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Children's health

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Original poster

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

999 replies

Trazzletoes · 14/04/2013 08:13

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

OP posts:

Are your children’s vaccines up to date?

Set a reminder

cuggles · 09/05/2013 19:57

delurking to say, have followed this thread and Joe sounds absolutely gorgeous, what a brave poppet he must be. I came out of lurking with the blood bank too and shall be giving blood on monday whilst having a little think about your Joe and wishing you all some happy times!

bobkate · 09/05/2013 21:30

Huge hugs Trazzles...just that. Huge hugs and I'm thinking of you. Splodging more than ever. Love to you and Joe, and the rest of the Trazzles x

bobkate · 09/05/2013 21:30

P.S I think you're amazing

ItsOkayItsJustMyBreath · 09/05/2013 21:50

Huge splodges and hugs from East Sussex, I haven't written much but you and Joe are in my thoughts every day. Your recent post in reply to running was perfect and so well written x

Original poster

Trazzletoes · 09/05/2013 23:06

I wasn't sure whether I was over-reacting a touch. But at the same time, just because you don't mean to cause offense, it doesn't mean that what you have to say doesn't offend someone.

And I guess if anyone is to blame for him being sick, it must be me. I carried him, I feed and clothe him. He has half my genes...

I do blame myself already. I guess as parents we all do. Even though the Doctors have made it clear that it would have happened whatever. It's not my fault. But I'm still on edge about the possibility.

OP posts:

onedev · 09/05/2013 23:16

Oh Trazzle, I'm sure no offence was meant but I'm so sorry that poster made you feel this way. It is most definitely NOT your fault (or anyone else's for that matter).

It's just the shitty unfairness of life which you & your gorgeous Joe (& all your family) don't deserve.

I really wish I could do something - big hugs from me, with gingers firmly crossed for the miracle.

pinkbraces · 09/05/2013 23:18

Another one delurking to send you all my love and prayers.

Please dont waste your time or emotion on blaming yourself, thats just wrong.

I dont post often but I read all of your threads and you are just amazing - your courage and love for Joe shines through. Please just be kind to yourself and use your emotion on fighting.

xxx

thornrose · 09/05/2013 23:21

I don't think you were over-reacting Trazzle, I don't have a child with cancer and I found runnings post offensive. Like Goldmandra I've had "well meaning" people advising me on how I could've prevented/could take away my child's autism!

I don't post often but I am following your journey, I wish you wouldn't blame yourself

ChippingInLovesSunshine · 09/05/2013 23:22

Trazzle don't give it another thought, your reply was polite... far better than the 'Oh Do Fuck Off' I would have managed!

Cancer is a fucking bastard thing :( It is not your fault, please don't allow yourself to be taken down that path one step further.

Big Hugs
x

PacificDogwood · 09/05/2013 23:27

Trazzle, I am specifically delurking to say it's not your fault. Please don't heap that burden on you on top of everything else.

One of my boys shares his name and age with your Joseph and after posting a couple of times on your first threads I found I had to stay away. What you, your family and him were/are going through was to close to home .

I cannot tell you how sorry I have been since I found the news on this thread that you have been told a good outcome is less and less likely. Please know, I think of you and Joseph often, wish you all the strength in the world and the resilience to celebrate the time you have with him.

IT'S NOT YOUR FAULT.

Much love x.

PacificDogwood · 09/05/2013 23:27

too close, sorry.

CabbageLeaves · 09/05/2013 23:28

Trazzle your response was dignified. I suspect Running did write her post with good intention but it was a little misguided/evangelical whilst causing huge insult. It is possibly a belief she needs to hold onto, to help her get through her difficult time.

NorthernLurker · 09/05/2013 23:31

It's not your fault Trazzles. It's nobody's fault. What you are feeling is part of mother love. We all blame ourselves if things go wrong. From the little things to the bigger stuff. My middle daughter was born with a congenital heart defect, thankfully one that has not caused her problems. I blamed myself. She was born with it. I carried her. I MUST have caused it. I had a really bad cold at about week 6 of pregnancy and took paracetamol and used an inhaler to relieve a wheezy chest - was that it? What else did I do? I don't think that ever goes away. I was telling my mu I have to have some root canal treatment and she said 'oh dear I blame myself' I said 'mum, I'm 36! How can it be your fault?' Then she started going on about how she must have eaten the wrong things when carrying me and she tried to eat the right stuff but she must have done something wrong.

There's no conscious decision that you've made for J that hasn't been made out of love and a passionate desire to get the best for him. In the broadest sense of the word it's you that is his cure. We all need to follow your lead. If you want us to scrutinise the internet or picket the department of health or whatever, we'll get it done. For now though you asked us to pray for a miracle and that's what I'm doing.
I'm thinking of Psalm 46 if anybody that way inclined wants to look it up.

expatinscotland · 09/05/2013 23:43

running, Trazzle's response has been more than polite. My child's cancer was also entirely genetic, a very rare form of acute myeloid leukaemia that claimed her life a mere 8 months following her diagnosis.

Trazzle, I also had similary nonsense spouted at me. Could have Aillidh's blood washed or high dose Vit C. Yes, because that's going to stop a bone marrow which was genetically flawed from producing cancerous blood cells. Sure.

I find it ignorant and insulting to imploy that a 'positive attitude' and exercise can reverse childhood cancer.

It's a shit disease and if love, well wishes, prayers, positive attitude, etc could in any way influence this disease's effect on these children none of them would have it .

expatinscotland · 09/05/2013 23:49

'I do blame myself already. I guess as parents we all do. Even though the Doctors have made it clear that it would have happened whatever. It's not my fault. But I'm still on edge about the possibility.'

I do, too. I blame myself for a lot of things even though I know it was no one's fault she got cancer and no one's fault she died.

There is no way you caused neuroblastoma. Just none.

It's a normal feeling entirely, though.

saffronwblue · 09/05/2013 23:53

Trazzle the way I see it is that the sole purpose of this thread is to try to offer you a morsel of comfort and support in amongst the hard, hard stuff you are dealing with in real life. You are the one making the decisions and no-one here has the right to undermine those decisions. I'm sure running's intentions were kind but her post came across as potentially undermining you and that is the opposite of what your threads are for. You were strong and dignified in your response, which does not surprise me as that is clearly how you are as a person.

Hope you and Joe are having a nice day and that he continues to test and delight you with 3 year old behaviour.

marthamydear · 10/05/2013 00:51

Thinking of you and Joseph xx

I think you are doing really well. Praying for a miracle with many, many others on here xx

tholeon · 10/05/2013 08:44

My children are just the same ages as yours too trazzle and I think that is why your story struck such a chord in the first place. Could be my family, could be any of us. Not your fault. The care and dedication with which he is being looked after, and the love he feels every day is down to you, though.

I think running's post probably came from her own place of suffering with sick relations and her need to feel, as someone else said, some control over something uncontrollable. But in your shoes I would have felt just as hurt and insulted as you did, though I doubt I would have been able to express it so well. Must go - 16 months dd exploding with rage at not being allowed iPad.

MrsFrederickWentworth · 10/05/2013 12:08

Trazzle,

Ds has a genetic condition that was pretty on the edge during childhood. When we established it was genetic, I took comfort, perversely, that I could have done nothing about it. It wasn't that I had given him the wrong food, not loved him enough, allowed him to play too much or too little on the sun. It was just fate. And all I could do thereafter was to follow medical advice to the best of my ability and with their support take the appropriate decisions.

None of this is your fault. Yours is the responsibility for loving and caring, and by gum you do.

I do think running was trying to help, and the treatment was obv helpful for her family. But I went mental at people who either told me Ds would be ok or that I needed to change his way of life and then he would be ok. They were insensitive, Although trying to help and it was energy sapping. and you were fine don't worry. Just move on now.

Hope the weather in the north is nicer in here or if poor there is the opportunity for lovely cuddles.

And that the danger of chicken pox is passing.

SlightlyJaded · 10/05/2013 22:23

Trazzle

There are lots of reasons why there are so many of us holding your hand on these threads - mostly because you have painted such a beautiful and honest picture of Joe and your family that we feel we know you - we all genuinely care and couldn't be crossing or splodging harder.

But another reason is that we are all thinking 'there but for the grace of god'. It could be my DS next it could be anyone's. Everyone on this thread knows that, which means everyone on this thread knows that Cancer picks who it picks and that there is nothing you could have done to change that outcome.

I really really hope that you know that with complete certainty too.

You are in my thoughts every single day and I hoping against hope right with you..

Original poster

Trazzletoes · 11/05/2013 07:20

I do know it, thank you all. But regardless I think we all have moments of blaming ourselves. min and expat thanks so much for your input especially.

I'm just lying in bed listening to Joe singing the Big and Small theme tube. Except all he's actually singing (over and over and over again) is "don't worry, it's Big and S-m-aaaaaaaaaaaaaaaaaaaaallllllllllllllllll." Bless his heart!

OP posts:

StealthOfficialCrispTester · 11/05/2013 07:29

:o Is that still on? I can't remember the tune, how does it go again

corblimeymadam · 11/05/2013 07:53

This reply has been deleted

Message withdrawn at poster's request.

ajandjjmum · 11/05/2013 08:50

SlightlyJaded - you've got it absolutely right in everything you say.

TicTacSir · 11/05/2013 21:45

He seems content, Trazzle. Singing away. Relish these little moments! I bet you wish you could freeze time at moments like this. Thinking of you all x

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