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.

My beautiful Joseph with his blue eyes, ready smile and arms always open for a hug or a tickle fight

(1000 Posts)
Trazzletoes Sun 14-Apr-13 08:13:29

He has survived the most horrific cancer treatment with his smile, joy and love intact. Unfortunately the neuroblastoma has survived too.

hellhasnofurylikeahungrywoman Sun 14-Apr-13 08:14:44

Oh Trazzle, how I wish we could take away your pain and beat that bloody awful disease. Sending much love to you, Joe and all the Trazzles.

danielandamy Sun 14-Apr-13 08:17:15

You poor poor things... Life is so cruel sometimes and your bravery has been amazing. What an amazing little guy xx

saffronwblue Sun 14-Apr-13 08:18:48

Here on your new thread and on this journey as part of your virtual support team. So sorry that the news is so tough and thinking of you.

DoctorAnge Sun 14-Apr-13 08:19:15

Life is just not fair sad
My thoughts are with you.

Signing in over here as well with love and light from Malvern

kissmyheathenass Sun 14-Apr-13 08:19:55

Oh Trazzle. I so sorry to read this. How unfair all this is. Joe sounds like such a wonderful little boy.

TicTacSir Sun 14-Apr-13 08:21:53

You're been constantly in my thoughts. Goodness knows how you're all feeling. I hope you can take some comfort from knowing we're all here. What's next? More treatment? Devon splodge of light here Xxxx

MelodyBaker Sun 14-Apr-13 08:22:19

Sending love from Manchester.
Life can be so unfair trazzles. If only I could help to take away your pain, Joe is one amazing little boy and he will beat this x

Howstricks Sun 14-Apr-13 08:23:23

No words, much love x

CloudsAway Sun 14-Apr-13 08:23:27

I'm still here thinking of you all as well.

Pagwatch Sun 14-Apr-13 08:24:05

So sorry. What difficult news for you. X

PointlessCow Sun 14-Apr-13 08:25:09

I have been thinking of you and your lovely boy. Sending a splodge of hopeful light from Durham. x

Fivemoreminutesmummy Sun 14-Apr-13 08:25:26

I'm so sorry for everything you are facing. Sending you love, hugs and positive thoughts. Enjoy today x

pinkhousesarebest Sun 14-Apr-13 08:25:47

You are in my thoughts constantly.

HazzleMcDazzle Sun 14-Apr-13 08:26:26

Trazzle, I've followed your threads since Joe's original diagnosis, and am so sorry to hear your latest news. I've chocolate here whenever you need it and am thinking of you x

Badvoc Sun 14-Apr-13 08:26:34

I have no idea what to say.
You and joe and your lovely little family are constantly in my thoughts and prayers.
Is there anything we can do to help you?
Xxxx

Honu Sun 14-Apr-13 08:28:50

I never thought I would care so much for a family I only 'know' via an online forum. Love and hugs to all of you.

Hassled Sun 14-Apr-13 08:29:00

I hope Joe enjoys the penguins today.

Bastard cancer.

<unloads armful of chocolate, good stuff, not plasticy rubbish>

I will reiterate what Norks said on the last thread, anything you or joe or dh or dd want we can sort out. Anything at all. Online shop, delivery of meals for you, personal visit from a penguin (I think I could sort that)

I am holding you and your beautiful family very very close and still splodging away.

Portofino Sun 14-Apr-13 08:29:57

Oh what absolutely gutting news sad. Sending love and positive vibes xx

bunnygirl80 Sun 14-Apr-13 08:32:54

I'm so sorry to hear this news Trazzle. I rarely post, but have been following your journey right from the start. I'm praying for your beautiful Joseph and your whole family

MandragoraWurzelstock Sun 14-Apr-13 08:33:03

Much love Trazzle xxx

DaPrincessBride Sun 14-Apr-13 08:33:32

Sending you all much love and light xxx

Sirzy Sun 14-Apr-13 08:34:10

Hope you all have a lovely day today, enjoy the penguins xx

kelda Sun 14-Apr-13 08:34:51

Thinking and praying for you and your ds xxx

So sorry, i haven't posted for a while but have been thinking of you. xx

Trazzle I havent commented yet, as I didnt know what to say. Words seem so....easy.

Im sorry. Cancer is a bastard.

Can you tell us what the next step is?

Love to you all xx

lougle Sun 14-Apr-13 08:38:00

Trazzle, so sorry. Of course you're not ready for life-limiting illness yet -Joe's got the rest of his life to lead, starting today, with the penguins!

You inspire people daily. My neice is going through high dose chemo for a devastatingly rare and aggressive childhood cancer. I read your thread and it reminds me that petiole can, and do, sustain themselves through the treatment.

Trazzletoes Sun 14-Apr-13 08:43:27

monkey we don't know yet. This all happened late on Friday. We haven't even finished telling family yet.

We are meeting with his consultant tomorrow. Our understanding is that there's a reasonable chance that there might not be any "next steps". We aren't sure that there's much that can be done other than to prolong his life and we aren't certain that's a route we want to take (please don't judge me - we have our reasons for that). Health wise Joe is so weak at the moment. This news has come at the worst possible time for him. His little body won't be able to cope with much treatment, it's so broken already.

LegoAcupuncture Sun 14-Apr-13 08:45:44

I'm so sorry Trazzle. Thinking of you all xxxx

wonderstuff Sun 14-Apr-13 08:46:19

sad I'm so sorry

Oh goodness Trazzle, I don't know what to say except thinking of you xx

Chopchopbusybusy Sun 14-Apr-13 08:48:16

I'm so sorry to hear this xxx

Badvoc Sun 14-Apr-13 08:48:36

sad oh trazzles.

ipswichwitch Sun 14-Apr-13 08:48:44

Big hugs for you and your beautiful boy. I hope you get some positive news tomorrow xx

Oh god. I was hoping (as is everyone), that there may be another option.

Trazzle where in the country are you?

Badvoc Sun 14-Apr-13 08:48:56

...and none of us would ever, EVER judge you!
X

KnottyLocks Sun 14-Apr-13 08:50:01

Checking in with a splodge, chocolate, love and a hand to hold x

johnworf Sun 14-Apr-13 08:51:52

Trazzle, I can't find the words to say how sorry I am that it's not gone away. You are both in my thoughts.

((((((hug))))))

lougle Sun 14-Apr-13 08:52:01

Trazzle, no-one, no-one can judge you for that! You have to put Joe first and sometimes not doing something is braver than doing it.

PoppyWearer Sun 14-Apr-13 08:53:18

(((((Trazzle and Joe)))))

seeker Sun 14-Apr-13 08:53:43

Nobody worth a heartbeat's consideration would judge.
I hope the penguins step up to the plate for him today.

CountryBelle Sun 14-Apr-13 08:54:04

Couldn't read and run - love and prayers for you and Joseph. Xx

toomuch2young Sun 14-Apr-13 08:54:38

Oh Trazzle. I so hope Joe enjoys the penguins today, sounds like he really enjoyed his playmobil with DD and being home with you all.
You never ask us for anything but hope you know the offer is always there any thing at all big or small that would brighten things up for Joe, big or small do let us know.
Other wise words seem so empty.
Gingers crossed every day, and love, light and positive healing thoughts for your beautiful blue eyed boy.
We are all routing for you Joe.
And so sorry to hear about your niece also lougle their is absolutely no reason or logic that these little children suffer so its so so desperately bloody cruel and unfair.
sad

Wereonourway Sun 14-Apr-13 08:54:43

Trazzle I've not commented on your threads before, I have followed them and think of you and your family every single day.

I'm so sorry to hear the latest news, it's so bloody sad and unfair.

Ill continue thinking of you, and praying for Joe, for you all x

ajandjjmum Sun 14-Apr-13 08:54:55

Trazzle - none of us would ever judge you. We are fitted with admiration and love for what your family and Joe are going through. We know how you love him, and any decision you make will be based on what's best for him. If earth can't supply the answers, then I pray that heaven can. x

indyandlara Sun 14-Apr-13 08:58:23

No one will judge. I hope you have many more months ahead x

MousyMouse Sun 14-Apr-13 08:59:10

I'm so so sorry.
(((((((((((((hugs))))))))))))))

FrubesOnTheCouch Sun 14-Apr-13 09:00:32

neuroblastoma truly is a bastard x

SarahJinx Sun 14-Apr-13 09:01:00

None of us will ever judge you Trazzle, you do whatever you need to do, whatever you can do for your beautiful, brave Joe and we'll hold your hand.

So very sorry to hear that the news isn't good, it's so desperately unfair x

Trazzletoes Sun 14-Apr-13 09:01:48

We are in Leeds

MaudLebowski Sun 14-Apr-13 09:02:26

Another one emerging from lurkerdom to join the throng of support for Joe. Crossed gingers all the way here.

Thurlow Sun 14-Apr-13 09:02:39

No one would ever judge you for a decision like that. You are only deciding what you think is the best for your beautiful boy.

Anything, anything that you need help with, just ask. We are all here to help.

onedev Sun 14-Apr-13 09:04:35

So sorry & sad to read your news Trazzle - that's horrendous! I don't know what to say but as others have said, if there is anything at all that you need, please just shout out.

I hope Joe enjoys the penguins & you all have a lovely day together.

You are inspiring & no one would ever judge - it's clear for all to see that you only have your DD & Joe's best interests at the heart in everything you do.

Still splodging & gingers crossed, praying for a miracle.

Asheth Sun 14-Apr-13 09:04:50

Splodging into your new thread and sending Joe lots of love and strength. I can't even begin to understand how you must be feeling, but can only repeat what others are saying that you are in my thoughts, that I am here for handholding and chocolate and anything else you need. Hope you have a lovely day today - you all deserve some fun. xxx

MrsPennyapple Sun 14-Apr-13 09:07:09

Words feel so inadequate sometimes. I'm so sorry for all you're going through.

Have a lovely day today, I hope the penguins are on form.

So much love and light to you all from the wide, open, blue skies of Cambridgeshire Trazzle. We're all thinking of you and Joe x

thewhistler Sun 14-Apr-13 09:09:12

All you have ever done, all you have ever thought of, has been for Joe. No one will judge you for whatever choices you make.

I hope those penguins do their stuff. I recall taking Ds at the same age to Harewood to see the flamingos. Very cheering.

You know that anything we can do we will, whether virtual or real, whatever you ask.

lougle Sun 14-Apr-13 09:11:35

Thank you, toomuch.

Trazzle, do you have a social worker who can help you get any practical support you might need? Are you getting any benefits you are entitled to?

Homestart are wonderful, they could offer a volunteer who could entertain your DD for an hour or two each week.

CLIC Sargent has a holiday home in Scotland which is free, carers available and hospital very near by.

Trazzletoes Sun 14-Apr-13 09:12:01

He loves the flamingoes too but he loves the penguins best.

Doyouthinktheysaurus Sun 14-Apr-13 09:13:32

Oh golly, I am so sorrysad

Thinking of you x

northender Sun 14-Apr-13 09:13:38

So sorry to hear that trazzle. Sending positive vibes from across the Pennines.

Trazzletoes Sun 14-Apr-13 09:16:10

lougle yes thanks, DLA and Carers Allowance plus J's blue badge.

Social Worker is great but he doesn't know this news yet. I'm expecting we will see him, and our Macmillan nurse, on Monday too.

We are looking in to the possibility of a few days away. I would dearly love to take Joe to Disneyland Paris but its probably not possible, I don't know. We have a great charity attached to the ward, too, Candlelighters, who also have holiday homes round and about. Thank you for the information though. It's very helpful.

I hope your DN is doing well. It's a very difficult thing to go through.

HumphreyCobbler Sun 14-Apr-13 09:16:19

Thinking of you. So sorry to hear this.

thewhistler Sun 14-Apr-13 09:16:23

Yup, the penguins are very funny.
And like all the Disney films.
We never managed to see a baby.
Enjoy.

xigris Sun 14-Apr-13 09:16:53

Big love to Joe and all of you from SE London. I have two friends battling breast cancer at the mo. It truly is a bastard disease (we have our own word for it which involves slightly changing the first 3 letters but it's rather rude grin) It's all so unfair, I hope you have a lovely day with lots of sunshine and penguins. Xx

crashdoll Sun 14-Apr-13 09:16:53

I know there are no words to comfort you but please know you have a whole army on your side.

thanks for Trazzles and family
XOXOX for the gorgeous Joe

twojumpingbeans Sun 14-Apr-13 09:17:03

Oh love. I hope that you manage to get some enjoyment out of today, the term 'life limiting' is so bloody cruel. My DD2 has a life limiting condition,
we don't know what the future holds for us, she might grow to be an adult, she might not.

I think of you all often (but don't post often). Sending just an extra bit of love and hope across Yorkshire for you all today xx

minmooch Sun 14-Apr-13 09:18:22

Oh Trazzle I am devastated for you all that the consultants have confirmed the neuroblastoma is still there after all he has been through.

As parents we have to make the best decisions for our children. The best decision you made was to give Joe his best chance and that was to go through the treatment. You will continue to make the best decisions for your child and no-one will or can judge you.

We are just over 3 weeks away from my DS's scan to see whether his 18 months of treatment have killed off his brain tumour. The whole 'journey' is wrong from the moment of diagnosis, treatment that is just as hideous as the disease, the randomness of who will and who won't get their cancer eradicated, the helplessness as a parent watching, the grieving for your child even when they are still here. It is all so wrong and so unfair and there aren't any words that can make it better.

As for Joe being in the wheelchair I'm sure at the moment he will delight in being with you all, out of hospital and seeing penguins. If he is too tired then he won't fight being in the chair. We call ours 'the chariot' and my son, older and more able to vocalist his feelings, is coming to accept that he needs his if he wants to be safe and get about. He does not like it but accepts he has to use it. I have not got used to the shock of seeing him in it but it allows us to do some normal family things that would otherwise be impossible. The difference between NHS standard wheelchair and a private individually fitted chair is enormous for both the child and the person pushing so you may want to consider this.

The sun is shining here and I hope it is with you today as you go and have fun with your precious children today.

You are in my thoughts.

Xxxxxx

xigris Sun 14-Apr-13 09:18:46

PS as regards the Disney idea, would one of the children's charities not be able to help? They have qualified medical staff etc. xx

BeaWheesht Sun 14-Apr-13 09:21:37

Oh trazzle. This is awful news. Am thinking of you all

blue22 Sun 14-Apr-13 09:23:44

Joe is always in my thoughts. As are you all. I hope the penguins put a smile on his beautiful face. X

saffronwblue Sun 14-Apr-13 09:23:58

Trazzle no-one here will ever judge you. Please use your thread however you need, to rant and rave and try out ideas. Hope the penguins step up today and hope Joe has some smiley moments.
xx

MikeLitoris Sun 14-Apr-13 09:24:15

I can't find any words that seem fitting to say to you.

I'm truly sorry for you and all your family. Joe especially.

No one would judge you for any decisions made now. As a pp said sometimes doing nothing is the best choice to make.

Sending you all lots of love and positivity.

X

Hope, despite everything, you are all able to have some lovely fun moments with the penguins today, and that the sun shines for you all day x

tholeon Sun 14-Apr-13 09:26:09

Oh you poor darling. Could we grant him a mumsnet wish? Even if it is just a day out somewhere local. You and dh are the best judges of what is best for him, no one with an ounce of compassion or understanding would ever judge you for any decision you make x

BellaVita Sun 14-Apr-13 09:27:20

Sending all my love and best wishes xx

hedwig2001 Sun 14-Apr-13 09:30:15

Trazzle I've not commented on your threads before either, but I have checked in every day for an update on Joe's progress.

I'm so sorry to hear the news is bad.
Thoughts and prayers for you all from Aylesbury. xxxx

BedHanger Sun 14-Apr-13 09:31:20

I'm very sorry to hear your news, and my thoughts are with you and your family x

ForYourEyesYoniBrian Sun 14-Apr-13 09:34:32

Trazzle, I so wish that there was something I could say or do that would make an appreciable difference.

Joe knows that you love him and that is the very most important thing.

Coconutty Sun 14-Apr-13 09:36:51

Sending you some prayers. xx

Themobstersknife Sun 14-Apr-13 09:37:06

So sorry. No-one will judge you on the decisions you make now. Sending you and your family much love.

LegArmpits Sun 14-Apr-13 09:37:50

Trazzle, what on earth can we say? There is nothing adequate, but please know that I'm thinking of you so much. All the love in the world to you and your family. xxxx

TheDoctrineOfSnatch Sun 14-Apr-13 09:44:17

So sorry, thinking of you x

sleepythegiraffe Sun 14-Apr-13 09:45:50

You and your family have been in my thoughts constantly. It is so so unfair, especially after all Joe has been through. I am so sorry to read your latest updates, Joe is clearly a much loved little boy. I hope you manage to all enjoy being together today. Much love. X x x

MrsDeVere Sun 14-Apr-13 09:45:51

Sending love.

simpson Sun 14-Apr-13 09:47:17

No one would judge...

Hope Joe enjoys the penguins...

Thinking of you all xxx

SoupDragon Sun 14-Apr-13 09:48:49

Thinking of you all

hackneyzoo Sun 14-Apr-13 09:52:20

Sending you lots of love from Newcastle and holding you firm in my thoughts. xxx

HairyPotter Sun 14-Apr-13 09:54:47

Oh Trazzle sad There are no adequate words. I haven't posted for a while but have followed Joe's progress, I am so very sorry to hear the latest news.

It has been said many times up there ^^ but if there is anything that anyone of us can do or help with, then please just say the word.

With much love to you all and especially your gorgeous boy xx

insanityscratching Sun 14-Apr-13 09:55:31

Trazzle these charities may be able to help you make memories with Joe http://dreamscometrue.uk.com/ and http://www.starlight.org.uk/

Sending prayers x

ToffeeWhirl Sun 14-Apr-13 09:56:18

I'm so very sorry to hear this news. It is too cruel, especially after all you have all been through. There is no way anyone would judge you for whatever you and DH decide to do next. You are the most wonderful, loving parents and whatever you decide will be the right choice for Joe. xxx

LizzieVereker Sun 14-Apr-13 09:59:07

Sending you love and prayers from the South xoxo

sparrowfart Sun 14-Apr-13 09:59:43

Not fair not fair not fair. Sending you love and strength... whatever you decide to do because you love Joe is the right thing. And anyone who's ever loved a child knows that. x

So sorry to hear that Trazzle, your boy's been so brave. You will make the best decision for him and your family, no-one else has any right to judge. Wishing you all strength and love.

millymae Sun 14-Apr-13 09:59:57

Life is so unfair Trazzle.My heart goes out to you and all the family.There's absolutely no doubt that whatever the future holds for Joe his days will be filled with love - I hope there are many days of sunshine too.

usualsuspect Sun 14-Apr-13 10:02:11

Much love to you and yours xx

TrampyPants Sun 14-Apr-13 10:02:50

Oh jesus, I am so sorry. How horribly unfair!

Oh bloody hell. I know you said the news wasn't good but I was desperately hoping not to read this. Oh trazzles. It's so unfair.

tribpot Sun 14-Apr-13 10:06:35

Trazzle, everyone knows the decisions you make next will be the ones in Joe's best interests, however heartbreaking they may be.

I'm in Leeds so I will await orders from Glaikit et al on anything I can do to help in person or locally.

essexmumma Sun 14-Apr-13 10:07:07

Thinking of Joe this morning sadxx

thekingfisher Sun 14-Apr-13 10:13:18

Have a good day, thinking of you and holding all of you in my heart. Wishing you strength xxx

Bertrude Sun 14-Apr-13 10:16:09

Oh no Trazzle, great big fat hugs for you, Joe, and the rest of your family x x x x x x x

Quejica Sun 14-Apr-13 10:24:48

Trazzle,

De-lurking to say I am in awe of your strength and grace.

Joe has an amazing mummy.

Life is sometimes so unfair sad

Alibabaandthe40nappies Sun 14-Apr-13 10:25:28

Oh Trazzles I hope Joe has a lovely day with the penguins.

Bastard cancer sad

I saw this thread title and feared bad news sad.

No words are adequate but know that we are all thinking of you and are poised to help in any way we can. Xxx (((Hug)))

IAmJacksRagingBileDuct Sun 14-Apr-13 10:42:25

So so sorry to hear the news is bad Trazzle. Its been said many times but if there is anything, however small, that we can do you need only say.

Your little boy has been so brave during his treatment, and your family so strong, life has been unbelievably cruel. My love and prayers are with you all xxx

BuffyFairyTopsTheTree Sun 14-Apr-13 10:49:57

<staggers into thread under massive load of chocolate and baby penguins>

Trazzle, I don't know what words I can say that will possibly be of any comfort at the moment. I am so, so sorry you are facing this.

I hope Joe has enough strength left for you to give him that trip to Disneyland.

No-one will ever judge you here. Whatever tough decision you make it will always be in Joe's best interests.

If you need any funds raising just let me know, be it for treatment elsewhere or memory makers.

Oh God, Trazzle, I just want to squeeze you tight and take this nightmare away.

Love, light and strength to you all xx

2plus2 Sun 14-Apr-13 10:50:31

Tazzle, whatever you decide Joe will always know how much he is loved. One of my pupils died suddenly overnight. The day before he wanted to show me some work he had done as normal I was rushing around and said I would look at it tomorrow. My biggest regret sad
You have the gift of knowing, enjoy this time as much as you can.
My prayers are with you xxx

expatinscotland Sun 14-Apr-13 11:07:20

Thinking of you and sending love.

StoicButStressed Sun 14-Apr-13 11:15:17

Trazzles - I de-lurked and posted on thread, but am re-posting here to MAKE SURE YOU SEE IT and that you do really, really understand all are so very genuine in wanting to help in whatever way possible xxx
---------------------------------------------------------------------------

De-lurking to send my love and hope to you Trazzles

And to absolutely drive home what Norks said:

'Now you do know that if Joe has the slightest whim or desi for anything at all, there are 100 Joe supporters here who would do ANYTHING to make him happy. Remember, you will not be asking for yourself, you are asking for him. If he would like 37 stuffed penguins, just ask; a special chair, we will sort it out; more Playmobil...you won't be able to move for tiny bits of plastic.

Whatever you need and whenever you need it WE WILL HELP.

Truly, we can't give you what we would all so desperatly love to give you, but we CAN help with the things that could give (your so very beautiful) Joe and the rest of you fun and things he might enjoy - ANYTHING. Look how many of us there are Trazzles - if you said Joe and his beautiful sis wanted to go to Disneyland Paris (not so tiring as train all way and hotels in resort), then WE WOULD MAKE THAT HAPPEN.

Please - ANYTHING; just ask and we will together do. Xxxx

HubbaHubbaHubbaInHoobLand Sun 14-Apr-13 11:20:17

I have just read all your threads and didnt want to read and run. God knows what you must be going through with your little boy. your posts brought many tears to my eyes. My thoughts are with you and your family and of course little joe. Take care xx

Incapinka Sun 14-Apr-13 11:21:05

Delurking bringing chocolate, hugs and gin. Words cannot express how sorry i am or how much I hate the c word (and its not the 4 letter word). Am keeping everything crossed that some mistake has been made xxx

FuckThisShit Sun 14-Apr-13 11:23:38

Oh Trazzle, I'm so very sorry to read this. Sending you much live and strength. Xx

StoicButStressed Sun 14-Apr-13 11:25:44

And having posted that on other thread, came to this one and saw that you have now actually said you would love to take Joe to Disneyland Paris but you're 'not sure that's possible.'

I cannot imagine that any part of your families life has not been exploded by all you have been through, and that must involve finances too. I don't want to intrude but I DO - WE DO - want to help, so asking it it the cost of the trip that makes it not possible, or is it medical issues? And if it's the latter, is there ANY way around that - I.E. by paying a private nurse to come too etc?

Please please don't think I'm being insensitive in asking such personal questions. I - like ALL here - just want to help in ANY way possible, so if getting beautiful Joe to Disneyland would help him (& medically that's 'doable'), I am CERTAIN that together, ALL OF HERE BOTH COULD AND WOULD.

Sending love and hope for the stuff that hopefully IS still within your reach. Huge hugs xxxxx
PS I really hope I haven't offended you in the above, just want to help make Joe's fun as huge as is humanly possible now, given the bastard news you have been givensad

CharlieBoo Sun 14-Apr-13 11:26:40

Have fun with your beautiful family today... Your bravery and strength amazes all of us who can only imagine what you're going through. As always in my thoughts and prayers. Xx

CelticPromise Sun 14-Apr-13 11:28:46

Trazzle I haven't posted much but I've followed Joe's story and seen you about a bit. Just wanted to send some love and offer a prayer in the face of bloody awful news.

Your love for Joseph really shines out of your posts and you will make the right choices for him and your family.

This is so unfair. Cancer is a bastard.

blizy Sun 14-Apr-13 11:29:03

Trazzle, I can only say the same as stoic and norks. You have an army of supporters behind you, I would love to help in any way possible.

I hope Joe enjoys the penguins today. X

TiredFeet Sun 14-Apr-13 11:32:22

Oh Trazzles, there are no words. But I just want to say (as tears roll down my face) that you love for him pours out of every post and that must be giving him so much comfort and joy right now. I loved Harewood as a child, especially the penguins smile hope you all have a lovely day there. Loved the sound of your two playing with the playmobil as well

Please please do say if there is anything we can do for you/joe/ the family

blue22 Sun 14-Apr-13 11:38:03

Agree with stoic I'd do anything to help in any way x

GoldenGreen Sun 14-Apr-13 11:39:43

So very sorry to hear this news. Just wanted to echo everyone who says that when you get around to thinking about the practicalities for a holiday, please do say what you need - loads of us here who WILL make it happen for Joe. Xx

kohl Sun 14-Apr-13 11:42:04

Writing anything seems like such bollocks in the face of your news. So pleased to hear he's been playing with DD and I hope that Jo enjoys the penguins today. Thinking of you all often, sending you a shedload of love. And to reiterate Norks - if there is anything we can do....
Chocolate, vodka, love, splodges for you - will be praying on Monday.

XXX

I'm delurking to say you are so amazingly brave and I am in awe of you and Joe and the love you have. You do what is best for Joe, that's clear enough.

pepperrabbit Sun 14-Apr-13 11:46:24

Oh trazzle. I don't know what we can possibly say to help or make anything better, but we are all thinking of you and your little boy.
I hope you have a happy day with the penguins.
x

hackneyzoo Sun 14-Apr-13 11:48:36

Norks and Stoic said it so well and I echo what they said, I would love to help your family and your beautiful Joe in any way I can.

Bakingnovice Sun 14-Apr-13 11:53:59

Another one here willing to do anything to help. Thinking of you trazzles and of the beautiful blue eyed jo. X

mummylin Sun 14-Apr-13 12:00:24

Another. Person who has been following your story. I am so sorry to hear what is happening. Praying for faulty machinery here in Dorset .

5madthings Sun 14-Apr-13 12:01:10

Oh trazzle there is nothing i can think of to say other than bastard cancer.

Have a lovely day with the penguins, sending love and strength by the bucketload and hoping for a miracle xxx

RandallPinkFloyd Sun 14-Apr-13 12:02:55

I haven't posted for a long time as I simply don't have the words but you are in my thoughts.

I still don't have the words to say what I want to say.

It's all so unfair and wrong.

Sending you all much love from the welsh hills x

FoodieToo Sun 14-Apr-13 12:06:42

I am in tears thinking of you. I hope you might get some better news tomorrow and I hope you have a lovely day today xx

pinkbraces Sun 14-Apr-13 12:07:08

Im so sorry to hear this - I dont have the words to express how awful this is but am sending you much love and strength x

ratbagcatbag Sun 14-Apr-13 12:07:58

Another one delurking to just say you're in my thoughts. As said above ad far better than I could, if you want anything for joe please just say.

QOD Sun 14-Apr-13 12:11:10

You're often in my thoughts, I'm so sorry, sending you strength xx

upto11 Sun 14-Apr-13 12:11:56

Like many others, I'm finding it hard to find the right words for this most fucking awful situation.

Please do know though that you, Joe and your family are very much in my thoughts. Xxxx

GaryBuseysTeeth Sun 14-Apr-13 12:12:22

SO, so sorry to hear the news, hope you all manage to have a lovely day today.

Sending you lots of love & strength, echoing others, anything we can do to help you just say the word. xx

PollyLogos Sun 14-Apr-13 12:19:40

Thinking of you all and sending love.

CalamityJones Sun 14-Apr-13 12:25:09

I am so very very sorry.

I am so sorry to hear this update. It's so bloody unfair.

Thinking of you all.

MarnieMadden Sun 14-Apr-13 12:37:19

Thinking of you all, and hoping for more positive news tomorrow. X

Almostfifty Sun 14-Apr-13 12:37:47

Everyone up thread has said it so much better than I ever could.

You are in a lot of people's thoughts. Hold onto that.

toffeelolly Sun 14-Apr-13 12:37:56

So sorry trazzle, still praying hard for your little Joe everyday. xxx

motherinferior Sun 14-Apr-13 12:39:01

I am so very sorry.

BiBiBroccoli Sun 14-Apr-13 12:39:31

I am so sorry to read of the latest turn in Joe's treatment. I am sending love and prayers.

There are no words that seem sufficient but you are all very much in my thoughts xx

GettingGoing Sun 14-Apr-13 12:39:57

I'm so sorry

So sorry. Thinking of you all. X

Engelsemama Sun 14-Apr-13 12:45:03

Delurking. Thinking of you and little Joe. x

SantanaLopez Sun 14-Apr-13 12:48:11

Thinking of you all x

infamouspoo Sun 14-Apr-13 12:53:29

<hugs> There are no words

LtEveDallas Sun 14-Apr-13 12:59:10

I don't know what to say Trazzle. You are all so very brave and strong. I wish there were some magic words that would take all this away. You are in my heart and my thoughts.

TheSecondComing Sun 14-Apr-13 13:02:10

Message withdrawn at poster's request.

orangina Sun 14-Apr-13 13:05:50

Oh Trazzle, have been lurking on your threads and am so gutted to read this. You are very much in my thoughts, all of you. Sending very many positive vibes to you and extra for Joseph. xxxx

So so very sorry to hear this. I am Leedsish too if you need anything at all xxx

IwishIwasmoreorganised Sun 14-Apr-13 13:09:32

Trazzles, I'm so sorry to hear this awful update.

I'm here with chocolate, brew wine and flowers but would love to do something more practical to kick the bastard cancer into touch.

Tomorrows meeting is going to be tough no doubt, gingers are staying firmly crossed and thoughts are with you all.

Xxxxxxxx

MissAnnersley Sun 14-Apr-13 13:11:02

Am so very sorry. Thinking of you all. xx

Manchesterhistorygirl Sun 14-Apr-13 13:11:10

Oh sweetheart I'm so sorry to hear your news about Joseph.

Can I out you in touch with these people please
Www.reubensretreat.org if you wanted someone to talk to who has been where you are now. Nicola, Reuben's mum is an amazing woman, and the retreat was set up to help in situations like yours. Iirc I think you're also not very far away from her either.

Not much else I can say to you, but sending my love to you and yours. Cancer is an evil bastard.

dothraki Sun 14-Apr-13 13:14:52

Trazzle - praying for Joe, and all of you x

FanjoForTheMammaries Sun 14-Apr-13 13:21:41

Thinking of you x

TallGiraffe Sun 14-Apr-13 13:30:04

So so sorry to hear this. Sending you love and prayers from Lancashire.

OrWellyAnn Sun 14-Apr-13 13:37:35

Frazzle, I'd second what was saify thread about some sort of mnfund to get Joe to DLP if it's feasible health wise. I've followed your progress and wanted to just send you a big hug. I've PMed you too. X

OrWellyAnn Sun 14-Apr-13 13:38:02

Trazzle, flipping iPad.

Janneke Sun 14-Apr-13 13:38:08

So sorry to hear your very sad news sad. So soul destroying after everything Joe and your family has gone through.

Dylan Hartung had refractory neuroblastoma and could not be treated in Australia but was treated at MSKCC and is now classified as stable. He was diagnosed as refractory at five years old and is now classified as stable at 14 years old after treatment at MSKCC.

Dylan's blog in which his mum describes his treatment at MSKCC

MadamGazelleIsMyMum Sun 14-Apr-13 13:39:28

Thinking of you all x

Fayrazzled Sun 14-Apr-13 13:47:37

Trazzles, I'm not far away from Leeds and if there is anything I or other local MNetters can ever do anything to help, please let us know. Not just now, but anytime, however small or big.

Am thinking of you, Joe, your DD and the rest of the family.

And I'd be in for helping Joe get to DLP if there was any way we old help make it possible.

Much love.

Nicnocknoo Sun 14-Apr-13 13:48:25

Trazzle - I have followed your threads for a while. I don't know what to say but couldn't not say anything. So desperately sorry to hear the latest news. Will keep praying for you all.
You are amazing. Now is the time to ask, we cannot give you what you want most but ... there are so people on here thinking of you.

yani Sun 14-Apr-13 13:55:02

Trazzle - So sorry to hear this. You have been in my thoughts.

Maat Sun 14-Apr-13 13:59:41

Trazzle - I cannot find the words to express how deeply saddened I feel for you and your family right now.

Sending love to you all. xx

EvianBaby Sun 14-Apr-13 14:03:39

Sending you all lots of love. I have some experience of what you're going through (but at the beginning of a diagnosis) & feel so sad for the pain you must be feeling. I hate that so many children are going through this. It's not fair. Take care x

Furball Sun 14-Apr-13 14:07:16

Thinking of you all xx

Velve Sun 14-Apr-13 14:08:32

I am relatively new to MN and new to Joseph's story but I'm delurking to say how sorry I truly feel. I don't have any other words to say. This must be so devastating. sad
x

superfluouscurves Sun 14-Apr-13 14:10:20

Just got back from holiday and I can't adequately express how very, very sorry I am to read your most recent news. Still praying hard and sending you all strength for tomorrow's meeting. Hope Joe enjoys the penguins today xxxxx

redwellybluewelly Sun 14-Apr-13 14:11:11

I'm so sorry I truly am, there are thoughts and love being sent to you all from a small windy bit of the East Coast x

HokeyCokeyPigInAPokey Sun 14-Apr-13 14:11:59

I am so sorry to hear that. Sending you all much love & strength. x

tribpot Sun 14-Apr-13 14:22:24

Btw I don't know how long Joe has been in the wheelchair but if you don't yet have wheelchair-accessible transport of your own, I have a van with a wheelchair lift in it which can go all the way to Disneyland Paris if it needs to.

Trazzletoes Sun 14-Apr-13 14:24:59

Thanks for the wheelchair info and offers. It's very kind of you.

Although he is the size of a 5 year old and unable to walk he miraculously still fits in our double buggy so that helps too.

It's very kind of you though.

Trazzles the title of your thread is beautiful. Really truly. Your words are so vivid I can picture him and the delightful boy that he his.

I'm so very, very sorry to read the latest news. I think you are very brave and know you will make all the right decisions for Joe.

To add to the chorus of voices I too would be willing to contribute to ensuring that Joe has his whims met, that you have yourself supported and that your family feel like they aren't alone. Practical stuff, experiences, driving elderly relatives from the south, tea, playmobil, stickers, penguins, fundraising. I, and many others, can do that and will do what we can to help you.

PS love that DD rubs his head - I've got a lovely video of DS4 rubbing his hands and face on his father's head when he is putting on his shoes. Very special

pageturner Sun 14-Apr-13 14:52:04

So sorry to hear the latest news. I have followed your threads and send all positive thoughts and vibes possible. Thinking of you all. x

Coming out of lurkdom to say how desperately sorry I am to hear this news. There are no words to express how cruel and unfair life can be. Sending you so much love and strength.

nothruroad Sun 14-Apr-13 15:04:46

I am so very sorry to hear this news. You and your family are in my thoughts and prayers.

MintyyAeroEgg Sun 14-Apr-13 15:14:47

Oh Trazzle! heart is hurting for you so very much x

lunar1 Sun 14-Apr-13 15:15:03

I have followed your threads from the start and am so sorry to read this. Please if there is anything you need we are here for you.

Trazzles - I am still here if there is anything I can do. Still can't think of anything remotely useful but I am here.

FriskyBivalves Sun 14-Apr-13 15:27:01

Trazzle, I have PM'd you. I am so very sorry to hear your latest update. Please ignore the stuff in the PM about the cot...duh.

Startail Sun 14-Apr-13 15:29:15

Tazzle, there are no words. DD2 is mad on penguins, I hope Joe enjoyed them.

Annunziata Sun 14-Apr-13 15:29:18

Praying for you and your lovely wee boy x

ClaraOswald Sun 14-Apr-13 15:32:16

Trazzle, I am so sorry to read this.

Trazzle.

I have access to a holiday cottage in a little village in the Cotswolds called Painswick.

Its really beautiful.

I can also get you tickets to Cotswold Wildlife Park, which has flocks of flamingos, and pengins that you can get close enough to touch. (google it)

Also, there is a lovely swimming pool locally, and sea life centres, and a gazillion other things to see and do within about an hours drive (I have a seven seater car and can drive you around at your request if you dont have your own car).

Say the word and I will reserve you a few days stay. Free of course x

CabbageLeaves Sun 14-Apr-13 15:41:28

Trazzle I'm sure you are overwhelmed. I wish you and yours, a calm time and much love and support to help you through.

JulesJules Sun 14-Apr-13 15:49:01

sending love xx

Ginismyfriend Sun 14-Apr-13 15:52:50

Trazzle I have been following your threads and not known what to say, but you're a truly amazing mum. I am hoping and praying for you all. Not far from Leeds so, as lots of other people have said, I will help however I can.

narmada Sun 14-Apr-13 15:52:54

Oh no, what a terrible time. Life is so cruel. I would be willing to contribute anything too, but I get that material things are only a sticking plaster.

If you decide agsintst further treatment then no-one would blame you. At all. And if you decide to go to MSK in the states, if eurodisney looks even slightly possible, whatever, I can only reiterate what others on here have said - we will help to make it happen.

ReluctantlyBeingYoniMassaged Sun 14-Apr-13 15:56:26

Thoughts from Wakefield xx

elliepac Sun 14-Apr-13 16:02:35

trazzles words seem inadequate right now but please know that i am thinking of you and your beautiful Joe and your lovely family. I send you my prayers and my love.

Jollyb Sun 14-Apr-13 16:04:43

Am so sorry Trazzle x

expatinscotland Sun 14-Apr-13 16:04:52

MSK treatment may not be an option. It depends on the type of neuroblastoma a person has, as to what their treatment options worldwide are. Also, some treatments are only offered, worldwide, to those who have exhausted worldwide protocol.

I'm sure the consultant will know, but without knowing the particular case it's hard to say.

This was true in our daughter's case, different cancer, obviously, but there was a trial (now suspended as it failed) for those who had already undergone stem cell transplant and had relapsed. It was not open to others. We had others posting about treatments that would not apply to her. It's nice, to give that hope, but it wasn't really a hope for her because it wasn't available to her due to her form of cancer.

Similarly, some treatments you read about, and I'm thinking of a personal friend of mine, the treatment is not known to be a cure. It is to hopefully prolong life, and so some decide the risk and quality of life following treatment may outweigh benefits.

Again, a decision for the parents to make with their medical team and I wish you all the strength in the world, Trazzle.

CuntAlors Sun 14-Apr-13 16:06:57

Oh trample, I've been thinking about you and I'm gutted to read this thread. Much love, thoughts and prayers to you and your family. X

CuntAlors Sun 14-Apr-13 16:08:41

Bloody auto correct - trazzle, not trample. Sorry.

TheCountessOlenska Sun 14-Apr-13 16:22:49

De-lurking (again) for the new thread. My thoughts are with you Trazzle and have been all day xxx

PseudoBadger Sun 14-Apr-13 16:23:03

Trazzle, I've been writing posts all day and deleting them, as they all sound inadequate and empty. All I can do is say how very heartbroken I am for you all, and I wish that there was something that MN might could do to make Joe better, and give him his time that he so deserves.
I have a small cuddly penguin that I'd love to send to Joe, if he'd like it please please let me know xx

Trazzletoes Sun 14-Apr-13 16:30:38

Thanks expat you are right. Also, Joe is at the lowest point, healthwise, in his treatment protocol so other treatments may not be an option as he is so vulnerable right now.

I have no problem with people posting information though. It doesn't give us hope, IYSWIM, just more to discuss with his consultant.

Trazzle, what can we do, how can we help? I know you probably don't want to do any thinking you don't have to do, but if something comes to you, just post on here.

Thinking of you all.
Like so many others, I would do anything I could to help.

Trazzle, there are no words I can say that would in any way help, or be wise or even apt.
All I can say is that you and yours are continually in my thoughts.
Sending love x

BIWI Sun 14-Apr-13 17:24:27

Trazzle - I so didn't want this post to be by you/about Joe sad

Wishing you every ounce of strength to deal with the days, weeks and months ahead. And know that we are all here for you if there is anything that we can do.

xxx

RubyrooUK Sun 14-Apr-13 17:36:17

So so very sorry to hear this news Trazzle. Thinking of you. X

sittinginthesun Sun 14-Apr-13 17:44:28

Trazzle - another one delurking, and sending love.

Nooneelseisallowedafergus Sun 14-Apr-13 17:59:04

Sending love and hoping for miracles for joe. X x

cowmop Sun 14-Apr-13 18:06:22

I've only posted once before to you, but you have all been in my thoughts and prayers since your first post. I'm so sorry about this devastating news and want to send you all love and strength.

As others have said please don't hesitate to ask for anything we can help with, there will be a queue of offers.

xxx

StoicButStressed Sun 14-Apr-13 18:52:26

Trazzle - I so wish there was some kind of 'love'o'meter' or 'support'o'meter' so you could really see and feel just HOW much we all care. Please let us help?

Also (& I am so sorry if this is a stupid question/assumption), but when you say 'Joe is at the lowest point, healthwise, in his treatment protocol so other treatments may not be an option as he is so vulnerable right now, does that mean he will regain strength now that treatment protocol that he has already been through has abated?

And I know so many others have said this in reply to you already, but I have to join them... Only YOU know what is right for your son and what decisions you should make now. The one thing I can PROMISE you is that NO-ONE will 'judge' you - quite the reverse. You are awe-inspiring, an amazing Mamma, & your strength - and love - in the face of this has been nothng bar inspirational. Am thinking of all of you constantly. Stoic xxx

RatherBeOnThePiste Sun 14-Apr-13 18:55:27

Always here for you Trazzles, so much love to you all Xx

travellingwilbury Sun 14-Apr-13 18:57:00

It has all already been said but bloody Hell I am so so sorry things have taken a turn this way , for every one person that posts there are at least a dozen others who are standing with you through this .

Many people hoping and crossing gingers for Joe and his wonderful family .

so very sorry to hear this.

Janneke Sun 14-Apr-13 18:58:45

Agree expat that you need to find the right trial given the specifics of each individual patient. Also, further treatment may not be an option for other reasons.

However, MSKCC are the largest neuroblastoma treatment centre in the world and to my knowledge don't often seem to turn people away as they have so many trials on-going at any one time. However, they are very very expensive and although they have better outcomes than most centres, a cure is never guaranteed as it is such an aggressive disease.

Another option is CHOP in Philadelphia, but I am not sure if they have any trials open to refractory neuroblastoma patients, ditto with Greifswald and the Tübingen.

Possibly The Neuroblastoma Alliance may be able to help with finding a trial.

Sending huge amounts of love to you all xxxx

expatinscotland Sun 14-Apr-13 19:18:27

If a trial is in fact open. But for now, it is dependent on what the team and Trazzle and Joe's father decide together. They know their child and his condition more than we. So all love, support and strength to them all smile. Have been there, Trazzle, albeit with a different cancer, and just want to let you know we are here for you and Joe. No matter what.

ArabellaBeaumaris Sun 14-Apr-13 19:24:42

I'm so sorry to hear this. My thoughts are with you x

AMumGoingMad Sun 14-Apr-13 19:28:33

((((())))) Trazzle. I'm so so sorry to hear this terrible news. I've been praying for Joe for months and I will continue to pray for you all in this terrible terrible time. I wish there was something I could do for you all but everything I think of seems so insignificant, just like my words. I hope that you have been able to enjoy your weekend at home together with smiles and laughter. We are all here to help and give you whatever you need. Just ask.

ohmeohmyforgotlogin Sun 14-Apr-13 19:35:16

So sorry to hear this. Wishing you all strength and love. Ps I have a pingu pyjama case soft toy thing about 2 foot long. He is welcome to it if you would like.

elfycat Sun 14-Apr-13 19:56:39

De-lurking. Not much more to add from what has been said already. Except there really is a small army of us here if you need anything.

Oh Trazzle, hugs to you all. Praying for your beautiful boy. sad

lisad123everybodydancenow Sun 14-Apr-13 20:00:04

Message withdrawn at poster's request.

oneandnomore Sun 14-Apr-13 20:10:54

Oh Trazzle, so sorry to hear this. I often think of Joe and you all.

Please, if there is anything we can do for you and your lovely family, do ask.
Sending hugs and much love to you all.

desertgirl Sun 14-Apr-13 20:18:44

Trazzle, I have nothing to say that everyone else hasn't said better, but am so so sad to hear this. Holding you all in the light.

lougle Sun 14-Apr-13 20:26:46

Trazzle, it's good to know that you have a team around you, who can guide you as to the best steps now. I agree with expat, those decisions are to come.

Anyway, how were those penguins?

Sounds like you'll have a tough day tomorrow with hard discussions. I will be thinking about you all day as I was today, and I know there will be hundreds of us, all holding you and Joseph and your family in our thoughts.

TheOldestCat Sun 14-Apr-13 20:34:04

Sending love (and happy penguin thoughts) to you all. Thinking of you, Joe and all his family and friends x

GoingGoingGoth Sun 14-Apr-13 20:36:25

Thinking of you and your family.xxx

madamimadam Sun 14-Apr-13 20:41:11

You, Joe and your family are in my thoughts and prayers xxxxxxx

Badvoc Sun 14-Apr-13 20:49:23

Thinking of joe tonight, as usual.
Will be thinking of you tomorrow, and hoping for a chink of light in the darkness.
Sending love xxxx

weblette Sun 14-Apr-13 20:51:23

Trazzle I've hesitated about posting as a friend's son struggled against this bastard disease but lost his fight. He did more in his last two years than most people did in their lifetime so I would say 100% talk to Candlelighters - I fundraised for them as a teen.
Whatever life holds in the future for Joe, if there are people who can do things now, seize that chance.
Thinking of you x

blizy Sun 14-Apr-13 20:54:14

Thinking of you tonight and splodging from Glasgow. X

BarmeeMarmee Sun 14-Apr-13 21:05:00

Oh Trazzles. Bastard bastard cancer. More prayers, love and splodges from Bucks. And another saying if there is ANYTHING at all we can do...

Just saying goodnight to all the trazzles and hope tomorrow brings some tiny joys and a big miracle

Imsosorryalan Sun 14-Apr-13 21:22:23

So sport to hear this. hmm Stay strong for him. Xx

Delurking to send love, so sorry to read this.

thewhistler Sun 14-Apr-13 21:25:04

Strength and prayers and love to surround you all and hold you up.

CousinArnold Sun 14-Apr-13 21:31:49

Trazzles, I have been following your story for a while, although I haven't posted before. I am so sorry to read your devastating news.

I have no words of wisdom, I'm afraid, but hope I can add to all the words of comfort on here.

I am thinking of you and your family, and sending lots of hugs your way x

NatashaBee Sun 14-Apr-13 21:36:57

Still thinking of you, Joe and your family (and marking my spot in case there's anything the collective power of Mumsnet can help with).

pinkhousesarebest Sun 14-Apr-13 21:37:38

Will be thinking of you all tomorrow.

maxmissie Sun 14-Apr-13 21:43:49

Have also de-lurked to send love, light and hope to you all from Nottingham. Thinking of you, Joe and your family, xx.

Thurlow Sun 14-Apr-13 21:44:12

Just checking to say I hope Joe enjoyed the penguins, and that you get some sleep tonight, and I will be thinking of you tomorrow x

MildredIsMyAlterEgo Sun 14-Apr-13 21:45:35

So sorry Trazzle
Life can be so unfair, it's impossible to make sense of it
Sending you and all your family love and hugs x

BoreOfWhabylon Sun 14-Apr-13 21:45:56

Delurking to say that I have been following your threads about your beautiful boy since your very first post.

Sending love and strength to you, Joseph and all your family xx

Catmint Sun 14-Apr-13 21:49:50

Thinking of you. X

ALMOSTMRSG Sun 14-Apr-13 21:50:25

Will be thinking of you and your family tomorrow. X

simpson Sun 14-Apr-13 21:51:38

Did Joe like the penguins?

Hope you had a lovely day today, all together.

Much love xxx

Trazzletoes Sun 14-Apr-13 21:55:18

Ok so I can finally give a bit more detail.

Joe had a scan on thursday which shows bright spots of light where there is neuroblastoma. We found out on Thursday that it looked like there might be something in his head, but there was a possibility that it could be like a smudge on the machine.

Joe was re-scanned on Friday and we had the news that there appear to be 2 tiny dots in his brain that weren't there before. One is on his brain stem. The brain stem controls breathing and heart rate and the like.

As yet, the doctors are "not 100% certain" that these spots are neuroblastoma but they do not believe them to be anything else. These new spots would show that the cancer is progressing and hasn't responded properly to the treatment.

This is, in the words of the doctors, a very very bad thing.

There is little treatment available for these kinds of things, and with one of the spots being on the brain stem it may not be treatable, or alternatively the risk to Joe may mean that we would not want it treated, if you see what I mean, if it could cause damage to the brain stem.

We are seeing the consultant tomorrow and he may or may not be able to tell us more but we fully expect the news that Joseph can't be cured. Although this hasn't already been specifically said, we know from what we know about neuroblastoma and what the doctors have already said.

This is not me being defeatist. I am not giving up on my son. This is the reality of neuroblastoma. It is the biggest cause of death in children in the UK if you discount accidents.

He loved the penguins, thanks, and thanks for the PMs too. I will endeavour to reply to them.

Sirzy Sun 14-Apr-13 21:57:38

Oh no, I wish I could say something positive and I really hope you get some news which sways towards positive tomorrow. Thoughts with you all.

Glad he loved the penguins!

BarmeeMarmee Sun 14-Apr-13 21:58:09

Oh Trazzles, I don't have the words but just know we are all here, virtually hand holding, or if you prefer with our arms around you all, thinking of you and hoping that tomorrow brings better news than you expect.

Manchesterhistorygirl Sun 14-Apr-13 21:58:09

Oh my darling, I don't know what to say but I'm sending you all my love in the hopes it gives you a tiny amount of strength in your journey.

Hugs. X

dothraki Sun 14-Apr-13 21:58:19

Tonight my darling I am praying for you and Joe x

That's crapsad

simpson Sun 14-Apr-13 21:59:03

Thanks for updating us.

So sorry to hear the latest news sad

I will be thinking of you tomorrow...

There is so much I want to say but just don't have the words sad

bastard cancer

WouldBeHarrietVane Sun 14-Apr-13 21:59:05

I am so so sorry to hear that sad

SilveryMoon Sun 14-Apr-13 22:01:19

Oh Trazzles sad I am so so sorry to hear this. x

nenevomito Sun 14-Apr-13 22:01:35

So sorry to hear this Trazzletoes. Sending all my love to you and your family and hoping for the best tomorrow xx

5madthings Sun 14-Apr-13 22:02:03

Oh trazzle I am sorry, there are no words but I am hoping against hope for you all.

Will be thinking of you tomorrow, sending love and strength xxx

MrsDeVere Sun 14-Apr-13 22:03:15

Of course you are not giving up on your son.
Of course not. Its not like that.

I just isn't.

I am sorry x

travellingwilbury Sun 14-Apr-13 22:03:52

Bastard buggering cancer !

sybilfaulty Sun 14-Apr-13 22:05:11

I am so sorry to read your update. Love and strength to you all for tomorrow. Big hugs XX

MintyyAeroEgg Sun 14-Apr-13 22:07:08

No you are not giving up on your son! It is what it is.

Dear little Joe has hundreds if not thousands of mumsnetters loving him and thinking of him right now at this very moment X

coreny Sun 14-Apr-13 22:10:59

I am so so sorry. x

trazzle you must feel like you are in a nightmare.

I can get my hands on lots of penguin postcards and a cuddly penguin too, so let me know if you would like a batch sending up to you.

I am desperately hoping that you get some ray of hope from tomorrow's meeting, so much.
Xx

ajandjjmum Sun 14-Apr-13 22:11:19

So sorry - praying the news tomorrow is not as bad as you fear. x

barefootcook Sun 14-Apr-13 22:13:47

I am so sorry to hear your horrible, horrible news Trazzle. Please let us know what we can do to help. There will be lots of hidden resources here and we are all keen to make things happen. The penguin visit could be tricky but not be impossible! Let your imagination run wild! My thoughts and prayers are still with you all.

thecatfromjapan Sun 14-Apr-13 22:13:51

You and Joe, and your family, are in my thoughts tonight.

Joe is a lucky little boy to be so loved.

May you all find the strength you need.

Good luck and warm wishes to you all, Trazzletoes.

IwishIwasmoreorganised Sun 14-Apr-13 22:14:23

There's no way that you're giving up on dear Joe. You're still doing exactly what you've done since the start - the best that you can.

Bastard cancer is shit and unfair. There's no two ways about it.

Hope tomorrows meeting gives you some answers to the many questions that you no doubt have.

Xxxx

tangledupinpoo Sun 14-Apr-13 22:19:03

Trazzle, I am devastated for you all. This bastard, revolting disease. Sending you all so much love and echoing all the offers of help, in any way. X

I'm so so sorry, I wish there was something that I could do to help. Much love xx

narmada Sun 14-Apr-13 22:28:07

I cannot imagine what you must have felt when you got those results.

Trazzle sad (((hugs)))

No-one with an ounce of common, compassion, or empathy would think you were giving up on your son. No-one worthy of your time of day.

TigerFeet Sun 14-Apr-13 22:34:00

sending love to you and yours Trazzle xx

MintyyAeroEgg Sun 14-Apr-13 22:34:04

Just wanted to add that I am a huge fan of penguins too and here is my favourite ever penguin clip which I hope Joe will enjoy lots and lots!

Still praying.
Glad he enjoyed the penguins.
No decent parent 'gives up' on their child. Whatever you do with the information you're given, the decisions you make will be come from your love for him.

landofsoapandglory Sun 14-Apr-13 22:39:29

I'm so sorry Trazzles.

Much love to you, Joe and all of you family.xxxxx

SESthebrave Sun 14-Apr-13 22:43:10

Thinking of you and wishing we could do more x

Doubtitsomehow Sun 14-Apr-13 22:43:41

Continued thoughts, hopes and prayers.
every parents nightmare
If there is anything you want or need, please say.

ALMOSTMRSG Sun 14-Apr-13 22:47:07

I'm so very very sorry Trazzles. You and your family will be in my thoughts. X

lougle Sun 14-Apr-13 22:49:15

Trazzle, thanks for the update. I used to work in neurosurgery, so have a little experience of the situation you are in, although not from the same angle.

You aren't giving up on Joe. You aren't being defeatist. You are taking each day as it comes, making the best decision possible on that day.

It's all you can do.

Hassled Sun 14-Apr-13 22:49:19

Thank you so much for taking the time to update us all - they must have been very hard words to write. And as always, your love for Joe shines through.

Alibabaandthe40nappies Sun 14-Apr-13 22:52:29

Trazzles no-one is going to think you are giving up on your son. You have been dealt the shittest of hands.

Much love and strength to you all xx

Have read your updates. Ok Trazzles, you know,I hope, that our hearts are with you and Joe. Our prayers and thoughts and anything practical that can be done (I am also near Leeds). I think you are very wise and your loving care of Joe is inspirational. You've always made the right calls. I know you'll keep on making good choices for Joe.

seeker Sun 14-Apr-13 22:56:47

Please don't feel that you have to reply to anyone- pm or not. I hope I can speak for everyone when I say that we want you to know that we are as with you as we can be- but we don't want to add even slightly to your burden. So any messages we send you we expect to be one way only. Don't spend even a heartbeat thinking about replying, unless it will make you feel better. We will continue to send you our messages of support- take what you can from them- but don't feel a obliged to do anything about them. You are in our thoughts- that is all you need to know.

bobkate Sun 14-Apr-13 22:57:32

oh jeez Trazzles sad, I read this last night and was utterly lost for words...so very gutted for you all that, after all his little body has been through, the bastard cancer seems to have survived. Devastating news for you all and I can only echo everyone else by saying that you are in my thoughts, all of you, and I shall continue to splodge and pray ( in my non godly fashion ) and willing with all my willingness that there is to be some news tomorrow that can offer you some hope. Huge hugs and much love xxx

thewhistler Sun 14-Apr-13 22:58:12

Of course you are not being defeatist, you are being practical and measured while your heart is breaking.

Thank you for telling us.

We will all pray or do the equivalent for Joe and you.

BriansBrain Sun 14-Apr-13 22:59:42

Adding to the support and offer for help and need x

narmada Sun 14-Apr-13 23:02:31

I had the same thought as seeker and I hope you only continue posting here cos it helps you in some way, and not out of some imagined duty to update us all.

onedev Sun 14-Apr-13 23:04:55

I don't know what to say - so sorry & praying for a miracle tomorrow.

Had a thought - a friend of mine (a nurse) volunteers with a charity which takes sick children to Lourdes. If you do want to take Joe to France I'll see if I can get a contact name with the charity as they must surely know how to manage some of the issues which may come up.

lisad123everybodydancenow Sun 14-Apr-13 23:10:06

Message withdrawn at poster's request.

LegoAcupuncture Sun 14-Apr-13 23:12:10

Will keep you all in my thoughts tomorrow.

Glad he enjoyed the penguins.

moreyear Sun 14-Apr-13 23:13:47

I am so sorry. You are all in my thoughts and prayers.

ChippingInLovesSpring Sun 14-Apr-13 23:33:21

Trazzle - I just wanted to send you more love & more strength to keep putting one foot in front of the other - especially tomorrow. It's one thing to 'know' - it's another to be 'told'... I'll be thinking of you.

You and DH will make the best decision for Joe (if there is a decision to be made) - we all know that x

But, to reiterate what others have said - IF there is any chance that going to the States will help and it's not funded then we will all do everything we can to make sure Joe gets the money he needs.

Bastard Neuroblastoma angry
sad

Much love
xxx

ReindeerBollocks Sun 14-Apr-13 23:35:20

I am praying for you all, but mostly for Joe.

You are doing the best for your boy, that is the right thing x

Asheth Sun 14-Apr-13 23:49:34

No one would ever think you are giving up on your son. The love you have for him shines through in every post you write. And everyone here knows that you will make the best decisions possible in this nightmare situation.

While I live too far away to be of any practical help I will be here for virtual handholding and hugs. And if there was a fund to help Joe get to Disney Land or anything else he wants/needs then I would definitly contribute.

I shall be thinking of you tomorrow. And continuing to send Joe lots of love and prayers. xxx

Thinking of you. If only wishes really did come true. Sending you strength for tomorrow, and all the other tomorrows.

With love. xxxx

So indescribably sad, and unfair. Praying for a miracle for Joe and strength for all of you.

TabithaMcKitten Mon 15-Apr-13 00:26:49

I am so sad for you all that this has happened - it is incredibly unfair.

When my son was diagnosed with leukaemia, I had a little epiphany about how there are no guarantees in life and that my role was simply to ensure my children's lives were happy and full of love, and that, as a mum, your job is to do the absolute best for your child at all times. I very much admire that you are continuing to be able to consider what is right for Joseph, despite the fact that it is hurting you. You are continuing to put him first at all times and that just shows how much you love him and what a fantastic mummy you are for him xxxx

twofalls Mon 15-Apr-13 00:49:40

Trazzle, another one who has not posted before, I am so so sorry. I have been thinking of your family all day. Wishing you all the strength in the world.

kitsilano Mon 15-Apr-13 02:41:31

I have been lurking and am so sorry to hear your news. My very close friends have just been through this and lost their son to neuroblastoma in February. My heart goes out to you. I know you will do the very best you can for your son and that is all you can do. Accept help, look after yourself as well, treasure every moment and say YES to every opportunity and offer you get.

Here is my friends' blog about their experience. No need to even look if you dont want to but just in case it might help in some way

alexsharpsblog.wordpress.com/

MyShoofly Mon 15-Apr-13 02:59:12

I am so sorry...have been thinking about Joe all weekend. So bloody unfair.

judge you? god your going through everyone parents nightmare...nobody can judge you.

peace, hope and blessings to you and your family Trazzle

sassytheFIRST Mon 15-Apr-13 03:27:21

So very sorry xx

conorsrockers Mon 15-Apr-13 05:53:54

After everything you've all been through. I'm so sorry sad

tholeon Mon 15-Apr-13 06:39:30

You are not giving up on him, of course. He is too little to have an awareness and fear of mortality and that I guess is one blessing in this utter shit. You and the others who love him are doing that for him.

Do you have enough practical support? Someone to clean the house and cook you some meals so you can concentrate on being together? Love x

bobkate Mon 15-Apr-13 06:58:50

Thinking of you xxx

lucidlady Mon 15-Apr-13 07:18:24

Thinking of you all x

5madthings Mon 15-Apr-13 07:32:28

Thinkinh of you this morning, hoping the news today is not as bad as you fear.

I hope Joe had a peaceful at at home in his own bed and you managed some sleep as well xxx

I echo everyone else that you are not giving up on Joe, you will do what you know best for your son.

Much much love and strength xxx

Badvoc Mon 15-Apr-13 07:39:04

Will be thinking of you all today dearest trazzles xxxx

Kyrptonite Mon 15-Apr-13 07:42:58

Thinking of you all xxx

Turquoiseblue Mon 15-Apr-13 07:43:21

De lurking to send you and your family support trazzle. There are no words adequate to take away your pain but I hope you find some support from the kindness and love here.

HubbaHubbaHubbaInHoobLand Mon 15-Apr-13 07:45:01

I am so sorry for your news. You and your family will be in my thoughts today.x

D0GWithAYoni Mon 15-Apr-13 07:50:12

Oh trazzle. I don't know what to say sad this is just the most terrible news I am so desperaty sorry for all of you.

minmooch Mon 15-Apr-13 07:59:29

Thinking of you all today. I hope beyond hope that there is a chink of light somewhere or at least the consultants can offer a plan of care that you can find some peace with.

(((((((((( many hugs ))))))))))

'Love never fails'

Thinking of you all today

toomuch2young Mon 15-Apr-13 08:13:06

Thinking of you all today and hoping desperately for that chance of better news.
I am so so sorry Trazzle, i don't have the words to say, but thinking of you all and sending love x

4lovelychildren Mon 15-Apr-13 08:13:08

Thinking of you, Joe, your husband, your daughter and your wider family and friends today. I'm lost for words but just wanted to tell you that your strength and kindness has touched my heart xx

oneandnomore Mon 15-Apr-13 08:22:30

Thinking of you all today Trazzles.
Sending you all strength and (((((hugs)))))

Thinking of you trazzles today. X

SarahJinx Mon 15-Apr-13 08:52:23

Will be thinking of you and your family today Trazzle, hoping for hope for you all x

upto11 Mon 15-Apr-13 09:01:23

Thinking of you all today x

orangina Mon 15-Apr-13 09:14:33

Thinking of you all today and hope for the very best results from your consultant visit. xx

StoicButStressed Mon 15-Apr-13 09:18:39

All thoughts are with you right now Trazzles, and I pray that your understanding of what you believe you are now facing stands you in good stead if that is what is confirmed today. Equally I - like all of us I guess - am hoping it was a blip or mistake, but know that seems unlikely given your recounting of all and your own expectation of today.

So all I/we can do is send even more love, hugs, thoughts; to repeat please let us help in WHATEVER way we possibly can; and to reiterate that we all carry you, your whole family and especially beautiful Joe in our thoughts and hearts today xxxx

sleepythegiraffe Mon 15-Apr-13 09:26:57

Thinking of you all today. X x x

monkeychambers Mon 15-Apr-13 09:35:02

Thinking of you all today. XX

Another one de-lurking to hold your hand.

Praying for a chink of hope for you all. God knows you deserve it - you, Joe and the rest of r Trazzles are amazing.

MoaningYoniWhingesAgain Mon 15-Apr-13 09:40:48

Thinking of you all. And a gentle squeeze for Joe XXX

Hmmkay Mon 15-Apr-13 09:44:09

Praying for a miracle today for Joe and holding your hand xxx

TanteRose Mon 15-Apr-13 09:45:07

thinking of you all, Trazzle xx

MyHusbandRoy Mon 15-Apr-13 09:47:05

Thinking of you all xxx

ToffeeWhirl Mon 15-Apr-13 09:49:53

Wishing you strength today. And that the consultant will offer you hope. xxx

Ruprekt Mon 15-Apr-13 09:57:49

There are no words I can say.......just know that we are all thinking of you. xx

simpson Mon 15-Apr-13 09:58:44

<holding your hand today>

Yonilovesboni Mon 15-Apr-13 10:09:31

Praying for a miracle for you today x

xigris Mon 15-Apr-13 10:15:31

Thinking of you all today, Trazzle and especially your brave beautiful boy. Sending you lots of big unmumsnetty hugs xxx

eosmum Mon 15-Apr-13 10:20:17

Wish there was something we could say or do. But we are thinking of you, and praying for a miracle.

RalphGnu Mon 15-Apr-13 10:20:35

My thoughts are with you all today xxx

catclarks Mon 15-Apr-13 10:21:10

Thinking of you all today Trazzles x

Thinking of you and your beautiful blue eyed Joseph today. Sending you and your DH strength for today's meetings and conversations.

TalkativeJim Mon 15-Apr-13 10:34:45

A lurker on your threads - keeping fingers crossed for better news than you expect today x

carbalanche Mon 15-Apr-13 10:37:20

My thoughts are with you. Your son looks such a sweetheart and I am so sorry he is having to go through this. If only love could fix things. Bless him and all your family.

lougle Mon 15-Apr-13 10:40:15

Thinking of you this morning.

Late to the thread, but really, what everyone else has said, I couldn't put any better. Thinking of you today, and hoping that the news is better than you expect. x

Theonlyoneiknow Mon 15-Apr-13 10:42:22

Thinking of you Trazzle and your beautiful boy Joseph xxx

Thinking of your family today trazzle

I have been following all your threads and praying for you.

luckoftheirish Mon 15-Apr-13 10:49:18

Thoughts are with you today. Praying the consultant can give you some positives xxx

GaryBuseysTeeth Mon 15-Apr-13 10:52:15

Thinking of you & your family today Trazzle.
Hope you all had a wonderful day yesterday xx

saffronwblue Mon 15-Apr-13 10:53:46

Thinking of you all today.

DianaTrent Mon 15-Apr-13 10:56:23

Thoughts with you today, Trazzles, and your beautiful boy. Much love to you, and much hatred of that evil bastard disease. I am so sorry to hear this news, you and Joseph deserve so much better than this.

Xenia Mon 15-Apr-13 11:04:19

Best wishes. If you need anything just say.

merlottits Mon 15-Apr-13 11:15:49

I'm so sorry this is happening to you and your family and your most of all your wonderful boy. Life can be completely shit at times.

There are so many people here thinking about you and praying for you. Sending lots and lots of love to you at this difficult time.

XXX

Elibean Mon 15-Apr-13 11:38:15

Delurking to add hugs and best wishes, and offers of help, as needed. What you are going through is probably unimaginable to most of us, but we can try, and we are here if you need us.

Splodges and penguins from SW London xxx

ShootingStarsss Mon 15-Apr-13 11:40:37

Thinking of you all today x

KnottyLocks Mon 15-Apr-13 11:47:33

Thinking of you all. Sending love and big, gentle hugs x

SoupDragon Mon 15-Apr-13 11:48:17

I agree with others - if you need anything, just say. We are the MN collective - we can make most things happen somehow.

Umanayana Mon 15-Apr-13 12:02:14

Delurking, just to say you're in my thoughts Trazzle. I wish I could find some beautiful words to ease your pain but all I can come up with is bastard, fucking, twat cancer. I will join in the power of Mumsnet to provide anything your gorgeous boy desires. X

clucky80 Mon 15-Apr-13 12:03:58

I am so sorry to hear this Trazzles, I have been following your threads. I M thinking and praying for all of you x

BuffyFairyTopsTheTree Mon 15-Apr-13 12:05:30

Thinking of you today, Trazzle. I hope for more positive news, that there is a ray of hope for your beautiful boy.

Whatever the news is know that we will always be here, to listen, to hold your hand, to send you love and strength.

When you know what you need please let us know and we will organise it for you.

Xx

iclaudius Mon 15-Apr-13 12:06:24

Thinking of you x

narmada Mon 15-Apr-13 12:35:33

Thinking of you all xxx

NewFerry Mon 15-Apr-13 13:02:46

You are all in my thoughts today x

CinnabarRed Mon 15-Apr-13 13:06:27

Still holding you and yours in my heart.

MmeLindor Mon 15-Apr-13 13:08:16

Sorry to hear this, Trazzles. Thinking of you all.

FairyJen Mon 15-Apr-13 13:09:16

Thinking of you today trazzles.

Like others have said, we can make anything happen, just say the word!

Xx

drjohnsonscat Mon 15-Apr-13 13:10:31

I have been offline for a few days but think of you and your family every day - of your strength and love and how much you all mean to each other.

I'm so sorry about this awful, horrible news.

ninja Mon 15-Apr-13 13:34:16

Always thinking of you.

You so clearly have Joe's best interests in your heart and mind and no-one can doubt that. He is so clearly loved and he must know that.

I hope you are managing to enjoy some family time all together xxxxxx

MarnieMadden Mon 15-Apr-13 13:41:56

Hoping for the best possible news for you all today x

Nooneelseisallowedafergus Mon 15-Apr-13 14:32:17

Thinking of you all. Gorgeous little joe, wishing hoping and willing good news for you. X x

Still thinking about you all xx

I have a Joe too and I can only imagine what you are going through. My genuine thoughts and prayers are with you x

Sorry I cant think of anything deep or comforting to say sad

anywinewilldo Mon 15-Apr-13 16:23:19

Another de-lurker here sendings hugs and XXX

chezchaos Mon 15-Apr-13 16:30:01

So sorry to hear your update, hope today has brought more positive news

Another still thinking of you today and sending love to you, Joe and all of your family xxx

Flossiechops Mon 15-Apr-13 16:41:14

No parent should ever have to go through this. My thoughts are with you all too xx

kohl Mon 15-Apr-13 17:35:28

Thinking of you today.x

toffeelolly Mon 15-Apr-13 17:40:37

Trazzle, thinking of you and your family and sweet little joe. (hug's) xx

Thinking of you today. (Hugs)

DrGarnettsEasterMixture Mon 15-Apr-13 18:46:26

You and Joseph have been in my thoughts today Trazzle x

Poppyhat Mon 15-Apr-13 18:46:58

Thinking of you and your family ,x

QOD Mon 15-Apr-13 18:50:07

So unfair, so sorry you're all going thru this. Bloody cancer.

runnervt Mon 15-Apr-13 20:06:56

Thinking of you and praying for you all.

ChippingInLovesSpring Mon 15-Apr-13 20:26:30

I've been thinking about you all day and hoping beyond hope that YOU have all been given some hope today. More love & strength on its way to you all xxx

Celestia Mon 15-Apr-13 20:58:05

So sorry this is happening to you and your lovely boy. No child or parent shoud have to go through this.

Thinking of you and hoping for the best xxx

SpringSprangSprung Mon 15-Apr-13 21:39:18

Oh Trazzles you are all in my thoughts and in my heart. Praying for you all and want to do anything I can to help.

Thinking of you all and still splodging light, love and hope.

xx

5madthings Mon 15-Apr-13 22:14:11

Thinking of you all, sending live and strength from Norfolk xx

IwishIwasmoreorganised Mon 15-Apr-13 22:19:50

Splodging and gingers.

Xxxx

maxmissie Mon 15-Apr-13 22:20:52

Thinking of you today. Your boy is so lovely.

MrsVamos Mon 15-Apr-13 22:28:34

Trazzle

Wow. What an amazing person you are.

I can only hope that if I were ever to face such a bastard of a disease with any of my DCs, that I would have the strength, courage and dignity that you do. Joseph sounds like a gorgeous, delightful little boy.

Sending you and your family much love, hugs and kisses. xxx

Chathampocket Mon 15-Apr-13 22:32:31

Thinking of you and your lovely family xx

SingingSands Mon 15-Apr-13 22:43:05

We are all here, holding you in our hearts xxx

LegArmpits Mon 15-Apr-13 22:47:51

Thinking of you all the time Trazzles. Always on my mind. xxx

ArabellaBeaumaris Mon 15-Apr-13 23:14:00

Have been thinking about you all day.

MirandaWest Mon 15-Apr-13 23:50:16

Thinking of all of you x

Pintoe Tue 16-Apr-13 07:11:07

Thinking of you. x

Castlelough Tue 16-Apr-13 07:22:36

Trazzles I am hoping and praying that your meetings yesterday brought some hope for little Joe. You are in my thoughts and prayers xxx

thewhistler Tue 16-Apr-13 08:05:35

Trazzle,

Thinking and praying for you all.

SandWitch Tue 16-Apr-13 08:57:26

You and your precious family continue to be in my thoughts and prayers Trazzles.
Praying for peace and strength if that's ok.

PeoniesPlease Tue 16-Apr-13 10:01:06

Thinking of you and your lovely boy.

twojumpingbeans Tue 16-Apr-13 10:02:49

Thinking of you today sending much strength and love for your amazing little boy...

My thoughts are with you and your family x

toffeefee Tue 16-Apr-13 10:57:48

sending love xxx

mildred37 Tue 16-Apr-13 11:06:59

De-lurking to let you know there is a light in East Anglia for you and your family. I remember your first thread and I'm so sorry this is the outcome you have reached. You're all in my thoughts and prayers.

MyHusbandRoy Tue 16-Apr-13 12:01:42

Sending you all some love and a splodge from the south coast xxx

Hmmkay Tue 16-Apr-13 12:55:08

Still here with you trazzles holding your hand xxx

blue22 Tue 16-Apr-13 13:54:01

Adding my thoughts and prayers and hopes x

StealthOfficialCrispTester Tue 16-Apr-13 15:49:00

X

Badvoc Tue 16-Apr-13 16:05:04

Thinking of you all as ever xxxx

MelodyBaker Tue 16-Apr-13 16:46:06

Trazzle Nobody can judge you - you have your reasons and Joe has already been through so much. I hope today has been as kind as it can be xx

Doyouthinktheysaurus Tue 16-Apr-13 16:50:53

I hope you have the answers you need Trazzle to make your decision on how you move forward.

The choices you and your family make are categorically the right ones.

I wish no one was ever put in the position you find yourself in, life really can be so unfair.

I wish you strengththanks

puds11isNAUGHTYnotNAICE Tue 16-Apr-13 16:55:23

My thoughts are with you and your family Trazzle

crispsarenotoneofyour5aday Tue 16-Apr-13 18:00:22

Thinking of you and hoping harder than I have ever done x

BeaWheesht Tue 16-Apr-13 18:10:04

Still thinking of you and your wonderful boy xxxx

superfluouscurves Tue 16-Apr-13 18:36:04

Ditto what everyone else has said so eloquently Trazzles Thinking of you. And no-one would dare to judge adversely or even think of it - we all admire you hugely. Sending more prayers x

StoicButStressed Tue 16-Apr-13 20:06:56

((((((Trazzles)))))

You all remain encircled by an ENORMOUS number of us MNers with our love; support; and hope - hope that whatever is happening now is in line with your wishes and that Joe is as comfortable as is possible.

We are ALL here for you, and no-one - NO-ONE - would dare judge any decisions that they have been blessed enough to not have faced. I hope your fortitude remains as steadfeast as it has been, and that you know how very in awe of you as a Mamma we all are. I know for a fact that right now I am very definitely not alone in having you all at the forefront of my mind. Proper hugs Xxx

thewhistler Tue 16-Apr-13 20:07:43

Thinking and praying for you in the gaps of the day and the night.

Kalypso Tue 16-Apr-13 21:05:35

Thinking of you constantly Trazzles, and your wonderful, blue-eyed boy. I am wishing you all the strength in the world. Much love and splodging of light from Berkshire.

Hope you have been able to enjoy some sunshine today with Joe.

We are all still here holding your hand, even if you are not able to post, we will be here when you are ready.

X

narmada Tue 16-Apr-13 21:29:39

Thinking of you. Hope you are getting good dupport - medical and family.

Mmmnotsure Tue 16-Apr-13 21:29:49

Just checking in again, Trazzle.

Holding you and your family in my heart.

narmada Tue 16-Apr-13 21:30:18

dupport? support.

OK, trazzles fans and supporters. I have had an idea!

You know how we are all so very keen to do something to support Trazzles and Joe, and she doesn't want money, and there are Only so many penguins a boy can have?

Well, I have a PLAN.

I have just peeped in at the blood donor thread to see Trazzles and expat talking about how important donated blood has been to their DC.
I wonder if all of Trazzles' supporters who are able to, would join me in a pledge to give blood this month in Joe' and Ailidh's honour.

Who's with me?

Oops, that's me and my DD who pledge to give blood this month. DD has never given blood before, but she is keen to do it as a show of support for Joe

StealthOfficialCrispTester Tue 16-Apr-13 21:37:07

Me, used to do it ll te time but have alipped out if the habit since having dc. Will google to see where and when is near me. Good thinking

Me and DH are giving blood on May 9th.

MelodyBaker Tue 16-Apr-13 21:38:02

I'll give blood if they want me norks - been refused as iron too low. It's a great idea- giving blood saves so many lives. It has saved DD's life for which I am forever thankful to the donor and if I knew who it was I would love to write and thank them.

MyShoofly Tue 16-Apr-13 21:38:26

Great idea Norks

Trazzles, just wanted to say that I am half way across the world getting on with my day to day but I AM still thinking of you and Joe. Still hoping, still praying, still sending you my best.

maxmissie Tue 16-Apr-13 21:38:50

Am gladly with you - going to donate on Thursday so will do it in Joe and Ailidh's honour.

Trazzles - thinking of you and Joe and your family - sending more love, light and hope to you all.

Hassled Tue 16-Apr-13 21:42:25

That's a great plan Norks - and yes, I'm in. I'm so in that I've just gone and booked a blood-giving appointment (bizarrely, at my local football ground) next week.

Hooray, I KNEW you would get behind this.
We have just checked up local sessions and will sort diaries tomorrow and make appointment.

look here for session times

I'm not able to give blood as I had to have a blood transfusion. It really is so important, and I'm grateful to everyone who donates. What a lovely idea to do it in honor of Joe and Aillidh.

bobkate Tue 16-Apr-13 21:43:19

Great idea - I used to give blood regularly but since having the kids I've not done it for ages. I'll check the site and give blood at next one.
Still thinking of you Trazzles and splodging xxx

toomuch2young Tue 16-Apr-13 21:44:20

Thats a brilliant idea and I would so love to,but due to medical conditions and medication i can't.
Feels rubbish, however I am on the organ doner register - which is something else everyone could sign up for?

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

Trazzle we are all here and I am thinking of your family so frequently and sending you much love and light from Cheshire. Hope Joe is able to enjoy some things and please do let me know if is anything can send to cheer him or brighten his day up in any way xx

hellhasnofurylikeahungrywoman Tue 16-Apr-13 21:45:11

Done.

Just booked an appointment. It must be a good 15 years since I last donated but I will be doing it again inspired by expat and Trazzles.

Angelico Tue 16-Apr-13 21:48:34

So sorry Trazzle. Nothing anyone can say other than you have so many people sending you loving thoughts sad A hug for you and your family and most of all your precious Joe xo

ajandjjmum Tue 16-Apr-13 21:51:41

Brilliant idea Norks - no-one wants my rubbish blood, but it's fantastic for any one who's able to show practical support. Good for all of you!

I'm booked to donate on May 16th, that's my first available date following my last donation, when I was thinking about Joe.

xigris Tue 16-Apr-13 21:53:32

Fab idea norks! I am a blood donor but can't donate at the mo as DS3 is only 14 weeks and you have to be six months post partum, and yes, norks, mine are very messy.... Huge respect to those who are going to though as a result of this thread. Can I also suggest that people sign up to the bone marrow register? You can do this via the blood transfusion service or the Anthony Nolan Trust (sorry, I'm rubbish and don't know how to do links blush )

Lots of love to you and Joe, Trazzles, from SE London

Great idea Norks. I gave blood last month but will do again as soon as they let me. I have my appointment booked.

blizy Tue 16-Apr-13 21:56:15

Excellent idea, norks. I shall get myself booked in for donating.

Trazzle, like norks said, we are here for you whenever, wherever. X

I do understand that some people are not able to give blood for medical or tattoo or Africa type reasons, so, your mission is to find someone else to give half an armful on your behalf! How does that sound?

EmmaGellerGreen Tue 16-Apr-13 21:59:53

I was inspired by Aillidh and MrsDV amd gave for the first time last month. Booked in again for July.
Great idea Norks

xigris Tue 16-Apr-13 22:03:33

Mission accepted norks I shall send DH to the next available session. He has quite nice blood as it's one of the more unusual groups. My O neg however, is even more special as it's the universal donor <preens> I promise you I shall donate some as soon as DS hits the 6 month mark. Great idea and lovely that we can feel we're doing something practical as well as giving virtual support

IwishIwasmoreorganised Tue 16-Apr-13 22:04:32

What a great way for us all to do something constructive.

I just need to wait a couple more months for my thyroid meds to have been stable long enough and I'll be there.

<sobs> I am terrified of needles, but rationally I know I had injections to have my babies, so I will stomach a needle for Joe and Ailidh. The motivation is big enough.

I have just booked an appointment for Friday at my local hospital so there isn't time to think about it.

Great idea to do something so practical Norks.

Thinking of you and your babies Trazzles and Expat

tea attagirl! smile just think how proud you will be, and we will be of you.

You brilliant vipers you (can vipers give blood?)

shallweshop Tue 16-Apr-13 22:09:36

Great idea. I have never done it but have thought about it so I am going to find out when the next session is locally.

blizy Tue 16-Apr-13 22:11:34

That's me all booked up for next Friday.

grin at xigris DH having NAICE blood

Trazzletoes Tue 16-Apr-13 22:17:48

Thank you. That's absolutely perfect. DH and I are delighted that so many of you are able to give this amazing gift. Joe will know all about the brave ladies when he wakes up tomorrow.

Thank you.

<group hug>

blue22 Tue 16-Apr-13 22:18:22

Great idea. Will book an appointment tomorrow.

I gave blood a couple of months ago so can't do it this month but I've booked for the end of next month, for Joe and for Ailidh.

If we are brave for enduring one teeny finger prick and one little needle, what does that make Joe? blush

blondebubble Tue 16-Apr-13 22:21:01

And here for Scotland

Thinking of you and your family Trazzles

lborolass Tue 16-Apr-13 22:28:09

Lurker here, I already have my regular appointment booked for next month but will happily do it with Joseph in mind. Thinking of you all.

MirandaWest Tue 16-Apr-13 22:31:49

I wish I could donate but had a transfusion a few years ago and can't. Will make sure my bf rebooks his as he had to postpone his last donation.

Trazzletoes Tue 16-Apr-13 22:32:12

Norks one of my best friends calls him Super-Joe.

He is fab. I wish I had even a tenth of his strength and bravery. All the children on the ward put up with so much so amazingly. They are all incredible. Every single one.

mildred37 Tue 16-Apr-13 22:38:11

I'm currently pg so can't donate, but will do as soon after the birth as I can. What a brilliant idea.

expatinscotland Tue 16-Apr-13 22:40:13

Glad to see more people donating. The finger prick is not fun, but it's something all these kids face every time they go into the day unit, which is as often as 3x/week for some.

Strong, amazing, resiliant. That's what these children are!

narmada Tue 16-Apr-13 22:41:46

Well done norks. I will attempt to donate again. Last two times I passed out having my tea and biscuits but I am hardier these days ;)

I like Nudey-Joe myself, as nicknames go smile

Hooray for all of you pledging to donate. If you can't, please twist someone else's arm.
If you DO donate, please come back and tell us how it was actually really easy and how you got nice biscuits, and how it didn't hurt very much at all, actually

lougle Tue 16-Apr-13 22:45:38

I'm unable to donate, but still thinking of Joe.

There isn't a session near me until July that I can manage, but I know there is an open session in my home town on a Saturday, so the next time I am there I will donate. For joe and for ailidh.

Doubtitsomehow Tue 16-Apr-13 22:50:22

I'm in. Will book session tomorrow. Thoughts to the frazzled and joe.

Doubtitsomehow Tue 16-Apr-13 22:53:17

The trazzles....Though you have more reason than anyone to feel frazzled.

BarmeeMarmee Tue 16-Apr-13 22:56:28

Sadly I also can't donate due to having had a blood transfusion myself however will go now and bully DH into it! Thinking of you all still Trazzles.

Well done barmee
Tell DH that only big, manly, husky, masculine, heroic men can bear the needle prick.

Oh, and three year old boys smile

Sending love to your family Trazzles x

My neighbour's young son is stage 4 and still fighting. And smiling too. They found out just after Christmas. It's shocked us all. Can't begin to imagine what you and they are going through.

5madthings Tue 16-Apr-13 23:06:35

Just looking up sessions and there are some in may i can get to. I have crap veins that they struggle to get blood from but i shall go along and let them.have a go and keep my fingers crossed.

(((trazzle family)))) much love and strength to you all xxx

stealthsquiggle Tue 16-Apr-13 23:11:52

I have registered. Sessions seem to be few and far between but there is one not too far away on Friday so we will see how fast they react.

kohl Tue 16-Apr-13 23:17:43

norks lovely idea. Will book self in this month. What Joe is going through really puts my needle hatred in perspective.
Still praying Trazzles.

Liz79 Tue 16-Apr-13 23:21:11

I have just registered to go next week. I haven't been for at least 6 years when I got pregnant the 1st time. Youngest is 3 & never quite got back in the habit.of going. Until norks prompted me. I did donate ebm though! grin

HairyPotter Tue 16-Apr-13 23:21:19

The mobile blood unit is c

HairyPotter Tue 16-Apr-13 23:22:12

Argh!

Is coming to my village tomorrow. Will be holding you all in my thoughts xx

minmooch Tue 16-Apr-13 23:23:12

Whilst at the blood donor centres please can you also ask them to check your veins to see if they are good enough to donate platelets? It takes a little longer but not many people have wide enough and straight enough veins to donate platelets so if you can they are also needed. Most of our children on treatment will have had both red blood and platelet transfusions.

Thank you from my family too to all those willing to donate. Countless nameless people helped my son through his on going treatment.

thewhistler Tue 16-Apr-13 23:28:26

Suspect I can't because of meds but will sign up to organ donor.

OrWellyAnn Wed 17-Apr-13 00:05:30

Signed up me, my Dh and my DF for tomorrow night.

onedev Wed 17-Apr-13 00:21:22

I'm in too - haven't been able to for a while (pregnancy, then waiting for the appropriate time & then low iron etc!) so will try again this month too.

Wishing you all strength.

Much love. xx thanks

ToffeeWhirl Wed 17-Apr-13 05:25:01

Great idea. Am already booked in for this Thursday.

Thinking of you, Trazzle. x

sybilfaulty Wed 17-Apr-13 06:14:15

What a wonderful idea! I donated at the end of Feb and am booked to return on 4th June.

Hugs to all the Trazzle family.

Almostfifty Wed 17-Apr-13 06:59:03

I am already a blood donor, so will think of the Trazzles when I go next month.

Hope you're all holding up down there Trazzle family. Lots of us thinking o you.

D0GWithAYoni Wed 17-Apr-13 07:43:05

Yes I will donate blood I've always wanted to before but was either too young or had just had a baby. I have a slightly rare blood type too so really should. Am going to find out when they're in my town and sort it.

Trazzles am still thinking of you all x

IwishIwasmoreorganised Wed 17-Apr-13 08:25:46

Great response to a fantastic idea.

Hope the Trazzles all slept well.

Xx

tholeon Wed 17-Apr-13 08:43:25

Keep trying to give blood motivated by Joel's story, foiled by noro virus last time and most recently a son with scarlet fever.. Will keep trying! X

tholeon Wed 17-Apr-13 08:44:08

Sorry, typo, joe's story..

Trazzletoes Wed 17-Apr-13 08:45:21

tholeon don't worry, my phone auto-corrects Joe to either Joel or How hmm

RatherBeOnThePiste Wed 17-Apr-13 08:49:42

Morning all brew

Give blood regularly here, but am hopefully moving over to giving platelets, having a test done. So fingers crossed. They are really pushing platelet donation here, so maybe they are worrying about not having enough.

How old do you have to be? Only my DD is keen.

Much love to all Trazzle folk, and gentle hugs for beautiful Joe X

StealthOfficialCrispTester Wed 17-Apr-13 08:54:01

How are you all this morning trazzle?

WheresMyCow Wed 17-Apr-13 09:02:30

I have been following Joes story from the start and I'm just popping on to say sorry for your most recent news Trazzle, there really are no words sad

I vowed that I would give blood after Ailidh died and signed up this year, but haven't been able to make it to a session yet. Will endeavour to get to the next one, and take DH with me as he hasn't donated for a long time.

Thinking of you all x

Am prouder than a proud thing in proud town of all you wonderful vipers. smile

I did not know about the platelets, minmooch thank you for that info.
As far as I know, 17 is the minimum age.

Have booked in for 3rd May (just waiting for end of antibiotics to clear the system)

cowmop Wed 17-Apr-13 09:24:19

I can't give anymore due to developing epilepsy, even after I've been seizure free for 12 months, which I feel bad about as it's such an easy and painless thing to do. However, Dh is a donor still and is going this afternoon.

You're all still in my thoughts and prayers Trazzle, splodges from Staffordshirexxx

blue22 Wed 17-Apr-13 09:47:02

Appointment booked for next month. Will certainly enquire about platelets. Thanks for the information.

Trazzletoes Wed 17-Apr-13 09:52:37

Thank you all so much.

On Monday, Joe's consultant gave us a couple of treatment options, as well as the possibility of doing nothing, of course. We are going to wait for all the test results to decide what to do for best.

However, now that the cancer has come back this time... Even if he manages to get rid of it this time the chances of him surviving long-term are incredibly small. We really are just looking at the different methods of prolonging life.

It's so hard to know what to do.

He is so brave and has managed to crawl a bit this morning - the first time he has moved under his own steam since mid February.

SandWitch Wed 17-Apr-13 09:52:54

I give blood regulary (am only a few donations away from my silver award)
<<proud>>
My next session is already booked for the second week in May, delighted to do this in honour of all the brave children and families I have encountered on MN.

Still can't help feeling like I can never do enough though.

HairyPotter Wed 17-Apr-13 10:04:26

Oh Trazzele, I am so sorry. I really don't have any words. sad

StealthOfficialCrispTester Wed 17-Apr-13 10:10:30

Trazzles I can't find the words to say how awful that is. Everything I write seems wrong. And I keep opening the thread somehow hoping that ill have read your posts wrong. I can't imagine what you're all going through.

SandWitch Wed 17-Apr-13 10:10:41

Trazzle I can't even begin to understand what you are all going through right now. Words just seem so, I don't know, useless. But words are all I can offer on a screen. That and prayers for peace and strength.

BarmeeMarmee Wed 17-Apr-13 10:14:12

Oh Trazzle. The sort of decision no parent should ever have to make. My heart breaks for you all. So lovely to hear Joe has crawled though-that must be so lovely, if bittersweet, for you. Splodging still.

blue22 Wed 17-Apr-13 10:27:28

I'm so sorry. I continue to be amazed by your strength and courage at this awful time. And Joe sounds the most wonderful little boy - he's touching so many people's hearts with his bravery x

TheOldestCat Wed 17-Apr-13 10:30:55

Just registered as a blood donor following two attempts years ago foiled by low blood pressure. I KNOW I can do it this time for Super Joe and in memory of Ailidh.

Sending you, Trazzle and expat, much love.

Fivemoreminutesmummy Wed 17-Apr-13 10:31:02

I wish you courage, strength and hope in this horrible journey. I can't begin to imagine how you feel but I'll keep splodging and hand holding and blood donating as much as I can. X

narmada Wed 17-Apr-13 10:35:08

I'm so sorry to hear that Trazzle. So sorry. But just to stress again, whatever decision you come to will be the right one.

Thurlow Wed 17-Apr-13 10:43:00

I'm so sorry, Trazzle.

You need to make the decision that is right for your family - for you, for your DH, your DD and most importantly for Joe. Don't even think about what other people might say. The decision you come to will be the right one.

Badvoc Wed 17-Apr-13 10:44:31

I have no idea what to say, other than you are all in my thoughts constantly.
Whatever you decide will be the right decision for your wonderful son and we will support you 100%
Xxxx

TiredFeet Wed 17-Apr-13 11:09:18

oh trazzle, I don't know what to say. Just sending you all love and I hope that you have lots of real life support to, to help you with the tough decisions ahead.

I can't donate blood at the moment, but this has inspired me to donate as soon as I am able to (despite my extreme needle phobia which has deterred me so far)

LegArmpits Wed 17-Apr-13 11:12:09

Trazzles, whatever I write is just stupid pointless nonsense, so I'll just say that I too am going to donate blood next month for the first time. Your brave, brave boy. xxx

pinkbraces Wed 17-Apr-13 11:15:11

Im so so sorry Trazzles, I dont know what to say, so Im sending much love to you all.

I am unable to give blood but my DH will

xx

LazyMonkeyButler Wed 17-Apr-13 11:17:41

Oh Trazzle, I'm sorry beyond words. Whatever decision you make will be the right one. Sending you, your family & little Joe all the love & positive thoughts in the world.

Life is so unspeakably cruel sad.

Andro Wed 17-Apr-13 11:28:48

I gave blood on Monday, DH is due to donate next month IIRC - we've both been regular donors for years (I have my silver award).

Trazzle, cancer is such a cruel disease. There is no 'wrong' choice in this situation - only varying flavours of shitty.

Asheth Wed 17-Apr-13 11:30:50

Trazzle I am so sorry for everything your family is having to go through. I shall continue to pray for more time for Joe and even more importantly that the time he has is filled with fun. He is so brave and deserves the very best.

I haven't given blood in a long time. But I shall certainly find out about sessions near me now.

lougle Wed 17-Apr-13 11:35:48

Trazzles, I hope that once the results are in, you will be able to choose options that you are sure of and have peace with. Whatever you choose to do (choice, such a trivial word for such a situation) will be a hard choice to make.

WouldBeHarrietVane Wed 17-Apr-13 11:48:18

Trazzles,

What you are going through is beyond words so all I can say is that I am so so sorry. How wonderfully Joe is doing to manage to crawl a little.

Love to all of you from my family here.

xxx

Well done to Joe for the crawling. Another one who hopes you can find peace with the choices you make so that you can make the best of your time together.

saffronwblue Wed 17-Apr-13 12:15:47

Thinking of Trazzles and Super Joe. You will find that you are brave and strong enough to make the right decisions for him.

I can't donate (in Australia they will not take my blood because I lived in the Uk during the 80s and the Creutzfeld Jakob era) but will encourage DH.

Messandmayhem Wed 17-Apr-13 12:54:24

I'm a relative newcomer to mumsnet and new to Joes story. I'm so sorry to hear of your news and I am sending love and strength to you. I am going to arrange a blood donation appointment.

kissmyheathenass Wed 17-Apr-13 13:12:45

After Aillidh lost her battle with this awful disease, I signed up to give blood. I have just booked up to donate blood tomorrow.

Love and light from Bournemouth. xx

Trazzletoes Wed 17-Apr-13 13:15:12

Thank you.

We are out-patients today at the hospital for various reasons and keep coming across nurses who have been looking after him commenting on how brilliant he looks and how well he is doing sad and then I have to tell them sad sad sad

TheChocolateTeapot Wed 17-Apr-13 13:32:02

Oh Trazzles - so sad for you all at this terrible time. You sound like just the best mum ever. All our love to all of you. xxx

sad That must be unbearable.

Trazzletoes does littleTrazzle have a thing about penguins? I noticed mention of them in some posts? I could paint one for him if you like? I'm amateur but keen smile Or anything else he like, just send me a picture if you want me to. PM me and I'll swap emails. xx

The little boy near to us is home for a few days which is nice for the family. He's only a few doors away from me. I pray so hard as do others. Feels aimless at times but at least it's something to focus on. He's stage 4, I don't want to google.

anything else he likes.

Trazzletoes Wed 17-Apr-13 13:37:18

Thanks juniper most children are stage 4. I hope he gets through all the treatment and recovers.

Joe doesn't have a particular thing about penguins - he loves all animals - it's just over the weekend we went to our local stately home which has a bird park and the penguins are Joe's favourite there.

I spoke to Joseph's Macmillan nurse today and he can't see any reason why we shouldn't be able to get to Disneyland Paris with a wish-making charity so I'm on it now.

TheChocolateTeapot Wed 17-Apr-13 13:42:16

..... Not allowed to give blood but would love to make a donation to send your gorgeous boy to DLP - please tell me how.

insanityscratching Wed 17-Apr-13 13:50:22

Trazzle alongside the two probably more well known charities I listed earlier there is also www.thedreamteamcharity.co.uk/ who granted my children a dream come true (disability not illness here) They are really lovely and maybe a look on their site could give you ideas for what Joe might like. Who knows perhaps he'd like to be a zookeeper? Ds and dd travelled in a glass railway carriage as VIPs on a steam railway grin

superfluouscurves Wed 17-Apr-13 14:39:02

Same as ChocolateTeapot

Oh Trazzles so very very sad to read the latest news - any words I write down seem totally inadequate. And it must be so hard for you when you end up having to comfort others too. Lots of love to you and all your family. Still praying. Any decision you make will be the right one xxx

drjohnsonscat Wed 17-Apr-13 14:41:59

Will go along on Friday to do this. Have not been for ages because other things got in the way but this thread is setting me straight on that.

Thinking of you and yours trazzle.

BIWI Wed 17-Apr-13 14:42:15

I love those penguins too, Trazzle. And said stately home is somewhere my mum used to love to take my children when we were visiting my parents. Now she is no longer with us, it's a place I always associate with her.

SantanaLopez Wed 17-Apr-13 14:43:36

Thinking of you all always, and would also love to donate if you would allow us to.

Trazzle what a hard thing to have to do, tell everyone. I would imagine the more people you tell the more an unreal situation becomes real sad sad sad. Your bravery and dignity shine through your posts. I know you've got some hard decisions ahead but I believe that you and your DH will continue to make the best decisions for your beautiful Joe.

Delighted to hear that a trip to Disneyland Paris is a possibility.

I now have my appointment for 9am on Friday morning so pity the poor member of the NHS who has to deal with me shock. I shall channel my inner super-Joe and will donate a pint of my red stuff without crying but I might sweat a lot

<squeeze>

I hope you all get to Disneyland Paris glad to hear it's an option x

IwishIwasmoreorganised Wed 17-Apr-13 16:05:10

Oh Trazzles, what tough decisions you're having to make for little Joe, and having to tell others the bad news must be hideous.

I really hope that Joe stays well and you can all enjoy sme amazing times together - just ask if there's anything he's like. Between us I bet we can pull anything together - this is MN after all.

The nightmare within the nightmare. I'm desperately sorry to hear this.

onedev Wed 17-Apr-13 16:29:23

As others have said, I'm so so sorry. This must be unbearable & I don't know what to say. Just wishing you all strength & sending much love.

If there's anything you need to make DLP happen, please just say.

expatinscotland Wed 17-Apr-13 16:35:45

So sorry to read this.xx

mummylin Wed 17-Apr-13 16:42:02

So sorry to read your updates. Also willing to donate to send your dear little son to DL. I really feel for you all.

Nooneelseisallowedafergus Wed 17-Apr-13 16:54:58

So sorry to read your updates. You and joe are constantly in my thoughts. It is so deeply wrong that any child should have to go through this. I will be donating blood. I wish I could do more. X x

expatinscotland Wed 17-Apr-13 16:59:45

'We are out-patients today at the hospital for various reasons and keep coming across nurses who have been looking after him commenting on how brilliant he looks and how well he is doing and then I have to tell them'

Oh, Trazzle. I'm so sorry!

We never had to tell anyone, although Aillidh's odds of long-term survival were very poor and she was ill in PICU for nearly a fortnight before she died, it was still relatively sudden, but I still can't bear the thought of going near that hospital or unit. sad

(((())))

bobkate Wed 17-Apr-13 17:22:49

Devastated for you all to have had this news, lost for words really. As always I will continue to hold you in my thoughts and hope that the decision making process for you and DH is as easy as it can possibly be, if you know what I mean...not easy...nothing about this is easy..just can't find the right words really.
Love to brave, brave Joe and to the rest of the extended Trazzle family xxx

So very very sorry to read your latest posts sad. There are no words, but I wanted you to know I am praying for you in North Yorkshire, praying for strength really.

I gave my first blood donation in February inspired by Aillidh's story and will donate again as soon as I can - June I think. I am working on persuading my DH to donate as well.

Keep strong Trazzle and feel us all holding you up x

Elibean Wed 17-Apr-13 17:53:50

Telling sounds like another hugely painful bit of a hugely painful time sad I'm so sorry, Trazzles, and am thinking of you and Joe and the whole family.

I can't donate blood, or organs, due to medical history but can and will set up standing order to give to Cancer Research. Wish I could do more.

motherinferior Wed 17-Apr-13 17:55:37

Trazzle, I just wanted you to know that there are many of us who haven't posted much or at all on your threads before - and many more, I expect, who still haven't - but are thinking of you.

Other friends of mine lost their little girl a few months ago angry. They managed quite a few of those type of trips with her - including Disneyland.

God, I'm so bloody sorry.

expatinscotland Wed 17-Apr-13 18:01:15

CRUK donates so little of what they take in to research into childhood cancers like neuroblastoma sad.

Manchesterhistorygirl Wed 17-Apr-13 18:02:22

Booked in for the end of June. It went be within the month, but its the only date I could make childcare work. It's a really good idea, lets all try and book in. Imagine the difference we can make.

Trazzletoes my love, I don't really know what to say, but that you are in my thoughts. X

expatinscotland Wed 17-Apr-13 18:02:30

Disneyland definitely possible smile

Expat, what cancer charties support research into the likes of neuroblastoma or acute myeloid leukaemia? We have a charity night at work soon and it's my teams chance to chose the charity. I would like to put forward one.

Trazzles, still thinking of you. Although the prognosis isn't what you had hoped for, it does sound like Joe is rallying after the chemo. I know its of little comfort, but that's a positive, in a round about way. I'm sorry that's come out all wrong, I just so wish I could take away all the crap for you. Bastard cancer. (((((Hugs)))))

Neuroblastoma Society hth GlaikitF?

Trazzletoes Wed 17-Apr-13 18:52:20

Fizzy the Neuroblastoma Alliance has been particularly helpful to us. There is another one also called Families against Neuroblastoma.

expatinscotland Wed 17-Apr-13 18:53:01

Neuroblastoma Alliance works tirelessly to help children and families affected by these awful disease.

The Aila Coull Foundation was set up by the parents of a child treated with Aillidh who also died of paediatric AML and their charity is whom we donate to now as 100% of donations go to research into paediatric AML, a poorly understood disease with largely very poor survival rates, though AML accounts for 20% of all paediatric leukaemia cases.

expatinscotland Wed 17-Apr-13 18:54:01

X-post with Trazzle.

Sadly, last week, we attended the funeral of another child taken by neuroblastoma who had been treated when Aillidh was alive, too. sad

AvonCallingBarksdale Wed 17-Apr-13 18:56:39

Our friends found www.nsoc.co.uk to be a massive help when their son had neuroblastoma. Absolutely awful bloody disease. My heart goes out to you and your beautiful boy.

Thank you I will have a look into them. There won't be a huge donation, but whatever we raise my work will match it pound for pound. I would rather see it o somewhere that has made a difference to someone I "know" iykwim.

Dh is giving blood on Friday as the van is at his work! He roped in 5 other people to go along with him. All for joe and ailidh xxx

MintyyAeroEgg Wed 17-Apr-13 19:00:06

I would like to help Joe go to Disneyland. When you have time, Trazzles, please can you post details of the charity who will be funding you?

tribpot Wed 17-Apr-13 19:13:56

Neuroblastoma Society is run (well, chaired) by a friend of mine. They are funding a lot of great research. They're on Facebook and Twitter if anyone would like to follow them.

RubyrooUK Wed 17-Apr-13 19:19:14

I too would like to donate to help Joe get to Disneyland.

I can't give blood at the moment as I'm only five weeks post-birth and very anaemic. But I can donate money instead this time.

Please let us know if that is possible if you decide to go ahead, Trazzles. Otherwise I will be happy to make a donation to a neuroblastoma charity too.

Sidge Wed 17-Apr-13 19:26:58

I can't give blood any more (on meds for RA) but would love to donate to a charity that will support you all getting to Disneyland.

(I lost my dad to glioblastoma)

Sending love, peace and strength to you all. xxxx

goygoy Wed 17-Apr-13 19:43:53

I'm so sorry Trazzle, have lurked and occasionally posted since your first thread.

I can't donate blood (due to a previous transfusion) but would happily donate money or help in any way I can. I'm not far down the M1 from Leeds.

Thinking of Joe and all of you xx

Trazzletoes Wed 17-Apr-13 19:50:56

Fizzy anything donated is gratefully received, I'm sure.

If you were asking my opinion, I would say the Neuroblastoma Alliance or Neuroblastoma Society.

As for Joe personally, once Disney is hopefully sorted, we can let you know who we are going through. And the charity that provides play facilities for the ward, and also funds research in to various children's cancers, is called Candlelighters but they primarily represent children in Yorkshire so I understand that people might not want to give to them.

monkeysbignuts Wed 17-Apr-13 19:59:22

So so sorry trazzles sad
Life is fucking shitty unfair.
Just lost my uncle to cancer but he was older. For a child it's so wrong xx massive hugs

TheChocolateTeapot Wed 17-Apr-13 20:01:07

This is personal and I do want to give to the folks looking out for Joe - am off to find Candlelighters.

HairyPotter Wed 17-Apr-13 20:28:34

I've just given blood and I've also emailed Glasgow Blood centre to find out if I can donate platelets.

It's such a small thing but between us all, I'm sure it'll make a difference.

Keeping you all in my thoughts xx

expatinscotland Wed 17-Apr-13 20:39:13

Hurray for Hairy! I found Glasgow Blood Centre very helpful smile. Been donating for years now and still do. My dad still donates in the US and he is nearly 77-years-old! He has won awards for how many pints he's given.

monkeysbignuts Wed 17-Apr-13 20:43:10

Can you donate while on antidepressants? I would love to but not sure I can?
Just finished breastfeeding so couldn't then sad

HairyPotter Wed 17-Apr-13 20:56:38

Expat the blood nurse was lovely and explained the platelet process. I'll admit I was a bit put off because its about 30 mins away and it would be every 4-6 weeks. But then I thought about Aillidh and Joe and caught on to myself.

Fingers crossed I will be able to start soon. I'm sure I can manage a wee trip into the town every month. There's a few nice cafes close by according to google maps.

monkeysbignuts Wed 17-Apr-13 20:58:14

Just phoned and I can donate! Got an appointment date lined up smile I hope it helps someone

Motherlyloving765 Wed 17-Apr-13 20:59:11

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Atavistic Wed 17-Apr-13 21:02:40

Reported

StealthOfficialCrispTester Wed 17-Apr-13 21:03:40

reported the strange troll

And me too, x-posts troll reporters

TrampyPants Wed 17-Apr-13 21:05:19

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TrampyPants Wed 17-Apr-13 21:05:36

oh, and reported too. blush

Reported too.

elfycat Wed 17-Apr-13 21:05:59

The vampires are coming to my town next Friday. I was thinking 'drat it's in the afternoon' as I only have childcare in the morning, but I've had a switch around already and DD1 is in all day. I'll swap DD2 to the afternoon and go. I used to donate in Luton, which has/d a permenant centre and I could go when it suited me. I became lazy (and had DDs) since I'd have to go in search of a van on their day.

Will have a look at the platelet options. I worked on the heamotology/oncology ward twice in my nurse training, and have worked in theatre since. I know how important it all is.

IAmJacksRagingBileDuct Wed 17-Apr-13 21:06:31

I can't donate blood at the moment but would very much like to contribute in any other way I can, off to have a look at Candelighters now.

Thinking of you all every day with much love and hope xx

seeker Wed 17-Apr-13 21:06:58

It's been reported- please ignore now or the threads will go wrong. No more comments please!