you want to xxx

But really, no chocolate
<does the toddler breath holding before a big scream thing>

ToffeeWhirl Wed 27-Feb-13 06:51:24

I'm so sorry for your grim, grim day, Trazzle sad. I hope so much that things improve from now on. X.

Almostfifty Wed 27-Feb-13 07:10:26

Hope you've both had some sleep Trazzle. That's another day over with.

saffronwblue Wed 27-Feb-13 08:49:28

Trazzle I am so lost in admiration for you, JO and your DH at how you all get through every day, hour and minute. This is tough, horrible and testing to a level I cannot imagine. I hate to think of you sitting there feeling worse because you can't drink in front of your little lad. What a wonderful mother you are. Big splodge from Melbourne.x

Hope today is a better day in anyway that it can be. Splodgy things from north London.

dikkertjedap Wed 27-Feb-13 09:04:31

Hope you have all managed to get some sleep and that today will be a better day for the Trazzles.

Also, hope that you can find a replacement for your chocolate (not sure what it could be though).

thanks and a brew

WheresMyCow Wed 27-Feb-13 09:09:00

Trazzle, have been lurking since Joe first became ill, but not posted since then.

Have some (((hugs))) for you all (but just gentle ones for Joe if he's hurting sad ) and splodging and crossing gingers from West Lancs x

Kalypso Wed 27-Feb-13 10:20:19

I hope you all had a peaceful night and got some rest. I am full of admiration for the way you are coping with the constant adrenaline which much be surging through you, and also helping Joe through this at the same time. When your mind starts playing on the what-ifs, try your hardest to re-focus on just getting through the day and don't allow thoughts to wander onto tomorrow and beyond. Of course, it's so easy to say that, isn't it? Sounds like you have a good distraction in the crocheting.
My grandmother-in-law used crochet to relieve stress (her youngest child had a bad illness when he was a baby). Consequently, all members of the family each have several gorgeous crocheted blankets. When I see my DS enjoying lying on them pointing out all the colours and patterns, and hearing all about his great nanny who made them, it's somehow quite nice to think that something beautiful came out of what was a very difficult time for her.

Regarding drinking and eating, I have experience of NOT doing this: my DS was ill in hospital with a weird virus. Unlike you, we easily had the opportunity to eat and drink, as DS was only 13 months at the time and didn't pay much attention to what we were doing, but we didn't because we were flapping over DS, and subsequently we both collapsed at different times, admittedly partly because we also had the virus, but mostly because we just didn't take care of ourselves. Poor DS then had to spend a night away from me while I was in another part of the hospital attached to a drop. A couple of nights later, the same happened to DH.

I know yours is a completely different situation, not least because you're clearly NOT flapping like we did, and also have a bloody good excuse for not drinking bearing in mind it upsets Joe, but I agree that you MUST somehow keep drinking, even if you have to pretend to drop something under Joe's bed, bend down and grab a few gulps from a bottle hidden there! (gulp quietly or make a noise while you're doing it!) You can tell him that you are just getting very clumsy because you are so tired!

Anyway, I am wittering on. Thinking of you, your family and of course, lovely Joe.

VenetiaLanyon Wed 27-Feb-13 11:04:25

You're being so brave, all of your family. Poor little Joe; hope the neurophils are still on the up and glad the crochet's coming on a treat...

Thumbwitch Wed 27-Feb-13 12:38:28

Oh Trazzle - that's so hard. One step forward and two steps back - so often the way with this sort of treatment - but at some point it will change.

Can Joe not even have ice chips? Agree you have to find a way to have a drink, even if it is surreptitious under-the-bed sort of thing. How do you get to go to the loo?

Light splodges, prayers and love from Aus. xx

RatherBeOnThePiste Wed 27-Feb-13 14:48:15

Afternoon assorted lovely Trazzle folk.

Hand holding here. Gentle but big hugs and lots of love Xx

Lovely, kind, funny, dedicated Trazzle you sound so tired and dejected <squeeze>

I'm really sorry that it's getting harder.

Can someone look after DD for an hour for you and DH to have an hour in the hospital canteen together with a picnic, when Joe's asleep?

Do you have a camelbac? I had a dream about you drinking using one last night <odd dream alert> (which is odd as I have no idea what you look like but it was definitely you and you were visiting me in the isolation room I was in when I had swine flu, drinking an isotonic drink whilst checking for my DS's heartbeat in my huge pregnant tummy). Anyway, to Joe a camelbac will look like you've got a feeding tube from a rucksack and you'll be able to stay hydrated.

<goes off to think about chocolate replacements>

If there is anything we can do to help you please say.

Splodging away harder than ever for no VOD and further reserves of strength for you and your DH.

thewhistler Wed 27-Feb-13 18:44:36

Brilliant idea of feeding tube even if it goes into your mouth.

Mints?

If you can't down load on us, who can you down load on, and it is what we are here for.

Chunk it up, and remember that fear is often the thing that is worst. Along with uncertainty. If you can teach yourself to accept them, because they will happen come what may, it is easier. I feel you do that anyway, it's just a bad time.

When you look back, it will have been awful, but Joe won't remember most of it and you will remember being with him.

Agree, is there a rota who could play with dd and sit with Joe while DH and you see each other for an hour, even if only to cry or drink coffee?

Thinking and Splodging

Just checking in to send some love and best wishes for a gentle night

Me too, checking in x

Me too, checking in x

I'm sorry I haven't posted for a while. Still thinking about you all the time though, fingers crossed for an uneventful day x

dothraki Thu 28-Feb-13 07:55:55

Trazz - sending you all hugs and prayers x. At our hospital the childrens rooms have a little en-suite, do you have anything like that where you could leave lots of drinks, those wards get so blardy hot.

Hope yesterday was uneventful. Another day down.

toomuch2young Thu 28-Feb-13 08:10:41

Sending you more healing thoughts and positive vibes. Hoping his sore thumb is feeling better and his liver is doing ok,
Hope you have managed to sort drinking out.
Here's hoping today is uneventful and as ok as possible x

dikkertjedap Thu 28-Feb-13 09:11:22

Hope you all have had a good night.

Sending you lots of positive thoughts and wishes,

x

fraktion Thu 28-Feb-13 09:28:27

Found you again! Haven't been on for a few data but I've still been thinking if Joe and all the trazzle clan.

Sorry to hear Joe's thumb has gone manky and he might have the start of VOD sad Well done him for not sucking his thumb. I'm sure the cuddly toy is doing a great job looking after it.

The rucksack/feeding tube is a brilliant idea if you can get hold of one. I'm sure Joe would understand the parallel.

Splodges and cross gingers from where we are at the moment in Bucks.

N0tinmylife Thu 28-Feb-13 12:51:06

Still thinking of you all here. I hope Joe is doing OK today, and you are managing to look after yourself!

bobkate Thu 28-Feb-13 16:07:56

Checking in and splodging in the sunshine xx hope all ok with you all x

ToffeeWhirl Thu 28-Feb-13 16:53:12

Thinking of you. Hope all is well. X.

thinking of you today xxx

onedev Thu 28-Feb-13 19:29:15

Just checking in. Hope today wasn't too awful & at least it's another one almost gone. You will all get through this.

ninja Thu 28-Feb-13 20:04:51

Thinking of you as we'll, I'd been thinking of suggesting the camelback yesterday or maybe soup to eat.

Another day gone and I hope it was better. You must be exhausted x x

Waving hello and sending prayers and hugs.

Kalypso Thu 28-Feb-13 20:55:43

Also thinking of you and Joe. I really hope you've had an uneventful day and that you're all getting through okay. xx

Have had a very sad day myself and then keep thinking "it is all NOTHING compared to trazzles"

Wishing you a beautiful sunrise and a peaceful day

Toastismyfriend Thu 28-Feb-13 22:12:37

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 Thu 28-Feb-13 23:01:17

Hope today has been better.

Trazzletoes Bosnia-Herzegovina Thu 28-Feb-13 23:19:07

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.

ninja Thu 28-Feb-13 23:27:04

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 Thu 28-Feb-13 23:31:10

I am thinking of you and your family xxx

dothraki Thu 28-Feb-13 23:37:56

Trazzle <hugs and prayers> x

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 Fri 01-Mar-13 00:01:00

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 Fri 01-Mar-13 01:12:14

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 Fri 01-Mar-13 06:32:29

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 Fri 01-Mar-13 07:29:24

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

I hope Joe and cuddles happen today too.

Badvoc Fri 01-Mar-13 07:52:00

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

nothing to add, but still thoughts and prayers xx

dikkertjedap Fri 01-Mar-13 08:46:41

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 Fri 01-Mar-13 09:08:42

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 Fri 01-Mar-13 09:37:04

I think theWhistler sums it up really.

((hugs))

superfluouscurves Fri 01-Mar-13 11:02:50

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

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

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

drjohnsonscat Fri 01-Mar-13 11:52:26

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 stdavids as a sign of Spring - that's hiding for now but is hopefully just around the corner.

upto11 Fri 01-Mar-13 12:01:28

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

I am thinking of you, and praying.

pinkhousesarebest Fri 01-Mar-13 12:03:29

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 Fri 01-Mar-13 12:32:22

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 Fri 01-Mar-13 13:27:29

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.

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 Fri 01-Mar-13 14:56:53

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

Abra1d Fri 01-Mar-13 15:08:24

I'm sorry. Thinking of you all.

blizy Fri 01-Mar-13 15:33:50

Trazzles, sorry no year Joe is still so poorly. I am thinking of you all and hope h pick up soon.x

kohl Fri 01-Mar-13 16:03:18

So sorry to read the latest. Come on neutrophils! Splodging hard for all of you.X

ShiftyFades Fri 01-Mar-13 17:54:19

Oh Trazzle, I don't know what to say that hasn't already been said but I pray and think of you every day. I hope they can sort his thumb and digestive system out and that the VOD remains mild.

I bet you loved every second of holding him in your arms for those 30 mins - hold on to that while things are tough.

It's shitty that DH can't go but you are making the right choice. I'm sure he could have done with the break and I hope DD is soon well xx

Hoping so much things will turn a corner soon.

SarahJinx Fri 01-Mar-13 20:03:12

Trazzle, I read your posts and can't imagine the actuality of what you're facing.

Praying for Joe to stay as strong as he possibly can, praying for those neutrojobs to keep doing their thing. Praying for you too Trazzle x

narmada Fri 01-Mar-13 20:18:30

Trazzle I hope the weekend brings better news and more cuddles from your boy. I will be thinking of you.

Trazzletoes Bosnia-Herzegovina Fri 01-Mar-13 20:45:44

Hi. Another steady day. No better but no worse.
He keeps crying because he's so thirsty and he's not allowed to drink sad

His thumb still looks manky but it is starting to itch so I guess that's a sign that it's starting to get a tiny bit better? Poor Joe has said he's never going to suck his thumb again. Although I wanted him to break the habit I feel so sad for him because it was such a source of comfort for him sad

I had a good chat with his Consultant today who said again that nothing will really change until his neutrophils start coming up. That's the source of all goodness. Predictably, today they have slipped a little again.

He is just so unhappy, poor little lamb.

It's crazy thinking that we may not even be halfway through this admission yet.

DH and I do get to see each other for an hour or so at the weekend and about once a week we eat dinner together. I just miss the total normal mess of hanging out together. Talking to him whenever I want to. Sitting next to him on a sofa.

He will get through this. It is just so painfully slow. There is a good chance we will still be here, in this room at Easter. I'm actually going mad.

Badvoc Fri 01-Mar-13 21:05:50

sad
Poor joe.
Thinking of you as ever xxxx

dinkydoos Fri 01-Mar-13 21:11:50

Oh trazzle, really feel for you all (understatement alert!)
Don't know what you have with you there or even what you are allowed to have, but can you get some stuff to watch on an iPad or something, with headphones for when Joe is asleep? Can recommend the US comedy series, Modern Family?
Just thinking of ways in which you can be distracted for a while. X

Toastismyfriend Fri 01-Mar-13 21:14:06

Oh Trazzle, you are doing so well. My mantra has always been in tough times, 'This too will pass'..it won't be like this forever. Chin up, focus on the little positives and remember none of you are alone x

Toastismyfriend Fri 01-Mar-13 21:16:07

My other stalwart companion is 'Where's your stiff upper lip? Right above my lower wobbly one' wink

dikkertjedap Fri 01-Mar-13 21:22:11

Poor, poor Joe and how heartbreaking that he feels so thirsty and is not allowed to drink sad sad sad

Very much hope that his neutrophils start increasing soon.

Thinking of all of you and wish I could do something to help a tiny bit but don't know what sad

ajandjjmum Fri 01-Mar-13 21:35:11

I know one thing Trazzle - you will never ever take the simple things for granted again. Sorry Joe is still so miserable but hope he will soon show an improvement. Take care of yourself.

IwishIwasmoreorganised Fri 01-Mar-13 21:45:35

This really is a tough long haul. It's so cruel that he wants to drink but can't. He's just too young to understand why and that must be heartbreaking.

Fingers crossed his itchy thumb is the start of it healing.

I'm sure those neutrophils are just having a slow Friday and will perk up again over the weekend - my gingers will stay crossed.

Is there anything that we could send to help at all? For entertainment, hydration, snacks anything for Joe? Please pm me if there is.

Trazzletoes Bosnia-Herzegovina Fri 01-Mar-13 21:48:36

dinky thanks, we have an iPad here, and the hospital provides a computer and Internet. We also have a tv and DVD player. Plus my crochet so I'm fairly well catered for! I just find it hard to believe that life is going on as normal for the rest of the world. Even DH gets to go round the shops in his lunch hours.

The play staff here are amazing and, when Joe let's me, I can usually run out to 1 specific shop for 1 specific thing.

Joe is still within the bounds of what they expect. I just hate seeing him so sick.

narmada Fri 01-Mar-13 21:52:01

"Joe is still within the bounds of what they expect"

Keep repeating that to yourself, over and over and over. It's the good news hidden in there, right?

drjohnsonscat Fri 01-Mar-13 21:56:09

Wouldn't it be wonderful if you could transport the bed and the staff to a Swiss mountaintop or a viewing point in the Serengeti? You must feel so marooned and claustrophobic in there. Maybe there's something in this flying bed concept?Some lovely fresh air would give those neutrophils a boost too.

Thinking of you all and hoping for better days v soon.

Trazzletoes Bosnia-Herzegovina Fri 01-Mar-13 22:22:25

Ooh many moons ago we went to visit some of DF's friends in Switzerland and they took us to a spa high up in the mountains... I could properly do with another trip there right now!!!

ninja Fri 01-Mar-13 22:40:02

Trazzle - what srikes me through your posts is how sane and focussed you sound - and horrible as all of the side effects of the treatment are "Joe is still within the bounds of what they expect" is good news isn't it?

I wish I could transport you all to a spa high up in the mountains sad

bobkate Fri 01-Mar-13 22:42:00

That spa sounds idyllic! Really hoping the itchy thumb is a sign it's getting better. I always remember my mum telling me if it's itching it's getting better...and so that's what I now tell my DDs. No idea if it's actually true or not?!
Anyhoo - realised I write drivel, just deleted a load! Suffice to say the long and short of it was... still here, still wishing good things and still thinking of you xx

Trazzletoes Bosnia-Herzegovina Fri 01-Mar-13 22:47:08

Thanks.

bob that's the first thing I said! And the nurse agreed with me.

spa the view from the outdoor pool was spectacular!

I am not sane - anything but! Had a little cry at DH today. Must not go properly mad yet, there's every chance we're not even halfway through this yet!

Have been lurking out of not knowing what to say, but thinking of you all.

dikkertjedap Fri 01-Mar-13 22:58:43

Looks lovely.

Don't know if it exists, but something like that in a nice warm environment would seem even better to me (don't like cold places).

dikkertjedap Fri 01-Mar-13 23:07:38

And yes, itching means healing. smile

The itchiness is caused by the growth of new tissue, as a result nerve cells are being stimulated which causes the itching sensation.

Wound healing is a very complex process, a few years ago, a Scottish scientist discovered that the inside of the wound has a different voltage than the margin, resulting in cells following the electrical gradient during the wound healing process. This is how cells find the base of the wound.

ninja Fri 01-Mar-13 23:09:33

A little cry? I have one of those when I can't decide what to wear!! I think when this is over you'll look back and realsie how amazing you've been.

I also think itchy means getting better, it it always feels like that to me x

ShiftyFades Fri 01-Mar-13 23:33:09

There was a programme about the human body and how it heals recently in the last few years and it explained the itchy feelings as well as bruising etc. it was really fascinating. Our bodies are so clever.

So good news about the thumb and being "as expected".. We just need to cheer on the 'phils'

Big hugs Trazzle, hope you both get some rest tonight xx

thewhistler Fri 01-Mar-13 23:39:49

Big hugs indeed.

Hope your night is ok.

Thumbs up! smile

Continuing to pray for you all

tangledupinpoo Fri 01-Mar-13 23:51:09

Thinking of you all, and willing Joe and his neutrophils, and itchy thumb, on.

I can only imagine how shuttered and intense your world must feel at the moment. Am hoping that even if you are not yet halfway through this admission, the second half will go a lot more quickly, like the bit of a car journey when you're heading home.

Hope you both have a good, restful night and your DD gets over her bug quickly.

Am having a bad day and feeling sorry for myself,this thread is a much needed wake up call (and I know that isn't how you intend it at all Trazzle, but I'm whining because DH got up too early and spoiled my early morning peace <slaps self>)
Keeping my gingers crossed still

Trazzletoes Bosnia-Herzegovina Sat 02-Mar-13 08:40:35

Oh SPB don't be silly. There will always be someone worse off than you.

I feel bad for crying and moaning when there are parents here who have been told there is nothing more that can be done for their children.

But my feelings at the moment are still valid. As are yours x

Just as an aside, I've spent waaaaaaaay too much time on here this week and as a result can I encourage you all on to the bra threads? The ladies on there are outstanding! I can't believe how many ladies are wearing the wrong size bras! (It's basically everyone...)

Badvoc Sat 02-Mar-13 08:44:48

Morning trazzles and joe smile
Hope for an itchy Healy happier day x

I've had my bra intervention already trazzles! I wasn't too far off, but I've not been measured in M&S since I was take there by my mother! I came out with a old fashioned conical number circa 1953! Never again!!

dikkertjedap Sat 02-Mar-13 09:47:59

I hope all Trazzles, and especially Joe, have had a good night.

I think that staying for a long time on a children's ward can be soul destroying because of the things you either experience yourself or see experienced by others.

Please, don't feel bad for crying and moaning Trazzle, it is a natural way of dealing with the emotions rollercoaster you and the others are on.

It is a very artificial environment with so much suffering on the one hand and immense joy on the other hand, one moment you may feel unbearably sad either because your own situation or the situation somebody else finds themselves in, and then there can be a moment of immense joy because of something your child or another child does/is able to do/test result etc. - it is such a roller coaster, and can be so so draining.

I hope Joe is going to have a better day today and is able to find something which interests him, even if only for a brief period.

Thinking of Joe and the other Trazzles and willing you on,
JOE CAN AND WILL DO IT. thanks thanks thanks thanks thanks

Popping by to wave pompoms for thumbs and Joe getting stronger.

<goes off in search of bra threads as half my bras are older than my oldest child who is 11 next week smile>

Trazzletoes Bosnia-Herzegovina Sat 02-Mar-13 10:26:42

bra thread here Tea. You won't regret it, I promise!

TabithaMcKitten Sat 02-Mar-13 12:55:36

Still keeping everything crossed for your lovely boy, although he sounds like he is doing fabulously well!

My son has leukaemia and his neutrophils were always incredibly slow to get going when he was in the intensive phases, so I do understand the anxiety associated with that.

Make sure you try and look after yourself - especially with the gallstones. I ignored everyone who told me that (also because it's flaming difficult to do it) and I have now ended up in hospital myself so I'm really regretting it now!

X X

shallweshop Sat 02-Mar-13 13:02:33

I keep popping back to check Joe's progress Trazzle and I am willing him back to full health. Keep strong - you are amazing!
xx

Off to check out bra thread ...

Kalypso Sat 02-Mar-13 22:19:07

Just checking in again. I really hope things are getting a little easier and that Joe is having a better day. You are doing fantastically, hang in there.

dikkertjedap Sat 02-Mar-13 22:39:13

Thinking of lovely Joe an you. I hope today has been okay.

x

thewhistler Sat 02-Mar-13 22:42:40

Thinking of you.

Having spent three nights in a hospital room with my dd, I have some idea of how clustrophobic and draining it is. For the time you've been there and the time you have left, I think you are perfectly entitled to go a bit barmy!
As always splodging and vibes and holding you guys in 'the light.

tholeon Sun 03-Mar-13 08:25:42

Just to add to the voices saying I think you are doing bloody brilliantly! Hope the night was bearable xxx

Trazzletoes Bosnia-Herzegovina Sun 03-Mar-13 21:55:11

Still stable. No improvement, but not getting worse either.

More and more fluid collecting in his abdomen. He weighs an extra 2 kilos now!

Bless him he wanted to watch that BBC penguin programme. I put it on and he fell asleep after 5 minutes. He was so sad when he woke up to find it had finished. My DSis has got him Happy Feet though so that might dull his pain tomorrow.

Thank you so much for offers of stuff for him. He has more than enough stuff to be getting on with at the moment, he just isn't able to focus on anything for more than a minute at a time. And that's on a good day.

toomuch2young Sun 03-Mar-13 22:03:39

Oh the penguin programme is marvellous he has fab taste they are so cute! Can you access bbc iplayer? Will be on that tomorrow and then you can pause it if and when he falls asleep.

Hope he is well enough to enjoy happy feet. A lovely film. Would love to send him some films if you run out at all. Our local blockbuster video store is closing so can grab some bargains - if any he hasn't seen and would like to please just say.

Sending positive healing thoughts and gingers crossed for Joe and all your family as always.

Thank you for your little mention on the (now deleted) crying thread.

I have been in the car with DH for a LONG time today, and he was asking about Joe and we were talking about him, and about how wonderful you are, and where we would find the strength, and how we JUST WOULD, and about the cancerfuckersnail and about D0G and her DDad, who is the only other person to have received a cancerfuckersnail, and how Joe would cope not sucking his thumb, and how DS could only JUST cope without his dummy at a similar age blush and how we hope and wish and cross gingers and need for Joe to be well, and how that is the teensiest tiniest fraction of what you feel, and how we can feel so strongly about a little boy we have never met.

Sending love and splodges from Malvern to Devon and back to Malvern.

kohl Sun 03-Mar-13 23:16:26

Thinking of you and Joe, and hope he enjoys happy feet tomoz.

MrsDeVere Sun 03-Mar-13 23:21:53

Dear little Joe x

dikkertjedap Sun 03-Mar-13 23:45:25

Thinking of you and how hard this battle is. So sorry to hear that there is more fluid. Does it make Joe very uncomfortable?

Bless him that he tried to watch the penguins. As others have mentioned, he will be able to watch it on BBC i player tomorrow.

Hope you are looking after yourself and manage to get enough to drink.

Keeping everything crossed for a good night and a good day tomorrow for all the Trazzles.

x

Stable is ok. Another day down. Praying for improvement tomorrow smile

onedev Mon 04-Mar-13 00:08:48

Another day further forward. Thinking of you all & praying hard for Joe.

It's so excruciating seeing your child suffer. I feel for you so much. Praying for you. Splodges from Rays of Sunshine ward!

minmooch Mon 04-Mar-13 07:20:11

Thinking of you all. I hope that the Drs are able to sort out the fluid build up.

So horrible watching your child so poorly.

Many hugs.

thewhistler Mon 04-Mar-13 07:38:08

Splodging for a good day today.

ninja Mon 04-Mar-13 07:45:52

Thinking of you, hope for some improvement today x

Good to hear he isn't getting any worse. But sorry to hear about the fluid retention. Hoping for improvement very soon.

Thanks for the bra link. I'm still in shock!

Wishing for strength for you all. Xxxxx

RatherBeOnThePiste Mon 04-Mar-13 10:13:47

Big hugs Trazzle, keeping you all close in my thoughts here.

I need the bra link, and I actually have found my tape measure. Going there now....

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 11:44:03

Stable again. The fluid is still collecting... His poor little tummy is so swollen. And it's bruising from the pressure inside sad

He is thoroughly miserable and I don't blame him at all. More scans this afternoon to see what the fluid is doing in the areas around his lungs.

Oh. Poor little love. I hope he's able to get a moment of comfort somewhere in the day.
It must be so hard to watch him going through something so very, very terrible.

So awful. I wish there was something that could be done, as do you I'm sure. Hope the scan is positive.

dothraki Mon 04-Mar-13 12:00:37

Trazzle - hope it goes well this afternoon - thinking of all of you x

Thumbwitch Mon 04-Mar-13 12:02:32

Hope they can do something about the fluid and that he not only remains stable but starts to improve. Poor little boy - hope he can watch the Penguins thing on i-Player too. xx

IwishIwasmoreorganised Mon 04-Mar-13 12:38:05

Still thinking of you all.

Hope that the scans give some useful information to start to resolve the fluid problem xxx

Poor little mite sad I expect actually getting the scans will be a wretched process because of his discomfort but just hold on to the fact that it's needed so you can move forward.

dikkertjedap Mon 04-Mar-13 13:44:47

Thinking of Joe. Hoping that the scan has helped the doctors find a way of dealing with the fluid build up and that the scan has been bearable for Joe.

So sorry brave little Joe that you have to endure this all. sad

Also, thinking of you Trazzle, so sorry that you have to see Joe so poorly on a day to day basis.

All gingers crossed for a solution and improvement.

Wishing you lots of strength, positive energy, hope and sunshine. flowers flowers flowers

I'm watching happy feet two with ds right now. He wants to dance along with them, I want to squeeze and hug him, but he keeps fighting me off. I wish and hope (I don't pray, but I might start) that Joe is on the road to recovery. So you can squeeze and hug him soon. And that he can fight you off when mummy's annoying him.

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 15:06:49

Oh he fights me off Fizzy most times I try to kiss him he shoves my face away hmm

That's good to hear! smile Much love to you all.

Badvoc Mon 04-Mar-13 15:43:44

Does joe like penguins of Madagascar trazzles?
My two love it (and I am quite a fan myself!)
Hope joe has a good day today x

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 15:58:15

He likes all penguins grin

Still steady today though in pain and grumpy. I just want to make him better.

My Dh was humiliated by a penguin

Was it shineys penguin spb? grin

We are going to the zoo soon, they have the penguin walk every day. I will take photos for you.

Unfortunately not. No, it was actually the penguin man at the aquarium who ridiculed him for assuming pengiins only live in cold climates. We've never let him live it down

Has he not seen surfs up!! Another great penguin movie!!

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 16:25:41

I've never heard of Surfs Up so I doubt it grin

There's a bird park near us with some penguins in and it's his favourite bit.

Btw I've sorted the drinking issue - there's like an ante-room or entrance chamber in to his room. I make a drink in the kitchen and then leave it in there. He will accept me walking in to an adjoining room where he can still see my arm while I hide round the corner and drink/ eat with the other hand grin sneaky!

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 16:28:04

Thanks to whoever offered films from their local Blockbuster - it's very much appreciated but he is concentrating on a rotation of about 5 at the minute despite me having brought in every age-appropriate film I own and having worked for Disney, that's a lot plus the play staff have actual hundreds of films to borrow as well.

So thank you kindly but it's not necessary thanks

http://www.imdb.com/title/tt0423294/ I have a copy I could send you if you want. I know you say he doesn't need more, but you must be going spare watching the same 5 films over and over!!

www.imdb.com/title/tt0423294/ sorry clicky link now!

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 16:55:42

Oh bless you Fizzy yes I'm now word perfect on The Lion King, 101 Dalmatians, Treasure Planet (English AND Russian), The Reef and The Princess and the Frog grin

And Russian! Wow! Everyday is a school day!!

Ds is obsessed with Cars right now! Lightening McQueen has been the reason of several meltdowns recently!

The lion king is a great film though! And one you can sing along with!

hakuna matata, what a wonderful phrase, hakuna matata ain't no passing craze <starts dancing>
It means no worries for the rest of your days!

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 17:19:44

"But Mummy I don't LIKE your dancing" <pouty face>

Haha we don't speak Russian (well, I do but only a teensy bit), he just liked the idea of watching it in a foreign language. Many times.

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 17:20:54

Cars is an option that he is rejecting at the moment. And he calls him Lightning LeQueen grin

See, no matter how they are feeling they can still express their displeasure at mums embarrassing them!! Ds isn't quite at the talking sense part, so I'm going to enjoy it while it lasts!

RatherBeOnThePiste Mon 04-Mar-13 17:28:01

Good news about the drinking! Not obv referring to gin there. Or am i? grin

I like Cars btw

thewhistler Mon 04-Mar-13 19:18:20

Good news indeed about Trazzlehydration.

Let us know if you need emergency gin/ vodka supplies.

Yes of course! <bangs head with palm of hand>

The body in another space, with an arm out looking like it's doing something different thing. I do that with gin and chocolate. I think if someone thinks I'm getting a binbag out of the cupboard or playing with tupperware it doesn't count. Damn, it was the obvious solution!

Good work Trazzles

Embarrassing mum dancing. Inspiration. Today my neon trousers and silver sparkly vans were eye-rolled at <sobs>. Next time it happens I will communicate "I don't care what you think, I'll wear what I want, I'm a grown up and can do what I like, now do your homework and stop being arsey" through the medium of dance and mime.

Suggest taking up Pistey's idea if you're having to watch the same five films again and again. Gin! Perhaps you could put that in a camelbac? Happy to join whistler in ensuring supplies are air-dropped into Yorkshire to ensure your sanity remains intact.

Splodging away for Joe, penguins and fluid retention disappearing.

dikkertjedap Mon 04-Mar-13 20:59:33

I got somewhere a knitting pattern for a penguin as I made one for dd. It was not very difficult. If you want I can look it up and post the pattern in your thread if you want to give it a go.

I am also more than happy to knit a penguin for Joe - just let me know which colours he likes.

Hope the scan wasn't too bad for Joe and that he can have a good sleep. Hoping for a better day tomorrow.

So glad that you have found a solution enabling you to drink/eat.

x

Am working on felt penguin RIGHT NOW...
Exciting.
Might make him cossacky with a fur hat and Rasputin beard

Dikker I'll have a to at a knitted penguin if you want to link!

Trazzletoes Bosnia-Herzegovina Mon 04-Mar-13 21:36:13

Much as I would LOVE kill for emergency alcohol supplies, I fear that the hospital maaaaaaaay just frown upon me being tipsy hammered in charge of a seriously ill child, but thanks grin I always look at the tinnies in Tesco with desperation in my eyes!!!

Joe's Consultant is reasonably happy with him, DD is still sick as a dog sad.

I am impatient for good news.

Another day done. smile Seems like he's progressing still within the norms for this very serious treatment isn't he? It must be hell to see him like this but you're getting through it and so is he. You're doing so well smile What a fantastic mum you are.

onedev Tue 05-Mar-13 00:04:26

So sorry that your poor dd is ill & hope she feels better soon.

You are all doing so well - it's hard to know what else to say - but you will all get through this & Joe will be even more amazing than he already is!

Gingers crossed as always & splodging brightly.

asleb Tue 05-Mar-13 11:27:06

That's great his consultant is happy with his progress. Go Joe!

You're doing an amazing job too Trazzle.

asleb Tue 05-Mar-13 11:28:06

Oh and sorry about dd being ill, poor thing. Fingers crossed she is feeling better soon xx

Trazzletoes Bosnia-Herzegovina Tue 05-Mar-13 22:20:20

Northern yes he is thankfully still well within the realms of " normal" even though right now that feels like "horrific".

And flipping heck, what a 24 hours!

DH was in last night and Joe's pain meds were changed - the poor little guy has been in agony ever since. The longest sleep either of them got last night was 40 minutes sad. It's carried on all day today and he is still in a lot of discomfort now as well as feeling very sick.

It's awful to see him like this and be so powerless to help.

On the positive side, his neutrophils have crept up a teeny tiny bit and... <drum roll> his bowel sounds normal! <fanfare>. Maybe in a few days there might be the teensiest tiniest possibility that maybe perhaps possibly he could potentially have a tiny sip of water... Not holding out any hope though.

And with that, I'm off to bed. It's going to be a long night.

Night Night Trazzles

<strokes Trazzles hair>

I'm sorry that Joe is in pain. Poor little lamb. And I feel for you and your DH having to watch such a precious, wonderful, strong little boy so very helpless.

Splodging for neutrophils creeping some more and bowels that not only sound normal but are normal.

narmada Tue 05-Mar-13 22:37:55

Lights on here too. Really, really great news on bowel function. was it morphine knocking it out or something?

Hope you get more than 40 mins sleep... Come on Joe's neutrophils, get a move on with your multiplting please.

dikkertjedap Tue 05-Mar-13 22:45:21

sad about the pain, hope they manage to get it better under control for tonight.

Good news about his bowel and very good news that the neutrophils are increasing.

Hoping that tonight will be better. flowers

Glaikit - I will look up the pattern (it was in a magazine) and pm it to you if you like.

ShiftyFades Tue 05-Mar-13 23:01:54

I'm so sorry that I haven't been on and haven't caught up on the thread for the last few days. I promise I will, very soon. I've been in ICU with a very poorly Dad after emergency bowel surgery. He's in high dependency as of this afternoon so I will be able to have my phone on smile

I have still been thinking of you and Joe, I hope you are all doing ok and Joe is comfortable. I've missed reading your updates.

Much love to you xxx

kohl Tue 05-Mar-13 23:02:17

Good news re neutrophils. Will have all my gingers crossed that the night passes as peacefully as poss.

barefootcook Wed 06-Mar-13 00:09:58

I hope the night goes better than it looks like it might. Poor Joe, it is too much for the little guy. Wanted you to know I am thinking about you. Good news about the neutrophils- at least that is something.

Missymoomum Wed 06-Mar-13 02:54:25

I haven't written on here for a while but i've been following his progress. The bit about him loving penguins really touched me as my DS (6) and DD (4) both adore penguins. My DS has had a Mumble comforter from birth that came free with Comfort fabric conditioner just before he was born and he is his favourite toy and he can't sleep without him.
Have they sorted his pain meds out if they aren't working? Hope you both get a better nights sleep.

blizy Wed 06-Mar-13 07:50:33

Good news about the neutrophils, although not so good that he is in pain. I hope thy can control it today. How is dd?
I hope you had a decent night, thinking of you all, as always.

Thumbwitch Wed 06-Mar-13 07:53:55

HUrrah for increasing neutrophils! smile
but boo to change in pain meds causing more problems and lack of sleep sad
Hurrah again for bowel sounds and potential for water sips! smile

Splodge and crossed gingers still coming your way from 10,500 miles away. x

Toastismyfriend Wed 06-Mar-13 08:33:35

Checking in every day, thinking and hoping for you. Well done Joe..you are doing it xx (sorry about your dad shiftyfades, hope he is on the mend)

dikkertjedap Wed 06-Mar-13 09:22:29

Hope that last night has not been too bad for Joe (and you/your DH) and that the doctors are getting a handle on the pain.

I suppose they cannot give him morphine as he had side effects from the morphine???? Hope very much they can find something equally effective but without the side effects.

All gingers crossed for increasing neutrophils.

Thinking of all the Trazzles,

flowers flowers flowers

tholeon Wed 06-Mar-13 10:23:28

Oh your poor lovely boy, and you andDH having to watch it. I hope they can sort the pain meds out soon. I hope you get more and more good news about the neutrophils and bowels xx

ToffeeWhirl Wed 06-Mar-13 10:35:47

Poor Joe. I hope he is more comfortable today. And how dreadful for you and your DH having to see him in so much discomfort. But it's fantastic news about the neutrophils and the bowel smile. I hope today sees more progress.

Shifty - sorry about your dad. I hope he's on the mend soon.

Trazzletoes Bosnia-Herzegovina Wed 06-Mar-13 14:01:26

Oh shifty so sorry to hear your news. I hope your dad feels better soon.

dikkert they switched him off the morphine because he has huge fluid retention and the morphine stops him weeing. He is still full of fluid though sad

I lost count of how much I was up in the night but the nurse reckoned it was every 30 mins... How's pain was better controlled but he was feeling very sick all night. They have now given him some better anti-sickness drugs which co-incidentally have made him drowsy so he's sleeping off 2 nights of no sleep.

Neutrophils up in the 0.4s today which is great. DD is well enough to be back at nursery...

All steady so far.

Badvoc Wed 06-Mar-13 14:26:56

Still thinking of you trazzles and hoping for a more peaceful pain free night x

CinnabarRed Wed 06-Mar-13 14:29:17

Bless him. Hoping you're both sleeping soundly.

Trazzletoes Bosnia-Herzegovina Wed 06-Mar-13 14:48:10

Badvoc it should be better tonight unless his temperature keeps going up...

I'm at home tonight though so it will be a very early night! But Joe is a million times more settled than he was this morning even so that's good.

narmada Wed 06-Mar-13 15:07:37

I love checking in to find good news. Go, Joe.

thewhistler Wed 06-Mar-13 15:55:04

Trazzle,

Thinking of you as I sit in outpatients surrounded by adolescents. Hope the pain control and anti sickness do their stuff and the neutrophils do theirs.

Shifty, so sorry and hope things go well.

Badvoc Wed 06-Mar-13 16:01:08

Oh, I am so pleased! smile
I think of you often as I go about my very boring normal days and know that you would love a boring, normal day.
Thats my wish for you and joe...lots of perfectly normal boring days to come!
Sending love x

Trazzletoes Bosnia-Herzegovina Wed 06-Mar-13 16:54:37

Well, it was always too good to last. He has spiked a temperature. No one knows why since he is already on antibiotics and anti-fungals.

That means his neutrophils will plummet again.

<cries>

I've had enough.

Badvoc Wed 06-Mar-13 17:04:03

Oh trazzles sad
I dont know what to say.
You must be utterly utterly exhausted.
Perhaps its just a short term reaction to meds change?
xxx

LillethTheCat Wed 06-Mar-13 17:04:27

Oh no sad so sorry to hear that.

Sending all my wishes and hopes to you.

(((((((((hugs))))))))

RatherBeOnThePiste Wed 06-Mar-13 17:05:06

Oh Trazz, biggest of big hugs from me Xx

Oh no trazzles, I hope they work it out soon.

asleb Wed 06-Mar-13 17:13:22

Oh Trazzle, so sorry to hear that. Stay positive and let us know how he gets on tonight xx

narmada Wed 06-Mar-13 17:19:31

So sorry Trazzle sad sad sad

kohl Wed 06-Mar-13 17:23:28

Fuck. So sorry trazzles. Of course you want to cry. Huge hug.X

blizy Wed 06-Mar-13 17:26:11

No words trazzle, just a huge hug and a Hand to,hold. X

dothraki Wed 06-Mar-13 17:43:59

Oh Trazzles - I am so sorry hugs and x

MrsPennyapple Wed 06-Mar-13 17:44:46

So sorry to hear that Trazzles. Adding my hand to those available for holding. I'm sure I'm not alone in wishing I could do more though.

Oh Trazzles - that is right royally shit. I'm sorry.

Splodging for a lower temperature.

dikkertjedap Wed 06-Mar-13 18:38:12

Oh Trazzles, what a horrible roller coaster you are on. It sounds utterly exhausting. sad sad sad Glad that Joe has managed to sleep this afternoon, he must be feeling exhausted too.

I very much hope that the doctors have managed to sort out his sickness and have identified what is causing his temperature to spike.

If the morphine caused the fluid retention does it mean he does not have VOD, but it was the morphine?

I hope that all the Trazzles are going to have a better evening and night.

Sending lots of hugs, positive thoughts, strength.

(((((((*trazzles*))))))))
You poor darling, what a huge amount you have to deal with sad

Sending you love and the best of all possible news for tomorrow

BarmeeMarmee Wed 06-Mar-13 19:41:48

Oh Trazzle sad I'm so sorry. Poor Joe. Poor all of you. Big hugs. I don't know what else to say but am lurking, praying and Splodging away.

Alibabaandthe40nappies Wed 06-Mar-13 19:44:12

Trazzles <squeeze>

Sending a hug Trazzle sad
Don't know what else to say or do, but sending a hug and best wishes and positive vibes x

minmooch Wed 06-Mar-13 20:36:46

Trazzle it is so, so hard. Up one minute, down the next. I hope the Drs are able to pinpoint what is making his temp spike. It is so exhausting. My thoughts are with you xxxx

thewhistler Wed 06-Mar-13 20:40:32

Trazz, so sorry. Yes, far too much. All the f words.

Loads of thoughts and prayers. And hugs and virtual drink and chocolate. And a top up of your amazing courage.

Splodging from s London.

Thumbwitch Wed 06-Mar-13 20:59:49

Very sad to hear that his temp is up with no apparent reason, Trazzles. Everything crossed here that it starts to come down very soon and his neutrophil level isn't affected.

SarahJinx Wed 06-Mar-13 21:36:23

Lord Trazzles, it's too much. Thinking of you and that gorgeous boy, wishing for some rays of sunshine for you soon.

onedev Wed 06-Mar-13 21:37:16

That's shit - really sorry to hear that. Hope tomorrow is a better day. Gingers crossed.

Oh crappy crap, read your good update and was all yay, then read your last one and now not yay. Can't imagine how you guys are feeling. Hope it's all a bit better by morning xx

Trazzletoes Bosnia-Herzegovina Wed 06-Mar-13 22:00:53

DH just texted to say a chest x ray has revealed an infection in his right lung. The Dr on this evening thinks that the antibiotics he is on should deal with this.

However, my blood is running cold as we were warned about a specific lung infection before all this started by his consultant. I am terrified that this is the "dangerous" lung infection. I know there's every chance it isn't but that isn't taking the terror away. I can't think rationally at the moment though I know enough to know I'm not being rational.

I guess we will need to wait til morning for someone who knows Joe better, or knows neuroblastoma better, or one of his consultants.

I don't know which Dr saw him this evening but it is likely to have been one of the registrars who started a couple of weeks ago which is compounding my anxiety a little.

Sorry, I've got myself really worked up about this. Lung infection were the 2 words I desperately did not want to hear.

Splodging for you tonight Trazzle family. xx

Trazzletoes Bosnia-Herzegovina Wed 06-Mar-13 22:03:32

Sorry dikkert I didn't explain myself very well. Joe definitely has VOD - it's been confirmed on a scan. The VOD causes fluid retention. Morphine makes your bladder lazy so the morphine was not causing fluid retention but was compounding it. Although he hasn't been weeing any more without the morphine so they are considering a catheter tonight unless he goes soon.

Sounds like a tough day. Just hang in there Trazzles. Praying for good news here for you all.

onedev Wed 06-Mar-13 22:12:51

Oh Trazzle - really hope it's not that lung infection. The whole thing is such a bastard. Gingers crossed for the right result.

x-posted with you Trazzle. Praying the news is better in the morning.

dothraki Wed 06-Mar-13 22:14:21

Is it psuedomonas ? The antibiotics will really be helping. Although a catherter is horrid it will really make it easier. Praying for Joe and Team Trazzle xxx

siblingforbetsy Wed 06-Mar-13 22:14:45

Oh trazzle. What a shit horrid scary place for you to be right now.

I think about your little dude often, sending positive vibes, a hand to hold and a big splodge of light from the Essex riviera.

IwishIwasmoreorganised Wed 06-Mar-13 22:15:23

Good that they've diagnosed a lung infection so they know where his temperature is coming from, I'm keeping my gingers crossed that it's not that chest infection and that someone can offer some reassurance very early tomorrow morning.

Xxx

So very sorry to hear all this.

Hope you get some sleep and you'll get clarity and some good news in the morning.

Trazzletoes Bosnia-Herzegovina Wed 06-Mar-13 22:24:21

<hi-fives Betsy > I do hope you're talking about the estuary (it's kind of my manor)

Oh no Trazzles, how frightening for you. I hope the antibiotics knock it on the head as fast as possible. Thinking about you all tonight xxx

Will keep everything crossed it is not the lung infection. In my thoughts x

barefootcook Wed 06-Mar-13 22:34:49

Trazzle- just wanted to say I am thinking of you. It is just one thing after another. Hope the doctor is right and the antibiotics will sort out the infection. Take care xx

tangledupinpoo Wed 06-Mar-13 22:38:36

Oh, Trazzle, this bastard illness. You must be utterly strung out. Sending lots of positive thoughts for little Joe and you all and hoping very much this infection is controlled very soon. X

thewhistler Wed 06-Mar-13 22:50:07

Thinking of you, him, DH and of course dd.

Splodge here continuing.

Asheth Wed 06-Mar-13 23:24:16

I was so pleased to hear your earlier update, but now so sorry to hear things have got worse again. Keeping everything crossed that the antibiotics can deal with the lung infection and that it's not the one you fear. Also hoping Joe has a restful night. Thinking of you all. xxx

saffronwblue Thu 07-Mar-13 02:45:19

Thinking of you all and praying for better news soon.

ninja Thu 07-Mar-13 07:02:00

Just to say I'm still thinking of you and that the news is better today x

dikkertjedap Thu 07-Mar-13 08:37:26

Oh Trazzle, what a worries.

I very much hope one of Joe's consultants has been to see him now and that they are being able to rule out THE lung infection and that they have found out which antibiotics he needs.

I feel so so sorry for little Joe sad and I feel so sad for you and your DH that you have to witness Joe going through all this. It is horrific.

I hope that all Trazzles managed some sleep last night. Please try to look after yourself, as it no doubt will be taking its toll on you and your DH as well, emotionally and physically.

Lots of hugs for all the Trazzles

x

tholeon Thu 07-Mar-13 08:42:05

Just sending a splodge. Of course you are scared. Hope you get some good news, today. X

5madthings Thu 07-Mar-13 08:48:49

Sending love and strength and hoping the antibiotics kick in and sort out the infection xxxx

Trazzles of course you're feeling anxious .... anxiety is apprehension about the unknown and our minds filling unknown with the worst case scenario. It is completely normal without all your questions answered and gaps in information.

I hope that you can get your hands on someone who has the information you need as soon as possible.

Perhaps, if you think it will help, when you or DH are away from Joe and the hospital you can be given a contact number so you can speak to the medical staff in charge. You will, no doubt, both approach new situations differently - ask different questions.

I really, really hope that it isn't that lung infection. Hoping for a better day for all the Trazzles.

narmada Thu 07-Mar-13 09:11:42

Oh no. I really hope it's not the lung infection you fear. I can well understand you're up to your limit now with all this. It's too much for a person to bear sad

LillethTheCat Thu 07-Mar-13 09:23:01

Thinking of you and I hope the lung infection is a different one to the one you're thinking. Hope things improve for you today.

Badvoc Thu 07-Mar-13 10:09:53

Still thinking of you all xxxx

Trazzletoes Bosnia-Herzegovina Thu 07-Mar-13 14:11:41

Ok, now the Drs are saying that its unlikely to be a lung infection. Something has caused the temperature but I'm a little bit calmer now.

Cautiously good news

dikkertjedap Thu 07-Mar-13 14:23:43

Good news that it is unlikely to be a lung infection and hope that they quickly find what is causing Joe's temperature.

Given what a distress the (junior) doctors last night have caused you (through no fault of their own, they are still learning and maybe not very familiar with Joe and/or neuroblastoma), can they give you contact details of one of his consultants so that in future you can directly speak to them in such a situation?

How is Joe today?

upto11 Thu 07-Mar-13 14:32:11

Oh I do hope that is the case. Still thinking of you, and wishing and hoping.

Trazzletoes Bosnia-Herzegovina Thu 07-Mar-13 14:40:02

To be honest, we don't really need phone numbers.

Tea either DH or I are always here so we are meant to ask questions on behalf of each other except when I forget to

With last night, I understand from DH that it was all run past one of the Consultants first anyway. But a specialist radiologist took a look this morning and came to a different conclusion so I guess it's just one of those things. Plus I was building it up in my mind. DH was not overly concerned. He's much better at all this than I am.

ToffeeWhirl Thu 07-Mar-13 15:49:21

Phew, am so glad to hear it's not the lung infection you were worrying about. You must be exhausted with worry. I hope you get better news today. And I hope Joe is feeling less rough, poor boy.

siblingforbetsy Thu 07-Mar-13 16:05:38

I'm glad it's not the lung infection and long may it stay that way......

Yep - I'm on the estuary ;)

What a roller coaster! I hope they find the cause of the infection soon and Joe's fighting body can get back on the making of neutrophils.

Ahhhh. We have that too - DH and I. He makes me laugh when he's in the situation of being in charge of questions because he's always thinks through his checklist of tea questions. He looks very proud when he has the answer to one but inevitably misses the one about how someone feels and why are they doing it. He has looked quite crushed on occasions. I always miss the "what's happening next?" type questions.

Splodging again smile

Deurking to say that I am still holding you all in the light.

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 Bosnia-Herzegovina 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 Bosnia-Herzegovina 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 Bosnia-Herzegovina 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 Bosnia-Herzegovina 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

barefootcook Sat 09-Mar-13 06:54:13

Hi Trazzle
Hope Joe is feeling a bit better and his liver starts working properly. Also that your sister arrives safely and you can enjoy some time together. Will pray for some really positive news for Team Trazzle tomorrow at church.

Badvoc Sat 09-Mar-13 07:07:55

Still thinking of you all trazzles.
Glad your sister is -finally - here!
Xxxx

Hassled Sat 09-Mar-13 18:56:38

Hope today's been OK and those neutrophil whatsits are up, up, up. Glad you'll have your sister with you.

dikkertjedap Sat 09-Mar-13 19:20:35

Glad you have your sister with you.

Have been thinking a lot about Joe today. I so so much hope that his liver is starting to recover and doctors have been able to reduce the fluid pressure build up.

x

Trazzletoes Bosnia-Herzegovina Sat 09-Mar-13 19:23:09

Neutrophils are well up today (0.7!!!!!!!) - bearing in mind they were solidly around 0.2 on Monday and not shifting, and at 0.8 his body can fight an infection by itself...

He's been allowed some tiny sips of water and has had a feed running extremely slowly in to his tummy as well - yesterday this all seemed like ages away!

His liver has only improved a tiny bit, if anything, but he has been talking more today and needed less pain relief. It's way way too early to declare that this is him starting to finally get better but I have to admit to crying when he had his water - he was just so happy to be allowed something to drink. Hoping for another few stable days at this level.

<does water sipping, neutrophil raising, happy dance> what a brilliant update, go Joe! grin

kohl Sat 09-Mar-13 19:26:56

So so pleased to read the latest. Fingers, gingers everything crossed for more days like this. X

FoodieToo Sat 09-Mar-13 19:31:35

Wonderful news x. Made my Saturday!

Badvoc Sat 09-Mar-13 19:37:32

Oh trazzles!
smile
I am ill today and in bed -only flu - but that has made my day.
Sending love x

minmooch Sat 09-Mar-13 19:38:36

Yay! Wonderful news! Xxx

dikkertjedap Sat 09-Mar-13 19:40:03

What a lovely news. smile How wonderful that Joe could have a few sips of water. smile smile smile

All gingers crossed for further improvement in his neutrophils tomorrow.

Hoping for a good night for all the Trazzles.

x

PseudoBadger Sat 09-Mar-13 19:44:30

Hooray! I have tears in my eyes thinking of him being so happy to drink xx

5madthings Sat 09-Mar-13 19:44:44

Yay lovely news, go Joe!

tholeon Sat 09-Mar-13 19:46:41

Lovely!! Xxx

Oh. I seem to have a little speck of dust in my eye.

<runs on spot with Gin in her hand>

Hassled Sat 09-Mar-13 19:49:27

Yay yay yay grin

pepperrabbit Sat 09-Mar-13 19:54:58

smile

JKSLtd Sat 09-Mar-13 19:59:13

Delurking to say hi & yey for today's progress smile

Also on the Estuary <innit> sending 'even more progress' vibes smile

CharlieBoo Sat 09-Mar-13 20:11:36

Yay!! Such Positive news!! Thoughts and prayers with you as always. X

smile
Lit a candle for him in Salisbury Cathedral.

Kalypso Sat 09-Mar-13 21:10:29

Sorry I've been away a few days. So, so pleased that Joe has had a better day. Bless him, it must have felt wonderful to have some sips of water. Go Joe!

narmada Sat 09-Mar-13 22:29:16

grin.

Go, Joe.

dinkydoos Sat 09-Mar-13 22:38:50

How fabulous to hear that news! So pleased for you all!

saffronwblue Sat 09-Mar-13 22:55:10

Great update. All positive thoughts with Joe.

ninja Sat 09-Mar-13 23:12:33

That's great to hear that you've had a better day, you deserve it. Bless him for being happy at having a sip of water.

Gingers crossed for another good day tomorrow x

barefootcook Sat 09-Mar-13 23:32:05

Yeah- excellent news over all. You all deserve a break. Hope little Joe has a good weekend.

upjacobscreekwithoutapaddle Sat 09-Mar-13 23:38:01

Whoop whoop. Xx

Lovely news.

Toastismyfriend Sun 10-Mar-13 00:26:48

What a good day...may there be many more.Keeping you all in my thoughts and prayers xxx

tangledupinpoo Sun 10-Mar-13 00:48:07

Great news. So pleased. Go on little Joe! x

blizy Sun 10-Mar-13 01:48:06

Fantastic news!

Thumbwitch Sun 10-Mar-13 04:44:40

Oh that is great news! May the neutrophils keep on increasing and do their job, and the enormous restorative power of the liver kick in soon xx

BarmeeMarmee Sun 10-Mar-13 09:23:57

Oh Trazzle that's fabulous news! Really hope today brings more of the same and you get to have a good Mother's Day with you're lovely children

LillethTheCat Sun 10-Mar-13 09:37:20

Yey, that is brilliant news. Hope he continues to get stronger and better for you.

Brilliant! I too have dust in my eye. I could see fro. The comments that you'd posted good news and clicked on the thread so fast I fumbled and ended up in adult fiction smile

Obviously he is still recovering but desperately praying that the predictions of those days a week or so ago being the worst are accurate and every day is simply better than the last from now on

dikkertjedap Sun 10-Mar-13 09:52:41

Hoping for a good day today.

GO JOE GO smile

x

superfluouscurves Sun 10-Mar-13 09:58:00

Great that things are looking more positive Trazzles Thinking of you x

onedev Sun 10-Mar-13 10:19:49

So pleased to hear positive news. Long may it continue.

Asheth Sun 10-Mar-13 16:53:46

Fantastic news! Fingers crossed that his improvement has continued today. xxx

Great news. Hoping it's up only from now on xx

IwishIwasmoreorganised Sun 10-Mar-13 19:06:44

Great! Neutrophils on the up, pain seemingly better controlled and starting to have sips of water - all good stuff.

Hope the steps in the right direction continue.

Xx

bobkate Sun 10-Mar-13 21:26:05

Way to go those neutrophils! Lovely Sunday evening news smile xx

upto11 Sun 10-Mar-13 21:29:55

Fantastic news! Long may it continue.

VenetiaLanyon Sun 10-Mar-13 22:28:18

So pleased to get such positive news; hurrah for Joe!

thewhistler Sun 10-Mar-13 22:33:25

How did today go? Hope as brilliantly as yesterday, onwards and upwards.

Missymoomum Mon 11-Mar-13 01:22:36

Great news! Hope he goes from strength to strength.

hellohellohihi Mon 11-Mar-13 12:50:13

I was thinking of you yesterday trazzle - you sound like an amazing mummy. I hope joe is doing ok.

toomuch2young Mon 11-Mar-13 13:53:28

So pleased to hear increase in neutrophils!! Long may they remain.
Hope you had as good as Mother's Day as you could yesterday - you certainly deserve to!
Go Joe, fingers crossed poorly swollen tum feels better soon.

JUst popping back in to wish you well and see that things have taken a good turn.
Let's hope it keeps on that path now.

X

onedev Mon 11-Mar-13 23:47:37

I hope today has been a good day.

Just letting you know Joe and the Trazzles are still in my thoughts.

BarmeeMarmee Tue 12-Mar-13 10:30:39

Thinking of you all and hoping that all is going well.

seeker Tue 12-Mar-13 12:42:08

Hoping that things are continuing to go well.

dikkertjedap Tue 12-Mar-13 13:07:08

Hoping it is still onwards and upwards for Joe.

Thinking of you all.

x

Toastismyfriend Tue 12-Mar-13 13:29:23

Checking in and keeping my fingers crossed. x

narmada Tue 12-Mar-13 17:29:43

Me too. Hope all going ok.

LillethTheCat Tue 12-Mar-13 17:54:23

Just checking in. Hope all is well (or at least as well as it can be)

Kalypso Tue 12-Mar-13 18:26:43

Also have my fingers crossed for Joe's continuing improvement. Thinking of you xx

kohl Tue 12-Mar-13 18:30:23

Thinking of all of you.

Labootin Tue 12-Mar-13 18:30:29

Fab x

bobkate Tue 12-Mar-13 20:38:45

Thinking of you all and hope all is ok x

Trazzletoes Bosnia-Herzegovina Tue 12-Mar-13 21:41:54

Hi, apologies for being away. I avoided MN as much as possible on Sunday and then Joseph has moved wards (just for cleaning) and the Internet signal thing isn't great there.

He has been pretty steady really. His neutrophils have got, and remained, high enough for him no longer to need medicine to boost their production. Hooray!

This also means that his thumb infection is looking better although he has had an x ray to rule out any problems in the bone.

He is still having his sips of water and is having a slow feed through his NG tube. It had increased to 6ml an hour today but he wasn't absorbing it so they've knocked it back to 2ml which is how it started on Saturday. A bit disappointing but not the end of the world.

And <fanfare> last night heralded his first dirty nappy in 3 weeks!!!

His liver is still problematic. I think today he may have had more fluid out than in, which is what we want, but I'm not certain. And he is still a very long way from sorted out but he seems to be on the right track now.

Interestingly, he has skin peeling off various parts of his body but its problematic on the roof of his mouth because its bleeding (due to low platelets) and then scabbing over so his mouth is a total mess. Yesterday a nice chunk came out. I nearly threw up! Not my finest moment!

Yay! To poo

Toastismyfriend Tue 12-Mar-13 21:55:20

I have had many a moment with my kids when i felt queasy due to some injury/illness.(the barbie earring hooked up the nose, the throwing up of a small snail..don't ask!,)..and i'm supposed to be in a job where you don't get squeamish. Lots more good news now..who would have thought a dirty nappy could be so exciting. Onwards and upwards Trazzles, thinking of you every day x

Just checking in and thinking of you

ajandjjmum Tue 12-Mar-13 22:00:48

Bless him - and you! Glad things are looking up. If it's any consolation DS has had mountains of oral surgery, and it does tend to heal more quickly than other areas. Fingers crossed this is the case for Joe, although I realise his little body has lots more to contend with.

Hope things carry on improving.

narmada Tue 12-Mar-13 22:29:59

Well, brilliant news about poo. That must have been fab to see grin.

dikkertjedap Tue 12-Mar-13 22:38:28

So glad to see your update.

It may still be a long way to go, but he is going onwards and upwards, that is the key. He is doing so well and has come from so far.

Hope he is feeling a little better in himself as well, as it may be hard with his mouth??? Has he resigned himself to no thumb sucking at all or given the other one a go or is the whole sucking impossible given the state of his mouth?

Also very much hope that he has excellent pain control with minimum side effects.

All gingers crossed for his liver starting to recover.

x

Trazzletoes Bosnia-Herzegovina Tue 12-Mar-13 22:49:14

narmada it really wasn't! Happy that it happened, not so happy that it happened on my watch...

He is no longer a thumb sucker. His other thumb isn't right, his normal thumb still hurts too much ( and is too gross) and his mouth is too gunky. He states that he is never going to suck his thumb again sad

dikkertjedap Tue 12-Mar-13 22:56:47

Joe is a brave and clever boy - for most children it is hard to stop sucking their thumb and he has done it in the hardest of the hardest way. But he managed.

I hope the staff reward him with lots of stickers or reward certificates (if he likes those type of things), my dd has got a scrap book full of hospital stickers and bravery awards and even showed it once at school - including the not very brilliant menu on the children's ward ... She does not seem to have any bad memories about it (that is just me and my DH).

ninja Tue 12-Mar-13 23:06:41

All sounding so positive, great that he can start to heal himself.

Gingers crossed that the improvements continue x

onedev Wed 13-Mar-13 00:38:46

Poor wee love - he really is doing so well though! Well done to Joe & all the Trazzles!

Another day done - onwards & upwards.

barefootcook Wed 13-Mar-13 06:21:18

Things sound a lot better Trazzle. Good for you and little Joe. Hope it continues.

blizy Wed 13-Mar-13 07:10:48

Great news trazzles! Joe is such a little trooper, it must have been so hard for him to stop thumb sucking. I hope this is him getting better. X

minmooch Wed 13-Mar-13 07:21:04

Oh yay for a poo! I remember being obsessed by DS and when/if he had pooed - still keep an eye on it even now! It's such a good sign. I remember punching the air in the hallway when I handed over DS first poo after surgery (would have bedn about 3 weeks too).

Glad Joe's neutrophils are staying high enough - such a relief to see that.

Much love to you all.

Kalypso Wed 13-Mar-13 09:51:27

Great news, so glad to hear this. Well done Joe, keep going!

N0tinmylife Wed 13-Mar-13 10:58:12

So glad to hear things are starting to move in the right direction! Long may it continue!

Asheth Wed 13-Mar-13 11:15:11

So pleased to hear your latest updates! Everything crossed and splodged that things keep getting better! xxx

toomuch2young Wed 13-Mar-13 21:56:35

Fantastic to have another positive update!
Oh my heart just breaks for him though reading how brave he is giving up the thumb sucking. The offer is still there and remains - of is anything at all that would brighten up a day please let me know I'd love to send something.
Keep going Trazzle family you are all doing amazing.

Trazzletoes Bosnia-Herzegovina Wed 13-Mar-13 22:45:10

Oh bless you toomuch that's very sweet of you, but he just is not in the slightest bit interested in anything right now. He wanted his playmobil yesterday and as soon as I got it out, he didn't feel up to it sad but at least the original thought was there.

Another steady day today - both liver numbers are now heading in the right direction. Hooray! wine

Neutrophils are way down again but that is expected. <sigh>

Another poo overnight! Yay! And many wees today mean for the first time in a long time his fluid outgoing was a lot more than what has gone in <cheers>. He is a little trooper, that's for sure. That also meant that his weight was half a kilo (HALF A KILO!) down on last night. It's still 2.5kg too much but baby steps...

Of course we can't have so much good news without a spanner in the works... The Drs have seen evidence of glandular fever in his blood. It wasn't there when he was first diagnosed so it looks like it is a new infection. This isn't terrible news - it's not particularly dangerous - just one MORE thing to slow his recovery and leave him shattered on top of all the other drugs.

thewhistler Wed 13-Mar-13 22:50:00

Trazzle, much of this is such good news.

Sorry the liver isn't yet sorted and his poor poor mouth, but compared to where you were a fortnight ago, the neutrophils, sips, poo is amazing

Holding our thumbs for you as he can't hold his.

thewhistler Wed 13-Mar-13 22:50:38

Is? Are...too late after a long day.

saffronwblue Wed 13-Mar-13 22:52:35

Lots of good news. Very bad luck with the glandular fever but it is small in the big picture. Onward and upward!x

PseudoBadger Wed 13-Mar-13 23:17:42

Still here, happy to read better news xx

onedev Thu 14-Mar-13 00:01:54

Happy to hear what's mostly good news. He really is a trooper, as are you all. Another day done.

Gosh <channels inner Jedi Master> The force is strong with this boy. And wow at the bodily functions grin.

<wags finger at Neutrophils> Time for them to buck up their ideas.

What a shame about the glandular fever. I hope that, if it does emerge, that it isn't a strong bout and that it doesn't cause the Trazzles too much upset.

I love playmobil - it was my favourite toy as a child, my sister and I spent hours playing with it until we were teenagers and I'm particularly enjoying the animals set this time around. My DS spends hours playing with the horses and rabbits, taking them to the vets, having adventures in space and, er, killing them. I just organise them so they are with the right bits and it makes me feel strangely calm. I hope Joe feels up to the next step soon.

narmada Thu 14-Mar-13 11:16:14

Hope the GF doesn't amount to anything. Poor little chap. Rest of it is brilliant news. Onwards and upwards.

I see there is Penguin Playmobile. I should love to send him a set.

Thumbwitch Thu 14-Mar-13 11:49:52

Buggeration to the GF. Although if it's just reactive lymphocytes, it might not actually be GF, just traumatised lymphocytes, see en.wikipedia.org/wiki/Reactive_lymphocyte

Hurrah for fluid output! Definitely a positive; and although the reason he's given up sucking his thumb is a bit shit, I'd take that as a positive too - I still can't get DS1 (5) to stop sucking his.

FoodieToo Thu 14-Mar-13 12:08:50

Great news. Much more positives than negatives so yahoo!!

Trazzletoes Bosnia-Herzegovina Thu 14-Mar-13 12:55:52

His neutrophils are so low today that if they (as expected) don't start to recover for a couple of days, he will have to go back on the medicine to boost them.

narmada Thu 14-Mar-13 13:00:34

Sorry to hear that Trazz. Could the neutrophils have gone down in response to the glandular fever?

Hope there are no side effects with the boosting meds?

dikkertjedap Thu 14-Mar-13 13:43:28

Oh Trazzle so sorry that it is still such a roller coaster for poor Joe.

Great news that there is some improvement in his liver though smile.

So sorry to hear about the neutrophils, really really hope that they start picking up.

All gingers crossed that Joe soon starts to feel a bit better in himself and is able to play a little.

Thinking of all the Trazzles, and especially Joe of course,

x

Hoping they pick up too

thewhistler Thu 14-Mar-13 18:55:48

Really Splodging hard to those neutrophils. Sorry about the Gf and NT crosspost earlier.

Get some rest if you can.

tholeon Thu 14-Mar-13 19:30:00

Sending a splodge for more neutrophils, and for some rest for you all tonight, and wishing there was more I could say or do! X

bobkate Thu 14-Mar-13 21:02:54

Splodging from here too xx thinking of you all x

Badvoc Thu 14-Mar-13 21:07:40

Thinking of you x

Trazzletoes Bosnia-Herzegovina Thu 14-Mar-13 22:57:47

They've upped Joe's fluid intake tonight because he has been good at getting rid of it again today and they have to make sure he doesn't dehydrate.

They were concerned he may have a chest infection too but that thankfully seems to be unfounded.

Drs are pleased that he seems now to have turned the corner. However if his neutrophils don't start picking up, like, yesterday they'll have to do something about it (he doesn't get side effects from the meds). They think the glandular fever is helping to bring his neutrophils down. Damn it.

He managed to get his feet flat on the floor today (first time in a month) for a second.

onedev Thu 14-Mar-13 23:06:08

Well done Joe. It really is a rollercoaster & you're all doing so well holding it together! Fingers crossed for more good news tomorrow.

barefootcook Fri 15-Mar-13 07:18:22

Ah Joe- standing up again- well done you. Things sound a lot better Trazzle- I hope you don't have any more set backs and you can enjoy Easter together.

thewhistler Fri 15-Mar-13 07:29:50

Feet on the floor, wow. And corner turned, dv, insha'allah, gosh.

Splodging to those neutrophils and casting the Gf away.

thewhistler Fri 15-Mar-13 07:33:56

Trazzle,

he seems to have inherited an excellent constitution from you and DH, in that he is fighting so well despite some of these infections. Although everything is day by day and hour by hour now, it bodes well for the future.

5madthings Fri 15-Mar-13 07:55:18

Yay go Joe!! Sending super neutrophil vibes xxx

dikkertjedap Fri 15-Mar-13 09:26:51

Well done Joe for putting your feet on the floor!

All gingers crossed that Joe has turned the corner, onwards and upwards for Joe!

x

Asheth Fri 15-Mar-13 10:18:37

So pleased that it sounds like Joe has turned a corner now! Keeping everything crossed that he continues to progress well. xxx

VenetiaLanyon Fri 15-Mar-13 12:24:03

Good to hear about the progress; hope you have an equally progressive weekend smile

That's wonderful trazzles. May the GF go quickly now and he can get on with building up the neutrophils himself.

tangledupinpoo Fri 15-Mar-13 18:42:14

Good news, Trazzle. Hope his neutrophils start to climb again very soon. Thinking of you all lots. Keep going, Joe! X

pepperrabbit Fri 15-Mar-13 19:10:30

So glad to hear he has turned a corner in this fight.
Willing those neutrophils to rise!

IwishIwasmoreorganised Fri 15-Mar-13 20:09:42

More steps in the right direction, some of them sound like more than little steps too.

Your fight is still on, but Joe is doing fantastically.

Xx

Good to read the update smile

kohl Fri 15-Mar-13 20:17:33

Really lovely news Trazzle. Come on neutrophils!

Trazzletoes Bosnia-Herzegovina Fri 15-Mar-13 20:32:07

Thanks all.

He has had another good day, with some sitting up and playing with a balloon. He's been brighter and has coped reasonably well with his pain.

Drs are very happy with his progress. Neutrophils are even lower (0.33) but one registrar is a bit concerned about this and J's consultant isn't really... All very confusing! We'll see anyway. His antibiotics have stopped so he may now get a temperature - fingers tightly crossed for NO TEMP!!!!!

Badvoc Fri 15-Mar-13 20:36:04

Great news smile
Hoping that he doesn't get a temp!
X

ninja Fri 15-Mar-13 21:46:08

Trazzle, it must be so lovely to see him playing - well done Joe! He's doing amazingly and so are you.

Hoping for a normal temperature and uneventful night!

Blowing frankly rather icy air from Malvern over to you t prevent temperature.
Gingers crossed

onedev Fri 15-Mar-13 22:01:11

More cold air coming your way. Go Joe!

narmada Fri 15-Mar-13 22:17:38

Freezing in surrey borders too. Fever be gone....

ToffeeWhirl Sat 16-Mar-13 01:18:26

Lovely to hear that he's been able to play today smile. I hope the neutrophils are higher tomorrow.

superfluouscurves Sat 16-Mar-13 11:23:09

Trazzles sorry docs giving you mixed messages but must be a great sign that Joe is playing bless him! Onwards and upwards x

Thumbwitch Sat 16-Mar-13 11:32:12

Hurrah for playing and better pain management, and gingers firmly crossed that his temp stays down where it should, and his neutrophils pick up again.
x

dikkertjedap Sat 16-Mar-13 11:48:15

Gingers crossed for no temperature and hurray for playing smile.

Glaikit Sun 17-Mar-13 11:59:42

Balloons make it all better!

Glaikit Sun 17-Mar-13 12:15:35
Kalypso Sun 17-Mar-13 13:11:38

Fingers crossed for no temperature. As mentioned above, it must be a good sign that Joe feels up to playing. Comes on, those neutrophils!

How are you doing, Trazzle? You must be suffering cabin fever. I hope you are managing to get yourself a break now and then (although I know Joe wants his mummy close). I also hope your gallstone pain has settled down?

bobkate Sun 17-Mar-13 13:12:45

Here's hoping there's been more playing today and really hoping that the temp didn't materialise xx

Trazzletoes Bosnia-Herzegovina Sun 17-Mar-13 20:54:44

Hi!

Cabin fever = YES! I get out for maybe in total 1-2 days per week, plus half the nights and 30 mins to an hour per day. I'm fed up of sitting in this chair snacking! I need to exercise. I cannot wait to wake up with my family all under one roof! Still, a new shopping centre opens here on Thursday so that will divert my atte