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Joe vs. The Cancer

(1000 Posts)
TrazzleMISTLEtoes Sat 08-Dec-12 23:26:34

My 3 year old DS, Joseph was diagnosed with the cancer Neuroblastoma in October.

Survival rates are approximately 1 in 3.

He's coming to the end of chemo and so far, chemo is kicking cancer's butt. 3 cheers.

fraktion Sat 08-Dec-12 23:30:00

Splodging in smile

Go Joseph!

sweetkitty Sat 08-Dec-12 23:39:00

Hope chemo kicks cancers butt right out of there forever.

hellhasnofurylikeahungrywoman Sat 08-Dec-12 23:44:34

Go chemo! That is wonderful news.

Wolfiefan Sun 09-Dec-12 00:00:25

Come on Joe and chemo. Kick cancer's butt. Mumsnet has the pom poms out sweetie.
Yaaaaaay!

TheSecondComing Sun 09-Dec-12 00:03:05

Message withdrawn at poster's request.

thewhistler Sun 09-Dec-12 00:04:05

Trazzle, great to see this.

toomuch2young Sun 09-Dec-12 00:07:02

Brilliant update grin. Keep it up little man. Bet he's getting excited for Christmas now!

ChippingInAWinterWonderland Sun 09-Dec-12 00:08:31

Joining the new thread - Go Joe Go!!!

louise2011 Sun 09-Dec-12 00:09:38

Amazing!!!grin Go Joe

QODRestYeMerryGentlemen Sun 09-Dec-12 00:12:17

Yay!

BeaWheesht Sun 09-Dec-12 00:29:44

Go joe!!!

gringringringringringringringringringringrin

Wheredidmyyouthgo Sun 09-Dec-12 00:32:27

Great news! Xxx

blizy Sun 09-Dec-12 00:49:17

Fantastic, Joe is such a brave little fighter!

zippey Sun 09-Dec-12 00:59:26

Hope everything works out well for little Joe, sending you my best wishes!

I've been thinking about you trazzle, glad he's doing so well. X

Ilovemydogandmydoglovesme Sun 09-Dec-12 01:12:55

Go Joe. And have a brilliant Christmas. smile

squishyotter Sun 09-Dec-12 01:18:39

GO JOE! KICK CANCER! I hope he has as an AWESOME Christmas smile

Neena28 Sun 09-Dec-12 01:18:49

Brilliant!!! Well done joe and all the trazzle family!!! Xxx

Sirzy Sun 09-Dec-12 06:15:51

Great news

Bearandcub Sun 09-Dec-12 06:36:04

Fantastic, keep on kicking that cancer out of sight Joe, in the meantime kick it in the balls and bum!

Thank you for sharing your good news Trazzle, good luck.

RatherBeOnThePiste Sun 09-Dec-12 06:51:06

Morning Trazz

Go Joe, Go! Keep kicking its arse!

Well done all of you, big hugs X

Fivemoreminutesmummy Sun 09-Dec-12 07:12:18

Splodging from Manchester, glad to hear the treatment is working. Wishing you a very merry christmas.

Woolfey Sun 09-Dec-12 07:39:28

Fantastic to read Joe is doing so well! Often think about you all x

Yay grin Well done Joe grin

onedev Sun 09-Dec-12 10:39:42

Another cheering Go Joe! Glad he's doing well & has a good appetite & everything crossed for a Christmas at home. smile

IsawFoofyShmoofingSantaClaus Sun 09-Dec-12 10:45:25

Well done Joe! grin

Marking my place to keep up to date with all your news. Still lighting that candle and remembering you all in prayer. smile

<dons team Joe t-shirt and lights a candle>

Splodging in for the trazzles family.

narmada Sun 09-Dec-12 14:24:43

Yay! Go go, Joe.

GlaikitFizzogTheChristmasElf Sun 09-Dec-12 15:10:28

Splodging in here too! smile

Here to listen or offer advice, make you laugh, whatever you need!

tholeon Sun 09-Dec-12 19:11:27

Still thinking of you, go Joe xx

IwishyouaMerryChristmas Sun 09-Dec-12 19:35:02

Splodging in from South Wales.

It's great to hear that joe's treatment is progressing so well.

Xx

WhoKnowsWhereTheMistletoes Sun 09-Dec-12 19:56:12

Splodging in from Hampshire <am now imagining a map covered in Fairy lights all over the world>. Thanks for starting the new thread.

dikkertjedap Sun 09-Dec-12 20:12:30

So happy that Joe has responded so well to chemo so far.

Also good news that you managed to speak to the other mother on the ward and got some reassurance of the nurses.

A pity that he has to be in on X-mas Eve but on the other hand, Joe and his sister are too young to appreciate when it really is X-mas Eve, as far as they are concerned it could be earlier, the exact day or later, they won't know/appreciate as yet. It will simply be the day you tell them it is.

Lots of good wishes.

Alibabaandthe40nappies Sun 09-Dec-12 20:14:15

Trazzles what a brilliant positive thread.

<splodge>

BuffyFairy Sun 09-Dec-12 22:58:51

So sorry I haven't posted for a while. Always splodging though.

Joe is doing marvellously, everything is crossed for a good result from the Xmas eve biopsy. I am so proud of him, he's amazing.

I'm very much looking forward to seeing you tomorrow.

Much love xx

Thumbwitch Mon 10-Dec-12 03:29:20

Splodging in from down under - Joe is doing so well! smile

NorksAreTinselly Mon 10-Dec-12 05:33:32

Good morning trazzle
Just signing in with MsAlvern type love

BarmeeMarmee Mon 10-Dec-12 09:08:10

Splodging in Bucks still. So pleased to hear your positive update Trazzle Haven't posted much due to arrival a month ago of DC2 but so glad you did decide to start and have been lurking constantly, especially during early hours feeds! Thinking of you all often.

TrazzleMISTLEtoes Mon 10-Dec-12 09:10:46

Oh lots and lots of congrats Barmee.

TheWombat Mon 10-Dec-12 09:12:19

Splodging away in deepest Devon, and so glad the treatment is going well smile

VenetiaLanyon Mon 10-Dec-12 09:28:27

Joining new thread and cheering you all on smile

moajab Mon 10-Dec-12 13:34:50

Another one splodging from Devon and cheering Joe on! xxx

FivesGoldNorks Mon 10-Dec-12 13:36:41

Checking in, and as always, hoping cancer is as good a fighter as I am
(i whimper, give up and run away)

runnervt Mon 10-Dec-12 13:39:19

I haven't posted on your threads before but I have followed them. And this is wonderful news! Keep fighting Joe!!

Badvocsanta Mon 10-Dec-12 14:46:02

Come on joe!!
smile

bobkate Mon 10-Dec-12 21:14:57

yay gringringrin
Still splodging for you and Joe, and the rest of team trazzle, so delighted to hear such positive news. xx

TrazzleMISTLEtoes Mon 10-Dec-12 22:37:57

<sits down>

<lowers glasses down nose and peers over the top of them at you all>

<STERNLY>

YOU GUUUUUUUUUUUUUUUUUYS!

Seriously.

SERIOUSLY!

Do you have ANY idea what my living room floor looks like now? No? Well, neither do I because it has disappeared under the massive bounty of stuff delivered via the very kind hands of Buffyfairy (are you home yet sweetie?).

I don't even know where to start.

At all.

But Buffy knows me well. I do like chocolate.

And wine.

And biscuits.

And tea.

I might have had a little something in my eye.

Or both eyes.

I'm saving the wrapped presents until Christmas, but the hamper has been picked through and admired.

DH was very hmm and all, why did you let them do this? I had to explain that I DIDN'T and I told you not to give us a cleaner (which he agreed was the right thing to do) and that we couldn't very well send everything back and that it was lovely lovely lovely of people to want to cheer us up etc etc. I don't think he's too mardy anymore.

Who can be mardy in the face of presents? And port?

Thank you again from the bottom of our hearts. We are so very truly grateful.

Thank you thank you thank you.

Thank you.

Hassled Mon 10-Dec-12 22:40:51

I lurk on your threads without a clue as to what I can say without sounding trite - but you'd be amazed how often you are in this internet stranger's thoughts.

Wonderful that your floor is covered in lovely things smile. Enjoy them, and enjoy the kindness of MN.

NorksAreTinselly Mon 10-Dec-12 22:43:11

Hooray !

We had a secret and you didn't know about it.
Heeeheeeehheeeeeheeeheeee grin

Three hips and a hooray for lovely buffy she marshaled us all and organized the whole thing WITHOUT YOU GUESSING

Heeehehheeeeeheeeeheeeee
Pictures please grin

NorksAreTinselly Mon 10-Dec-12 22:45:32

And stop being Mardy mrtrazzle and guzzle a chocolate smile

That sitting room floor, right in front of you, THAT is what the love of vipers looks like.
Pretty, isn't it? smile

<bundles Trazzle, punches on arm and marks place on thread because it's gone from my list>

OscarPistoriusBitontheside Mon 10-Dec-12 22:57:49

Go Joe Go! Kick cancers arse all the way down the street and kick it to the kerb!

grin

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 22:58:35

Absolutely bloody blinking brilliant!! I am so, so happy for you and your family. Cyber hugs all round!!

I am also sending a cyber hug to the paediactric oncology team at LGI as they treated DS and they are just the best!!!! We are 17 years on and they still feel like family to us. Well we see them once a year grin

And I seem to have something in my eye too...

BuffyFairy Mon 10-Dec-12 23:51:35

It was so lovely to see you today Trazzle. Joe was absolutely brilliant, so much fun and the cheekiest smile ever and I had the best snuggles with your beautiful dd. I hope she's ok.

We got home at 10 but have only just got my magic no sleeping baby girl to bed and thought it too late to text.

Glad you like the hamper and hope you like the presents. I was very worried you'd tell me off grin surely your DH knows that there's no way you'd have let us if you knew.

Massive thanks to the amazing mumsnetters who made helped me. I do have photos and will upload to my profile tomorrow.

TrazzleMISTLEtoes Tue 11-Dec-12 00:34:11

Sadly DD is quite poorly. Won't settle, high temp... Got DS' blood results back this evening and he hasn't got enough white blood cells to fight off an infection. Desperately hoping he doesn't catch anything off her as DB and DN arrive from the US on Thursday for a long weekend.

And really pissed off with people who send their children to nursery or school while still sick. DD has been permanently sick since September and it is really making life fucking hard.

Zhx3 Tue 11-Dec-12 00:42:11

Hi Trazzle,
Just signing in to wish you and Joe all the very best of luck. I'll be willing him on from the sidelines x

BuffyFairy Tue 11-Dec-12 01:06:10

Oh your poor DD, I hope she gets better quickly and fingers crossed Joe doesn't catch anything and gets to meet Santa on Friday.

I feel your pain re childcare illness, my DD has been ill so much since she started at childcare. The last 2 weeks are the first I haven't had to take time off work since I've been back. Have probably jinxed myself there. Of course, I don't have a sick DC to worry about.

Hugs x

toomuch2young Tue 11-Dec-12 06:51:15

Morning splodges trazzlefamily
Hope Dd is feeling better very soon and praying Joe doesn't catch anything and you can all have a lovely weekend with the family.

tholeon Tue 11-Dec-12 06:55:35

Thanks Buffy for sorting hamper! yay!

Really sorry about your dd. There might be less germs in a smaller childcare environment like a childminders? But that would mean uprooting her/ finding somewhere new and I am sure that is the last thing you need x

TrazzleMISTLEtoes Tue 11-Dec-12 07:10:58

Yes, we'd moved Joe to a nursery from a childminder as the location is much more convenient and its cheaper too. Childminder spaces are like gold dust round here and they have to be very close geographically as I have to get a certain train in the morning. Also we thought Joe would benefit from a larger environment at this stage. Bless him, he's quite shy.

First time posting but most definitely not first time thinking of you.

Go Joe you are a superstar!

Wrt childcare illness- my friend is a year 2 teacher & has a child in her class with leukaemia who is currently being phased into school slowly.

All parents are aware of the risks to her if she is exposed to another child's illness but still someone sent their child in with suspected hand foot & mouth & a temperature.

Some people are SO selfish.

Fivemoreminutesmummy Tue 11-Dec-12 07:46:39

Yaah! Glad you like it! Thanks to Buffy for organising. Hope your DD feels better soon.

WhoKnowsWhereTheMistletoes Tue 11-Dec-12 09:11:37

I feel your pain re nursery illness, my DS was permanently sick in his first autumn in nursery. I know it's not much consolation now but it has stood him in good stead later on, this is his 5th year at school and he's only been off sick three times, got to his 3rd year before having a day off.

dikkertjedap Tue 11-Dec-12 09:48:11

Surprise grin - also lots of thanks to Buffy for organising it all! smile

Hope your poor DD gets better soon and fingers crossed that Joe doesn't get it.
Unfortunately, many ill children are sent to school and illness spreads rapidly in a school (nursery) environment, lots of kids in relatively small space using same toys/books etc without things being cleaned often enough, not enough hand washing, usually no handkerchiefs and insufficient boxes of tissues. I have never been ill as often since I started working as a primary school teacher (so all that boosting off the immune system is a bit of a red herring, I am an adult and still get exposed to many new viruses as there are so many).

If a childminder is not an option, would a (temporary) au pair be an option? She would be able to look after both DD and Joe until Joe is strong enough to deal with the flood of bugs in preschool/primary school.

If an au pair is an option, pm me and I can bring you in touch with the families where I get my au pairs from (which are simply brilliant) and it won't cost you anything in agency fees/searching etc. and I can personally vouch for how good they are.

Also, you may want to get Vicks First Defence Hand Foam, it is different from normal hand gel as it puts a small film on your hand and will keep killing bacteria/viruses for up to four hours after application (as long as you don't wash hands in between, after hand washing need to reapply). Maybe an idea to put on dd's hands before she goes to nursery to give her extra protection. Deters putting hands in mouth as it tastes foul.

TrazzleMISTLEtoes Tue 11-Dec-12 23:26:29

Well here we are again. Joel's temperature was threatening all day, despite him throwing himself around like a proper little boy... At tea time he had a temperature of 38 degrees an hour apart so we had to take him to hospital.

We already knew he was unlikely to fight off an infection but they checked his bloods anyway and confirmed it so he is in now until Monday.

To say I'm gutted is an understatement. I knew it was going to happen but still... I really wanted to take Joe to meet Santa on Friday. I've never taken him before and to be honest, I'm scared I'm never going to get that chance now. I wanted to take him with his one and only cousin and now I can't and I'm really really sad.

I'm worried that the ward staff will insist on Joe's isolation so his cousin won't actually be able to be in the same room as him. They have never met and thus could be their only chance. We won't be able to go to the states for years ( wont be able to afford the medical insurance) and I don't know when my DB might come back across.

At least DD seems to be feeling better so I'm hoping to get her back to nursery tomorrow.

DCat had an operation today too. It was the cutest but most heartbreaking thing watching Joe calming her down in her cat basket beforehand and telling her what was going to happen and that it would be alright because she could have a ham sandwich when she woke up. I was fighting back tears.

Christmas just seems so fucking pointless this year.

How's had a good go at decorating our tree though. It looks like Christmas has been sick on it grin

WhoKnowsWhereTheMistletoes Tue 11-Dec-12 23:34:25

Oh Trazzle - that's so sad about Santa. I know it's not the same but have you seen the website Portable North Pole where Santa sends a personalised video message to children? You could get set that up for your DCs, it is pretty impressive.

TrazzleMISTLEtoes Tue 11-Dec-12 23:37:23

Oh yes I have! Good plan! I might be able to take J to the real thing next week but he is going to feel poorly after the chemo so won't enjoy it as much I don't think. We'll see...

I've ordered some letters from Santa via the nspcc as well so hopefully that will bring a smile to his face. He's asked Santa for some films to watch at home and some cars. Here's hoping Santa delivers grin

That's rubbish. I'm so sorry. About the infection, the Santa trip, the meeting of the cousin, your worries about only chance. And how sad you are.

<hugs Trazzle>

It's just shit and no words are adequate.

Impressed you got the tree up despite all of that. And your boy sounds like a complete darling, looking out for the cat.

Could Santa visit him?

BeginningtoffeealotlikeXmas Tue 11-Dec-12 23:49:13

That's a brilliant idea about the Portable North Pole, WhoKnows. Trazzle - I did it for DS2 when he was a bit younger and he loved it.

Am so sorry Joe is back in hospital again and may miss Santa and his cousin. It's so unfair.

Sweet Joe to be so kind to DCat before her operation smile.

Am not getting on here as much as before, but still thinking of you often.

VicarInaTutuDrankSantasSherry Tue 11-Dec-12 23:51:21

trazzle i send you lots of xmas love and best wishes. i hope joe gets well and out of hospital soon so he can see santa.

DS was in hospital over xmas a few years ago now, and santa visited the kids. It was made lovely for them.

im sure he will be out by then, but sending lots of love and special xmas wishes. He sounds like he is doing so well, as are you. best wishes for a lovely xmas.

tholeon Wed 12-Dec-12 06:46:04

Oh sweetie. Yes I was wondering/ hoping whether Santa could visit him in hospital. Virtual hug x

dikkertjedap Wed 12-Dec-12 08:26:14

sad to hear that Joe is back in hospital. It is so hard, especially at this time of the year, with everybody being cheerful etc and with all the worries you face. I really really hope that Joe feels sufficiently better to meet his cousin and doesn't have to be in isolation.

I totally understand that Christmas can feel very pointless, however, I am sure that Joe and his little sister will still love it and it means they have something to look forward to.

<<hugs>>

FivesGoldNorks Wed 12-Dec-12 08:31:28

Oh no! Hope he's out on Monday as planned.

RatherBeOnThePiste Wed 12-Dec-12 08:32:10

Oh big hugs Trazzle, sorry you are back in Xx

narmada Wed 12-Dec-12 09:19:32

Hugs sad xxx

TrazzleMISTLEtoes Wed 12-Dec-12 09:42:26

Sorry about last night's rant. I was feeling really down. Feeling more positive again this morning. J is waiting for a blood transfusion and is on antibiotics. He's absolutely fine in himself which is good.

DD got dressed up like a fairy this morning for her Christmas party. She's feeling better now.

Buffy I hope gorgeous DD doesn't get the germs. Did she even stay awake for the journey home?!

VenetiaLanyon Wed 12-Dec-12 09:55:42

Trazzle, you know that there is absolutely no need ever to apologise for whatever you want to say on here - and I wouldn't even describe that as a rant, in spite of completely rubbish circumstances sad. And even if it were a rant, never forget that we're all here for you no matter what you want to say - let us have your worst grin.

And anyone in your situation who can bounce themselves back after only one evening of feeling low is pretty incredible, tbh.

Glad that DD seems better, and many wellwishings to you all smile.

pinkbraces Wed 12-Dec-12 10:04:07

I dont post very often but always stay updated. Im so glad you feel more positive today, I cant imagine the roller coaster ride you are all on.

Sending lots of positive vibes to all the Trazzles, I hope Joe is out quickly x

TrazzleMISTLEtoes Wed 12-Dec-12 10:42:10

Dr says if his white blood cells recover and he doesn't have an infection we could be able to go home on Friday (and come back Saturday! But still...)

Cross your fingers! (Accidentally wrote cross your gingers there!!!).

NorksAreTinselly Wed 12-Dec-12 10:45:29

i have my gingers crossed for you every day smile
Please dont worry about ranting, this is absolutely the right place to do it

minmooch Wed 12-Dec-12 10:48:45

I'll cross my gingers for you xxxx

Hope Joe's counts pick up enough for you to get home and he gets time with his cousin. Xxx

BarmeeMarmee Wed 12-Dec-12 11:18:25

As a ginger person I shall cross myself for you grin. Glad DD is feeling better today. Hope Joe's transfusion goes ok (had one myself a month ago so know exactly what it's like so will especially be thinking of him and sending even more love your way). Splodging away here...

TrazzleMISTLEtoes Wed 12-Dec-12 11:26:48

Oops forgot to thank the blood donors again! Thank you!

And the tin of Yorkshire tea is labelled up and in the cupboard in the parents room. Kinky if you're reading this, feel free to pop down and help yourself when you are in.

Thank you.

WhoKnowsWhereTheMistletoes Wed 12-Dec-12 11:42:51

I gave blood last week, I was quite nervous as I had felt faint the last two times but it was fine this time (although my arm is black and blue!), it is definitely worth a bit of discomfort when you hear how important it is to those on the receiving end.

gingers crossed in Bath too. And new Winter Candle lit.

Oh. I'm so disappointingly suggestible.

<goes off to get herself a Yorkshire tea and gingerbread>

IwishyouaMerryChristmas Wed 12-Dec-12 16:56:05

Glad they're both doing ok.

I've just made an appointment to give blood on December 21st after having a reminder and reading this thread.

toomuch2young Wed 12-Dec-12 20:33:38

Everything crossed for home visit - gingers and all! Incidentally, I wonder if ginger good for all types of nausea ... Or just morning sickness?!
Enjoy the hamper, wonderful buffy organising it all grin x

onedev Wed 12-Dec-12 21:04:09

I haven't been on in a few days so sorry that things haven't been so good - hoping you get to see Santa. Gingers crossed!

Fingers crossed for home on Friday. I think everyone who's had chemo has had these downs, but he will come back up again xx

BuffyFairyTopsTheTree Thu 13-Dec-12 00:43:06

grin at 'cross your gingers'! Firmly crossed for you.

Infection bugger off so Joseph can meet Santa and his cousin or else.

That told it.

Rant away, that's what Mumsnet is for and you're dealing with so much. You're being incredible.

Your DD made a gorgeous fairy. I do love your tree, Joseph's decorating skills make me smile every time I see it smile

My DD slept for 3.5 hours on the way back, then refused to go to sleep again until 11pm. Ah, don't worry, there's so much going around at the moment she's bound to catch something. She seems fine so far.

Big cheers for Joe. DH had so much fun playing with him he stopped being grumpy and offered to drive all the way back. Result.

Hamper pictures are on my profile. I should have admitted that I'm the world's worst wrapper and the hamper looked a bit worse for wear after 4 days in my boot and DD pulling the bows off.

thanks to the mumsnet splurge gang who helped me pull it off.

BuffyFairyTopsTheTree Thu 13-Dec-12 00:43:59

Splodge...damn iphone

Thumbwitch Thu 13-Dec-12 02:10:40

More ginger fingers crossed here that the infection resolves enough for Joe to get to see both Santa and his cousin and has enough energy to enjoy both smile

TrazzleMISTLEtoes Thu 13-Dec-12 03:14:31

I have a cold. Had to tell the nurse though I look like Rudolph anyway...

She was all hmm ill have to find out what we do about that (its started while I have been sat here). I went straight to bed and she hasn't come to wake me to kick me out... Yet...

Thumbwitch Thu 13-Dec-12 03:22:07

Oh no! Hope it's not a real cold, just a sniffle from being in the hospital air. Have they issued you with a face mask yet?

saffronwblue Thu 13-Dec-12 04:27:44

Found you and still splodging. Everything crossed.

TrazzleMISTLEtoes Thu 13-Dec-12 07:56:18

It is a very real cold sad

WhoKnowsWhereTheMistletoes Thu 13-Dec-12 09:02:01

Oh, poor you Trazzle - there's so much of it about. I've had it this week too. Hope you make a speedy recovery.

dikkertjedap Thu 13-Dec-12 09:26:16

Oh Trazzle when it rains it pours.

I hope your cold clears up soon. Can you get Sinutab/Sudafed or another decongestant. I find it works wonders for emergencies.

Any news whether Joe can go home tomorrow (even if it is for one day)?

Thinking of you all.

BuffyFairyTopsTheTree Thu 13-Dec-12 09:35:19

Poor you Trazzle, that's rubbish.

Get that Potter's echinacea down you, I swear it shortens the length of a cold. Vit C + zinc tablets you put in water 3 x a day until cold is gone. I know it's overdosing but I find it helps.

Hot water, lemon, ginger and a splash of whiskey will unbung your nose.

Have a curry, lots of turmeric.

X

TrazzleMISTLEtoes Thu 13-Dec-12 09:36:07

He has to stay until he has been fever free for 24 hours. Temp was over 39 degrees this morning sigh

TrazzleMISTLEtoes Thu 13-Dec-12 09:37:48

Buff, I left it at home sad <sobs>

sad - hope that it isn't so bad you have to leave him. Get well soon all the Trazzles

x-post. Hope it stays down today.

dikkertjedap Thu 13-Dec-12 09:44:33

Is there a chemist/health shop near the hospital where you can get some stuff for yourself? It is so much harder to look after an ill child when you feel grotty yourself. sad

Very much hope Joe's fever comes down soon, it is hard, there are so many viruses around at this time of the year.

Gingers crossed! grin

TrazzleMISTLEtoes Thu 13-Dec-12 10:24:45

If I go there's no one else to look after him so we've been moved to an isolation room.

Thumbwitch Thu 13-Dec-12 10:50:37

Get everything Buffy said AND some vitamin D - my GP recommended it when DS was going down with another cough (helps with the immune system as well as vit C)

Glad they're not making you leave but I really hope that it goes away very soon. xx

Do you have a friend you can call to pop to the chemist and drop it over?

I'd do it for you if you weren't the other end of the country!

bobkate Thu 13-Dec-12 20:07:37

Wish you better soon x And hope that Joe's temp starts to come down soon too x

strictlycaballine Thu 13-Dec-12 20:09:07

Hope you feel better soon Trazzles and that J's temp comes down speedily xx

onedev Thu 13-Dec-12 20:16:23

What crappy news - hope you start to feel better soon & Joes temp stays down.

PseudoBadger Thu 13-Dec-12 20:22:27

I've found you Trazzle. I'm sorry things are shit right now sad and I really hope that you feel better soon and Joe can meet Santa xx

dikkertjedap Thu 13-Dec-12 20:28:56

I hope somebody has been able to get you some stuff and that it is making you feel a little better.

Hope Joe's temperature has come down.

Thinking of you.

thewhistler Thu 13-Dec-12 21:18:33

Trazzle, so sorry things gave been awful but hope the transfusion does the biz.

Tell the staff about Santa if you don't get there. Something will be managed. They always do.

Sorry to hear joe is back in hospital.

I can't give blood anymore for various reasons including the fact that I've had a transfusion myself but I would if I could..

Thinking of you as always

NorksAreTinselly Thu 13-Dec-12 21:38:34

How are you feeling trazzle?

barefootcook Thu 13-Dec-12 21:53:42

Hi Trazzle

I'm sorry to hear things are not so good regarding a visit to Santa. This link might help a little bit. It takes a minute or two to set up but is worth it. Jo could play it over and over and you could make one for his cousin and little sister too.

http://www.portablenorthpole.com/home

barefootcook Thu 13-Dec-12 21:57:23

Sorry- spelt Joe's name wrong. Sloppy!

BuffyFairyTopsTheTree Fri 14-Dec-12 14:08:30

How's Joe doing today? I hope you can't reply being too busy visiting Santa!

How are you feeling? Did you manage to get some medication? Hope it's a short lived thing x

TrazzleMISTLEtoes Fri 14-Dec-12 21:45:07

Barefoot don't worry he can't spell it either!

We're still in hospital...

DB and DNeph arrived safely yesterday and popped in to say hi. Was absolutely wonderful. Yesterday was also the ward Christmas party. Joe obviously couldn't go, being in isolation, but he got a visit from Father Christmas and a quite hairy fairy grin. He was so excited. It's all he has talked about since. I might have had something in my eye.

I'm still full of cold so quite grumpy but feeling a little better.

Joe didn't have an infection (good news) but his white blood cells have not recovered sufficiently so they wouldn't discharge him.

He gets a poorly tummy from the antibiotics, which happened yesterday, and that always has to be sent off for testing. I was told this morning it was "likely positive" for c. Diff again <sigh> it's being Re-tested and we're waiting for the results. It may come back negative, which would be great. If it comes back positive it may mean another 10 days of antibiotics and mega-diarrhoea for longer than that.

I'm trying to convince the Drs not to treat it as it seems to me that Joe doesn't have the infection - it causes terrible diarrhoea and his nappies are nearly normal (tmi - sorry!) and in my opinion it is counter-productive to keep nuking his gut when there isn't really a problem. I have IBS and I guess I'm worried about the long-term effects though that probably ought to be the least of my worries!

Anyway, the Drs generally know best so I'll wait and see what they come back with.

Saw DD, DB and DN again today. The cousins play together so nicely, it's wonderful. <emotional>.

I'm looking forward to having a couple of hours away from this place tomorrow...

dikkertjedap Fri 14-Dec-12 21:53:43

Lovely that Joe could meet his cousin.

Sorry to hear that he has to stay in isolation. Keep my fingers crossed that he doesn't have C Diff. Antibiotics are brilliant, but yes, they can have nasty side effects.

Very much hope you get rid off your cold soon.

Thinking of you and Joe.

That brought a tear to my eye thinking of joe, Santa & the hairy fairy smile

TrazzleMISTLEtoes Fri 14-Dec-12 22:23:15

Ill try and post a pic sometime next year probably

toomuch2young Fri 14-Dec-12 22:35:01

Another juicy eye here! So glad he got to meet his cousin and Santa what a busy day!
Everything crossed its not c.dif and your both fit to leave hosp and enjoy some more Christmassy things.

Hi Trazzle, I am another stranger who has mostly lurked on and off since you first posted about Joe's illness.

I always struggle knowing what to say, but I wanted you to know that I think about Joe very often and, despite being agnostic, pray, beg and bargain that your precious boy returns to health soon. My splodge is on the Norfolk/Suffolk border. I think you are amazing and wish that you didn't have to go through this.

saffronwblue Fri 14-Dec-12 23:26:56

So lovely for Joe to have cousin and Santa time and for you to have some sibling time. Hope his tummy resolves without full on treatment.

onedev Sat 15-Dec-12 01:06:00

My eyes are watering nicely too! Gingers crossed

Thumbwitch Sat 15-Dec-12 02:56:24

I suppose probiotics would be inappropriate under the circs, would they trazzle? Might be worth asking if you could use them to help his guts, even so - if not therapeutic dose, then maybe live yoghurts?

BarmeeMarmee Sat 15-Dec-12 05:49:43

I seem to have something in my eye... So glad joe got to meet his cousin and see Santa. Splodging away...

TrazzleMISTLEtoes Sat 15-Dec-12 08:39:13

Thumb thanks for the suggestion but he isn't allowed any probiotics or yoghurt at all for, like, the next 2 years!

His immune system just isn't up to keeping them in check.

Good nights sleep from both of us here and chemo starts again later - hopefully the last one of this session.

thewhistler Sat 15-Dec-12 10:18:44

Trazzle, am frankly trying not to weep in Costa,( so embarrassing) as so glad things came together despite all the difficulties. Hope it's not c diff and glad you had a good night. Hope cold is on way out. Delighted Father Christmas had such an effect and love the hairy fairy.

Don't know if Joe likes puppies, but if it would amuse or interest him at any point our very sweet puppy ( very licky) who is about his age in dog years, had the snip yesterday, so tell him that a little puppy had to go to hospital yesterday too, and will on Monday again. I will see if I am able to post a photo (incompetence) but a picture of any white Jack Russell puppy would do. Puppy's name is Rollo. He is Very Naughty.

Thumbwitch Sat 15-Dec-12 11:00:27

Fair enough, Trazzle, I did wonder!

Glad you had a good night's sleep anyway and gingers crossed for it being the last chemo for this round.

Hurrah for seeing Santa and his cousin - that's great. smile

TrazzleMISTLEtoes Sat 15-Dec-12 23:42:59

Awww whistler adorable!

Tests came back as showing c. Diff present in his gut but he's not infected - best we could have hoped for and no antibiotics. He finished his iv antibiotics this morning and straight on with chemo number 8.

Had a lovely afternoon with DB and DN (and DD of course!). DB helped tidy the house (recurring theme!) and then I wrapped lots of pressies for DSis to collect tomorrow.

We are having a Trazzle get- together, the like of which has never been seen before! Plus DM, DB, DSis and I have not all been in a room together for 2 and a half years. Excited doesn't cover it.

IwishyouaMerryChristmas Sat 15-Dec-12 23:46:27

grin. Have a great time.

Xxxx

Hope you had a great day with your family.

I spent yesterday with all mine for my sister's wedding and it was wonderful though I'm a little tired hungover today.

Glad to here not ABs for your boy.

Oooof. Hear not here [tired and emotional emoticon]

thewhistler Sun 16-Dec-12 16:16:14

Good news not actually infected and no ABs.

tholeon Sun 16-Dec-12 16:26:04

Enjoy! So glad he got to see Santa and no antibiotics x

NorksAreTinselly Mon 17-Dec-12 20:28:48

Just checking in with tonight's delivery of ginger fingers and tumble dryer lint smile

onedev Tue 18-Dec-12 00:23:35

Splodging for you all tonight - hope things are progressing well! smile

bobkate Tue 18-Dec-12 00:41:06

grin just checking in and so pleased to read the updates. Still splodging for the trazzle clan x

SingingSands Tue 18-Dec-12 00:58:02

I tend to lurk on your threads, Trazzle, giving silent support. Then I randomly came across a thread you posted on and realised you only live a mile up the road from me!

So I'm coming out to say that I think of you and your family often and every day I hope that Joe continuing to kick butt.

Have a fantastic Christmas, all of you Xx

BuffyFairyTopsTheTree Tue 18-Dec-12 11:43:12

So happy Joe got to meet his cousin and you've had lovely family time.

Love the pic of him meeting FC. That was one hairy fairy! grin

How are you all today?

Four4me Wed 19-Dec-12 14:16:46

Found you <I'm a bit slow face!!!>

Not been on fb much so glad you are having a lovely family time. Enjoy christmas time xxx

Nooneelseisallowedafergus Wed 19-Dec-12 14:20:54

The best news ever. This has made my Christmas. Go joe, you are one strong and brave little man x x

strictlycaballine Wed 19-Dec-12 15:56:04

Great that you are enjoyings such a fab family time. Just what the doctor ordered! Sending lots of love from over the channel xxx

TrazzleMISTLEtoes Wed 19-Dec-12 22:59:25

Quick note to say hi and that we were discharged as planned on Monday. Then I got a night out(!).

In hospital all day Tuesday, as planned, for tests.

First day back at work in a year today - went fine. Been baking all night for cookies for nurses. Bed soon.

Back at hospital all day tomorrow for scan under sedation.

And then another one on Friday.

dikkertjedap Wed 19-Dec-12 23:07:15

You must be so exhausted! So nice that you have been making cookies for the nurses, I am sure that they will be much appreciated.

Hope the scans go okay, does Joe mind them a lot or is he okay about them? Will you get the results straight away?

I hope that you can all be home together for a lovely Christmas and New Year. smile

TrazzleMISTLEtoes Wed 19-Dec-12 23:19:01

No we get the results some time in the new year. It will be either:

Chemo has worked great, lets move on to the next stage, or
Chemo hasn't quite done enough, lets have some more, or
Chemo has already stopped working, the cancer is growing.

I am exhausted and I don't know when I'll get to wrap the presents! People are coming on Saturday and Sunday...

All the tests that are left are under sedation or general anaesthetic so involve fasting, which he doesn't like, obviously! He doesn't much like being made to sleep but he doesn't kick up too much of a fuss really.

dikkertjedap Wed 19-Dec-12 23:29:53

All fingers, gingers, everything crossed, for good results.

Hope all the tests go as smoothly as possible.

Maybe some of the people coming can help wrapping?

Hope you all have a wonderful Christmas break and a well deserved rest.

TrazzleMISTLEtoes Wed 19-Dec-12 23:45:15

Help?! I wish! Half the wrapping is for them!

My 3 best friends here are coming on Saturday. Including my 2 there will be 12 children... It was not my idea. I am not letting them loose on my presents!

Sunday we are entertaining DH's brother, his fiancée and her daughter. Today I realised I had forgotten to order daughter's present. I know she will be stoic if it doesn't arrive in time but I could kick myself. They are taking back gifts for the rest of DH's family.

Joe has another general anaesthetic on Monday of course so I really don't know when I'll get it all done! Ah well, it'll happen somehow.

Hi Trazzle,

Not posted for a while but think of you often. Nice to read the latest updates, love the hairy fairy!!

Glad to hear Joe is doing as well as he is and I hope your Trazzle get together is a great success.

Still splodging from Surrey
xx

onedev Thu 20-Dec-12 00:25:20

Really pleased its going well - fingers / gingers crossed it all goes ok.

NorksAreTinselly Thu 20-Dec-12 06:25:08

trazzle my darling, I say this from a place of love, respect and kindness

WHAT ARE YOU DOING TO YOURSELF?????

You have more than enough to deal with looking after Joe and going back to work.
Now it seems you are baking cookies, hosting enormous gatherings, wrapping presents, having dinner parties.
Is this all a distraction? Is this who you are generally? Are you always a 1000 mile an hour person?

I am slightly worried that you are just trying to do too much and hope it is not because you feel you OUGHT to.

Please remember that this was said with love when you tell me to bugger off ;)

TrazzleMISTLEtoes Thu 20-Dec-12 06:53:01

Bugger off Norks grin

I am lazy as hell. There are no dinner parties. We usually see all of DH's family but have agreed that's too much this year. If we're feeding DBil it's DH that cooks. They expect our house to be messy, but presents need to be exchanged!

As for the kids, well, I suspect my friends invited themselves over thinking it would be easier on us if Joe didn't have to go anywhere... It's not easier. It's really not. But because I live the other side of the city from them all they like to come this way in the holidays for a change. I never host normally because they have to get back for school runs. The mums expect a pigsty also. It's the kids that I'm worried about! Being children, there is always something to comment on... Why is Trazzle's house so messy? Oh, is Trazzle pregnant (this from last year)? I didn't notice because she's always been fat...

They're coming first thing on Saturday so I'm sticking a festive DVD on and force feeding them sausage rolls. The children will tidy up before they leave.

TrazzleMISTLEtoes Thu 20-Dec-12 06:55:25

The cookies were done in half an hour but I really wanted to make something for the nurses.

And my friends did want to meet at a soft play first but he'll will freeze over before ill take Joe to one of them with his shot immune system.

I don't really want you to bugger off Norks! This week is flat out then relax on Christmas Day.

TrazzleMISTLEtoes Thu 20-Dec-12 06:57:14

Why did I say if been baking all night?! It probably felt like it... But genuinely was only half an hour!

NorksAreTinselly Thu 20-Dec-12 07:27:17

OK ...just checking that you really know what you are doing and are not being steamrollered

Will NOT bugger off, thanks, but will just keep a BEADY EYE on you wink

Nooneelseisallowedafergus Thu 20-Dec-12 07:30:59

I will be sending you positive thought and light from Colchester in Essex that joes tests give the best possible results. Have a wonderful Christmas and I hope you have some peaceful time as well as manic!

IwishyouaMerryChristmas Thu 20-Dec-12 19:17:48

Blimey! You sound like Wonder Woman at the moment!

I'm sure the nurses appreciated their biscuits though. How did you find going to work?

Fingers crossed for positive news after all these scans are done.

Bloody hell Trazzle.

If you're lazy then I'm never having another cup of tea again <slurps>

Ahhhh. Other people's children en masse. It's hell on earth! Gin. That's the answer. That and hiding for prolonged periods of time in the bathroom. I tend to turn into a fishwife if we have more than 9 in our house.

Cookies. I'm trying to make a fecking gingerbread house and it is taking me all evening. The fecking recipe said two batches of dough and it's needing fecking three. I'm missing half a roof and I know once I stand it up it's going to fecking collapse. Half an hour? Cookies next time for me!

<stands behind Norks>

Seriously, you really need to relax for more than just one day with everything you have going on. You need to look after yourself.

<wags finger whilst running for the door>

TrazzleMISTLEtoes Thu 20-Dec-12 23:08:11

DH has 2 weeks off work. I will have my fair share of lies-in.

Scan went ok today. Fingers crossed for the results.

2 more Santas(!) visited the ward today. But they weren't the real one. They were just helping Santa out.

ChippingInLovesChristmasLights Fri 21-Dec-12 01:43:31

I don't know why he needs helpers? You are doing more than him without any grin You know, you can say 'No - it's not a convenient time to visit'

I couldn't face all that and I don't have a child in hospital - we'll need to get you a cape and make you wear your knickers over your tights grin

Fingers very firmly crossed!

onedev Fri 21-Dec-12 08:45:42

Agreed that you need knickers over tights!

As always, fingers & toes firmly crossed & hope you enjoy the lie ins!

DeckTheHallsWithBartimaeus Fri 21-Dec-12 09:36:12

Hi Trazzle
I've lurked on your threads about Joe before but wanted to delurk to let you know there's a splodge of light in Paris cheering Joe on.

I have to say that he sounds absolutely delightful and your story has really touched me.

I have a little boy at home who is my world so I can't begin to imagine how you're coping with this.

I hope you all have a wonderful Christmas surrounded by friends and family (sounds like you don't have choice in this! smile) and that Joe keeps fighting his fight.

pinkbraces Fri 21-Dec-12 09:37:12

Not posted for a while but have been checking up to see how Joe is.

I honestly dont know how you are doing all of this, dont forget to try and take some time for you.

I hope you and your family have the most wonderful, amazing christmas and that next year brings you nothing but happiness smile

permaquandry Fri 21-Dec-12 10:06:43

And here I was feeling peed off that dd2 (4) has a temp and rash and missing her school pantomime, hence me missing loads of plans for today plus a mega weekend that will probably have to be cancelled.

I'm now turning into a positive and going to make the most of it.

Trazzle, I don't know you or your family but have stumbled upon your thread. You seem like an amazing woman with a wonderful family. Sending you lots of Christmas wishes and I'm keeping everything crossed (including my gingers) for a wonderful and healthy new year and that the results are what you and all of us are hoping for.

(Hugs) to you, Joe and the rest of the family (including the cat!)

Badvocsanta Fri 21-Dec-12 17:06:42

Still here, still thinking of joe and you and still praying for you all.
Here's to a happy and healthy 2013 xxxx

thewhistler Fri 21-Dec-12 17:12:40

good for you - and hope that all goes well. Ignore children. that is what they are there for. and when they say how untidy it is, you say " i am a HORRID WARNING of what will happen if you do not tidy up when your mother tells you to.." and you pass the sherry to their blushing mothers.

keep as sane as you can and enjoy what you can and hope MOnday goes well.

WhoKnowsWhereTheMistletoes Fri 21-Dec-12 18:42:29

Good luck with the scan results and I hope this weekend goes smoothly. x

dikkertjedap Fri 21-Dec-12 18:57:17

I hope all the Trazzles had a lovely day with friends and family today and that you get some well deserved rest during the rest of the Holiday.

smile

TrazzleMISTLEtoes Fri 21-Dec-12 23:19:42

<whinge alert>

The last few days have been fine. Going back to work was odd but I enjoyed it and am now looking forward to getting stuck in a bit more next week.

Joe's scans have gone without a hitch. He is normally awful when he's hungry (he has anaesthetics or sedation for scans) but has been so good this week. No idea when we will get the results as yet... Early January, I assume.

He got visited by another 2 Santas yesterday and 1 today (who also brought along Peppa Pig and some people from the X Factor to sing some carols!). He now has so many toys and so much chocolate it's a little ridiculous but it has brought such a smile to his face.

Also learned today that Joe does qualify for DLA. That will start to pay in the New Year which will really help.

DH and I have fallen out again. <sigh>. I'm fed up with it. I'm fed up with it all but I refuse to apologise for something I haven't even done. I hate going to sleep on an argument. Really hate it but I always give in and apologise, mostly because it is usually my fault. This time it's not.

And he's just lumped more work on me. If that were even possible. Fed up of it.

DM has been sick for weeks.

Everyone seems to need me (except DH who seems to manage fine on his own) and I feel like I'm slowly being sucked dry until I turn in to a little prune and there's nothing left.

dikkertjedap Sat 22-Dec-12 00:36:00

Nice that Joe has met Santa and help Santas and that he enjoyed getting his toys and chocolate. He looks such a lovely boy. It must be so nice to be able to make him smile.

Also very good news about the DLA and your first day back at work. Maybe your work can provide you with sufficient distraction so you can oddly enough have a bit of a rest (whilst actually having to work) and being with colleagues may be a relief at times as well. I hope that you can make it all work for you and that it does not tire you out even more.

Sorry to hear that your DM is ill. Hope she gets better soon.

As for DH, if at all possible, could you sit down and have a chat about how you both feel? If not possible, would you be able to write it down so he can read it when he is on his own (and maybe less defensive).

You, as a family, are dealing with an awful situation, something none of you could have foreseen, it has been thrown at you and you are dealing it best you can. It seems that at the moment most is resting on your shoulders. I think that this often happens in these situations, in part because ill children often want mummy most and mothers often take the lion share of care on their shoulders. It is very hard to have to deal with this and then on top of that with DH. Very understandable. He may not even realise he is doing this though, he may be under the impression that he is doing a lot (which may very well be the case compared with what he did previously, but still only be a fraction of what you do). Not sure if it would work for you but trying to talk about it one way or another may reduce the risk of bigger problems in future.

Thinking of you.

strictlycaballine Sat 22-Dec-12 18:11:29

Trazzles whinge away. It must be so very hard having everyone depend on you - it's like the old (cliché - sorry) of the bank account - you are paying out to everyone and yet it's not being replenished. The fall-out is bound to hit you and dh (not that it helps to say so). The whole situation is so unfair.

Are there any organisations out there that offer practial support to spread the load a bit? (When my late father had cancer, the Macmillan nurses were good in that they offered information etc but we really needed someone just to be there/cook dinner/go to the post office/change sheets etc.)

Thinking of you.

LemonEmmaP Sat 22-Dec-12 18:22:28

Thinking of you and Joe here, hope things look a little better today.

TrazzleMISTLEtoes Sun 23-Dec-12 09:47:00

dikkert I think DH would conversely say everything is resting on his shoulders. We just see things in different ways. It's odd because in some ways I know he wouldn't leave me/us but at the same time I do worry.

We've been through worse than this together and come out the other side as strong as ever, but you never know what could be the final straw.

He is, generally, a wonderful DH.

Joe had a wonderful time with his friends. His face lit up when he saw them. Although he is much quieter than them even normally, it was a little sad for me to see them all so rough and tumbly and Joe just standing to one side. He's not used to the noise and excitement anymore.

We had a DVD on and one of my friends must have told them to sit down and be quiet because I went in with some drinks and Joe was sitting down with his arms and legs crossed. He whispered "Mummy, I'm sitting very still and very quiet so that I can have some party food". Bless him.

And when he got out of the bath last night he turned around and said "Mummy, all I want for Christmas is you." I cried buckets. Not least because all I want for Christmas is him. He has been so bright these last few days, I'm hoping it continues for Christmas.

The only downside to the weekend is that we have 2 freezers - one in the fridge freezer and another small one we keep in our hall(!) as we freeze a lot of our food. I went to put something in the hall one last night to discover a whole heap of water and a freezer full of defrosted food. Much of it food that people have cooked to help us out. We'll manage but I'm gutted for the time and effort people have put in and it's now all going in the bin.

Grrrrrrrrr.

onedev Sun 23-Dec-12 12:09:18

Trazzle your post just brought a tear to my eye - I hope you & Joe have your Christmas wishes filled for a very long time to come.

Sorry things are stressful with your DH - I can't imagine how hard it is for both of you & I've no advice unfortunately but keeping fingers crossed that it gets better soon.

Thinking of you all & wishing you the very best.

ChippingInLovesChristmasLights Sun 23-Dec-12 12:42:31

I'm glad the various Santas have brought a smile to Joe's face grin Other than it might be bad in his condition (not sure as I wasn't aware of the yogurt thing until you posted it?!) too much chocolate at christmas time is a good thing grin

I can't believe you are back at work - you really are a superstar/glutton for punishment/nutter - can't quite decide, you choose grin In many ways though, I do think it will be good to 'keep your hand in' and very probably, like the rest of us, you need the money sad

It's a shame that you and DH are falling out - it happens a lot when a child gets seriously ill sad I agree with the others that have said you need to talk or if you really can't right now, write him a letter - pour your heart out, tell him everything.

You said We've been through worse than this together and come out the other side as strong as ever, but you never know what could be the final straw I don't want to imagine what you could have been through that is worse than what you are going through now sad Talk to him x

Is someone looking after your Mum? Is she looking after herself properly?

Big Hugs
x

dikkertjedap Sun 23-Dec-12 22:32:10

Lovely to hear that Joe has had a nice time with all the kids. He looks such a lovely boy. smile Not all boys are boisterous, he may just naturally be more quiet, but he is maybe quite tired as well. You have all had a rough few months.

I hope you can all have a lovely time together, enjoying each other's company. I hope that you and your DH can find an opportunity to talk things through, although I fully appreciate how hard those things are.

Sorry to hear about your freezer, such bad timing (not that there is ever any good timing for things like that). sad

Thinking of you.

Honu Mon 24-Dec-12 10:37:31

Hi Trazzle, not posted much but following you and admiring your strength under incredible pressure. Just two things I wanted to say ....

Look after yourself. Like the oxygen masks on the plane, you have to look after yourself first to be able to care for others.

I think it's an excellent idea, as others have said, to write down your problems to give to DH for him to read when you're not there. But, in this, ask him to write down how he feels and let him have his say. He must be as stressed as you are and needs his voice too.

{{{Hugs}}} to all of you.

moajab Mon 24-Dec-12 23:21:15

Trazzle just wanted to say I hope that you, Joe and all your family have a lovely Christmas!

BuffyFairyTopsTheTree Tue 25-Dec-12 00:03:02

Oh Trazzle it really is one thing after another. Such a shame about the freezer.

What on earth were you doing writing Xmas cards. Lovely to receive one but you really are super Trazzle. I haven't managed them this year and I don't have much excuse.

I'm glad Joe enjoyed some time with his friends. He has such a lovely spirit and was an absolute darling with dd.

How are things with your DH now? Is there any counselling available? People always hit out at those closest to them when they're stressed and this has to be one of the most stressful situations any couple could go through. I hope you're ok.

Are you home for Xmas? Wishing you and your family a wonderful day.

Splodging in Hereford xx

TrazzleMISTLEtoes Tue 25-Dec-12 00:06:30

Thank you.

Well, we made it home late afternoon. All together. Joe and DD are all snuggled in their beds. Santa has been!

We get the test results officially on Friday but one of the Drs was too excited to keep them from us today grin. One of the scans shows that there is only "a tiny bit" of active cancer left at the moment. And they can deal with that. They are happy so we are too!

Yay!

And I'm watching my favourite Inbetweeners episode.

Merry Christmas everyone!

thewhistler Tue 25-Dec-12 00:11:53

Trazzle,

Merry Christmas to you and Joe and the rest of the Trazzles. Great news, and so glad you got home.

Have a lovely time, all together. Enjoy Dds first Christmas.

WhoKnowsWhereTheMistletoes Tue 25-Dec-12 00:30:29

Fantastic news Trazzle, hope you all have a lovely day tomorrow.

Trazzle - I've been watching your threads from the start and am so impressed with your positive energy.

I just wanted to wish you all a Happy Christmas and I'm so glad the news continues to look good.

A splodge from near Manchester x

hackneyzoo Tue 25-Dec-12 00:34:42

That's brilliant news! Happy Christmas Trazzle family x

minmooch Tue 25-Dec-12 07:39:30

Great news Trazzle! So glad you are at home.

I hope that your DH pulls his socks up and starts pulling his weight - as if you have not got enough to do.

Happy Christmas xx

BuffyFairyTopsTheTree Tue 25-Dec-12 08:26:44

I have something in my eye...

Brilliant, brilliant news! That has made my Christmas grin

X

GlaikitFizzogTheChristmasElf Tue 25-Dec-12 09:58:34

merry Christmas trazzles! thinking of you all. much love and splodging from all at casa glaikit

crashdoll Tue 25-Dec-12 10:01:15

Merry Christmas, Trazzle family. Big love x

onedev Tue 25-Dec-12 20:01:38

A very Merry Christmas to you all! So pleased to hear your news! X

barefootcook Wed 26-Dec-12 01:48:29

Hi Trazzle

Great news about the test results and Merry Christmas to you all. Hope you have a lovely relaxing day with your two little ones.

pinkbraces Wed 26-Dec-12 01:54:43

That's brilliant news.
I hope the next year brings nothing but happiness

DalekInAFestiveJumper Wed 26-Dec-12 02:47:56

What spectacular news! And what a lovely doctor to let you know sooner rather than later!

Excellent news Trazzle! Happy Christmas.
Please do try and take care of yourself, things like housework quite frankly at this point should go out the window!
Cannot wait to hear the update xx

HairyPotter Wed 26-Dec-12 04:51:18

Fantastic news Trazzle and what good timing. I'm so glad Joe is home for Christmas. I can't think of anything nicer than a snuggle with both your dcs.

More splodging lights from South Lanarkshire cheering Joe on.

Fairylea Wed 26-Dec-12 05:12:11

I'm a lurker but came out to say what wonderful news.. so pleased for you. smile I really have everything crossed for you and Joe.

Happy Christmas trazzle and your family x

NorksAreTinselly Wed 26-Dec-12 06:35:48

Brilliant Christmas news! Hooray!

Still not risking uncrossing my gingers, but that looks VERY good for the year ahead

What fab news for Christmas grin
Merry Christmas to you all!

TrazzleMISTLEtoes Wed 26-Dec-12 07:52:31

Sorry Buffy, I've only just seen your Christmas Eve post! Hope you, DH and DD had a lovely Christmas.

Not everyone got Christmas cards this year - I've just found a pile without stamps on... Ooops! It passed the time in hospital tbh.

DH and I are fine again. I honestly do not think he would go for counselling. He's too much of a tough northern man (in his head!). We are fine, honestly, I just find it easier to get it all out of my system on here. He's having a lie in today so I'm. Calling shotgun on the afternoon nap grin.

fraktion Wed 26-Dec-12 20:33:01

Hurrah for the news and a very happy (slightly belated) Christnas to all the trazzle household.

ShiftyFades Wed 26-Dec-12 22:36:03

Sorry for my absence trazzle but I want you to know that I think of you and joe (and your DH & DD) every day xx

Merry Christmas to you ! And what a lovely doctor being excited to reveal test results to you early. Brilliant news

I'm only just catching up with your story but am so happy for you re the latest news. Wonderful.

BeginningtoffeealotlikeXmas Thu 27-Dec-12 07:28:32

Been away from MN over Christmas, but it's so wonderful to come back and hear the dr's news grin. That's the best Xmas present you could have had.

tholeon Thu 27-Dec-12 08:52:00

Lovely lovely news re the test results!

I think you and dh are probably doing brilliantly, given the circumstances. Dh and I argue about who is most tired/ stressed etc and we just have young kids, not big fuck off awful bastard horrible cancer threatening one of our babies to deal with...

X

narmada Thu 27-Dec-12 09:13:05

Very merry Christmas to the trazzles. Such great news about the treatment results. You must be very pleased.

strictlycaballine Thu 27-Dec-12 12:37:11

Just dropping in from across the channel to with you and your family a belated Happy Christmas Trazzles

Great to hear such positive news too x

Trazzle so pleased about the test results.

Joe's genetic make up of Tough Northern Man and superTrazzle are serving him well.

Lights aburning for you and yours in Bath.

TrazzleMISTLEtoes Thu 27-Dec-12 22:23:58

Despite all this we are still nervous for the results tomorrow! Thanks so much for all your support.

I know I haven't posted thanks for our Christmas gifts but I'm still waiting for Joe! He had the most enormous pile of presents and is averaging opening about 3 a day so far!!!

He is still being a chirpy, cheeky little guy - every day he is more like himself. I'd forgotten how tiring an energetic 3 year old can be!

He and DH had an impromptu trip to hospital this morning after he pulled out his NG tube in his sleep, and it turns out he needs another blood transfusion tomorrow too.

I have been suffering with terrible mouth ulcers since Christmas Eve and thought I must have been more run down than I realised. Today, I can't speak and the spots appearing in specific places lead me to the conclusion of hand foot and mouth. <sigh> it hurts!!!!!!

thewhistler Thu 27-Dec-12 22:51:10

Trazzle, delighted that Joe is having a nice Christmas. I'm sure tomorrow will go well, although they will give you lots of caveats too.

I imagine you've got the infection in part because you are run down. What do they say about you being near Joe?

Thinking positive vibes to you.

Splodging from the peak district.

narmada Thu 27-Dec-12 22:52:33

No! Hope it buggers off soon. Please take things easy and don't burn yourself out.

Wishing you all the luck in the world for tomorrow.

minmooch Thu 27-Dec-12 23:08:48

Will be thinking of you tomorrow Trazzle xxx

onedev Thu 27-Dec-12 23:46:49

Oh no, hope that goes away!

All the best for tomorrow.

BeginningtoffeealotlikeXmas Fri 28-Dec-12 00:40:53

Good luck tomorrow. So sorry you are ill (hardly surprising considering what you are going through). I hope you get better soon.

TrazzleMISTLEtoes Fri 28-Dec-12 06:47:21

Thanks all. Apparently not a problem to be near Joe. In the long run its a fairly harmless disease for almost everyone.

Apparently there is even no problem with me going to the hospital tomorrow for the results hmm I think I'll stay in the car until DH has made absolutely certain!

Ill let you know the results when I can.

toomuch2young Fri 28-Dec-12 07:08:06

All gingers are crossed for today.
Thinking of you all x

Jokat Fri 28-Dec-12 07:51:15

I'll be thinking of you today (as usually) x

BuffyFairyTopsTheTree Fri 28-Dec-12 17:03:36

Thinking of you today, gingers firmly crossed!

Hand, foot and mouth is awful. Dd had it in Oct for the first time and went on nursing strike for 6 days as it was so painful. I feel for you. She's just had a 2nd bout but very mild this time, it it wasn't for the blisters I'd have thought it just a cold. Hope you're better soon.

We had a lovely Xmas thanks. Dd was spoilt rotten grin

Come on Joe, I want it official that you are kicking cancer's butt!

Splodging away in the homeland x

<crosses gingers>

TrazzleMISTLEtoes Fri 28-Dec-12 20:45:12

Hey, another good day in Trazzleworld. The Drs don't have any additional results, but clarified that the scan still showed the main tumour, which was to be expected, and then a tiny bit of cancer in Joe's left femur. That is all. So all the stuff in his right femur, both humerus', his spine, his skull and behind his eyes is no longer active although we don't know to what extent the tumours are still physically there.

The results from his bone marrow aren't back yet but the results were good last time so hoping they will be good again.

The consultant was very smiley and said that they were very happy so we are happy. He doesn't smile much usually grin.

He made it clear that just because Joe has done well so far has no bearing on the rest of the treatment and it was very ominous to hear him say that "almost all" the children come through the high dose chemo. Almost all is still terrifying. We are still so scared.

So good news and cause for a little celebration as Joe gets over another hurdle, but we are aware of the mountains approaching.

tholeon Fri 28-Dec-12 20:53:41

So glad, I hope you all have many, many more good days together. We will all be with you through the mountains xx

BeginningtoffeealotlikeXmas Fri 28-Dec-12 21:05:23

That is wonderful news, Trazzle smile.

onedev Fri 28-Dec-12 21:16:03

So pleased that the news was good. Here's hoping that continues & the mountains aren't very high. Thinking of you always & wishing you the very best.

NorksAreTinselly Fri 28-Dec-12 21:39:50

All those lights all over the world shining out for Joe.
All those crossed gingers.
All that love coming your way.

I am delighted for you all smile

TrazzleMISTLEtoes Fri 28-Dec-12 22:00:18

Oh Buffy, there's an AIBU thread about the, er, other Buffy grin

GO Joe! Good news smile

Hope you re feeling a bit better trazzle.

You are all an inspiration

TrazzleMISTLEtoes Fri 28-Dec-12 22:57:49

Feeling a bit better ta. Hospital required me to go to my GP today for a formal diagnosis (despite looking like a textbook case) and lovely GP has given me an antiseptic mouthwash which takes the edge off.

onedev Fri 28-Dec-12 23:01:12

Glad you're remembering to look after yourself too (even if the hospital made you grin). Really pleased for your good news & hope it continues.

That's good. It's only to be expected that you are run down but really last thing you need is to feel even worse. Life is just unfair sometimes isn't it?..

BuffyFairyTopsTheTree Sat 29-Dec-12 00:45:35

Marvellous news Trazzle. grin Joe is such a strong, courageous boy. Another step closer to beating this bastard disease. Each hurdle at a time.

What do you mean the other Buffy? I am Buffy. True fact. grin

<slinks off to find other thread>

thewhistler Sat 29-Dec-12 00:58:32

Excellent news, as good as you could get.

Now look after yourself as well.

Splodge back in the wilds of London.

toomuch2young Sat 29-Dec-12 09:15:01

Wonderful, every little hurdle is still a mountain worth of good if that makes sense.
Hope you begin to recover soon mouth ulcers are so sore!
Splodges for all the Trazzle family.

TrazzleMISTLEtoes Sun 30-Dec-12 22:51:07

Just a quick update to say J is currently going from strength to strength! I put his jeans on him today and almost couldn't do them up! Absolutely delighted as, if you remember, he lost 2kg in the first couple of weeks and has never regained his weight since then.

I suspect he is currently at or around his original weight again. It's good because we have been told he will be unable to tolerate any food when he has the high dose chemo. He will have to be fed intravenously <boak>. He is going to need all the fat reserves he can get.

He was always a daddy's boy and it has been very odd seeing him morph in to a mummy's boy who often doesn't want anything to do with DH. It's been lovely that, as he has felt more boisterous, he has just wanted Daddy again. Not interested in me at all. I used to get a bit jealous inside - now I'm glad to have a break grin.

He still hasn't opened all his presents , but first thing this morning he watched the Thomas video and then acted it all out with Luke the train on his train set. Thank you.

Love the matching flannels!

And a special thank you to Jack. Joe asked Santa for cars and films. He was very excited to open your present. Although he knows the cars didn't come from Santa, he suspects he may have passed a message on to you.

Thank you all so much for your generosity. I'm still feeling ropey so will leave it there.

onedev Sun 30-Dec-12 22:52:55

So glad to hear your good news. Long may it continue. grin

narmada Sun 30-Dec-12 23:11:41

Me too - well done you all.

Hope you feel better soon, Trazzle.

IwishyouaMerryChristmas Sun 30-Dec-12 23:19:34

Lovely to hear that he's doing so well and setting himself up for the really tough chemo. It'll all help.

Sorry to hear that you've not been well, hope you're beginning to feel better.
Xx

Fantastic news trazzle.

Last new years eve two week old ds was in icu on a ventilator & we weren't sure if he would make it.

Fast forward a year & he is right as rain but today I am praying for all those who are spending tonight by hospital beds praying for their own children to be happy & healthy next new years eve.

So thinking of you & joe & your family & may 2013 bring you joy

crashdoll Mon 31-Dec-12 09:47:31

Lovely news. Wishing you, Joe and the family a happy and healthy 2013 x

RatherBeOnThePiste Mon 31-Dec-12 09:47:43

smile Such good news Trazzle. May he go from strength to strength to strength to strength!

All best wishes and love for 2013

Xx

fraktion Mon 31-Dec-12 11:09:59

That's wonderful news! Go Joe!

Wishing you all the best for 2013.

thewhistler Mon 31-Dec-12 11:38:40

Fab news and how lovely for your DH too.

A good 2013 for you all.

Just passing by to wish you the very best for 2013.

Great to hear Joe's progress. The boy is made of stern stuff.

superfluouscurves Tue 01-Jan-13 21:30:26

Trazzles so good to hear that things are going well - a really positive start to the New Year! xx

dikkertjedap Tue 01-Jan-13 22:35:17

Such good news! smile smile smile

Hope you will feel better soon as well.

Fingers, gingers, everything crossed for the next stage.

saffronwblue Tue 01-Jan-13 22:40:07

So pleased to hear your good news.

hellohellohihi Fri 04-Jan-13 10:11:35

long time lurker here, wishing all the Trazzles a happy and healthy new year x

BuffyFairyTopsTheTree Fri 04-Jan-13 10:59:35

Hey Trazzle, just checking in. Happy New Year to you all.

Splodging back in sw London now.

PollyLogos Fri 04-Jan-13 16:03:53

Another invisible follower here. Trazzle I hope 2013 will continue to see your son doing well with his treatment. I wish you and your family all the very best for this new year.

ShiftyFades Fri 04-Jan-13 16:08:35

Great to hear Joe is doing well, how are you?
Sending you all the luck in the world for 2013 grin

Just checking in and wishing you a happy new year. Glad things are seeming positive

TrazzleMISTLEtoes Fri 04-Jan-13 18:04:57

Hi! We're doing really well, thanks. I've not been on much because there's been no need.

Joe is still full of beans and running around like an idiot. It's hard when we know he is going to be so sick in a few weeks but at least he's having fun now and we can all enjoy him.

He's been in hospital today for a scheduled MRI scan to check on the size of the tumours that are left, and we are in tomorrow for chemo. Should be out again the same day and its a fairly low dose... Just enough to knock him back a bit to encourage stem cell production before the harvest.

He's been playing on the wii today, singing, dancing, enjoying all his Christmas toys. Thank you once again for your generosity. And from DH, DD and I. The shower stuff will come in so handy for the hospital. DH has been meaning to get Game of Thrones to read for ages as well. And I'm looking forward to reading my book too. Ill save it for the hospital I think. Something to take my mind off the treatment. And DD is, of course, delighted with her toys as well.

We watched Tangled the other day and now Joe's stock phrase is:
I love you
( reply: I love you more)
J: no mummy/daddy... I love you MOST.

He's also started announcing that life isn't fair sad not sure where he got that from!!! Probably because I wouldn't let him eat chocolate for breakfast or something!

Other good news is that he was weighed today and is back up to 17kg - the weight he was when this started. He will lose it all again but at least he isn't starting from skin and bone.

IwishIwasmoreorganised Fri 04-Jan-13 19:44:56

Lovely update - Thanks Trazzle.

It's great to hear that Joe is so strong at the moment to continue his treatment. That puts him in a strong position to kick this in the butt.

narmada Fri 04-Jan-13 20:48:02

Great to read your news, Trazzle. Give it what for, Joseph smile

dikkertjedap Fri 04-Jan-13 20:56:23

Lovely to hear that you are all doing so well. I am so happy to hear that Joe is so full of energy and enjoying himself. smile

Brilliant news about his weight as well. smile

Lovely to hear that he's doing what a small person should be doing ... asserting themselves, running around like blue balloon and making you laugh.

Hope tomorrow goes well and willing energy reserves to be built up for the next stage.

Fivemoreminutesmummy Fri 04-Jan-13 21:30:52

Really happy for you all. I have a DS the same age and you capture the energy, spirit and cheekiness of that age perfectly. Good luck for everything to come.

onedev Fri 04-Jan-13 21:53:32

So pleased to hear things are going well. All the best for tomorrow.

thewhistler Sat 05-Jan-13 04:02:17

Trazzle, will think about you on and off today, great he is doing so well.

Splodging from central Asia.

toomuch2young Sat 05-Jan-13 09:30:04

Lovely to hear he's doing so well.
Go Joe! Big splodges and everything crossed for the next round going as well as possible.

tholeon Sat 05-Jan-13 15:55:32

Ah bless him, he sounds a lot like my little boy. Hope the chemo went as well as it could do xx

ShiftyFades Sat 05-Jan-13 19:27:31

Fabulous update, sounds very positive grin
So glad he is back to his fighting weight, he certainly is an amazing little man (I have one of my own just 10m months older than Joe).
Christmas must have been wonderful in the Trazzle house grin

Thanks fOr the update. smile

ToffeeWhirl Sat 05-Jan-13 22:59:08

Hope the chemo went ok today. I'm so glad Joe is doing so well smile.

blizy Sun 06-Jan-13 02:26:32

Fantastic update trazzle! I am do pleased joe is doing well. I hope the chemo goes well.

shallweshop Sun 06-Jan-13 21:42:56

Have been lurking and following Joe's progress. Just wanted to wish you all a very happy and healthy 2013 and hope Joe continues to do well.

drjohnsonscat Sun 06-Jan-13 21:52:37

Good news trazzle. Nice work joe! Let's hope for more good new in 2013.

We love Tangled in our house.

KittieCat Mon 07-Jan-13 11:48:07

Another lurker who has been following Joe's progress. Very glad it's a positive start to 2013, sending a happy new year to you all and a more public splodge than usual from London.

Have you had the results of the MRI? I really hope all good.

(Wot's all this about splodging and gingers btw? I know, I know, it's naff to ask...)

TrazzleMISTLEtoes Thu 10-Jan-13 07:01:46

No extra results yet, Praying, but we haven't seen a Dr since last year <waves Pom-poms>... Joe is going to be in for his stem cell harvest next week so we may get some more info then, but they wouldn't be proceeding with this next stage of treatment if the chemo hasn't worked well enough so we're holding on to that. The scan results we already have are the most important ones, anyway.

Gingers and splodges... Oh, this was never meant to be a clique! A couple of weeks ago I typed cross your gingers instead of cross your fingers...

Splodges... Right... Right at the start of all this people were popping up and saying they were thinking of Joe and praying for him from wherever and in my mind it was like those photos you get of cities at night-time with all the dots of light. They became splodges, really. Not naff for asking at all!

dikkertjedap Thu 10-Jan-13 09:52:52

Fingers crossed for a good stem cell harvest and Joe getting the numbers he needs.

x

bobkate Thu 10-Jan-13 09:54:23

I have been reading the updates on my phone, so happy to hear there's been such a positive reaction to the chemo so far. Will keep everything crossed that he continues to respond to his treatment in the same way. What a clever little boy! Wishing him and all the trazzles a bright, healthy and positive 2013 xx

orangina Thu 10-Jan-13 10:09:00

So glad to hear your good news Trazzle and I hope 2013 brings the best possible results for you all. West London splodges galore (it is 10am, but not looking that bright outside, so am sure splodges visible in the gloom!)

Gingers all crossed for good news next week and little light still shining in Malvern.
Did he ever "wear the fox hat?"

TrazzleMISTLEtoes Thu 10-Jan-13 13:08:13

Yes Norks he did! But he's going through a phase of refusing to let me take photos of him sad. He looks ace in it though grin

Ah, I see, no news is good news, sort of.

Thanks for humouring my nosiness blush. Yes, a splodge from Great Ormond St today (and then a splodge from west London -- waves at orangina).

When people say 'fingers crossed' to me IRL it makes me cringe as it seems so inadequate -- I know they mean well, but still -- so crossing my gingers would turn the cringe into a smile :-)

hahahaha!
I just like the idea of you yelling "Joe, wear the fox hat!"
but then I have a childish and pun-filled sense of humour smile

TrazzleMISTLEtoes Thu 10-Jan-13 14:01:45

Fingers crossed is indeed inadequate, but I think there is still an element of luck involved even with the wonders of modern medicine.

The one thing that really makes want to shake people have a polite word is "well, there's always next year/time" (for Joe to see Santa, or go on holiday etc). I'm like, er, not necessarily, eh? Isn't that the whole point? But I have to keep reminding myself that people are just trying to be nice and may well be walking off, mentally kicking themselves as I often do after I've put my foot in it.

Someone stole the sun in the southwest so splodges are a-splodging early here for Joe.

Still thinking of you Trazzles every evening.

P4Beatrice sorry to see your darling girl is going on a similar journey.

Blimey, "there's always next year" is awful!

I'm collecting a little list of silly things people say when hearing the news. Just for a bit of black humour; most people have been just wonderful and the others just don't know what to say.
1. Hey Ho.
2. Fingers crossed.
3. Oh well.
4. (after a pause, and the other person looked a bit down so I asked what was wrong) "Well, it's nothing like what you're going through, but our pans don't work on our new induction hob"!!!!

BarmeeMarmee Thu 10-Jan-13 20:40:16

Trazzle am loving the lack of doctor since last year grin.

Gingers still firmly crossed and splodging away here still (a slightly bigger splodge since Christmas sadly!!)

onedev Thu 10-Jan-13 21:11:28

I think of you often, so very glad to hear Joe's still doing well.

Gingers crossed & splodging as always from a chilly Solihull.

TrazzleMISTLEtoes Thu 10-Jan-13 22:03:58

Aaaaaah Solihull... I have fond memories of Solihull... grin is there anywhere I don't have fond memories of?! The Birmingham Immigration Tribunal is in the middle of a roundabout and the Judge brought all the legal reps in to the hearing room and then put me on first, in front of everyone. Grrr. Not so fond memories, actually [ grin]

ShiftyFades Thu 10-Jan-13 23:15:48

Evening Trazzle, my gingers are crossed for you (I have 2: DS & DH --who's a reluctant ginger and only has it in his facial hair--)

Sending you massive hugs and more positivity grin

thewhistler Thu 10-Jan-13 23:27:23

Trazzle and P4B, thinking of you both.

P4B, we weren't in such a case, but Gosh was wonderful for us and I was delighted to see Ds's lovely consultant named as one of the top Drs in his field. And Ds had a lovely junior Dr as well on one occasion, who completely failed to recite his 11 1/2 times table ( which we were getting Ds to do to calm him down) and struggled, blushing, with his 11 x. Lots of laughter and sympathy. I hope your experience is as supportive.

orangina Fri 11-Jan-13 20:14:57

And a big splodge for P4B from one bit of West London to the other..... loads of positive vibes for both poorly children....

DawnOfTheDee Fri 11-Jan-13 20:22:43

Big splodge here for you Trazzle. Haven't been on MN for a while but I do think of you and your family often.

orangina Fri 11-Jan-13 20:29:03

(I can't beleive the induction hob comment P4B!!!!! shock)

dikkertjedap Sun 13-Jan-13 21:47:27

Good luck with the stem cell harvest.

I hope he gets the numbers he needs. Do you know what they are aiming at?

Thinking of you

x

TrazzleMISTLEtoes Sun 13-Jan-13 22:04:22

Thanks - I think we're going in tomorrow night for him to have a vascath fitted under GA first thing on Tuesday - it's like the line in his chest only bigger and goes in his neck shock.

They hook him up to the machine after that. Hopefully they will get all the cells they need on Tuesday.

We have been told how many cells they are looking at. It's a number beginning with 6. Maybe 600,000? I honestly can't remember how many '0's there are! <idiot emoticon>.

Is all go here anyway as we are also gearing up for DD's 1st birthday next week... Never a dull moment at Trazzle towers!

TrazzleMISTLEtoes Sun 13-Jan-13 22:09:58

Oh, and I know you're all going to tell me off, but my asthma's been playing up since Thursday and my inhaler isn't making any difference. I don't understand why. I'm hoping it will just resolve itself but I actually don't know whether that's possible.

I don't know where to go for help. I haven't got time to get to the GP at the moment and am not sure if they can even give me anything if I do go... But I am pretty fine, just a bit wheezy and coughing quite a lot. Not really bad enough for a&e... I never get asthma and am really bloody pissed off that its picked this week when I have enough on my plate without my stupid body packing up on me. angry

Trazzle I'll be lighting all the candles we have in Bath this week.

I think the air pollution and cold air is making it difficult for asthmatics at the moment - I had problems last week and have had to start taking my purple inhaler twice a day to get it under control. Do you have a purple inhaler? If not I'd suggest a quick pop into A&E perhaps whilst Joe's under GA if that's possible (apologies if it isn't) - if they have one at the site you're at. The team looking after Joe will be able to communicate to you in A&E if you need to get to them and the A&E team will probably see you quickly if you explain the circumstances. They will have an asthma team on site which can lend you a nebuliser as you aren't taking it offsite (if it is bad enough to need it) or if you just need access to ventolin or seratide they will have it in the pharmacy.

Alternatively you can just walk into a pharmacy as an asthmatic and ask for ventolin - say you're away from home - you have to sign forms and they send a letter to your GP but I've had to do it a couple of times when it's caught me unaware or it's gone out of date from being being crap.

I'd lend you mind if I was nearer.

ChippingInNeedsSleepAndCoffee Sun 13-Jan-13 22:37:24

I don't suppose there's anyone who can help you tomorrow is there?

If not, a walk in clinic when you pass one?!

OR you know, actually give yourself a little priority rating and get your arse to your GPs!!! Naughty girl.

You can't afford to get ill - look after yourself OK x

TrazzleMISTLEtoes Sun 13-Jan-13 22:43:29

Thanks. Tea I have a blue ventolin. I've been taking 2 sprays twice a day since Thursday but its not doing anything at all sad

TrazzleMISTLEtoes Sun 13-Jan-13 22:44:17

2 sprays 4 times a day. I don't even know if I'm overdosing!

toomuch2young Sun 13-Jan-13 23:04:52

I know nothing about asthma but hope you can get it under control. The cold weather won't help I'd imagine?
Hope it all goes well for Joe on tuesday, big Cheshire splodges as always.

dikkertjedap Sun 13-Jan-13 23:29:24

The cold damp weather is a problem for many asthmatics.

Also, if you only recently started using the steroid inhaler again, then you will need to give it up to five days to start building up before you see an effect.

Ventolin should work straight away though. It may be worth checking that all your inhalers are still in date as they may not be so effective if they are past expiry date. \(I have had inhalers out of date, just because I don't always have to use them and it is not always obvious to check them). I believe that you can now buy asthma inhalers online, I will see if I can find a link. Otherwise, can't your GP write a prescription to be collected by your DH, DM or a friend?

If you have a bad cold, it may also help to use Beconase (available over the counter, Boots, Tesco etc.), it reduces the effect of post nasal drip which causes lots of coughing and can make you need to gasp for breath. In case of a cold, Sinutab, Sudafed and the like can also make a difference.

I very very much hope you don't have whooping cough, as it is still doing the rounds. If you have coughing attacks so bad that you need to vomit, you may want to see a GP to get antibiotics to reduce your infectiousness to others. Hopefully this is not necessary.

I hope you feel better soon and Joe's Vascath and stem cell harvest go as well as possible.

Thinking of you.

x

Ahhh. You probably need serotide or becotide to get it under control.

Don't worry about that amount of ventolin. I've asked before whether I'm taking too much ventolin because I'm still struggling - the doctor - in the hospital so specialist in lungs - he said take it up to 4 times at once and to take it when you need it. If you can't get it under control after 4 puffs or need it again after 30 mins then off to the doctors with you to get other types of preventative inhaler prescribed. If I were you I'd go to whatever service they have on site tomorrow or call your GP - mine squeeze me in for things like that. Just make it easy for yourself rather than worry about what you'd do on a normal day.

In the meantime ... rather oddly tea helps. There is something in a good old cup of Yorkshire Tea that widens the airways. I had noticed when I was younger that a cup of tea after running around in the cold air made me feel less tight iykwim. There was a study on it about 8 years which said there was a link. I only remember because I'd noticed!

onedev Sun 13-Jan-13 23:34:24

So much on your plate as always Trazzle sad

You need to give yourself priority & get the asthma sorted - all the best!

dikkertjedap Sun 13-Jan-13 23:36:34

This article mentions that you can buy inhalers at Asda without prescription, however, if it is very bad you may need steroid tablets, eg prednisolone.

TrazzleMISTLEtoes Sun 13-Jan-13 23:43:14

Thanks - my inhaler is in date and is not empty. I don't know why it isn't making me better sad.

The coughing is just a symptom of the asthma. I think I've had whooping cough before - not sure whether you can get it twice though? The cough at the moment is persistent, but definitely not as bad as WC.

dikkertjedap Sun 13-Jan-13 23:44:10

Also, not sure if this is possible but for the stem cell harvest would Joe have access to a dvd player/cd player to keep him occupied? Alternatively, if at all possible (and if allowed) maybe he can watch a dvd/listen to audio stories etc on laptop?

TrazzleMISTLEtoes Sun 13-Jan-13 23:48:42

Ah brilliant. Thanks for the info tea. I'll see where I'm at in the morning - I only say no time for the GP as I don't know when I gave to get DS to the hospital yet (and I hate driving in snow). Ill have to walk to the GP, which isn't ideal with reduced breathing, and it means leaving both DCs with DM which isn't great for her but its looking increasingly likely that I'll have to do that.

I don't have a preventative inhaler because I get asthma so rarely. About once a year at the moment. Which is why I'm so frustrated [ grin] and I don't know what I'm doing! Thanks all for your help.

TrazzleMISTLEtoes Sun 13-Jan-13 23:50:22

Yes dikkert we'll be in an isolation room on the ward so he has a tv and DVD player. I'm taking the iPad in as well. When he's having the procedure he can't get out of bed so I have to keep him entertained somehow!!!

Worth getting one for once a year asthma mind. I only use my purple one every few months but does help - very quickly too - even though they say it takes 5 days.

Bloody pain the ass you need it now though.

dikkertjedap Mon 14-Jan-13 00:03:36

Hopefully dvds, cds, reading a story or two will occupy him during the harvest. Unfortunately, a stem cell harvest can take quite a few hours.

I hope you take some stuff to keep yourself occupied as well. At least I find watching children dvds very boring, not sure about you. I love listening to the Roald Dahl audio stories though but they may still be a bit scary for Joe given his age.

Also hope that there is not too much snow tomorrow so you can easily get to your GP once you know when you need to be in the hospital.

ToffeeWhirl Mon 14-Jan-13 01:25:49

Wishing you and Joe all the best for tomorrow, Trazzle. I hope you get the asthma under control soon. That's really not what you need right now, but it looks as if you've had some good advice above.

barefootcook Mon 14-Jan-13 04:45:05

Hope all goes well on Tuesday and Joe gets the numbers needed. Will be thinking about you down here.

TrazzleMISTLEtoes Mon 14-Jan-13 10:24:28

I've been to the GP (Nurse Practitioner) and they have given me antibiotics. For asthma. Just in case I'm infectious hmm.

I was, like, seriously? Would steroids maybe not be better? Oh, but apparently antibiotics will treat the chest infection that no one thinks I have. And now I have to stay not breathing til freaking Friday!!!

I was assertive. Honestly. sad

IwishIwasmoreorganised Mon 14-Jan-13 10:58:30

This makes me cross - nurse practitioners do have a valuable role to play but it sounds to me like this one has got it wrong.

A similar thing happened to my dad. He tried to see a GP because of shortness of breath and some chest pains that he was getting when he was walking. He got an appointment with the nurse practitioner who tested his lung function which was fine and sent him on his way. I insisted that he went back to see a Dr who referred him immediately to a cardiologist. 12 weeks later he was having a 4 vessel coronary artery bypass - and yes his lung function remained fine throughout obviously as there was nothing wrong with his lungs!

Trazzle, can you speak to Joe's Drs? they may be able to prescribe steroids or a steroid inhaler for you.

I really hope that you can get this sorted, it's the last thing that you need to be dealing with at the moment.

Thinking of you and Joe this week, hope the collection goes well.

Xx

Helyantha Mon 14-Jan-13 11:19:12

Hello Trazzle. Sorry to pile in with more medical info, but your asthma sounds very similar to mine (which only appeared in my 30s). I hardly ever need my ventolin (reliever) inhaler, but at times of stress, it gets worse. DS2 has spent a lot of time on hospital & I generally don't recognise how much stress I'm internalising until I start to wheeze (I'm good at acting calm ;)), usually at night. In the past, I've ended up with chest infections too (stress inhibits your immune response, as I'm sure you know), which of course makes the asthma worse sad The antibiotics are therefore probably a good idea, although the reasoning's a bit odd!
I have a steroid inhaler now, which I use either when I'm symptomatic or when I know something difficult's on the horizon - it works best over a period of time. I very quickly feel better though smile You could certainly ask for help at the hospital - there must be a walk-in clinic on-site.
Thinking of you x

TrazzleMISTLEtoes Mon 14-Jan-13 12:27:14

iwish I know she's got it wrong, and I told her so (which I doubt she appreciated). I've had to speak to the hospital as well as obviously can't go in if I have a contagious disease. They were also quite confused about the antibiotics.

I appreciate the caution about a chest infection but I'm cross that she ignored my current symptoms. There is an a&e at the hospital if I get desperate.

dikkertjedap Mon 14-Jan-13 15:09:31

How annoying for you. Is there a large Asda near you where you would be able to buy the steroid inhaler (depending on strength they can be brown, purple, green etc.)? According to the link I posted yesterday, they will sell it over the counter as long as you pay (something like £7) and fill out a questionnaire.

I think that only a GP/OOH/A&E etc are able to prescribe steroid tablets though.

Hope all is going well for Joe together and the Vascath is not upsetting him (too much).

Oh that's irritating. I'm sorry that after all that hassle you didn't get what you need.

I am snurking at you telling she'd got it wrong through grin

I have been known to do the same when dealing with the Triage Nurse at my GP's - I know she's trained for years and got qualifications but, damn it, I care for 4DS and I know my childhood ailments and I've always taken the step you're asking me to before I come and talk to you. I do not want to do it again blush

Can you book an appointment with the doctor for next week so you can go and talk to the GP to get the prescription in case you need it in future?

Anyways .... Candles alight. Thinking of you, Joe and all the Trazzles

dikkertjedap Mon 14-Jan-13 19:50:07

How is Joe, how did the Vascath operation go? Will he be able to go home after the stem cell harvest or will he start straight away high dose chemo?

I hope you can all be together for your dd's first birthday.

How are you? Is your asthma any better? Have you managed to get a steroid inhaler or oral steroids?

I hope you are both okay (and of course the other Trazzles as well).

Thinking of you.

Trazzletoes Mon 14-Jan-13 19:56:42

Sorry dikkert I don't think I've been explaining myself well! We're in tonight, but it's just for pre-everything really. Vascath is being inserted in the morning and then we're being moved across the corridor to a new (to us) ward - ever so slightly anxious as I am very much at home here with the nurses.

Then he's having the harvest for 1-3 days. He will be an out-patient for that. Then we're home til his operation next week to take out the main tumour and probably his kidney. Then in for 2-6 weeks for recovery. Then home for a couple of days before the high dose chemo <faints with fear>.

Oh Trazzle, there is a lot coming up all isn't there . Thinking of you all though and wishing the handsome Joe all the best xx

<wraps arms around Trazzles and squeezes just a little too hard>

Trazzletoes Mon 14-Jan-13 21:04:39

Thanks smile.

Was just saying to a friend I wish time would stand still. I can cope with today, knowing that Joe is the best he can be. I'm so frightened of the future.

dikkertjedap Mon 14-Jan-13 21:06:03

Oh Trazzle, so much you and Joe (and other Trazzles) still have to go through. And you have already been through so much and Joe has of course done so well.

I am sure you will both get on well with the nurses on the new ward, but totally understand you feel apprehensive and would like some stability.

I very much hope that the harvest goes well and that he can be home to celebrate his sister's birthday. Would they take the Vascath out straight after the harvest?

I am sorry that he will have to stay in for his recovery after surgery and before starting high dose chemo.

The high dose chemo sounds very frightening and the long time in isolation must feel so daunting. It is awful, however, hopefully it kills as many as possible of any remaining cancer cells.

When he is in isolation would you have WiFi, i.e. would it be possible (if he likes it, that is) to set up a rota to send him electronic cards/photos/little messages to cheer him up? If you think it is possible, and if you think he would like it, then I am quite happy to organise it (if preferred any messages/cards can be sent to an intermediary who can automatically forward it to you).

Lots of hugs, I wish we could do something so Joe didn't have to go through all this.

Let's hope that 2013 is the year of some break-throughs in neuroblastoma trials.

Trazzletoes Mon 14-Jan-13 21:35:20

I know. I desperately want to be going through every second of this for him.

The vascath comes out as soon as he's done with the harvest. I think they just pull it out envy - that's nausea!

We should be at home for DD's birthday as its on Monday and the surgery isn't til Wednesday. We're having a family party on Sunday. I'm gutted for her that she's not getting the attention she deserves and that even her 1st birthday is tinged with anxiety over Joe.

I just hate this bastard cancer. I hate what it's doing to my little boy. I hate what it's doing to my family. I hate what it's doing to all our health. I hate what it's doing to my career... The list just goes on. I just bloody hate it.

I know the bone marrow nurses will be lovely - it's just change.

onedev Mon 14-Jan-13 21:40:32

I'm not surprised you hate it Trazzle - it's an absolute fucker.

You're doing so well though & your dd will have a lovely birthday. She's very little & won't know what kind of attention she's getting. I know she's already got an amazing mum (& dad) who will fight for her & her gorgeous brother & is loved very much. That's all they both need, so give yourself a break!

dikkertjedap Mon 14-Jan-13 21:50:02

I just don't know what to say .... sad

Yes, it is horrible and the treatment is horrible. sad

All of us can only hope that Joe beats it.

I so much hope that at least one of the trials (as there are so many at the moment in various parts of the world) results in a breakthrough.

I feel for you, how this disease is impacting on all of you.

If there is anything I can do, to help make it ever so slightly more bearable, just ask/pm.

Lots of hugs and wishing you lots of strength.

sad

I think you're amazing and have a tonne of respect for everything you are doing and managing. This is a tough time for you and your Joe.

And along with dikker, and many others on this thread, if there is anything that you want that makes the next few weeks more bearable for even one second I/we would do what I/we could to help in a heartbeat.

And you're right. Cancer is a bastard.

Hassled Mon 14-Jan-13 22:53:49

I've been reading this and just never what to say that can be of any comfort or use - but you're in my thoughts, a lot. I'm in awe of the strength you have - will keep thinking of you.

Trazzletoes Mon 14-Jan-13 22:56:37

Honestly, I'm not strong. I saw a friend at the weekend who I haven't seen for ages and he said I'm titanium. I wish. I'm a marshmallow.

God, sorry this is so self-indulgent tonight!

Hassled Mon 14-Jan-13 23:04:21

I think all of us who are parents read this and think "how would I cope if it were my DS?". I just don't know - I guess you find the strength you have to have; you don't have much of an option, so you? But to show the dignity and humour and resilience you've shown - that takes a special sort of person, a special type of strength.

Will be thinking of you tomorrow and hope it all goes as well as possible.

I just typed out a long paragraph about a poem a friend (also a cancer mummy, doing well 8 years on!) shared with me, but it came out all wrong. The bottom line is that you are doing a great job for Joe and your dd.

Big hugs.

minmooch Tue 15-Jan-13 07:07:37

Hi trazzle I shall be thinking of you all today and the coming days. Try and just get through these days and face the high dose chemo when that happens. I know it's so very hard to do, but I kelp trying to do that with my Ds, worry about today because there's nothing I can do about tomorrow until it comes.

I remember changing wards a couple of times with Ds and if does make you feel extremely vulnerable. You have to get used to new faces, new routines and that makes you very tired on top of the stress you are already feeling. I hope the procedure goes smoothly as can be. I also remember when Ds had his stem cell harvest not only do you have the big machine in the room all day but you also have the specialist nurse in there all day too - it makes for a very hot room. My mum came in to sit with us for the day and we were stripped down to nearly underwear!

I hope your asthma/chest is feeling better. xxxxxx

chocolateistheenemy Tue 15-Jan-13 07:13:08

A great big squeeze and a fat splodge of light from Devon (((((trazzle)))))

BarmeeMarmee Tue 15-Jan-13 08:44:39

A big fat splodge still splodging from me Trazzle and if I may I'm sending an accompanying hug too today. Gingers firmly crossed!

ToffeeWhirl Tue 15-Jan-13 09:27:10

Big splodge of light here in Sussex, Trazzle. Thinking of you and wishing you and Joe so much luck today ((hugs)).

thewhistler Tue 15-Jan-13 18:49:46

Trazzle, more splodges here.

ShiftyFades Tue 15-Jan-13 18:52:43

Trazzle I'm still here, still thinking and praying for you and Joe daily.

It's a hard time for you right now but you are the worlds best mummy, Joe is very lucky to have you to help him through this.

And Joe is an amazing little fighter, his body is doing a great job at winning this battle. And all of MN are right behind him.

If I could take the worry away from you, even for just a day, I would do it without hesitation. You are wonderful.

Happy 1st birthday to DD xxx

tholeon Tue 15-Jan-13 20:27:56

Just wanted to send a splodge from surrey. Wish I could do more. Bastard bastard cancer. Happy birthday to your lovely dd. xx

Trazzletoes Tue 15-Jan-13 22:17:57

Thanks. It's her birthday on Monday. Stem cell harvest went well. Should have got plenty enough cells today but delays meant we are staying in overnight for results tomorrow. Sigh. Should hopefully be out by midday and shrinkage of main tumour means surgery should be "less extensive" than previously thought, though still major surgery.

dikkertjedap Tue 15-Jan-13 22:36:53

Very good news that the stem cell harvest went well. smile

Very good news that surgery is likely to be less extensive.

Hope that tomorrow goes smoothly and you'll be home soon.

x

extracrunchy Tue 15-Jan-13 22:43:38

Go on Joe - you can beat it! Thinking of your mummy and family too x

Sorry to hear about the extra night in but so pleased that the surgery is likely to be less intensive.

Joe ... Keep up the good work.

narmada Wed 16-Jan-13 12:18:51

Thinking of you on yet another results day. HOpe all goes well today.

Trazzletoes Wed 16-Jan-13 13:07:52

We're back home and an excitable Spider-Man is fighting his DGma

onedev Wed 16-Jan-13 13:32:29

Yeah! Glad you're home & he's doing well.

Trazzletoes Wed 16-Jan-13 14:39:31

Just had a call from the hospital to say his feeding tube is too high and needs to be pushed down a specific amount. This has only been picked up from yesterday's x-rays now we've left hmm.

Fortunately a nurse is coming here to sort it but I am not. Best. Pleased. <stern face>

Hurrah for home. Boo for feeding tube needing an adjustment.

<wonders whether Spider-Man will capture visiting nurse in his spidy-web>

ToffeeWhirl Wed 16-Jan-13 16:37:14

So glad you're home and that Spiderman is so energetic! Hope you get to rest tonight, you must be exhausted.

IwishIwasmoreorganised Wed 16-Jan-13 17:15:21

Great to hear that you're home.

Tube repositioning should be easy enough for the nurse to do, just a pita for you and joe.

thewhistler Wed 16-Jan-13 17:46:00

Great that Spiderman is energetic . Nuisance about feeding tube but better that they spotted it.

toomuch2young Wed 16-Jan-13 19:17:50

Hopefully tube is repositioned by now and you all have a relaxed evening and good nights sleep at home.

Your family are in my thoughts and prayers trazzle big Cheshire splodges as always.

Please don't worry at all about being self indulgent, that is almost the definition of what MN is for, to support those who need help. And that is you.

If you want to be a marshmallow, we will be your hot chocolate. :0

Trazzletoes Thu 17-Jan-13 03:39:14

You guys always know the right thing to say. <hugs>.

Our Macmillan nurse came and sorted out the tube easy-peasy. I know it's a little thing and easily sorted but it was something I'd been concerned about, I had mentioned it, my concerns had been dismissed, they had the scans for a full 24 hours and it was just by chance someone noticed... On the whole the staff are amazing but when they cock up on the little things, it stresses me out because I worry about the bigger things - are they sure they have enough stem cells? are they storing them correctly? Are they labelled correctly? Without these cells transplanted back, he can never make his own blood again - they will save his life and if I can't count on them to get the small things right...
And this admission had more niggly things than most, unfortunately, and being on a different ward, the staffing ratios were 1 nurse to 2 beds rather than our normal 1nurse for 3-4 beds, and Joe was not exactly a high needs patient yesterday.

DH sent DM and I out to see Les Mis tonight (Hugh Jackman is one of my favourite people ever) which was lovely. I'm only awake now because I had to change Joe's nappy (or rather, I noticed his nappy needed changing when he called me in to make his legs "snuggly and ugly under the duvet". all good because they've changed his laxative as he's been horribly constipated for weeks and now it actually seems to be doing something. Phew!

His operation will also cause short-term problems with pooing as his digestive system will move slightly so if it can be more comfortable by next week...

I'd better get back to sleep as I'm up at 6 to go to work, but just wanted to let you know he woke me up in hospital on Tuesday morning ( on the ward!) by singing "Santa Claus is coming to town" as loud as he could grin. That's my boy!

Trazzletoes Thu 17-Jan-13 03:50:24

I don't want to be a marshmallow. I hate being a marshmallow. I want to be titanium.

But I'm not.

dikkertjedap Thu 17-Jan-13 09:24:06

Glad the feeding tube was put right easily.

It is very understandable that you are worried about the hospital getting things wrong sometimes. It is something everybody who has to deal with hospital/medics worries about. The only thing you can do is to remain vigilant and if you have concerns to tell them and to be persistent if you feel that it is really important. However, in general very little mistakes are made if you consider how many things they have to do, that doesn't make it good, but it is important to put it in perspective.

I hope Joe's laxative has started working and he feels more comfortable.

Brilliant that Joe is in such good spirits grin.

Both Joe and you (and the other Trazzles) are doing so well. You can be really really proud of yourself, how you take everything in your stride and how you support Joe and how you keep your sense of humour.

Sorry you didn't manage to get any sleep, hope work is not too demanding today and you can have an early night tonight.

x

Bloody hell Trazzle up in the wee small hours and work. You are supergirl to go along with spiderman.

And laughing (sorry) at your marshmallow grump. You'd sink in chocolate if you were titanium. Though thinking about it I'd like to be oak - strong and beautiful tries to forget old and stumpy though suspects it is more likely

thewhistler Thu 17-Jan-13 19:10:43

Isn't it lovely when they sing Christmas songs at the wrong time? My 15 yo has just been doing that and Joe will too when he is 15.

Well, if you are a marshmallow you are one with sprinkles on it. And personally I would not want titanium in my hot chocolate, nor I suspect would Joe when he is up to drinking it.

Poor him and the digestive system. Poor you.

Get some sleep tonight.

toomuch2young Fri 18-Jan-13 23:20:09

Hi Trazzle just checking in to see how you and the lovely Joe are getting on?
Have you had snow? Hope Joe has been up to enjoying a little of it.
Re Marshmellows, I think they are highly under rated. They are really very tough and in a much warmer, nicer way than any cold metal. I'm sure Joe prefers Marshmellows to metal any day. grin
Lots of splodges and thoughts as always.

Trazzletoes Sat 19-Jan-13 08:06:33

Hi too much, we are fine thanks. It's snowed overnight so hoping for some snowman building today. It's looking increasingly unlikely that DD's party will happen tomorrow sad and there's no alternative date sad sad so I'm feeling quite down about that, but Joe is as happy as larry.

Meanwhile I'm dreaming about kidneys <gip>

Hi trazzle. Just wanted to say a quick hello. Dd won't allow a long post so forgive disjointedness.

I totally get you re fears of medical mistakes. I am paranoid they'll get the chemo dose wrong. DH is paranoid they'll remember to put it in the saline! I was paranoid about them getting her blood group right for the transfusion... It's endless!

Good for you for being positive about the snow. I'm not keen at the best of times and now all I can think is that I hope it doesn't delay us getting in to hosp for our various appointments.

Hope you have a good weekend.

ToffeeWhirl Sat 19-Jan-13 09:36:57

Sorry about your DD's party, Trazzle. At least she won't know any different and she will enjoy all the fuss and attention from you, DH and Joe.

I'm sure Joe will love building snowmen today. I'm glad he's feeling happy. You must be doing a good job at helping him to feel that everything is fine, in spite of your own fears (so sorry about the bad dreams sad).

Praying - I'm so sorry you are going through this as well.

Cookingupastorm Sat 19-Jan-13 09:47:53

Adding my own positive thoughts and prayers to the hundreds and hundreds already flooding your way. How about being titanium outside and marshmallow inside..it's a lot more cuddly x

Trazzletoes Sat 19-Jan-13 11:33:50

Was feeling positive until I've just seen my credit card bill... Post-Christmas...

I think I need a spending diet to go with my eating diet faints. Though, to be honest, the 2 may be linked... Less chocolate = thinner Trazzle and more repayment money. Hurrah! Simple!

dikkertjedap Sat 19-Jan-13 13:40:30

Brilliant that Joe is in such good spirits. smile smile smile

I hope that he can build a beautiful snowman today! grin

Pity of dd's birthday party. Is it because of the snow? For your dd it will be brilliant anyway given how little she is, she will not even notice.

I think many people over spend during the X-mas period, especially if you have a very ill child.

However, nothing stops you trying to limit it from on, setting yourself achievable targets.

Sometimes buying stuff is just a way of coping with stress. In that case, you may need to seek another way to deal with stress (counselling, hobby, exercise, etc.) - easier said than done. What doesn't help in the UK is the high credit card limits, one way would be to pay off a bit and then lower the limit. I hope you can sort something out, as it is not only good for your bank balance but will make you feel better as well.

Thinking of you all.

x

ShiftyFades Sun 20-Jan-13 01:47:03

Hi Trazzle, glad the tube was easily sorted and I'm sure they are extra careful, check and double check when it comes to the really important stuff like stem cell collection. You have to have so much trust and faith in these people as they are helping your most precious little man, and it sounds like you have trust for them in bucket loads.
Last year I sang at a local theatre, it was my first time of being on a stage. (With a very small group of about 10) The rehearsal was awful, words were forgotten, wrong verses sung etc. we only rehearsed once... Come the performance we were faultless. (Mainly due to me because I was the only one who learned the words properly).
So our rehearsal was like the feeding tube, it wasn't the most important bit, but it was necessary. The performance was like the stem cells, it had to be right, we would have made the organisers look crap if it had gone wrong.
<shite analogy but all I can come up with at this early hour>

Trazzletoes Sun 20-Jan-13 07:00:48

I'm sure they will have made sure its alright, I'm just so scared.

This week has been comfortably far off for so long and now the operation is so real and so scary.

I think I've worked out the credit card (need to check though...) the bill has pretty much exactly doubled so I guess I forgot to pay this month - I can cope with payments at the current level - just - but not at twice that, which was what was panicking me so am slightly less anxious! I hadn't spent THAT much! And am going to try and squirrel away some every month to cover birthdays and Christmas this year as we never do and it's always my credit card that gets hit.

Anyway, my lie-in today so I really should get back to sleep, but had a lovely evening yesterday with work colleagues from a job I left 5 years ago - most of whom know nothing about Joe's illness so had a nice break from the reality of it all, although there were a couple of good friends who asked a bit about it, and a couple of "Facebook friends" who smiled at me, acknowledged me and then immediately turned away and studiously ignored me for the rest of the night. I guess they didn't know what to say?

ShiftyFades Sun 20-Jan-13 09:15:23

Oh Trazzle hmm horrid time for you.

So how is the snow? Do you think some people might be able to make the party so you can still have it, albeit on a smaller scale?

thewhistler Sun 20-Jan-13 09:49:41

Trazzle, yes, it is that they didn't know what to say and were terrified of saying the wrong thing. I've been in that position myself and still find it scary. It isn't that they are not concerned for you.

Trazzletoes Sun 20-Jan-13 10:00:56

When really I was just enjoying having different topics of conversation for once and with people not tilting their head when they talk to me grin. No harm done.

onedev Sun 20-Jan-13 10:15:28

Glad you had a good night - you sound a very understanding friend. Enjoy DDs birthday tomorrow - she'll have a great time regardless of who can make it. All the best for the coming week.

You are right, I bet they didn't know what to say. I don't know what to say and am terrified of saying the wrong thing too. And you sound so lovely - putting yourself in other people's shoes - and finding the positive in everything.

This week has been comfortably far off for so long and now the operation is so real and so scary

Brings to mind a quote that has stuck with me "The future has a habit of arriving unannounced". You've had so many steps to get to this point. And you've managed them with grace, passion and love. Adding fear to this next stage is completely understandable and you wouldn't be human or Joe's mother if you didn't. I guess one question is how can you harness your feelings so it helps you and your family ride the storm of the next few days?

Despite a somewhat shaky relationship with religion ... I will pray for you and yours this week.

<squeezy hugs over tinternet>

barefootcook Sun 20-Jan-13 18:52:40

Hi Trazzle

I just wanted to tell you I am thinking of you all and that the operation is a total success. I will also be praying for little Joe on the day. Please tell us what time the operation is scheduled for. You have all done so well this far.

Trazzletoes Sun 20-Jan-13 22:33:16

Party was cancelled this morning, but at least the house got a bit tidier!

Tomorrow we should be heading across the city to our old home area for a party with Joe's friends but it depends on the weather again. The fritters have been fantastic until now but seem to have abandoned our road today so the snow is building up now.

And an old friend of mine who is also a children's nurse should be moving up here in a couple of months so I'm really looking forward to that.

We don't know the time of the operation yet. We don't even know when or where we are being admitted. But I'll keep you updated. I think I would be fine with the prospect of the operation if it weren't for the boy who has been left brain damaged. I know logically that its extremely unlikely but I can't stop myself from wondering whether this is either our last weekend at home with him like this, or whether its our last weekend at home with him at all.

We had great fun playing in the snow and wrapping up DD's presents so at least we have good memories to get us through the next few months.

I noticed at bedtime today that Joseph's eyelashes are just starting to grow back and his hair is about half a mm long. It will all come out in a couple of weeks again, and tbh looking at it frightens me that the cancer could be growing back too, but it is good to know that normal service should resume in the end.

Thank you for your support. It is appreciated.

thewhistler Sun 20-Jan-13 22:39:20

Trazzle, scary stuff but as you say, some great memories of all the snow etc

I.hope it goes well and will be thinking of you. Love the idea of the fritters being out, BTW.

Trazzletoes Sun 20-Jan-13 23:18:40

Oh ffs! grin

Bless you and bless your lovely boy with his eyelashes.

Send some of your fritters down here wink

ChippingInNeedsSleepAndCoffee Mon 21-Jan-13 01:16:05

Fritters (especially pineapple and a NZ favourite, potato) are much nicer than gritters grin

I haven't posted a lot lately, but thinking of you every day. I hope you got my PM replying to yours a while back, about the CP thread?!

I can't believe you are still working - you are a complete star, I'd be good for nothing!

Trazzletoes Mon 21-Jan-13 06:47:39

Thanks chipping in yes I did get it, thank you. I have warned DH and DM to be aware.

Enough snow overnight that it looks like we won't make it out for DD's other party today... Oh well!

minmooch Mon 21-Jan-13 07:21:02

Thinking if you all Trazzle and family. Sorry the snow has buggered up all you DD's party plans but what can you do? I will be hoping and praying for you that this week goes well. Xxxx

Happy Birthday to your DD and still thinking of you in the SW.

ToffeeWhirl Mon 21-Jan-13 13:37:23

Another one wishing a Happy Birthday to MiniTrazzle today. I'm sorry about the party plans and I hope you have a lovely day regardless. DD won't know any better and will just be happy to be with you, DH and Joe.

ShiftyFades Mon 21-Jan-13 18:58:27

Happy 1st Birthday BabyTrazzle grin

I had a pea fritter and chips for tea just now, 'twas lovely wink

Thinking of you always, sending you lots of love xxxx

toomuch2young Mon 21-Jan-13 21:12:13

Happy birthday minitrazzle
Hope you have all managed to enjoy the day. Little one won't mind a jot about not having a party, I'm sure she's enjoyed playing in the snow more anyway grin x

dikkertjedap Tue 22-Jan-13 08:56:32

Wishing you lots of strength - hope the operation tomorrow goes as smoothly as possible.

Thinking of you.

x

BarmeeMarmee Tue 22-Jan-13 09:01:01

Another happy birthday for miniTrazzle grin. Splodging away still here.

minmooch Tue 22-Jan-13 18:57:47

Just wanted to let you know I will be thinking of you all tomorrow. Xxxxxxxxx

bobkate Tue 22-Jan-13 22:12:12

Checking in and splodging still. Hope MiniT had a great birthday and will be thinking of you over the coming days xxx

Trazzletoes Tue 22-Jan-13 22:52:23

Thanks all, Joe and DH are ensconced on the ward ready for the morning. We are finally being given information about the operation. For example ( I'm a bit dense): I thought the scar would be on his back. It's not, it's on his abdomen. He's going to have a million and one lines in to various parts of his body. He's not going to be able to eat for a few days...

The surgery ward is absolutely crazy. I'm actually hoping Joe DOES need ICU afterwards just so we don't have to go back there. It's massively cramped, with 18 beds. You can hear every one of those 18 children at any time. We are used to 4 beds in a bay with doors so you can only ever hear the people in with you. The facilities are really bad - you have to go on to another ward to use the toilet!

Joe needed the dressing changed on his Hickman line. When I told the Nurse that Joe cries when the dressing is peeled off, he announced that I could do it and walked off for 5 minutes hmm. Well, I can do it, and I did, but surely that's not the point?!

(And my personal selfish annoyance: we have to pay for parking (£16.40 a day) and tv while we are there).

Everyone is giving us different information so I hope to God we are not on this ward for the next few weeks. I honestly don't know what I will do.

Joe is the only person on his list for tomorrow: in around 9am. Won't be done before 2-3pm at the absolute earliest. No updates = a good thing.

Better get to bed and try to sleep.

narmada Tue 22-Jan-13 23:18:46

Oh it sounds fairly awful on that ward. 18 kids ? shock

Very best of luck for tomorrow. Everything crossed for you and Joe.

ShiftyFades Tue 22-Jan-13 23:35:56

Wishing you all the strength in the world for tomorrow xxx

Cookingupastorm Tue 22-Jan-13 23:37:55

Thoughts are with you x

Happy birthday to your sweet girl. (It's my middle girl's birthday tomorrow!)

Gosh, the ward sounds like an ordeal. Have your boys got earplugs?! It sounds awful that they expected you to change Joe's dressing. I've never been asked to do Beatrice's and I'm sure I couldn't as she wriggles so much. (She doesn't mind so much when they use that alco-peel stuff to dissolve the glue -- do you have that?)

Joe is in my thoughts and prayers.

Trazzletoes Wed 23-Jan-13 00:12:02

They usually do but not on this ward. I change it at home so it wasn't that big a deal, but he hates it so much that I prefer the nurses to do it. It's hard to be the bad guy.

Happy birthday to your DD too.

It will be ok, I'm just scared and that's affecting everything.

onedev Wed 23-Jan-13 00:41:56

All the very best. Will be thinking of you all & especially Joe - sorry the conditions are so miserable.

Trazzle I think you are dealing with this amazingly well and know that my thoughts and ommy prayer things are with you, your dp, your dd and Joe.
I hope it continues to go well xx

barefootcook Wed 23-Jan-13 01:08:03

Dear Trazzle

The ward sounds dreadful - poor you. I really hope you don't need to stay there for too long. All the best for the operation. I will be asleep down here but will have you in my prayers and will log on to find out how little Joe is tomorrow.That nurse was useless- you need more help not less!

ToffeeWhirl Wed 23-Jan-13 01:09:33

I'll be hoping for no updates then, Trazzle. Wishing you, your DH and Joe all the very best. I'll be thinking of you all.

Fivemoreminutesmummy Wed 23-Jan-13 05:23:15

Good luck today Joe and all of you. I'll be thinking of you and crossing gingers that all goes smoothly. Such a big hurdle to jump but he can do it. Go team trazzle, I'll be rooting for you.

minmooch Wed 23-Jan-13 06:44:45

Thinking of you Trazzle. I hope everything goes smoothly today xxxx

When you can summon the energy I would complain about that Nurse to the senior Nurse on the ward. The nurses are there to care for your children and to give you confidence in their abilities. That Nurse did not show empathy and should be reprimanded.

When my DS came down from ICU after his op and into the general paed post- op ward incompletely freaked out. The noise and numbers of other people there sent me over the edge. I couldn't listen to another parent moan about their child's minor op (I know major to them) and them just turn away when I told them what my son had gone through. I demanded after a week to be moved back to the paed oncology ward for my sanity if nothing else. I wanted to be amongst other families who understood. We were moved back then but we might have just been ready to leave that ward though.

I will be thinking of you all xxxxxxxx

MirandaWest Wed 23-Jan-13 06:50:49

Thinking of all of you

Thinking of you and Joe today and gingers VERY firmly crossed

feetheart Wed 23-Jan-13 07:02:27

Thinking of you all today

hellohellohihi Wed 23-Jan-13 07:10:46

Rooting for you all here xxx

toomuch2young Wed 23-Jan-13 07:54:50

Thinking of you lots today. Xx

BarmeeMarmee Wed 23-Jan-13 08:46:28

Thinking and praying for you all today Trazzle, along with some firmly crossed gingers...

dikkertjedap Wed 23-Jan-13 09:26:20

Thinking of you all today.

Hope everything goes as smoothly as possible.

x

Thinking of you all today. Gingers crossed and a big hug especially for you Trazzle

Trazzletoes Wed 23-Jan-13 18:08:25

Out of theatre. No need for ICU. Doing well so far. Both kidneys still in place.

More later when I get a chance.

dikkertjedap Wed 23-Jan-13 18:15:30

So pleased he is out of theatre.

I hope the ward turns out to be better than expected and you both manage to have a good rest.

Well done Joe, what a star!!!! smile

hellohellohihi Wed 23-Jan-13 18:51:02

Go joe. Come on xxx

Trazzletoes Wed 23-Jan-13 19:03:32

Ha, yes, I'm feeling a bit more at home here now. Still prefer our normal ward though. I popped down earlier for some food I had left there and I miss it.

Impressed with the stuffers who opened our box of tea bags here to help themselves rather than using the ward ones hmm

Trazzletoes Wed 23-Jan-13 19:03:55

Scuffers.

thewhistler Wed 23-Jan-13 19:08:30

Great, look.after yourself.

Some people..

ToffeeWhirl Wed 23-Jan-13 19:19:37

Great news! You must be exhausted though. What a day for you.

Am hoping the tea-bag thieves made a mistake and thought they were ward ones... hmm

toomuch2young Wed 23-Jan-13 19:53:38

Fab news! So pleased sounds really positive.
Hope you both get a comfortable night x

How very dare they! grin

ooooo that all sounds really promising <squeeeeeeeze>

ShiftyFades Wed 23-Jan-13 21:11:24

Oh that sounds positive, squeezing that hand of yours tightly grin

Trazzletoes Wed 23-Jan-13 21:19:02

The surgery was a bit trickier than expected as the tumour had stuck well to his kidney and was wrapped round one of his veins, it was also stuck down in his pelvis so they haven't got 100% of it out, but they have enough. Now it's gone to be biopsied.

Joe is doing well - been sick a bit and bloody diarrhoea but that's totally normal. He's got an epidural and his biggest complaint is a sore willy from the catheter and having cannulas in his hands again.

Drs, anaesthetists and nurses = fantastic.

dikkertjedap Wed 23-Jan-13 21:29:56

Poor boy, I totally commiserate with him, cannulas are so so uncomfortable.

I hope they can take it out asap, same for the catheter, does it need to stay in for long?

Hopefully he gets plenty of pain relief and hopefully, you both manage to get some sleep.

Good news that the surgery has gone well, hopefully the biopsy brings further good news about the nature of the cancer left. It must be such a relief to have this step out of the way. Team Trazzle is doing so well!

Trazzletoes Wed 23-Jan-13 21:43:05

Because they've messed around with his kidneys they need to keep a close eye on his urine to make sure his kidneys are still working fine. No idea how long the catheter stays in sad

ShiftyFades Wed 23-Jan-13 21:48:01

They are amazing, sounds like it was hard work. But Joe sounds very positive and its good to know he is aware enough already to be moaning about the canular and his willy. smile

How are you and DH?

thewhistler Wed 23-Jan-13 21:51:05

Gosh, sounds like an operation and a half.

Poor old chap. Give him lots of love. And give yourself a nice gin...

Well done Joe and Trazzle smile. hope you both get some sleep tonight

narmada Wed 23-Jan-13 22:09:18

Sounds like it went well. What a trooper Joe is.

Have everything crossed for good biopsy results and a good debrief, or whatever the medical term is for post-op discussions with parents/ patients.

Hope the cannula is out soon - that must not be nice. Poor lad.

minmooch Wed 23-Jan-13 22:39:04

Oh trazzle I am so glad the op is over. I'm sorry it was trickier than the expected but good they got most of the tumour out. So glad you are happy with all the medical support.

I hope you all have a peaceful night and get some rest. Xxxxxxx

Night night trazzlesies hope you sleep well and peacefully

Three hips and a hooray for clever surgeons
Boo for nasty nurses
Shhhhhhhh for other patients on the ward

onedev Wed 23-Jan-13 23:59:48

Poor little love but he is a star so well done Joe (& you!)

Cookingupastorm Thu 24-Jan-13 00:03:16

What a brave lad and brave mum. Well done, one step at a time but we're with you all the way x

What a day for you all. Thinking of you.

BarmeeMarmee Thu 24-Jan-13 07:50:51

So glad it's gone well if a little trickier than you'd hoped. Sending lots of love.

RatherBeOnThePiste Thu 24-Jan-13 09:13:44

What a day indeed. Much love to you all Trazzle, hope you both got some rest last night X

tholeon Thu 24-Jan-13 11:29:39

So glad he has come through ok, praying for more good results. Brave clever boy - and Mum. X

bobkate Thu 24-Jan-13 19:50:39

Glad this next step is done, and that he's doing ok xx Thinking of you all x

barefootcook Thu 24-Jan-13 21:26:04

Lovely to hear that the operation went so well. What a brave wee man. Hope the test results bring the more good news for the deserving Trazzles.

ToffeeWhirl Thu 24-Jan-13 21:49:27

So relieved the op went well. I hope Joe's been comfortable today and continues to make great progress. Bright light burning here in Sussex for you all. Xx.

toomuch2young Thu 24-Jan-13 22:04:09

Hope today's been quiet and comfortable and you get a good night sleep tonight.
Thinking of you guys xx

dikkertjedap Fri 25-Jan-13 09:08:29

Hope Joe is recovering well from the operation and that the cannula and catheter are not bothering him too much.

Thinking of you,

x

thewhistler Fri 25-Jan-13 11:44:18

Hope today goes well.

Trazzletoes Fri 25-Jan-13 23:06:21

Sorry, reception on the ward is rubbish, but am finally back in my own bed!

Joe is doing really well, still sleeping off the various drugs he has had, but today has started sipping water. He is weeing well (tmi alert!) and passing less blood. The only slight concern is that his stomach contents haven't seemed to be returning to normal as quickly as most patients. This affects when he can start drinking properly and eating. He can't come home until everyone is certain his digestive system is operating normally.

They started to reduce the epidural this morning and, when I left, he was still coping with this alright although he didn't like to have his bed sheet over his scar. Quite odd as he hates being naked but hasn't worn clothes since weds morning!

He's a long way from his usual self but has cracked the odd smile today, told the nurses off for not letting him eat and has consented to kisses.

His scar is so neat - there will be no passing it off as a shark bite!

Hoping that the epidural will stop tomorrow and he can start to get back on his feet and hopefully that his stomach will start behaving itself and have the right stuff in.

I am so proud of the little dude. There is no way I would be handling this, this well.

Trazzletoes Fri 25-Jan-13 23:07:44

Oh and they've taken one cannula out so he just has... The 2 sections of his Hickman line; one cannula; an epidural and his NG tube grin

Trazzletoes Fri 25-Jan-13 23:08:15

...and the catheter.

catkind Fri 25-Jan-13 23:25:05

One more little voice wishing you and your amazing son well.

Go! Go! Nudey Joe!

toomuch2young Sat 26-Jan-13 11:11:03

Keeping going little dude!!
You must be so proud of him trazzle
Gingers crossed for settled tum today.

ShiftyFades Sat 26-Jan-13 11:27:59