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

Joseph's ongoing journey with Neuroblastoma

(998 Posts)
Trazzletoes Mon 13-May-13 22:24:21

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

RubyrooUK Mon 13-May-13 22:32:47

...always thinking of the Trazzles family and Joseph. X

Beehatch Mon 13-May-13 22:33:17

Oh Trazzle, My thoughts are with you and your beautiful and wonderful Joseph xx

BeaWheesht Mon 13-May-13 22:34:11

Thinking of you still

Still thinking of you, still hoping and still splodging xx

He is beautiful and wonderful and so is his mum and we are right behind you. Continuing to pray for your boy.

DearlyDepartedMrsFinch Mon 13-May-13 22:39:46

Sending splodges x

lougle Mon 13-May-13 22:50:08

Still here x

CelticPromise Mon 13-May-13 22:51:48

Think of you and your lovely boy often Trazzle.

Pancakeflipper Mon 13-May-13 22:54:01

I think of the Trazzle gang frequently.

I reckon whenever you feel alone Trazzle, there's at least 3 MNetter's thinking about you and your amazing boy.

Hassled Mon 13-May-13 22:57:56

Oh way more than at least 3 smile. There are tons of us out here, wondering how you're doing and how Joe is.

Ragusa Mon 13-May-13 22:58:49

Definitely more than 3 flowers

Pancakeflipper Mon 13-May-13 23:00:55

Apologies - I was way off the mark thinking wise. Stick some noughts on the end of my pathetic number 3.

I am glad I was wrong.

barefootcook Mon 13-May-13 23:01:05

Trazzle- he is such a lovely wee man,trying to walk again and go to the toilet like a big boy. I really, really hope you get some good news on Friday. Will keep on praying and thinking about you guys. Are you up to 3000 posting? Amazing.

OzBrit Mon 13-May-13 23:01:42

I think of you all often. I posted very early on and have been lurking since. Sending big hugs x

toomuch2young Mon 13-May-13 23:01:48

Indeed, is loads of us trazzle. Thinking of you, your family and your beautiful blue eyed boy every day.
Hope you are managing some good days in amongst the rest.
Here's to a good night sleep for you all and some sunshine tomorrow x

HairyPotter Mon 13-May-13 23:02:13

The gorgeous Joe is always in my thoughts Trazzle. Sending light and splodges to you all. xx

Manchesterhistorygirl Mon 13-May-13 23:04:37

Still here, you wander into my thoughts regularly. What a brave boy Joseph is.

Beautiful and wonderful Joe and his amazing Trazzle family smile

Still splodging and, because I've exhausted my list of people for a pint of their red stuff, I have, after a long, long absence from anything churchy, hauled my ass into a godly place and lit a candle and said a prayer to the St Myron - the wonder worker - just in case it makes a difference.

Glad Joe continues to improve. Lovely boy.

WouldBeHarrietVane Mon 13-May-13 23:57:04

Thinking of you all the time.

xx

Thumbwitch Tue 14-May-13 00:44:31

Still splodging from Australia. Have put Joe's name down onto a couple of prayer lists as well, anything that might help. x

SingingSands Tue 14-May-13 00:49:52

Hiya Trazzle. You know I'm local if you need or want anything, just shout.

Love to you all Xxx

TwentyTinyToes Tue 14-May-13 01:26:28

Thinking of Joe and all the Trazzle gang, wishing for a miracle. X

Startail Tue 14-May-13 01:35:18

I never know what to put, but thing of you Joe and Tazzels

Startail Tue 14-May-13 01:36:06

Thinking of you, bed time I think

OrWellyAnn Tue 14-May-13 01:45:54

Think of you and Joe often. I just signed up for race for life, inspired and humbled by your journey and your bravery in sharing it. X

MyShoofly Tue 14-May-13 03:13:49

thinking of you and Joe Trazzles....still here wishing I could hold your hand from across the wide world.

BarmeeMarmee Tue 14-May-13 04:39:53

Thinking of you all often Trazzles. Fantastic about the toilet training! My boy could learn a thing or 2 from Joe (I wish!)

Wonderful Trazzle family,in my thoughts daily x

ripsishere Tue 14-May-13 04:55:05

DD and DH remember Joe in their prayers.
I am always encouraging people to donate too. Not in Malaysia, that wouldn't be any good whatsoever, however those in the UK are hounded.

PseudoBadger Tue 14-May-13 05:56:17

Still here for you all xx

infamouspoo Tue 14-May-13 05:58:31

think of you often but lose track when the threads are huge. Hugs to you all.

SarahJinx Tue 14-May-13 06:22:34

Thread 5? Pretty much always thinking of wonderful Joe, hoping right by your side for a miracle and thinking that if anyone deserves one.....anyway, holding your hand.

blue22 Tue 14-May-13 06:27:58

I'm here too still thinking of you all and praying that the news on Friday is miraculous x

mynameisnotmichaelcaine Tue 14-May-13 06:33:46

Thinking of you every day.

TicTacSir Tue 14-May-13 06:57:16

A big splodge of light from Devon too. x

peggyblackett Tue 14-May-13 07:03:35

Thinking of you and your lovely Joe.

ninja Tue 14-May-13 07:18:02

Thinking of you as ever and the strong and determined Joseph. ((And still keeping gingers firmly crossed for Friday))

blizy Tue 14-May-13 08:03:33

Thinking of you all and still splodging away. X

Mama1980 Tue 14-May-13 08:07:51

Still thinking of you and joe xx

ArabellaBeaumaris Tue 14-May-13 08:46:53

I'm thinking of you too.

Hullo Trazzles! Signing in for the new thread. Fab to hear Joe is feeling better in himself. I like to imagine him zooming about with his zimmer, whacking you in the shins with it! grin

Again as always, whatever you need, just ask. Much love to you all.

Halfling Tue 14-May-13 11:13:57

Thinking of Joe.

Just signing in to remind anyone who hasn't been nagged encouraged by me lately to give up some of your BLOOD.

We cant all send Joe presents, Trazzles does not like the idea of sending her money, we cant all hug him or Trazzles at once (they would be submerged by a huge weight of vipers)
But what we can do for Joseph and all the children going through this is DONATE BLOOD.

Being worried about a little needle and a lie down is NOTHING compared to what Joe has gone through. It is something practical that many of us CAN do. And what's more, lots of people who can't give blood have shamed encouraged someone else to give on their behalf.

Thank you (dismounts hobby horse)

TheOldestCat Tue 14-May-13 16:04:12

Seconding Norks and her hobby horse. I did my first donation last week (successful, anyway, had tried years ago but my blood pressure was too low). I was nervous as anything but it was EASY PEASY and painless and, like she says, NOTHING compared to what Joe and other children have gone through.

Sign up now! Do it, do it! You get a chance to sit down for a bit and have free crisps and squash.

Trazzles - thinking of you and your beautiful boy x

ItsOkayItsJustMyBreath Tue 14-May-13 16:12:03

Splodges from a mizzly Sussex Trazzles, you are in my thoughts daily x

YAY for theoldestcat well done!

onedev Tue 14-May-13 18:43:13

I'm still here & thinking of you all too. Go Joe & using the toilet! Glad things have been brighter.

MelodyBaker Tue 14-May-13 19:18:36

Still in my thoughts x

Still splodging away on the Sussex coast... Your family is never far from my thoughts.

NomDeClavier Tue 14-May-13 19:29:19

Thinking of you here too (have NCed since this started). Splurging away hard.

Hulababy Tue 14-May-13 19:31:11

Thinking of you all

scarecrow22 Tue 14-May-13 19:40:44

de lurking to add my name to the long roll of people following your family's courageous and curiously beautiful journey with heartfelt sympathy. What an amazing little boy, and a wonderful mum

ADefiniteMaybe Tue 14-May-13 19:56:46

Thinking of Joe and all of you x

MrsFrederickWentworth Tue 14-May-13 21:02:25

Trazzle, isn't Joe a wonder.

It's clearly hereditary.

Will ask nurse if I can give blood at next test, suspect no, but am signing up for organ donation.

Portofino Tue 14-May-13 21:04:55

Thing of you and praying for the best possible outcome xx

Thinking of you all x

Badvoc Tue 14-May-13 21:12:17

Thinking of you all xxxxx

YAY for mrsF smile

hackneyzoo Tue 14-May-13 21:44:42

Sending all my love to the Trazzles x

Booked in to give blood on Thursday and will inquire about platelet donation.
smile

YAY for hackneyzoo...

... Went to the city farm once, I didnt know there was a ZOO smile

Mintyy Tue 14-May-13 22:13:41

Never far from my thoughts, Trazzles, you and your darling boy x

pepperrabbit Tue 14-May-13 22:14:07

Trazzles, thinking of you all and praying hard for Joe. x

LatinForTelly Tue 14-May-13 22:33:48

Another person here thinking of you and your wonderful boy x

TiredFeet Tue 14-May-13 22:53:35

lovely to hear how Joe is doing! thinking of you all x

saffronwblue Wed 15-May-13 00:35:14

Big splodge of light for the wonderful Trazzles and beautiful Joe. x

StealthOfficialCrispTester Wed 15-May-13 07:24:07

Getting on this thread as I can post again last one was too big for my phone.
Tbinking about you all often xx

StealthOfficialCrispTester Wed 15-May-13 07:31:06

And I have finally managed to send off the request to donate blood . Hopefully that will be ne t thursday

headlesslambrini Wed 15-May-13 07:34:52

still thinking of you all and hoping for the best. x

D0GWithAYoni Wed 15-May-13 07:37:31

I also am always thinking of your family

YAY for stealthy smile

StealthOfficialCrispTester Wed 15-May-13 15:14:02

Got a response sahing all appointments gone aargh

StealthOfficialCrispTester Wed 15-May-13 15:16:21

Got a response sahing all appointments gone aargh

hackneyzoo Wed 15-May-13 18:11:49

Norks; you never came to my house wink

smile

cuggles Wed 15-May-13 19:41:40

Gave blood monday night...Joe brought me out of blood retirement! Thinking of the Trazzle family often! X

Ragusa Wed 15-May-13 21:30:13

Think you said you were going in tomorrow or Friday for scan results. I so hope you get a good result, I will be thinking of you all.

YAY for cuggles...off the Norksy nag list smile smile

Trazzletoes Wed 15-May-13 22:01:58

Scans are tomorrow and Friday (it's the same scan done twice) and then hopefully results on Friday afternoon.

ajandjjmum Wed 15-May-13 22:35:04

Love and prayers to the Trazzles. x

Will be thinking of you all over the next 48 hours.

Badvoc Thu 16-May-13 07:58:18

Thinking of you as ever xxxx

BuffyFairyTopsTheTree Thu 16-May-13 09:50:21

Hoping for the best possible outcome from the scans today and tomorrow. Holding you in my thoughts.

Go Joe for pushing himself clear of the sofa, that's fantastic!

Sending lots of love and strength xx

Hmmkay Thu 16-May-13 10:28:27

Wishing you lots of luck with Joe's scans xxx

tholeon Thu 16-May-13 12:32:34

Thinking of you all today x

Almostfifty Thu 16-May-13 14:04:45

Fingers crossed here. I often think of the Trazzles.

minmooch Thu 16-May-13 14:41:32

Fingers tightly crossed for your Joe xxxx

ninja Thu 16-May-13 17:55:25

Thinking of you all as ever x

upto11 Thu 16-May-13 19:21:02

Thinking of you and Joe every day, but especially today and tomorrow x

ClockWatchingLady Thu 16-May-13 19:38:13

Also thinking of you, and will be especially doing so tomorrow. XX

CoffeePleaseSir Thu 16-May-13 19:39:59

Thinking of you all x

Quangle Thu 16-May-13 19:45:31

Thinking of you every day.

bobkate Thu 16-May-13 20:20:03

Splodging away as much as I can and keeping everything tightly crossed for as good news as possible from today and tomorrow. Will be thinking of you xx

youarewinning Thu 16-May-13 20:20:59

thinking of you xx

Succoria Thu 16-May-13 20:32:57

Not posted on your threads before Trazzle but dp and I are both donating blood asap.

Thoughts are with you all xxx

StealthOfficialCrispTester Thu 16-May-13 20:35:53

Have been thinking about you today and will continue to do so tomorrow x
And keeping every thing crossed for that tiny tiny chance of a miracle of course.

StealthOfficialCrispTester Thu 16-May-13 21:08:40

Really struggling to give blood but have had an idea. I work on a university campus and from what I remember of being a student they used to come round to campuses. So I'm going to ask tomorrow if they do such a thing here, and assuming they do I'll get booked on and badger all my colleagues as well.

YAY for succoria and mrsuccoria you lovely bleeders smile

YAY for stealthy and her badgering tendencies.

Would you like some badgering badges to hand out? (I have a badge machine and I know how to use it smile
"I am a brilliant bleeder" for example. "stick a pin in me, I'm done", "pure blood". As you can tell, inspiration is low-ish smile

maxmissie Thu 16-May-13 22:02:44

Thinking of you as always and will hope for good news. Sending love and strength to you all. xx

QOD Thu 16-May-13 22:04:16

Thinking of you x

Praying for you all

georgedawes Thu 16-May-13 22:11:30

Thinking of you all x

Pancakeflipper Thu 16-May-13 22:19:47

Thinking of you Trazzles and super Joseph.

toomuch2young Thu 16-May-13 22:42:26

One day of scans down, one to go.
Thoughts with all Trazzles, especially Super Joe, as always x

Trazzletoes Thu 16-May-13 22:58:04

Thanks all. We'll see how tomorrow goes but I'm not hopeful.

The scanner-man was showing someone else Joe's scan to show them what a scan looks like and they were talking about it. I'm guessing they wouldn't have talked about it if there was nothing there to talk about. Ah well. Will find out tomorrow, eh?

On the plus side, J has taken a couple of steps with his zimmer. V proud!

bobkate Thu 16-May-13 23:02:29

Go go Joe Superzimmerman smile Fingers still tightly crossed x

FoodieToo Thu 16-May-13 23:29:05

Thinking of you all everyday but especially tomorrow x

Badvoc Fri 17-May-13 07:09:28

Thinking of joe today.
Xxxx

foofooyeah Fri 17-May-13 07:21:20

Love to you and Joe. The scan results must be so nerve wracking. Wishing you peace and light.

RubyrooUK Fri 17-May-13 07:34:26

Thinking of you again today Trazzles. And well done Joe for making such good progress with your zimmer! X

TwentyTinyToes Fri 17-May-13 07:58:26

Another one thinking of Joe, especially today. X

Ragusa Fri 17-May-13 09:15:52

Thinking of you today. Hope the scan results give you your miracle and wishing you strength if they don't flowers

minmooch Fri 17-May-13 09:18:09

Ah Trazzles you can't read anything into the scanner-man but it's so hard not to. I'm thinking of you and praying hard for that miracle that all our children deserve xxxxx

superfluouscurves Fri 17-May-13 09:19:04

Sending more positive thoughts and prayers to you all today Trazzles!

ToffeeWhirl Fri 17-May-13 09:33:09

Good for Joe and his zimmer. Thinking of you today, Trazzles, and hoping for good news. x

Bluebell99 Fri 17-May-13 10:22:46

Thinking of you ((hugs))

mummylin Fri 17-May-13 10:23:15

I usually just lurk on your threads but have followed your very sad story, I want to wish you all the best news possible today, I will keep everything crossed for your dear little son.

LegoAcupuncture Fri 17-May-13 10:26:05

Thinking of you today. Well done J for those few steps xx

CoteDAzur Fri 17-May-13 10:28:53

Thinking of you & family, Trazzle.

ShowOfHands Fri 17-May-13 10:29:23

I don't think I've posted on your threads before but that doesn't mean that I'm not here and reading every single one of them. Thinking of you today.xx

schobe Fri 17-May-13 10:58:58

Me too. I'm reading but just not very good with words. Thinking of you all today.

ninja Fri 17-May-13 11:02:33

Still thinking of you all (and hoping for a miracle).

Joe's steps sound amazing, here's to many more x

Trazzletoes Fri 17-May-13 11:09:49

Thanks all. 2nd scan done. Now we just wait...

<squeezes Trazzle>

Asheth Fri 17-May-13 11:26:26

Sending you lots of extra love and support today. xxx

StealthOfficialCrispTester Fri 17-May-13 11:30:39

Hope yhe scan went as well as these things can.

DameFanny Fri 17-May-13 11:42:40

I don't post often but I'm still burning a light for Joe in Norfolk.

Badvoc Fri 17-May-13 12:48:35

{hugs}

Halfling Fri 17-May-13 12:55:31

Joe is in my thoughts and prayers.

TheOldestCat Fri 17-May-13 12:58:44

Positive thoughts for you, and for your amazing and wonderful boy.

kissmyheathenass Fri 17-May-13 13:18:45

Just popping in to say we are thinking of you and your gorgeous brave Joe this afternoon.

scarecrow22 Fri 17-May-13 13:19:45

thinking of you and your family so much today x

VenetiaLanyon Fri 17-May-13 14:36:04

Hoping so much for you x

BuffyFairyTopsTheTree Fri 17-May-13 14:43:03

Gingers crossed for you. Will be thinking of you xx

Mama1980 Fri 17-May-13 15:01:05

Fingers crossed for you x

Trazzletoes Fri 17-May-13 15:06:42

Still waiting sad

seeker Fri 17-May-13 15:10:07

Thinking about you.

Ragusa Fri 17-May-13 15:11:24

Another bit of slow torture for you. It must be excruciating. Still thinking of you and offering a virtual hand to hold.

StealthOfficialCrispTester Fri 17-May-13 15:18:03

The wait must be awful. Still thinking about all of you

MrsFrederickWentworth Fri 17-May-13 15:52:31

Oh Trazzle, thinking of you.

CinnabarRed Fri 17-May-13 16:23:42

Hi Trazzles - thinking of you.

I'm at my firm's charity Dragonboat race as I type. So far, we've raised £190k for Cancer Research, Children With Cancer, and Help For Heroes.

I'm doing it for Joe.

5madthings Fri 17-May-13 16:27:17

Sending love and thinking of you all xxx

ajandjjmum Fri 17-May-13 16:28:45

Everything crossed for you Trazzles.

Trazzletoes Fri 17-May-13 16:31:47

Thanks Cinnabar.

Still waiting...

tholeon Fri 17-May-13 16:44:44

Waiting must be tortuous. Love.

Trazzletoes Fri 17-May-13 16:57:11

Not looking likely that we will find anything out today now <cries>

oh Trazzle. I hope your wait is over soon. Sending much love. I hope you're not having to keep the DC entertained in a waiting room hmm

Oh sweetheart. Will they work Saturday or do you have to wait all weekend?

ToffeeWhirl Fri 17-May-13 17:05:18

Oh, that's so unfair, Trazzle ((hugs)).

StealthOfficialCrispTester Fri 17-May-13 17:06:45

sad

blizy Fri 17-May-13 17:20:38

Oh trazzle, waiting sucks! I hope the wait is over soon, splodges and love. X

Trazzletoes Fri 17-May-13 17:48:33

Will post more later but Joe's consultant has called and the cancer has gone from his head!

Stunned. Amazed. Can't stop crying. Can't quite believe it.

Thanks so much every single one of you.

LegArmpits Fri 17-May-13 17:49:27

Oh dear God I'm made up for you Trazzles! I don't know what to say!!! Xxxxxx

Badvoc Fri 17-May-13 17:51:04

Oh thank god thank god thank god!
smile
Trazzles....I have been thinking of you all day
Thank you so much for posting this amazing news!!
Go joe!!
smile

eminemmerdale Fri 17-May-13 17:51:08

wow!!! that's amazing grin

PointeShoes Fri 17-May-13 17:52:14

I haven't posted before but always think about u a joe as my boy is the same age. That is just amazing!!! Your son is so lucky to have you as a mummy, your both so strong xx

ToffeeWhirl Fri 17-May-13 17:53:59

Oh my! Can't believe this! Am so, so happy for you, Trazzles!

gonerogue Fri 17-May-13 17:54:17

Oh wow, oh Trazzles I've been lurking but that last post has made me well up. Delighted to hear the brilliant news, you must be so relieved. Let it all out, the crying is just a release of your stress.

Xx

O my word, that is amazing, so so so pleased for you all smile

mummylin Fri 17-May-13 17:54:59

Wonderful news

StealthOfficialCrispTester Fri 17-May-13 17:55:13

grin
I am os so thrilled
absolutely overwhelmed
Just goes to show that an old sourpuss like me can be so wrong
I clickd on this thread and saw toffes post and it wouldn't damn well scroll down

hackneyzoo Fri 17-May-13 17:55:50

Brilliant news! Sooooo happy for you all Trazzles! xxx

DizzyPurple Fri 17-May-13 17:56:21

Brilliant news, what a relief! Xx

StealthOfficialCrispTester Fri 17-May-13 17:56:28

and yes, thank you so much for taking the time to post that/ You must have so much more important things to do
like hugging your children

Badvoc Fri 17-May-13 17:56:38

Can't stop grinning smile smile smile

FriskyBivalves Fri 17-May-13 17:57:00

Trazzles, how amazing. Delurking to say I am sending thrilled thoughts from Paris and if the news brings that eurodisney trip any closer, the offer to stay still stands. Early days and so much for you to digest but have a great weekend!

Lollyheart Fri 17-May-13 17:57:44

That's great news smile

wonderful, wonderful, wonderful

StealthOfficialCrispTester Fri 17-May-13 17:59:02

I have to keep scrolling down to read that post in case I've imagined it

Oh. My. Word.

<weeps a little too>

SolomanDaisy Fri 17-May-13 18:01:11

Wow, that is amazing news. Fantastic.

headlesslambrini Fri 17-May-13 18:01:16

wow - was this news expected? i'm crying with happiness for you.
wonderful news.

RifRaf Fri 17-May-13 18:01:25

I am a long time lurker but have been following this thread from the beginning and have just burst into happy tears on reading this news! So thrilled for you.

SarahJinx Fri 17-May-13 18:02:07

That's the best news. The absolute bestest.

Alibabaandthe40nappies Fri 17-May-13 18:03:02

Oh Trazzles! <squeeze>

smile

Fabulous news - so happy for you xxxxx

StealthOfficialCrispTester Fri 17-May-13 18:03:59

Just saying something else to keep this bumped grin This is the best thread ever

shock grin oh my goodness Trazzles, I actually don't know what to say. What a roller coaster you are on right now. This is better than you had imagined isn't it? shock grin

upto11 Fri 17-May-13 18:05:56

Oh my goodness, this is just the very very best news. Am crying! Can't quite believe that I could feel like this for someone I only know through this thread. I am so very happy for all of you, and especially the adorable Joe. Xx

DameFanny Fri 17-May-13 18:06:25

What? I mean what?

grin grin shock grin grin

orangina Fri 17-May-13 18:06:40

Oh Trazzles! More excitement here from another lurker...... What amazing news! Looking forward to hearing the full story, and lots of splodges from here in West London....

Portofino Fri 17-May-13 18:07:23

Oh Trazzles! What wonderful news! I am crying too. Xx

thefirstmrsrochester Fri 17-May-13 18:08:56

Amazing news grin
In fact grin grin grin!
Your lovely boy!

Almostfifty Fri 17-May-13 18:09:15

Do you know what Trazzles, I am known as a cold hearted bitch, but that's made me well up. Well and truly.

So bloody glad. Onwards and upwards.

piprabbit Fri 17-May-13 18:09:56

Wow grin flowers bear wine grin (the bear is for Joe, the wine is for you).

So very glad the consultant spoke to you today and didn't leave you stewing for another night/weekend.

I hope your wait is open soon. sad

An amazing XPost.

That made me well up. Amazing news.

MirandaWest Fri 17-May-13 18:11:31

Oh what amazing news smile

Saw there had been quite a lot more posts on this thread and was so hoping it would have been for this reason smile smile

StealthOfficialCrispTester Fri 17-May-13 18:12:06

oh Herring it is smile

Trazzletoes Fri 17-May-13 18:12:07

Fizzy er, yes! <understatement>

Headless we knew it could happen but Joe's consultant was firmly of the opinion that it would not happen. Definitely not. He is stunned by the results. I think Joe's hospital has only known it happen once, maybe twice. It was a massively long shot.

So we knew it was technically a possibility but the actual results were very unexpected!

lunar1 Fri 17-May-13 18:13:14

I'm so happy for you and your family trazzles

MadameJosephine Fri 17-May-13 18:13:19

Another lurker here delurking to say hurrah, what incredibly fantastic news!

StealthOfficialCrispTester Fri 17-May-13 18:13:35

Trazzle what are you all doing now? Have you told all your family? I assume so?
If you don't mind me asking, is this 'it'? Or are they still advising caution?
(I really don't know how these things work, but to me, the cancer is gone...)

rightsaidthread Fri 17-May-13 18:13:49

Been following Joes progress right from the start and just let out a massive YAY reading your news.

So so happy for you all xx

Ragusa Fri 17-May-13 18:13:56

grin grin grin flowers.

What utterly, utterly fabulous news. Big love to you all. xxxxxxxx

StealthOfficialCrispTester Fri 17-May-13 18:14:11

Oh and tell us how he broke the news?
It must be the absolute best bit of the job

Can I happy dance!????! grin grin grin grin

StealthOfficialCrispTester Fri 17-May-13 18:15:00

or...compleely ignore my excited witterings and spend time with your lovely family. That's what I'd do grin

xigris Fri 17-May-13 18:15:15

Absolutely bloody fabulous! I was in a bad mood this evening. Not anymore! wine <-- celebratory vino x

StealthOfficialCrispTester Fri 17-May-13 18:15:43

Glaikit, not only can you, it's actually compulsory.
What a Friday night thread. I'm opening the wine as soon as the DC are in bed. Screw the diet.

TwentyTinyToes Fri 17-May-13 18:15:49

Oh my, am so, so, so pleased for you all. Crying here too. This has made my weekend. X

alienbanana Fri 17-May-13 18:17:17

Oh my god, that's just incredible! grin flowers

: ~ _ ~ : ' : ~ _ ~ :
\grin/\grin/\grin/\grin/\grin/
.,*.,*.,*.,*.,*.,*.*,*.*,

I have tea and gin. One for each hand. It must be an occasion

<still weeping>

Succoria Fri 17-May-13 18:19:05

Oh good Lord, I'm actually crying. What amazing news for you and your brave boy.
Xxx

Asheth Fri 17-May-13 18:19:16

Fantastic! Wonderful, wonderful news. So pleased for you and your lovely son xxx

thefirstmrsrochester Fri 17-May-13 18:19:33

Wine was out the fridge the second I saw the updat!
wine a toast to Joe x

Wow, wow, wow, wow!
So please <thicko alert> explain more...is he now cured/in remission/has it spread/long term prognosis?

Doobydoo Fri 17-May-13 18:20:56

FANBLIMMINTASTIC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!XXXXXXXXXXXXXXXX

ajandjjmum Fri 17-May-13 18:21:10

How many of us are shedding tears over a little boy we have never met? So happy for you Trazzles family. grin

sittinginthesun Fri 17-May-13 18:21:40

Oh my goodness, that is just wonderful news! xxx

DameFanny Fri 17-May-13 18:22:10

wine a toast to Joe from here too. Now, how shall I explain the grin to DH when he gets in... grin

StealthOfficialCrispTester Fri 17-May-13 18:22:35

<waves to dooby>
Nice place to bump into you grin

PurpleAlert Fri 17-May-13 18:22:49

Oh wow wow wow! grin

I have been putting off coming back to this thread this evening! Amazing news! grin

Your lovely boy- what a little fighter! flowers

Trazzletoes Fri 17-May-13 18:23:36

I promise I'll come back with more info and answer your questions later on but I have many people to speak to, 2 children to get to bed, beer to buy and drink and pizza to order.

But quickly, no he isn't in remission. It's not gone completely. But the stuff that was new last time has gone. It's still a cause for celebration, just for tonight, but that'll do me!

kohl Fri 17-May-13 18:24:43

Thank God. Oh Trazzles how completely and totally wonderful. XXXXXXXXXXXXX

StealthOfficialCrispTester Fri 17-May-13 18:25:11

woo hoo
same as before applies- this is yur thread, post on it when and if you can
Although we might have turned up with our flaming pitchforks if you'd kept this particular update from us too long

EleanorFarjeon Fri 17-May-13 18:25:54

I normally lurk on your posts Trazzle, as I don't know what to say.

But your post this afternoon made me gasp and has made my day.

How bloody fantastic!

So happy for your family.

StealthOfficialCrispTester Fri 17-May-13 18:28:23

DS who wanted soft boiled eggs for tea has got hard boiled
and this is YOUR fault grin

RubyrooUK Fri 17-May-13 18:28:29

Amazing news. What an incredible thing to happen. I know you say he's not in remission, Trazzles, but this is brilliant progress.

Having a bit of a weep. X

NatashaBee Fri 17-May-13 18:28:33

That's amazing news. I'm so pleased for you. Can't think what to post that sums up the magnitude of that news, but... wow.

toomuch2young Fri 17-May-13 18:28:55

Oh my God! grin grin grin grin
Tears here!!
Amazing Super Joe.
Am actually fairly speechless.
wine

Tears here too. You asked us to pray for a miracle. I think this qualifies smile
Will keep on praying for you and Joe.

On the last thread I mentioned Psalm 46. Those of you who read the Bible might like to look it up again - from vs 10 particularly.

Oh my goodness! That's brilliant news!

5madthings Fri 17-May-13 18:31:24

Omg what amazing news, its your miracle!!!

Amazing, def raising a toast to Joe tonight xxx

FruOla Fri 17-May-13 18:36:11

That is fantastic news! How fabulous for Joseph - and for all of you.

BreadHamBread Fri 17-May-13 18:37:54

Gosh, crying again for Joe, but this time in a very very good way. Brilliant news.

dublinmary Fri 17-May-13 18:39:28

You don't know me at all but this has inspired my second post in 6 years, wonderful news, have a joyous weekend x

PseudoBadger Fri 17-May-13 18:46:01

Oh my goodness, that is wonderful!,,

onedev Fri 17-May-13 18:47:08

That is amazing news - absolutely fantastic. I'm so pleased for you all. Definitely time to relax & enjoy the beer! Bloody brilliant! grin

Another lurker who's never known what to say on this thread, but strangely find my eyes pricking here. What a wonderful wonderful piece of news - maybe that's why there was a bit of a wait?
Sending much love to all the Trazzle family.

Fivemoreminutesmummy Fri 17-May-13 18:50:40

Oh goodness, crying here too. So so pleased for you. I've followed your journey closely and was hoping and hoping today for a miracle and you got one. Enjoy pizza, enjoy beer, enjoy tonight xxx

hellohellohihi Fri 17-May-13 18:50:51

Another one in tears here. Have followed you from the start and think of you several times a day. When I saw all the "that's amazing news" posts I scrolled up as fast as I could and had to read your post twice.

Fab stuff.

So SO happy your consultant could give you a little splodge of light.

I'm so desperately hoping this is the start of more good to come. I don't want you guys to have to this any longer. Please.

lirael Fri 17-May-13 18:51:45

Have never posted before on your threads Trazzles, but just have to say - WHOOPEE!

LadyMacbethWasMisunderstood Fri 17-May-13 18:51:51

Bless you and Joe.

The highlight of my day to read this. You and your precious boy have touched so many.

PoppyWearer Fri 17-May-13 18:53:15

Woop! Go Joe!!!!!!!!!!!

spiderlight Fri 17-May-13 19:00:16

gringringrin

HairyPotter Fri 17-May-13 19:01:13

Absolutely fantastic news!! In tears now thinking about you all. So happy grin

Howstricks Fri 17-May-13 19:02:46

How incredible and what a wonderful outpouring of joy for Joe from everyone. It really gives you back some faith. Hope the pizza and beer are delectable x

peggyblackett Fri 17-May-13 19:05:34

Fantastic news! Utterly fabulous.

hellhasnofurylikeahungrywoman Fri 17-May-13 19:07:01

That news has made my year. Keep going Joe, you're amazing.

corblimeymadam Fri 17-May-13 19:07:30

Message withdrawn at poster's request.

SarahJinx Fri 17-May-13 19:09:30

So, does this mean no relapse? Treatment is back on track? Joe has a fighting chance.....?

TheOldestCat Fri 17-May-13 19:10:02

What wonderful wonderful news! My goodness! X x x xx

Heavywheezing Fri 17-May-13 19:11:07

Wonderful news! Much love to the frazzle family.

Heavywheezing Fri 17-May-13 19:11:40

But much more love to the trazzle family!

tholeon Fri 17-May-13 19:12:13

Hurrah, drinking a toast to you all. X

Kalypso Fri 17-May-13 19:12:26

Oh my god Trazzles,I've been away and have been thinking about Joe so much. I can't believe it. What wonderful,wonderful news! What an awesome little boy Joe is. Go Joe!
I have an appointment to discuss blood donation and we are all on the organ donor register smile

GoodbyePorkPie Fri 17-May-13 19:12:50

Another lurker delurking to send you love and congrats. What wonderful news for your family!

flowers

Wonderful news, Trazzles ! grin

FoodieToo Fri 17-May-13 19:14:23

So so delighted for you. What a time you have had.
I am checking all day for updates.
I could not quite believe it.
Tears of joy for you and your beautiful boy .
Enjoy pizza and beer,so well deserved x.

Howstricks Fri 17-May-13 19:14:40

Heavywheezing...I'm willing to bet the Trazzles do feel frazzled at times..and anyway they're quite a nice crisp. smile

travellingwilbury Fri 17-May-13 19:16:07

Woohoo ! Happy happy weekend !

It has made mine , I can only imagine what you and your family must be feeling .

CloudsAway Fri 17-May-13 19:16:13

I am so, so pleased for you!! I have been thinking about you all day today, hoping for good news, and what fantastic news it is!

TicTacSir Fri 17-May-13 19:17:42

So miracles do happen!
I am utterly at a loss for words. Having had the dreaded C hanging around several friends lately, and reading about Joe, I'd braced myself for bad news tonight.
Enjoy your beer Traz grin
Now I'll pray for two more little miracles (things come in 3s right?!)
X

dogsagoodun Fri 17-May-13 19:18:07

Oh thank God. I have been reading, hoping and praying. Enjoy your celebrations tonight.

CelticPromise Fri 17-May-13 19:22:24

Amazing. Wonderful news. Happy weekend Trazzle family x

Such wonderful, wonderful news. Crying with you here!

Beazy's MRI was clear yesterday and the little girl we know IRL who had neuroblastoma also had a good result from her dye test. So good news does come in threes! Thank God!

I know it's far from over for any of us and will continue to pray, but meanwhile am concentrating on rejoicing grin

infamouspoo Fri 17-May-13 19:23:20

such great news. So pleased. Have a great evening smile

StealthOfficialCrispTester Fri 17-May-13 19:23:26

Well I mentioned a little girl near me who is being treated fir cancer. She had an op earlier this week which apparently went well :-)

Incapinka Fri 17-May-13 19:25:21

More tears here. Started reading the thread and got inspired so stopped reading thread to sign DH and myself up to visit the vampires and give blood for the first time. That sorted I return to thread to read that clever superzimmer Joe has managed to banish it from his head. That boy is an absolute star. Bravo Joe, bravo Trazzles and family and wish you all a very special weekend. Big unMN hugs to you all xxx

(DH had to leave the room - think he was blubbing too!)

thefirstmrsrochester Fri 17-May-13 19:31:27

What a week for positive news.
Praying woop woop for Beazy's MRI news and for the little girl you know and also the little girl stealth knows of.
It's a lucky lucky week.

kissmyheathenass Fri 17-May-13 19:40:23

Wow! Just Wow! Wonderful news Trazzle. Enjoy your evening.

Nordicmom Fri 17-May-13 19:41:30

So happy for you all , what wonderful news! Sending our love smile

Rowgtfc72 Fri 17-May-13 19:47:52

Brilliant news, Trazzles grin

ReindeerBollocks Fri 17-May-13 19:52:11

Amazing news — go Joe and Trazzles!!

Am like this —> grin for you both

Hassled Fri 17-May-13 19:53:34

Oh Trazzle - am just so delighted I don't know what to say. That is BRILLIANT.

RachelHRD Fri 17-May-13 20:04:11

Wonderful news Trazzle smile

Enjoy that beer and pizza xxx

bobkate Fri 17-May-13 20:14:14

Whoopwhoopwhoopiedowhoop grin Wow, that's amazing. What a huge boost for you all. So delighted that the consultant was able to deliver such positive news for you ( and to not keep it hanging over your head all weekend ).
So over the moon to have read this smile. Brill, just bloody brill grin

Excellent news!
Love that consultant for not leaving you waiting all weekend!

MelodyBaker Fri 17-May-13 20:19:16

I am so so happy for you trazzle grin. Joe is such a amazing boy, miracles really do happen grin grin

Doyouthinktheysaurus Fri 17-May-13 20:24:12

Oh wow, that is such positive newssmile

I'm so pleased for you all to have some good news at last, I hope you have the most wonderful weekendthanks

grin

barefootcook Fri 17-May-13 20:27:03

Oh Trazzle - that is awesome news! Tell us more! I really hope Joe goes from strength to strength now. Hope you had a good night celebrating too.

ChasedByBees Fri 17-May-13 20:28:37

Amazing, amazing news!

Wow. What amazing news. So so happy for you all.

domesticslattern Fri 17-May-13 20:38:41

That is super news about both Joe and Beazy. Am so pleased for you both. <clinks beer>

LatinForTelly Fri 17-May-13 20:40:16

Hooray, hooray and a thousand hoorays!

grin grin grin

Have been checking in and thinking of you so much for the past two days. How bloody dreadful the waiting must have been for you.

Such fantastic news. I have a stupid grin on my face and something in my eyes I think xx

Gowaygoway Fri 17-May-13 20:44:35

Another lurker here wishing you all the best. What wonderful news! Have the best weekend.

MrsFrederickWentworth Fri 17-May-13 20:45:48

That is wonderful.

Take a deep breath and enjoy this weekend, you and P4B.

Too moved to say more, tears watering keyboard.

Turquoiseblue Fri 17-May-13 20:46:23

Lovely news . Have followed and thought if your lovely family and gorgeous boy, much love to you All

CoteDAzur Fri 17-May-13 20:52:46

Trazzle - I'm so happy for all of you. I hope you are celebrating with a glass of bubbly tonight grin

clucky80 Fri 17-May-13 20:53:55

I am a total lurker but have been following and posted on previous threads about your beautiful Joe. I am so thrilled for you all, what fantastic news - I am so emotional for you all! Have a lovely evening x

blizy Fri 17-May-13 20:55:15

Amazing news trazzles! Enjoy your beer and pizza and for now you can celebrate! I am wiping away tears of joy for super Joe!

Theonlyoneiknow Fri 17-May-13 20:55:46

What great news, whoop whoop!! Xxx

Bluebell99 Fri 17-May-13 20:58:09

Great news smile

elfycat Fri 17-May-13 20:59:51

Hope that this is the first of many parts of good news coming your way.

I gave blood a couple of weeks ago, spurred on by thoughts of Joe and how little effort/pinpricks it would cost me compared to what your little man has been going through.

I think it may have taken about 5 mins to give my pint the nurse was quite surprised at the speed If anyone is umming and ahhing over the idea I'd suggest giving it a try and then laughing at yourself about an hour later. I'd also suggest not letting your 2yo remove the plaster the next day - that was MORE painful!

StealthOfficialCrispTester Fri 17-May-13 21:02:46

Completely agree. The fingertip pinprick is the painful bit.
(if they still do that...it's been a while blush)
Woman at work gave me a no to call about getting the blood bus on campus. Will follow up on Monday

I clicked on the thread and almost couldn't look. I just laughed and sobbed at the same time!

Great news smile

StealthOfficialCrispTester Fri 17-May-13 21:04:48

Hope Trazzle is drinking wine and relaxing. I feel like a weight's off my mind - can't imagine what this must feel like for them!
Also I hope she had a witness to the phone call - am I the only onw who would be thinking "did he really call or did I dream it? Did I misinterpret what he said"?
(BTW whenever I've thought that I was always right first time, and the second guessing was wrong grin)

Jbck Fri 17-May-13 21:07:17

Fabulous news, I read all your news of Joe and never really know what to post as most people say it more eloquently or have helpful information but I couldn't not say how lovely this is to hear.
Enjoy the beer n pizza, it's a great night in the Trazzle house.

I am genuinely in tears here. Completely and utterly overjoyed and delighted and utterly amazed.

Also completely convinced that the nest of vipers have somehow caused this by waves of love and positive thoughts being wafted your way (no scientific basis for this assertion, at all. Ben Goldacre might just strike me off his mailing list)

Whatever mysterious process has caused this miracle, long may it continue so to do

grin grin grin grin grin grin grin

elfy I am soooo impressed with your blood letting, You weren't keen, but you DID IT.
Thank you for joining in the nagging gentle persuasion.

This thread makes me feel very humble and grateful.

DisappointedHorse Fri 17-May-13 21:11:35

I filled up when I read your update Trazzle! It's amazing, amazing news and I'm so happy for you all.

Wishing you all the luck and love for your journey ahead.

QOD Fri 17-May-13 21:14:28

grin

LegoAcupuncture Fri 17-May-13 21:23:21

Amazing!

BoreOfWhabylon Fri 17-May-13 21:24:38

Another one here tearfully delurking at your wonderful news x

LegArmpits Fri 17-May-13 21:24:52

It's just bloody marvellous and I hope (and bet!) that your pizza is the sweetest thing you've ever tasted. I toasted you all when I opened my posh cider earlier - hope this all goes from strength to strength. X

Isitjustmethen Fri 17-May-13 21:31:19

This has made my day. There aren't words to express how happy I am for you all. I know there is still a long way to go, but I am overjoyed that the news today was as good as you could have asked for.

Umanayana Fri 17-May-13 21:31:45

<delurks> Wooooooooohooooooooo! <relurks>

So happy for you all, enjoy this evening you deserve a celebration

whymummywhy Fri 17-May-13 21:56:49

What wonderful news for such a special family. Have an amazing weekend x

GoingGoingGoth Fri 17-May-13 22:18:08

Such good news grin xxx

BuffyFairyTopsTheTree Fri 17-May-13 22:18:10

Amazing news! I cried tears of joy. So, so happy for you. Praying it's the start of more positive news to come.

Enjoy the pizza and beer! Xxx

DearlyDepartedMrsFinch Fri 17-May-13 22:31:37

Fantastic news! So happy for you and Joe!

Ohwooisme Fri 17-May-13 22:35:37

Am so very very pleased to read your update! Hope the Trazzles are enjoying their pizza and beer!!!

SerBrienne Fri 17-May-13 22:35:57

I'm crying. Well done Joe ...

Trazzletoes Fri 17-May-13 22:39:22

Ok, so here is the current situation as we understand it...!

We have had some incredible news today. Joe has undergone some re-scans this week and they have shown that the areas of cancer in his head that were "new" have now disappeared!! The area of cancer in his femur that has been there since the beginning also showed up more faintly on the scan.

Joe's Consultant was stunned by these results. The Doctors are at a bit of a loss for how to explain this but they think that, as Joe's immune system has recovered from the high dose chemo, it has noticed these areas of cancer and, as they were quite small and weak, it has got rid of them. They aren't certain that's the explanation though! They are aware of this having happened before but it doesn't seem to be within the experience of any of the Doctors at the hospital as it is so rare.

As a result, Joe is back on his original treatment programme and starts 3 weeks of radiotherapy on Monday. This will target the area of the original tumour and has its own side effects and risks.

Because what has happened is so unusual, the Doctors can't say what the long-term effect will be. It is possible that Joe's prognosis could be worse than other children because the cancer has already returned so it is more likely to come back again. It is also possible that, if his immune system has targeted these cancerous areas now, his long-term prognosis could be better. Or this episode could make no difference at all. However, it seems that Joe is broadly back in the situation that he would have been in had these areas never appeared.

Obviously there is still the possibility of a relapse at any point but for tonight we are celebrating!

dinkydoos Fri 17-May-13 22:40:19

So so Happy for you. You deserve this!

SoupDragon Fri 17-May-13 22:42:30

shock

Amazing!!

Almostfifty Fri 17-May-13 22:43:27

Oh Trazzles.

There's hope. That's what you've got to hold onto.

I can just see him wandering around with his Zimmer.

Bless him, I just hope with all my heart he continues to zap this shitey, horrid disease.

PseudoBadger Fri 17-May-13 22:43:52

It's so wonderful xx

Millie2013 Fri 17-May-13 22:54:24

I checked into this thread tonight with a very heavy heart, but I'm now sitting here with "something in my eye" and a big smile. Enjoy your celebrations, they are overdue and so well deserved xx

WouldBeHarrietVane Fri 17-May-13 22:57:39

Oh trazzles!! So pleased to hear this!

xxx

Trazzletoes Fri 17-May-13 22:58:16

grin

We got the news over the phone and I did pass the phone to DH and asked the Dr to tell him exactly what he had told me so that I couldn't be imagining it!

Ragusa Fri 17-May-13 23:00:15

Ah Trazzles, thanks so much for updating. Love to you all xx

BIWI Fri 17-May-13 23:02:44

Oh my goodness! That sounds brilliant. I am so please for you and for Joe flowers wine

Hellenbach Fri 17-May-13 23:03:45

Have been following your posts.
So,so happy for you, what wonderful news!

paranoid2 Fri 17-May-13 23:04:57

A religious lurker at home and work but have never posted as never feel I have something sensible to add. However todays news is just great and goose bumping

D0GWithAYoni Fri 17-May-13 23:06:52

Oh trazzle. I have tears. I'm so so pleased for what sounds like very positive news. I'm not really a believer in god but ill be talking to someone and hoping this carries on smile

Liz79 Fri 17-May-13 23:11:14

grin yaygrin

onedev Fri 17-May-13 23:15:04

You have to celebrate where you can. Go Joe!! We're all backing you & loving you & hoping for the very best. Much love & prayer beautiful boy. xxx

TwoCrazyKids Fri 17-May-13 23:20:34

Amazing news!!!! Big hugs and kisses for how from all his mumsnet aunties!!!

BarmeeMarmee Fri 17-May-13 23:23:08

Hooray Trazzles, that's amazing! Quite right that you should be celebrating! Hurrah!!

Trumpton Fri 17-May-13 23:23:35

Tears in my eyes at your news. Go Joe go !!!

mrsdinklage Fri 17-May-13 23:39:06

Soooo pleased for Joe and all the Trazzles bearwineflowers

saffronwblue Fri 17-May-13 23:47:40

Oh Trazzle I am delighted at this news. My splodge of light will be like fireworks!
I understand that it is complex and not black and white but I am so pleased you can celebratethis now.xx

ninja Fri 17-May-13 23:49:38

grin so happy that the news was good.

Have a great weekend x

Thumbwitch Sat 18-May-13 00:49:56

That is great news! So happy that the scans showed something more positive for a change, and we'll keep praying for the miracle that is his recovery.
Have a lovely weekend! thanks x

hellohellohihi Sat 18-May-13 01:32:40

Tonight trazzle I looked at my DD's little body as I got her ready for bed and even the thought of something disrupting her perfect little body (let alone being the reality) made me so angry and heartbroken in equal measure. I have no idea how you've kept your composure in every post.

You and your wonderful little boy have my utmost respect.

Love from the Essex coast xx

barefootcook Sat 18-May-13 02:34:41

So there is hope Trazzle. I'll keep going with the candle lighting, prayers and positive thoughts from this end of the earth. Hope the treatment goes well next week.

MyShoofly Sat 18-May-13 04:18:28

Oooh sending a prayer out into the universe Trazzle...It's not over yet - there is still hope!

tholeon Sat 18-May-13 06:01:31

I hope you have such a lovely celebratory family weekend all together before treatment starts again on Monday. X

Theironfistofarkus Sat 18-May-13 06:42:09

Never posted on this thread before but have been watching and willing little Joe to get better. Am not religious but this sounds like a miracle if ever there was one! So, so happy for you! Best of luck with the radiotherapy next week.

scarecrow22 Sat 18-May-13 06:49:32

been reading all night and every time I have tears in my eyes for you. x

Chathampocket Sat 18-May-13 06:54:33

So happy with this news, you have been in my thoughts so much x

lougle Sat 18-May-13 07:52:30

Wonderful, wonderful news. Wonderful. Every time the scan doesn't make sense is a day to be overjoyed.

DNiece has Rhabdoid Tumour and every scan is expected to bring news of spread to other organs. So far, no. They keep sending the samples back to be tested because it just isn't behaving as it should.

Let's cheer for those stupid tumours that can't even do what they're meant to do grin

BibbityBotBot Sat 18-May-13 07:52:32

Amazing news! So happy for you x

minmooch Sat 18-May-13 09:09:50

Wonderful news Trazzles, just wonderful. I know there's a long road ahead but you can take the next few steps with some positive news.

And P4B wonderful news that Beazy's MRI was clear.

May the good news keep coming xxxx

Oh, my I was scared to open this thread: I am so delighted for you and Joseph!
This has made my day - I am so v happy for you all smile
I hope you all have a lovely weekend x.

Velve Sat 18-May-13 09:20:24

Crying on a Saturday morning!! That is such amazing news, I am so so so very happy for you all!

Hmmkay Sat 18-May-13 09:30:45

So pleased you've had such positive news!

crashdoll Sat 18-May-13 09:31:14

I think there's something in my eye! <sniffs> Must be hayfever!

Words cannot express how happy I am for the Trazzle family that there is a good news. Go go go go, super Joe. You have the whole of MN behind you. Big LOVE and huge smiles. grin grin x

StealthOfficialCrispTester Sat 18-May-13 10:30:08

Really enjoying this thread smile
And P4B I meant to say that I'm pleased to read your good news as well.

Trazzletoes Sat 18-May-13 10:35:00

Oh min thanks so much for your lovely words. I so wish there was something I could say that would bring some comfort to you.

P4B delighted to hear your results!

Just in case you missed it last night trazzles

Happy dance

~*,*~*,*~**,'*~***~*~*~*~,*~,*,
\grin/\grin/\grin/\grin/\grin/\grin/\grin/\grin/
~*,~*?~*~*,~*,*~,*~*,*~~*,~*~~

I cannot believe this has happened to you, I have hoped and wished it for you, but for it to actually happen is absolutely amazing.

Trazzletoes Sat 18-May-13 11:08:01

I saw it Fizzy I read every post. But there's no harm in another one!!!

We can't believe it's happened either. We are still in shock I think!

Halfling Sat 18-May-13 11:08:45

I am crying right now with happiness!

superfluouscurves Sat 18-May-13 11:17:31

Brilliant stuff! grin Well done to all of you x

ShowOfHands Sat 18-May-13 11:20:50

If I had a bell I'd bloody ring it. Would a toot on dd's recorder have the same effect?

Brilliant brilliant brilliant to have some good news. I am SO pleased for you.

Oh, and I put forward your suggestions for our supported charity and they made the short list, but CLIC Sargent was voted for. So I'm sorry, but I think CLIC Sargent have a presence in LGI (?) so I hope joe will benefit in a small way from it. smile

sassytheFIRST Sat 18-May-13 11:40:40

So thrilled to read this. Has made my day. smile

Big hugs to Joe and to you, tracked

sassytheFIRST Sat 18-May-13 11:41:18

Effing autocorrect!

That meant to say and to you, trazzles !!

Smartieaddict Sat 18-May-13 11:42:47

So so pleased to read this! Go Joe!!!!

Engelsemama Sat 18-May-13 12:17:12

Wonderful news. x

oneandnomore Sat 18-May-13 12:31:09

Brilliant news!
grin go Joe!

Have a lovely weekend.

nothruroad Sat 18-May-13 14:26:58

What fabulous news! Have a great weekend. Thinking of you all.

Hulababy Sat 18-May-13 16:09:12

Lovely positive news!

goygoy Sat 18-May-13 16:24:02

What great news, enjoy celebrating this weekend!

catclarks Sat 18-May-13 18:48:31

A long time lurker here to say what wonderful news. I hope you enjoyed a well deserved cheeky wee beer last night grin Onwards and upwards!!

pinkhousesarebest Sat 18-May-13 18:58:16

Such wonderful news so richly deserved. So delighted for you all.

Quangle Sat 18-May-13 21:01:11

Oh wow! How wonderful! Raising a glass to you all from here xxx

VenetiaLanyon Sat 18-May-13 21:28:03

What encouraging news; so glad to hear smile

Trazzletoes Sat 18-May-13 22:51:14

Fizzy thank you.

CLIC Sargent is a great charity. We don't have a huge amount of involvement with them but we do have some and they are fab. They also give a non means-tested grant to every family of a child diagnosed with cancer - money that is sorely needed on diagnosis for travel costs, additional childcare, food...

ItsNotUnusualToBe Sat 18-May-13 23:11:51

How wonderful that you have had such positive news. As promised, I gave blood earlier this week.

Wishing you peace love and happiness. And good health all over the place.

YAY for itsnot smile

That is fabulous news! smile

marthamydear Sun 19-May-13 00:19:06

Such fantastic news! It's so good to hear xx

(I feel rude posting on Trazzle's thread but thanks for the well wishes for Beazy, too.)

pepperrabbit Sun 19-May-13 21:26:28

What great and unexpected news grin.
So pleased to hear this. x

BiBiBroccoli Sun 19-May-13 23:53:14

Oh I am just so utterly delighted to read your latest news. Just brilliant!

FuntimeFuschia Mon 20-May-13 20:42:29

I have watched from the beginning but never posted as I never had the words. I still don't have the words, but I have tears in my eyes and hope for you, your family and your fabulous little boy.
Thinking of you all.
Much love.

Ragusa Mon 20-May-13 21:19:33

Hi Trazzles, hope you had a good weekend and gained some strength for whatever this week brings. No doubt the radiation therapy won't be a walk in the park but I hope it'll be bearable. I hope it doesn't involve any more long hospital stays and that you're still taking some comfort in the better news from last week.

Been thinking of you today trazzles and the phase to come. Back to crossing gingers and lighting my candle for Joe. Much love and brew

IwishIwasmoreorganised Mon 20-May-13 22:13:21

Trazzles,

I've lost touch recently but am overjoyed to hear the results of Joe's latest scans. I appreciate that there's still tough times ahead. I seem to remember that they rushed you in to get Joe measured up for his radiotherapy "just in case". Good job they did!

Hop he continues to get stronger and you get lots more happy family time together.

Xx

Hope the radiotherapy is going smoothly so far.

Elibean Tue 21-May-13 12:36:09

Yay for Joe!! So glad to read the latest, Trazzles, and wishing you every bit of luck and stamina for radiotherapy (and life with two small children in general!) smile

Not allowed to give blood, but can and do support CLIC S. Will think of Joe next time I do, along with the other MN children who may have had contact with them in some way xx

youarewinning Tue 21-May-13 20:04:07

Wow.

Had a shit day.

now grin grin grin grin grin

and just for good measure

grin grin grin grin grin

Just checking in with a Wednesday splodge smile

ninja Wed 22-May-13 21:17:13

splodging as well. I imagine you must be knackered this week with all the emotion last week.

I think you said the radiotherapy was starting this week, so I hope that's going well and that you're still managing to have some nice family time.

Trazzletoes Wed 22-May-13 22:46:51

Hi, radiotherapy is going fine so far, thanks. Just early mornings... I'm not used to them!! DD was poorly on Monday, perfectly fine yesterday and then poorly again today (this after a totally unnecessary ambulance ride on Sunday for her and me). Really hoping she starts to feel better soon! It makes me very on edge to know there are d&v germs in the house.

J is coping really well with the daily anaesthetics and they aren't expecting him to have any side effects until next week or the week after.

He has started sucking his thumb again <sigh but its so cute!> and he has also started drinking milk again at bedtime and first thing after he wakes up from his anaesthetic... The first day he got really cross with me(!) because I had only got him steamed milk and not hot chocolate grin.

The people from Make a Wish came round this evening to speak to Joe. He was very charming and came out with some brilliant lines to the people who came. They think that it could even be possible for us to get to Florida shock. I am not getting my hopes up because no doubt it won't be possible because of Joe's treatment regime but my word it would be incredible

Ragusa Wed 22-May-13 23:28:32

Oh, I so hope you can go to Florida. That would be fab. What did he say to the Make a Wish people?

Glad to hear everything is going OK with radiotherapy so far. But ambulance trips? that sounds disturbing...

Brilliant about the milk and hot chocolate. I bet you'd willingly give him gallons of it.

5madthings Wed 22-May-13 23:32:01

So glad all is going well, aww to thumb suckimg, my ds4 still sicks his, its very sweet smile

Hope dd is better ASAP and omg how amazing would Florida be! Obviously you would Mich rather not be in this situation but as you are take whatever help, support etc you are offered.

Much love and strength xxx

Whatalotofpiffle Wed 22-May-13 23:36:04

Sending love to you all xxx

Trazzletoes Thu 23-May-13 06:31:22

I know re: ambulance! DD was really wheezy on Sunday and breathing noisily and fast. It sounded like a mild asthma attack so I called 111 to get an OOH appt. because she's still little and was having breathing difficulties they insisted on sending an ambulance for her. Popped her on a nebuliser and by the time we were at hospital she was back to her cheeky self in a "really? Why did she need an ambulance?" Way. blush still it got her sorted out quickly.

J was so cute though. Telling her not to worry about the mask and not to be upset when they put the sats monitor on because it wouldn't hurt and she would get used to it etc ...basically things you should never hear a child saying!

Joe was just making me laugh last night with his wishes because he's 3 and doesn't really understand these things. They asked whether he would rather go to Florida to Disney or meet Fireman Sam. So of course he says meet Fireman Sam...

StealthOfficialCrispTester Thu 23-May-13 06:48:19

That's so lovely

TwentyTinyToes Thu 23-May-13 07:38:17

Ahh bless Joe. He sounds like such a sweetie. Really hope Florida becomes a reality. X

What a lovely, thoughtful and kind boy you have there Trazzles. And glad DD was ok after being nebulised. May the D&V germs feck off soon.

I've just been looking at the Make A Wish website. What an amazing organisation. And grin at Fireman Sam. Love that meeting him is his preferred option. Got to love a 3YO's perspective.

ToffeeWhirl Thu 23-May-13 10:00:01

What an absolutely adorable big brother Joe is to his little sister. It's very sweet that he was using what he's learned in hospital to help her. Very funny that he wants to meet Fireman Sam more than go to Disney World grin.

I hope your DD is feeling better today and that Joe is continuing to cope well with his daily treatment.

saffronwblue Thu 23-May-13 10:46:18

I love that Joe was such a part of the Make a Wish meeting. I bet they adored meeting him. Fingers crossed for Florida ( if that is what all the Trazzles most want).

RubyrooUK Thu 23-May-13 10:53:00

Bless Joe and his medical reassurance for your DD. What a sweetie. Hope you do get to go to Florida but clearly Joe would also be thrilled with meeting Fireman Sam. smile

tholeon Thu 23-May-13 11:25:50

Dear Joe, that is so cute that he was giving his little sister advice, but sad also that he knows so much about medical stuff. Will make a donation to make a wish, then i will feel like I am doing something for him. Also - for others - have discovered something called give as you live where a donation is made to a charity of your choice every time you Internet shop, worth googling. Glad little dd is on the mend, I think they were right sending the ambulance, you can't mess with babies and breathing stuff. Sorry about the d and v as well though! Really really hope you make Florida x

VenetiaLanyon Thu 23-May-13 13:05:19

Glad DD was ok; really hope that Fireman Sam or Florida materialises for Joe.

Heavywheezing Thu 23-May-13 13:12:25

My friend, when I was in school went to Florida with make a wish or dream flight and she had an amazing time.

Florida is lovely for children, maybe everybody could get their wish.

ninja Thu 23-May-13 18:19:57

aaah - he sounds so lovely and far too wise for his years. I'm glad he's continuing to cope with the treatment and there must be part of you glad to see him sucking his thumb, just because he can!

gingers crossed here for Florida too, or whatever works best for all of you.

Joe shouldn't have to know about masks and sats monitors BUT as he does isn't it great that you and the medical team have done such a brilliant job of ensuring he understands (as much as needs to) and he isn't scared by it. Well done you smile

kohl Thu 23-May-13 20:10:31

Great news about Florida being on the cards, still praying and splodging for you guys.

bobkate Thu 23-May-13 20:41:24

Thanks for the update, what a love - trying to reassure his little sister! Gorgeous boy. Glad the radiotherapy is going ok so far and that he's tolerating the daily meds ok. Will keep splodging away for you and him and hoping the D&V bugs bugger off quicksmart x

TiredFeet Thu 23-May-13 20:41:54

aww bless Joe he sounds wonderful. will keep my fingers crossed for florida and fireman sam! he deserves it for sure.

what a lovely big brother he was! and don't be embarrassed about the ambulance ride, it was the 111 operator's decision and I am sure it is best that the err on the side of caution.

MooncupGoddess Thu 23-May-13 21:52:01

That's brilliant and I bet Joe loved being able to reassure your DD with the benefit of his superior experience!

Trazzletoes Fri 24-May-13 14:08:19

We are just sat in hospital waiting for Joe's blood transfusion to finish. THANK YOU SO MUCH FOR YOUR BLOOD!!!!!!!

Just had a chat with Joe's consultant about various things and also talked about Make a Wish. He, quite sensibly, thinks nothing (ie none of the potential wishes) would be possible until Joe has finished his treatment but they should all be possible then so fingers crossed! We will see, anyway.

Portofino Fri 24-May-13 14:19:45

He sounds so lovely Trazz. It must be lovely having him a bit more back to his normal cheeky self. I have never heard of Make a Wish but will have a look at making a donation. xx

superfluouscurves Fri 24-May-13 14:29:23

Just thinking of you Trazzles You must be thoroughly sick of sitting in hospital waiting rooms!! Hope transfusion goes OK. Good to have potential trip to look forward to x

cestlavielife Fri 24-May-13 14:29:50

ah i am sure they can get fireman sam to visit him in hospital smile

i know lots of medically fragile kids go on makeawish to florida they have nursing teams etc. hope he is ok soon to be able to go

YAY for mumsnet blood! It is the very best kind, although Joseph might develop a slight viperish streak and a penchant for gin smile

If Joe happens to be A+ I will be topping up supplies on Tuesday grin

Trazzletoes Fri 24-May-13 16:15:04

A-!!! So close... grin all blood welcome though! Thank you xxx

hellohellohihi Fri 24-May-13 16:19:40

How's he been this week trazzle? Will you get to spend much time all together at home this weekend?

A anything are the best blood groups grin Joe is just a bit more rare and special than me grin

I'm just boring O+, but I'm in good company apparently, so is the queen! Elizabeth, not Justine grin

toomuch2young Fri 24-May-13 20:28:00

Oh fantastic news that the treats are on the cards and wonderful for mumsnet viperish blood grin.
What a lovely boy and brilliant big brother to reassure his little sister like that. [sob!]
Gingers crossed for a peaceful and relaxing weekend for you.

YAY for northern and her luvverly blooooooodsmile

Badvoc Fri 24-May-13 21:46:42

Oh he is so wonderful isn't he!?
smile
Still thinking of you all xxxx

Portofino Fri 24-May-13 21:50:00

Ah I am A- but in Belgium where they don't want it due to mad cow disease in the 90s.

Did you have mad cow disease Porto? I always thought there was something strange about you wink

Trazzletoes Fri 24-May-13 23:55:28

Fizzy me too grin common as muck...

J has been great all week, if a bit tired but that's to be expected due to the treatment and daily anaesthetics.

He is getting stronger and can now stand and take steps with only a little support.

His fingernails are starting to go though and DD ripped his thumbnail off today (yuck!) so have to try and stop that from getting infected. That's yet another side effect from the high dose chemo that we were expecting but it's still disgusting. I hate nails!

We are spending tomorrow with DH's family and then hoping to go to a Sealife centre maybe as the Octonauts are visiting! Joe is just a little obsessed...

Trazzletoes Fri 24-May-13 23:57:10

Just to clarify, Joe's consultant thinks he won't have time to do anything amongst all the treatment, not that he won't be well enough. Although he might not be feeling that great!

MrsFrederickWentworth Sat 25-May-13 00:08:01

Trazzle, lovely to hear this though Sorry about the nails.

Fireman Sam is wonderful.

Isnt he full of emotional intelligence? What a delightful person he is.

Glad the ambulance got dds breathing better fast.

Hope the weekend is good.

StealthOfficialCrispTester Sat 25-May-13 07:24:15

Am still lurking and pleased things seem to be going as they should
Hope you enjoy the weekend

StealthOfficialCrispTester Sat 25-May-13 07:28:08

and nother blood request sent. I don't remember it being this difficult in the past, and they also used to have a session in the village next to ours. Think I just used to drop in which would imply the last time was 6 years ago+
I am B+

onedev Sat 25-May-13 08:36:03

Fantastic updates (other than his poor nails!) long may it continue. xx

Portofino Sat 25-May-13 20:02:16

Glaik, no mad cows disease here, thought it might explain a lot. The Europeans are still very suspicious though.

onedev Sat 25-May-13 20:06:46

The Americans are very suspicious too - wasn't allowed to give blood at all when we lived there - quite scary really, makes you wonder what they know that we're being kept in the dark about! Anyway Trazzles, I can & do give in the UK, & when it's my turn again, I'll definitely be thinking of Joe.

ToffeeWhirl Sat 25-May-13 20:16:09

Ooooh, Trazzle, my blood is A Rhesus Negative! It's good to think my blood might be helping Joe - and the alcohol level in it might help him sleep wink.

Really hope you made it to the Sealife Centre today.

ChippingInLovesSpring Sat 25-May-13 20:25:46

Unbelievably brilliant news grin grin Fabulous. Amazing. Incredible. Just wow grin

I donated blood again this week, unfortunately it's not A- but maybe one of Joe's new little friends might get it instead smile

Biggest happy hugs
xxx

lougle Sat 25-May-13 20:29:45

Lovely to see that things are moving forward for Joe smile

Trazzletoes Sat 25-May-13 20:36:03

Things are moving forwards... He took a couple of tentative steps today while not holding on to anything!

LegoAcupuncture Sat 25-May-13 20:37:26

Go Joe! What an amazing boy.

CotherMuckingFunt Sat 25-May-13 20:41:39

I'm so happy to be reading these updates smile

lougle Sat 25-May-13 20:45:56

What a boy grin

chezchaos Sat 25-May-13 20:47:30

Just checked

chezchaos Sat 25-May-13 20:48:54

* posted too soon!

Just checked in for the first time in a couple
of weeks - fantastic news!

ajandjjmum Sat 25-May-13 21:28:17

Hope you're having a great Bank Holiday Trazzles family! smile

shallweshop Sat 25-May-13 21:37:52

OMG, just caught up with this update - bloody brilliant news! Joe is one special little boy. x

BestIsWest Sat 25-May-13 22:03:38

Delurking to say what wonderful news. Have been following your story since the start and you are often in my thoughts. Brilliant fantastic news. You are so brave. Hope you all have a fantastic Bank Holiday.

ShiftyFades Sun 26-May-13 09:07:42

Fantastic news, I've shed a few tears this morning.
It's taken me a while to catch up after missing a month whilst my dad was in hospital. Last night I was crying about the dreadful news you'd had... And this morning I'm crying at a miracle and all the renewed hope. Joe and you are amazing grin

Despite not being able to catch up with the threads, I have thought and prayed for Joe every single day. You are never far from my thoughts.

Anyway it's nice to be back, fully updated and reading the best news grin

Trazzletoes Sun 26-May-13 09:12:07

Oh massive hug shifty yes, a lot has happened in the last month! It's, er, been something of a roller coaster grin

Trazzletoes Sun 26-May-13 09:12:27

I hope your Dad is ok x

Morning trazzle! Did you get to see the octonauts yesterday?

Sorry it's today! Doh, must retain information better!

Trazzletoes Sun 26-May-13 09:23:41

Haha actually would be tomorrow but I'm not sure whether we will go - DH doesn't seem keen (there are perfectly valid reasons for this not related to Captain Barnacles). We shall see.

Had a lovely day in the sunshine with family yesterday and staying in and doing housey/ garden type jobs today.

Good to hear! I too should be doing housey/ garden things, but I'm not feeling it today! I'll have and other brew see if that kick starts me!

Trazzletoes Sun 26-May-13 09:37:45

I'm still in bed listening to DD screaming because DH won't let her climb the stairs. I ought to get up, but then...

ShiftyFades Sun 26-May-13 10:24:53

He's ok now, thank you grin
It's lovely out there, a great weekend for laundry, gardening and playing in the sun with our little ones.

I think DD is your alarm clock wink

It's cold here, but ds wants to play outside. I have delegated that to dh! While I get on inside!

toffeelolly Sun 26-May-13 11:46:01

Trazzle's just hearing this wonderful new's as I was away. Great great news your little Joe is such a little fighter what a little star, praying and thinking of him, hope your dd is better. Trazzle's this is just really great news. Come on Joewink . Also great news on little beatrice's result'swink

youarewinning Sun 26-May-13 19:59:56

I'm O-. DS is A- but it's a whole 10 years until he can donate!

Glad your DD is better - Joe sounds an aboslute delight and so mature reassuring his sister.

VenetiaLanyon Mon 27-May-13 07:49:26

Glad to hear you sounding so much perkier smile. Any wishes will probably be easier for you to deal on a practical level once the treatment is over too, as you'd hopefully be in a less stressful place. Have a lovely bank holiday.

Just a little holiday splodge from soggy Devon

And I'm sending a wringing wet holiday splodge from Warrington. Tis the premier holiday destination of choice wink if you forgot to book going to Devon

Thinking of all Trazzles whilst oop norf

Trazzletoes Wed 29-May-13 11:59:21

Thanks. Joe is still doing ok - he has been a bit sick but that's to be expected as he is having radiotherapy on his tummy and someone had forgotten to prescribe him some anti-sickness meds

Had a bit of an incident on Monday where his Hickman line ( which goes straight in to a vein in his chest) snapped while we were on a day out... Quick trip to a&e ( we had to hold on to the little bit left poking out of his chest as it would have just pumped blood out otherwise) who clamped it and sent us straight back to the Lgi to get it fixed.

Thankfully they could do that without taking it out and putting a new one in. We now have a 3 day wait to see whether it got infected while it was exposed though < tense>

We now have a little bag that goes round his neck to keep the ends in and hopefully I will have a chance to make some more for him this week although my sewing skills are only legendary in the sense of their awfulness!!! Good practice, I guess!

ToffeeWhirl Wed 29-May-13 12:22:54

Sorry about the incident on Monday, Trazzle. It sounds very stressful, to say the least. Poor boy, feeling so sick because he didn't have his anti-sickness meds. As if he doesn't have enough to cope with.... angry.

onedev Wed 29-May-13 14:26:12

That does sound stressful! Hope the sickness is getting better.

Wow, just caught up with this thread having lurked on some of the others.

What fab news!!!

So pleased for you Trazzle, Jo & family etc

Fingers crossed for a good prognosis

Trazzletoes Wed 29-May-13 14:48:20

dev thanks, it was just the once and we now have some anti-sickness meds so shouldn't get too bad! It was all such a rush I guess it just got overlooked. It's fine, if a little frustrating!

onedev Wed 29-May-13 17:31:26

You take it all so well - it's little things like that (& not so little if you're poor Joe being sick!) that could easily tip you over the edge so I honestly think its amazing you keep it all together. Glad the medicine has kicked in & it's stopped. Joe really is a trooper.

ajandjjmum Wed 29-May-13 17:52:53

So is Joe's mum smile

Ragusa Wed 29-May-13 21:29:41

Ah so glad to read all is going as well as it could do - hickmann line aside shock.

Hope the sickness passes.

Does he have to have radiotherapy on other areas too or is it stomach only?

MrsFrederickWentworth Wed 29-May-13 21:49:02

Gosh, hickman line must have been scary. Keeping gingers crossed for no infection.

How are you and dd and DH?
Good old Joe, Splodging for you all in the filthy weather down south.

Trazzletoes Wed 29-May-13 22:42:32

He only has radiotherapy on the site of the main tumour so that's the right hand side of his abdomen.

Thank goodness though as DMil had radiotherapy on a tumour in her brain and in her case it was, well, I can't really put it in to words but it wasn't a good thing. I think we would both have struggled to give consent to that. We would have done but it would have been difficult.

Neuroblastoma tumours grow round things rather than pushing them out the way like most other tumours and are also quite sticky so they do the radiotherapy to mop up any of the edges that were missed. We knew anyway that they were unable to get all of Joe's tumour out. It went too far down in to his pelvis to be completely removed safely.

Gosh that was 4 months ago now!

The Hickman line was very scary but actually I could cope with focussing on squeezing a bit of plastic. We are very lucky (Joe is at least!) that it didn't come straight out of the vein. I used to be in the St Johns but nevertheless am rubbish with blood and don't think I could have calmly applied pressure to my little boy's chest and kept him calm as well. He went crazy enough with fear when it snapped!

MrsFrederickWentworth Wed 29-May-13 22:49:43

Trazzle, thanks for explanation, there is a horrible interest, isn't there, in becoming knowledgeable about dcs' rare illnesses.

I can imagine, poor poppet. But it is over now. Would you like the MN community to make you little bags? Or is it a necessary distraction.

Wow I haven't caught up for a little while and now I feel so so overwhelmed with happiness for you, Joe and your family. How amazing!

Sending you a lot of love. And I can sew stuff so if I can help....!

Oh you poor things. Glad all is ok now. HAve they given him antibiotics anyway or they wait and see if there are signs of infection?

Oh gosh the Hickman line thing sounds really scary. GOSH gave us several bags for storing Beazy's 'wigglies' in but ours are all girly! They've got a google mail address on a label on them though so you could contact them for some for Joe if you like? I've also got some stockinet stuff (like a v stretchy mesh boob tube!) that they gave us which Beazy absolutely refuses -- I could send it if you like?

Grr re anti-sickness. That is pants.

Badvoc Thu 30-May-13 22:15:55

Blimey...sounds scary!
Hope joe is better now he has his anti sickness meds.
Still thinking of you all xxxx

LatinForTelly Thu 30-May-13 23:24:27

How scary for you and Joe, the Hickman line snapping. I hope very much there is no infection there (although hoping he is in the clear by now, it being 3 days later).

Glad he is coping ok with the radiotherapy (in spite of the sickness earlier sad)

I think of you all often, and hope Joe continues to get stronger. (DH's blood appointment is looming. I am half expecting to have to manhandle him into the bus-thingy, the big wuss.)

savoirfaire Fri 31-May-13 00:02:31

Just popping in to say well done and thinking of you all. Hope to meet Joe one day.

bobkate Fri 31-May-13 21:27:19

Just checking in too and want to say still thinking of you all and how amazing I think you all are xx

Trazzletoes Sat 01-Jun-13 00:08:36

Hi, not much to report really as Joe is still plodding along in much the same vein. Although the radiotherapy still has its own horrible side effects, these are mostly seen some way in the future ( ie. affecting growth, developing different cancers etc) so although Joe has the potential to get quite poorly in the next couple of weeks, many parents see radiotherapy as being "the easy bit" certainly as far as treatment goes for neuroblastoma anyway.

I have an appointment with Joe's consultant on Monday to find out what part of the clinical trial he has been selected for.

Joe, in himself, is probably about as good as he has been since he was first diagnosed. He is tired and gets grumpy, of course, but you can definitely see Joe again. His hair is also coming back - you can practically watch it growing!

Needless to say, I haven't got round to making bags yet I could do with a couple spare so if anyone has some spare time and scraps of material I would be terribly grateful and can pm dimensions

P4B I've not heard of that stretchy stuff... Does it come already in a tube? If it does I can't imagine it would fit Beatrice AND Joe! He is huge for a 3 year old!!!

Happy weekend everyone x

Trazzletoes Sat 01-Jun-13 00:12:02

* Northern* no antibiotics, thank goodness. It would seem that there was no infection as I assume we would have been called in if anything had been grown from his blood. Thank goodness!

With cancer they give antibiotics just in case for everything so I guess they have to draw the line somewhere to preserve their efficacy and if Joe wasn't showing signs of infection, perhaps it would be a waste of the medicine and also of a bed for 5 days as he would have to be admitted to the hospital. That then causes problems for infection control in radiotherapy and is also hugely disruptive for us.

MrsFrederickWentworth Sat 01-Jun-13 10:02:40

Good news about infection. Splodging for you.

Am not good at sewing so will see if others offer but v happy to be the sewer of last resort iyswim. Let me know, say tonight ish. ( there doesn't seem to be a noun for a sewer, I sound like a drain.)

Hope your weekend goes well.

Badvoc Sat 01-Jun-13 14:51:46

I have a sewing machine.
What is it you need trazzles?
(Am a beginner though!)

Thank goodness for no infection Trazzles and lovely to hear Joe has the energy to be himself.

And you have my sympathy dealing with a grumpy 3YO. <hard stares across the room at the flailing arms and legs which are grumping about because he can't bring woodlice in the house>

I can sew badly in fact am embarking on my first sewing challenge this week. Happy to add bag to the 12 waistbands for swirly dancing skirts I'm making. And i'm not even gin sodden on this volunteer. But do recommend you see if someone who can do a nice bag volunteers first though wink

Wiggly bag website!!

They will send you some free of charge if you request. There's also a very simple pattern on the website.

The 'boob tube' is really stretchy. I'll try it on my 5yo ds and let you know if it fits.

Have a sewing machine and I know how to use it. You will be inundated trazzles

I can knit a bag <jealous of all the sewing machines n this thread>

Trazzletoes Tue 04-Jun-13 11:28:10

We are sitting waiting for a platelet transfusion so just wanted to say thanks again for blood donation.

Joe is still doing well and we have just found out yesterday about what will happen for the last bit of treatment which is the bit that's part of the clinical trial. Joe will be getting the additional drug on top of the more standard one (although neither is available outside the clinical trial) as they are looking to see whether the additional drug improves outcomes.

It means more side effects and longer stops in hospital but we are happy that he has that side of the trial even though it is more disruptive in the short term, it shouldn't have a worse outcome than the one drug by itself and hopefully will have a better outcome.

That sounds very positive. It's great to know he's getting everything that could possibly help. I try to do a quick prayer time as I cycle to work each morning and Joe is top of my list smile

So glad he continues to improve and delighted that he is on the path you want Trazzles

I was thinking yesterday about who would have received the small bag I managed. I hope they are improving too.

When does the treatment start and how long will it take?

Thinking of you all and still lighting candles for you and your family.

ToffeeWhirl Tue 04-Jun-13 14:07:45

That's great news, Trazzle smile.

VenetiaLanyon Tue 04-Jun-13 14:12:48

Very good news smile

QOD Tue 04-Jun-13 20:08:23

Xx

Ragusa Tue 04-Jun-13 21:03:41

Fabbo. So glad all seems to be progressing as expected.

Are you getting much rest trazzles at the mo?

maxmissie Tue 04-Jun-13 21:07:14

Glad the news for Joe is all positive. Haven't posted for a while but am so pleased to hear of the good news you had a few weeks ago. Still sending love and strength and hope. xx

Trazzletoes Tue 04-Jun-13 22:40:40

Not getting much rest, no! DD has been off nursery as a precautionary measure again as chickenpox is going round. She also has a nasty cough which is keeping us both awake at night, plus Joe has to fast every day for his anaesthetic so either DH or I has to get up at 2am to turn off his overnight feed. Even when DH gets up I usually wake as well so...

Plus I haven't worked regularly since 2011 so it's quite a shock to the system getting up to function at 6am every day! In fact, I haven't done that for 5 consecutive days since at least 2009, probably 2007... But there are only 4 more sessions of this. And I can hardly complain given how much I had desperately longed to be in this position!

Just popping in with my regular nag encouragement to you all to donate a pint of the red stuff. I am FINALLY managing to take DD for her first time on Thursday. She had ear piercings, antibiotics and then double booked herself, so it has taken AGES to get her there.
Let's have your blood, MNetters grin. We Need talc to make a vampire emoticon for us

How did they choose Joe for the trial, is it random or was he selected especially? Whatever the reason, it is amazingly wonderful that he gets to grab at another chance.

So so happy to hear the good news. Hope it carries on getting better and better.
I would love to donate blood(I'm A- too, according to David Icke, us negative blood types are descended from aliens!) but I had a transfusion last November and that excludes me for life sad
Thank you to all those wonderful people who donate their lifeblood, without that the NHS would be, quite litrally, screwed.

ChippingInWiredOnCoffee Wed 05-Jun-13 01:16:17

Sorry to hear that you aren't getting much sleep and that DD is off nursery again (how are you managing with that and you working?) - but it's all such great news about Joe - I'm still gringringrin.

Have you got enough bags yet??

Last time I donated blood (a fortnight ago) they had some new fancy reclining chairs, instead of the old camp stretcher type things - they are FAB and I managed not to feel too faint at the end of it all - go the new chairs!! Especially as they were talking about not letting me donate anymore due to fainting.

As I said, I'm a B+, so no good for Joe - but hopefully one of his little friends is benefitting from it!!

I Am donating on 3rd July at my sports centre. <writes on calendar, sets phone, updates iPad> Norks as you are good at nagging, if you see me around that time can you remind me please? I am a scatter brain just now. Too much going on!

Trazzles, I'm so glad to here your updates. As you say 4 more sessions and no more early mornings for a while!

My offer of a knitted bag is still on the table. I have wool left that would match in with the hat I did. You know if he is worried about coordinating accessories grin

I had to cancel my blood giving last week - had a cold. I was so annoyed with myself! Will rebook soon.

upto11 Wed 05-Jun-13 09:38:07

So glad that Joe is doing well. I think of you all often. X

LatinForTelly Wed 05-Jun-13 12:53:22

Trazzle, sorry if you know this, and there are other reasons why you have to get up at 2 for Joe, but if you have a flocare infinity pump (the nutricia, purpley one), do you know there is a way you can set the dose, then set it to 'mute when done' so that when it finishes the dose, it will just stop silently, rather than alarm and you won't have to get up? (Although of course, Joe will remain 'attached' and you won't flush the tube til morning etc)

Sorry to be annoying if you can't do this for reasons I haven't considered. It's just we do it, and I have met other mums who tube-feed overnight who haven't been told by Nutricia/health care professionals that it's an option. The option is on a hidden menu, bizarrely, but I can dig out how to do it, if it would help at all, even in the future at some point.

Glad everything's going smoothly, and the trial is the one you wanted. Splodging still xx

Trazzletoes Wed 05-Jun-13 13:48:07

Thanks Latin he actually has an Applix smart pump. No doubt it will have the same feature but I have no idea how to access it! Also I was a little lax with flushing with his last my tube and it might have got a tiny teeny bit blocked... Oops...

Smartieaddict Wed 05-Jun-13 13:53:45

Glad to see Joe is getting the additional drug, and things are going well. I gave blood last week for the first time in about 12 years. I tried to drag DH along as well but he was "too busy" I will keep on at him though until he caves in!

MrsFrederickWentworth Wed 05-Jun-13 20:13:52

Good news on the drug front and continuing to Splodge.

LatinForTelly Wed 05-Jun-13 21:32:40

Ahh ok, Trazzle. Just thought if it could save you one wake-up, it was worth mentioning!

Trazzletoes Wed 05-Jun-13 22:30:09

Definitely worth mentioning!!

glaikit you gorgeous person, you get a special Norksy YAY for making a bleeding appointment.
I will be at BUMSEX central (Center Parcs) on 3rd July, but will try very hard to nag remind you.

Poor northern, but quite right, nobody wants snotty blood smile

Trazzletoes Wed 05-Jun-13 22:52:51

Big up smartie too, Norks

smartie gets a double YAY YAY smile

Once for bleeding and once for nagging grin

I am ashamed to say I cannot get DH to donate...yet. He is scared. I have done my very best nagging persuasion, but he needs to get there in his own time (25 years we have been married, I am a VERY patient person)
I think once DD has done it he might just be shamed

OohMrDarcy Thu 06-Jun-13 12:36:47

Glad to hear Joe is doing ok still

Just wanted to let you know I gave my 15th blood donation last week and thought about Joe during it smile

YAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAY for ooh

And YAY for me, because I finally managed to get to a donor session this afternoon so a pint of Malverns finest is on its way to someone somewhere.

And sad for DD who has invisible veins, and they couldn't get one to pop it's head up and be counted. She is REALLY cross and sad that she went through all the boring forms and bits and bobs and didn't actually get to give up any blood. She is going to ask her Boyfriend to donate on her behalf.

OohMrDarcy Thu 06-Jun-13 19:37:22

yay for you norks! and booo for your DD, tell her to keep trying - my first couple of attempts were like that!

MrsFrederickWentworth Thu 06-Jun-13 19:54:15

Can't bleed but have done the organ donation sign up.

Trazzletoes Thu 06-Jun-13 20:54:40

Thanks norks and darcy

Joe is still doing fine though he is noticeably more tired as we get to the end of this week. Only 2 more radiotherapy treatments though which is good.

Am feeling a little despondent though as was talking to another neuroblastoma parent whose child was diagnosed 2 years ago. Every child treated at our hospital that they met during treatment and every one since, up to Joseph, bar one child who is still undergoing treatment, has relapsed and all but 2 of those have already passed away. It's gut-wrenching and has made me feel quite reflective.

Also feeling precious as we would have been going on holiday tomorrow to the west coast of the USA to visit my DB and his family. I miss them. I was so looking forward to a fortnight of sunshine and beach and fun. Joe was so excited about going on a big plane. God only knows when we will be able to go - I can't see that we will ever be able to afford the insurance for Joe to go. At least not for 10 years and who knows after that. I know holidays are a luxury but we haven't been abroad since 2010 and were so looking forward to a proper sunshine break.

And I've had a text tonight from a friend who has organised a meet up of some old friends in a nearby city... But J is likely to be in hospital and DM will be mid-holiday so I won't be able to go. I'm just feeling crap about all of this. I know it's selfish and I know J is going through so much more but I just never get a break.

Apologies for the pity party.

(((Hug))) to you trazzles

ToffeeWhirl Thu 06-Jun-13 22:00:30

((hugs)) from me too.

Trazzletoes Thu 06-Jun-13 22:30:34

Thanks.

I know I'm just being silly and frankly should be bloody grateful for what I have. And I am! I just am sad for missed opportunities.

And I watched Tuesday's Panorama which both upset me and have me the rage so it's everything combined!

minmooch Thu 06-Jun-13 22:42:31

Hi Trazzles I'm glad that Joe is feeling fine but tired - radiotherapy knocks them for 6 as well. You are not being selfish, your life as an individual, as a couple and as a family has been put on hold. You are pulled in every direction without the ability to make plans. It's immensely tiring and incredibly hard. Big hugs xxx

MrsFrederickWentworth Thu 06-Jun-13 22:51:11

Trazzle,

It's not silly, it's natural. If you weren't upset by whatever was on Panorama, ( sorry, didn't see), by the tales of the hospital and if you didn't miss your freedom and fun you would be inhuman and that isn't what your DH and dcs need and love.

I wish we could put you on s magic carpet and whisk you to the US or a sunny clime. The US has long been out for us and we only used to get abroad where the consultant said we could go ( Switzerland) and we could get back to GOSH in 5 hours or less. But all being well, you will like us get to interesting places.

Love and hugs and gin and tonic, and as a colleague says, wine and whine.

Trazzletoes Fri 07-Jun-13 06:34:23

min I hope you had a good break and that your DSs have too.

barefootcook Fri 07-Jun-13 08:59:12

Hi Trazzle

Just wanted to check in and say I am thinking of you. You have every right to feel down- it's totally understandable. Hope Joe starts to feel more energetic once the radiotherapy finishes.

Oh trazzles, bless you. I feel like that sometimes and I have nothing to feel sorry about. If make a wish can get you to Florida, can't they get you to yr dbros? Sorry if that's a stupid question.

Someone at work was speaking about the panaorma programme, I can understand why it would upset you.

Maybe speak to yr friends and see if they can pop by the hospital for a coffee and cake. Or is there anyone else who can give you respite? I would be there in a flash if I were nearer.

Anyway, I should be around all day if you want to chew the fat. O en repair man is coming! grin

Oven, not quite sure what an O en is!

onedev Fri 07-Jun-13 18:44:09

I'm not surprised you're feeling as you do & the good thing is you can get it all out here.

Still splodging & wishing you all the best.

superfluouscurves Sat 08-Jun-13 11:14:09

flowers Trazzles You are not selfish or silly to feel the way you do - it is totally totally natural and justified!! Minmooch said it better than I can. Is there any way you can give yourself just a small break (even just an hour) for pedicure or quick meet up with friend???

superfluouscurves Sat 08-Jun-13 11:20:07

[sorry - I know those are pretty woeful suggestions - just wondered if you could take a break for an hour or so]

FoodieToo Sat 08-Jun-13 11:41:20

But Trazzles remember that your little man defied all the odds when the initial signs of relapse spontaneously disappeared.

Surely that can give you some hope that perhaps Joe s case is not like many others x

Millie2013 Sun 09-Jun-13 22:11:12

I am still on a mission to get OH to sign up as a blood donor (as a former recipient, I can't donate) but he is rather needle phobic, so is rather reluctant.

I shall keep trying..slowly slowly catchy monkey..

Hugs to the Tazzle clan, you are doing so, so well

onedev Sun 09-Jun-13 23:54:50

Hope you've all been able to enjoy some sunshine. Still splodging.

Just checking in. Glad Joe seems well. Sorry to hear about your unhappiness Trazzles - it really isn't fair that life is effectively on hold for you until Joe's treatment is over (and probably for a while after)
Blood donated. I have to say I had a panic in the car on the way there at the thought of it which is very unlike me. And then I gave myself a slap and remembered the thousands of children who are going through much more invasive procedures.
And FWIW it was fine - anyone reading this, don't be a wuss like me grin

lebasi Mon 10-Jun-13 17:32:49

Hi Trazzles, apologies if you already know about this charity, and I am not sure if it would be possible for you (and obviously not until radiotherapy is over) but have you contacted the Make a Wish foundation? make-a-wish.org.uk. Close friends of ours, whose little girl has stage 4 Wilms, have just been to Disneyland in Florida for a week, organised very quickly (and entirely paid for, including insurance, plus spending money!) by this amazing charity. They stayed in a 'village' nearby, which is set up for children who are suffering life-threatening illnesses. Our friends said they were pampered for a week - didn't have to cook, drive or do anything they didn't want to do. Might be worth a look? Wishing you and your family all the best.

Yay for stealth! You are bleeding wonderful!

Badvoc Mon 10-Jun-13 17:54:02

If anyone is entitied to a pity party it's you trazzles.
So sorry about your missed holiday. You must be so gutted.
Glad to hear joe is doing ok, albeit tired.
I am not posting often due to health/family stuff but you are all in my thoughts xxxx

not exactly. Turns out my last donation was 2006 blush

toomuch2young Mon 10-Jun-13 23:56:21

Just letting you know still think of Joe each day and hope things are going as ok as can do for all the Trazzles. Hope the sunny days are helping give a little lift to you all.

Wahay for all the donors grin

Ragusa Tue 11-Jun-13 23:21:10

Still thinking of Joe and you all. How's he getting on?

Still thinking of you and your Joe and the rest of your family every day.

bobkate Wed 12-Jun-13 20:21:11

Same here - still thinking of you all x

vez123 Wed 12-Jun-13 21:45:31

Sending you my thoughts...

Trazzletoes Wed 12-Jun-13 22:21:58

Thank you all. He's doing grand, thanks - well enough for me to have done a couple of days at work this week!

We are back in hospital for a bit tomorrow to pick up some retinoic acid which is the start of the next phase of treatment already! Hopefully he won't suffer too badly with side effects.

I found the list of side effects from the radiotherapy the other day - I had forgotten that the affected kidney will stop working within the next few years. I know, I know, he has a spare...

DD took her first steps at the weekend too. It's lovely to see them both learning to walk together. It's a right pain when they fall in to each other though!

onedev Wed 12-Jun-13 22:27:18

Glad it's going well - long may the good news continue. thanks

Ragusa Wed 12-Jun-13 22:32:52

Wow - that is truly amazing to hear. So fantastic. You working. Who'd 'a thought it just a few weeks ago grin?

Let's hope his kidney rallies. Is it possible it will remain undamaged?

My uncle only has one, never affected him or stopped him drinking gallons of whisky not meaning to be flippant, but you're right: How fortunate we are kind of born with a spare.

The idea of them both learning to walk together (him again, her for first time) brings a tear to my eye.

YAY for stealth, you are bleedin' LOVELY smile

ChablisLover Wed 12-Jun-13 23:20:00

Trazzle - have read your threads and wish you all the best.

Have you heard of Oscar knox?

https://mobile.twitter.com/Wee_Oscar

He had been suffering the same disease but has recently been declared free - fingers crossed.

His parents have set up an appeal to raise money for treatment and for research.

ninja Wed 12-Jun-13 23:47:17

So lovely to hear this positive update. I hope you're managing to get some more rest. I'm not sure we should be celebrating you going back nto work except for the normality it shows. Make sure you get a proper lunch break x

Trazzletoes Thu 13-Jun-13 06:48:06

It has been great to be back though. It's been 5 months since I was last there and it's good that Joe is well enough that I CAN go.

lebasi thanks for the info. We are actually already involved with Make A Wish and waiting to hear which wish of Joe's they will grant - the children have to make 3 wishes and then they see which they can sort out. We initially contacted them when Joe had relapsed and potentially wouldn't have been on any treatment but now he's back on treatment his consultant has said there won't be time for him to go until after his treatment has finished but I don't know whether Make A Wish will either wait that long or agree to send him once he's not being treated anymore.

VenetiaLanyon Thu 13-Jun-13 06:49:15

Pleased to hear about you getting back to work and DD's first steps, and here's hoping that Joe rails successfully against the possible side effects; is the kidney thing an inevitability, or could he possibly be lucky and avoid it?

Trazzletoes Thu 13-Jun-13 06:49:40

ninja I only do 1 1/2 days a week(!) so only 1 lunch break to worry about and I absolutely DO get it, don't worry! Fresh air... A stretch of the old legs... Food...

Trazzletoes Thu 13-Jun-13 06:51:27

Re the kidney... The piece of paper says it will definitely happen but neither DH nor I remember the Doctor saying that! I have a meeting with her next week so will check then but I guess there's a good chance.

tholeon Thu 13-Jun-13 08:09:37

Lovely to think of them both walking together, glad you are managing a bit of work, too x

TwentyTinyToes Thu 13-Jun-13 08:14:42

Hope the kidney damage turns out to be minimal or even better Joe manages to avoid it all together - if that is possible. Glad to read that Joe is feeling better and that you have been able to get back to work, it must be good to have a bit of normality in your week.

I don't post much but often think of your little boy, and the rest of the trazzle gang of course. X

QOD Fri 14-Jun-13 18:12:52

Just to let you know Joseph and Aillidh are going on the back of My Race For Life name plate thingy.
Along with members of my family I've lost and friends and family who've won the fight.

Any another mumsnet babies are welcome to join my uncle, my cousin and nan who I've signed up to run for x

ChippingInWiredOnCoffee Fri 14-Jun-13 18:22:32

Trazzle - it's good to hear Joe is still doing so well smile

Lovely that DD has taken some steps! Is she walking all over the place now or was it a bit of a one off?

You are allowed to be sad at missing out on things. Of course you are happy that Joe is here, he is doing well and the prognosis is looking brighter but that doesn't mean you can't be sad for lost opportunities along the way.

LatinForTelly Fri 14-Jun-13 21:43:49

Just checking in, Trazzle. Pleased you got into work, and that Joe is getting stronger. It must be very hard to be faced constantly with the negative consequences of his treatment - like his kidney - though sad.

DH managed to give blood yesterday. Without fainting! Quite proud of him.

Hope you all stay well and have some fun this weekend. xx

YAY for latin's DH. I am impressed.

QOD you have made me a bit moist in the eye

QOD Fri 14-Jun-13 22:44:27

Moist Norks x wink
They're on there now. Toooooo many names

MrsFrederickWentworth Sat 15-Jun-13 12:24:19

Trazzle,

Lovely picture of them both walking together..have you got a real picture of them to gloat over?

Kidneys can be very unpredictable. He has two though and even if one packs up that one will keep him well.

Trazzletoes Sun 16-Jun-13 21:35:21

Thanks QOD

Sorry I've not been on here much. There's nothing much to say! Joe is doing fine and started the retinoic acid last Thursday. He has that at home and is feeling fine so far. It will have side effects but he's ok at the moment and the side effects aren't too bad in the grand scheme of things.

It is the faffiest medicine ever though. It's in capsules which of course he can't swallow, so we have to soften and then cut the capsules. But you have to wear gloves because its basically vitamin a and so dangerous for pregnant women so you can't touch it or let it get in to the water or anything. It's really oily and just sticks to the gloves. It's impossible to do! Takes me about 15 minutes twice a day and even then I can't get it all in, it gets all over the gloves sad

hellohellohihi Mon 17-Jun-13 06:05:10

Hi trazzle, glad to hear that no news is relatively good news. I think of you all often still....

That does sound like a complete faff with this new medicine, is there no other way they can give it?? Oh, and did I miss that you are pregnant?? Congrats if so!

Trazzletoes Mon 17-Jun-13 06:58:12

No, there's no other way to give it <sob>!!!!

Just to clarify, I am absolutely NOT pregnant!!! If I was, I wouldn't be allowed to administer these meds at all due to the risk. Even the men have to wear gloves etc. it's just to make sure really. There is no way I could handle being pregnant and going through this! We get enough disturbed sleep already, plus we have no idea what will be happening in 9 months time - although we very much hope that Joe has now got the ability to survive, we don't know that for certain. And if he doesn't, he could be seriously ill when the baby would be due! Some choice for DH then at that moment...

Plus (thankfully and most importantly!) 2 is enough for me! I have no idea how people cope with more! But cancer really does mess up every aspect of your lives. It would be very difficult if we knew we wanted another one. Of course all this could change but for now? No thanks!

I did wonder trazzles! But I totally get what you are saying, and I only have one! wink

I hope an easier way comes up though, sounds like its just additional stress for you.

hellohellohihi Mon 17-Jun-13 08:02:30

Sorry for jumping to that conclusion, I have to admit I thought you would be barking mad to be considering DC3! I only have one DD and would like another but think we'll stop there! I already feel pulled and stretched emotionally and logistically and we haven't got that bastard cancer in the mix, so totally understand where you're coming from!

How long will joe be having the fiddly stuff for?

saffronwblue Mon 17-Jun-13 08:07:24

I have been away and just wanted to check in and see how Joe is going. Hope all the Trazzles have had some calmer days.

VenetiaLanyon Tue 18-Jun-13 09:25:49

Blimey, must be strong stuff; how's Joe doing on the side effects so far?

barefootcook Wed 19-Jun-13 06:16:29

Sounds like you are making good progress Trazzle. Keep posting- it great to hear how you are all doing.

Trazzletoes Wed 19-Jun-13 06:18:00

He hasn't had any side effects yet but that's not a huge surprise. He could get a sore mouth ( and he may have as he isn't eating still) but the side effects of this bit shouldn't be toooooooo bad.

Make a wish called yesterday to say they are putting how's wish on hold for 6 months while he gets through his treatment so Disney is still a potential which is good to know. I'd better get up anyway - I've got work today and for some reason joe's feed pump keeps beeping at 5.55 and today has woken up both children. Hooray.

ToffeeWhirl Wed 19-Jun-13 07:26:49

Damn that noisy feed pump, Trazzles. Good to hear that Joe isn't suffering any side effects so far. And great that Disney is still a potential, even if it is on hold at present.

onedev Wed 19-Jun-13 12:09:34

Hope you've managed to stay awake in work! It's crap when you get woken earlier than necessary!

Joe really is a trooper with all of this going on - you must be so proud of him (& yourselves - you're all doing so well getting through this). thanks

tholeon Wed 19-Jun-13 12:45:01

What an inspirational lot you are. Sorry about the beeper though! We have a noisy crow here who likes to wake my lot up at 5.30 ish.. X

Afternoon Trazzle - hope you had a good day at work.

Still splodging for you all.

Delighted to hear that the side effects are fine at the moment for Mr Joe. Brilliant that Make a Wish are helping manage around Joe's treatment. Gingers crossed for quiet alarms, no sore mouth and a dose of mickey in the future.

Xenia Wed 19-Jun-13 13:44:20

I wonder if there Vit A in a bottle you could feed with a pipette which might be easier than 30 mins a day cutting open capsules.

Hmmkay Sat 22-Jun-13 11:06:17

Morning Trazzle. Hope you're all okay and Joe still isn't having many side effects?

I hope Make a Wish do get Disney to happen - he really does deserve it (you all do!).

eightytwenty Sat 22-Jun-13 22:31:32

Trazle - de lurking to ask whether you'd seen or wished to see the article on neuroblastoma in the Telegraph today?

ChickenLickenSticken Tue 25-Jun-13 19:14:22

Delurking to say that you Trazzles are still in my thoughts daily and hoping no news is good news smile

savoirfaire Tue 25-Jun-13 23:05:01

Just a quick delurk to say hello and I'm glad things seem to be going ok. DH donated blood a couple of weeks ago - for about the third time ever and despite being incredibly worried about doing so he managed it inspired by Joe and by you. It really pisses me right off that I can't donate because I have previously received a transfusion and due to concerns about mad cow disease they won't let me. Which seems annoying - when did anyone last year about mad cow disease, surely it's not as big an issue as getting people blood? Hey ho I mustn't rant! Best wishes, splodges and all that to you.