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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.

TicTacSir Sat 11-May-13 21:45:44

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

StealthOfficialCrispTester Sun 12-May-13 09:42:12

How are you all doing Trazzletoes? Hope there's some sunshine down where you are

Trazzletoes Sun 12-May-13 09:55:53

It appears to be sunny... Don't know as am still in bed!

I took the DCs away for a night and didn't get back til late yesterday - DH had a bit of a break from all the stress so I am making the most of my lie-in!

Joe's re-scan is scheduled for Thursday and Friday so we should know what's going on on Friday afternoon.

Am massively stressed at the moment trying to face this week. And I've finally used up all my accrued holiday from work so am on unpaid leave as of this week. Plus I tell the benefits people when I don't qualify for carers allowance, they put it on hold for a bit and then back pay me. Argh!

DD keeps biting Joe.

I have yet another cold (3rd one in 3 weeks).

Talking to the radiotherapy consultant on Thursday - the nurse had told her and Joe's consultant how upset I was on the phone - I guess she has to to make sure I'm ok, but I HATE people knowing I've been crying and can't cope. Anyway, she reaffirmed that they fully expect the cancer to have grown/ spread sad

I so badly want him to be better.

StealthOfficialCrispTester Sun 12-May-13 10:02:18

You are doing so well just to get through the days. Glad your DH had a break and you are getting the same now.
You stomach must be in knots for this week. Surely it must be standard for people to be upset in your situation.
Are you going to struggle financially or will this just be a minor annoyance? Is your DH still working?
And for the most important point ... we all are, so so much. I suppose the saying of expect the worst and hope for the best is relevant. I am keeping everything crossed for the tiny possibility of a miracle. If anyone deserves one it is you and Joseph. Unfortunately I don't think it works like that sad

barefootcook Sun 12-May-13 10:08:46

Hi Trazzle

I too am hoping and praying that you get some amazing news on Friday- a miracle. I hope you and Joe manage to have some fun this week too.

Trazzletoes Sun 12-May-13 10:10:49

We won't be struggling, DH pays all the bills, we've done everything possible to protect his job.

But it's still a few hundred pounds a month we will be down so it does make a difference... And I have been squirrelling away the carers allowance because I am convinced they will be asking for it back shortly. It makes me so mad - I call them and say we don't qualify for a certain period ( although I disagree strongly with it, you can't claim if your child is an in-patient) yet they have recently paid me for the whole period Joe was in for his high-dose. AFTER I told them that he was in. They stopped the payments WHILE he was in and then back-dated them when he came out.

Joe is getting better and stronger every day and is working really hard on trying to stand up which is fab. His determination is fantastic.

TiredFeet Sun 12-May-13 13:28:31

oh it must make you so proud seeing Joe's efforts.

the carer's allowance system sounds horribly confusing considering it is being provided to people who already have a lot on their plates. and I can't see the logic in it stopping when children are in-patients! that seems really mean.

lurkerspeaks Sun 12-May-13 13:30:08

You have my total sympathy about carers allowance. They treat people like shit.

They wrote demanding an explanation and threatening a civil penalty notice to my Dad which arrived exactly 7 days after my Mother died. The letter was all about his failure to inform them in a timely manner (no definition of timely on their website) about my Mother's final hospital admission 6 months previously. He had written to tell them about it but given the circumstances it had taken him a few weeks to get around to it and the letter clearly referred to his late wife so they knew she had died.

He had stated quite clearly in his notification letter that he knew he had been overpaid carers allowance and asked them to contact him to discuss repaying.

He has copied all of his (now extensive) correspondence on the subject to our MP and I suggest you do the same as they really shouldn't go around treating vulnerable people like this.

I was also furious because for some families the threat of the fine would have been financially crippling. Fortunately for us it wasn't a big deal and we knew we could fight it anyway (legally qualified brother was sharpening his pen).

tumbletumble Sun 12-May-13 15:27:25

Just found this thread and feeling desperately sad for you. Wishing you strength for your stressful week ahead.

onedev Sun 12-May-13 16:10:50

Another wishing you strength for the week & praying for a miracle.

You're doing fantastically well holding it all together - you're an inspiration & no doubt where Joe gets his courage & determination from.

Much love. xx

toffeelolly Sun 12-May-13 16:35:56

Trazzles really praying for good news on friday. Your little Joe is such a little fighter. Praying so hard. ( hugs) xx

Almostfifty Sun 12-May-13 16:37:31

Oh Trazzles. You are coping. Tears are not a sign of weakness lovey. The staff will expect some tears, they know just how gut wrenching all this is for parents.

We're all hoping for a miracle. Everything crossed.

CabbageLeaves Sun 12-May-13 16:39:47

The care allowance system sounds dreadful. It's shocking that you have to face this sort of hassle right now.

ArabellaBeaumaris Sun 12-May-13 17:10:06

Thinking of you all x

VenetiaLanyon Sun 12-May-13 18:08:24

Wishing you all the best for Friday x

MrsFrederickWentworth Sun 12-May-13 18:34:44

Trazzle,

It's horrid to show the stress, lose that element of control, but sometimes other people need to see it. It will only have made them more conscious of the Trazzle family's need for support.

Anothet one praying here for a miracle.

In the meantime, good on Joe.

TicTacSir Sun 12-May-13 20:12:24

We are here for you come hell or high water. Please start a new thread, this one filled up pretty fast, a testament to how much we all care for the Trazzle family and especially for the little fighter, the gorgeous Joe Xxxx

tholeon Sun 12-May-13 20:21:17

You know what there are times when I have been dealing with just normal childhood stuff and sickness and I have found it hard to cope. You are doing so so well, of course you will cry sometimes, the medical staff must expect it.

Biting normal at dd's age as I am sure you know but it must be adding to the stress.

The carers allowance thing is shocking and wrong, I have been in hospital with a sick child and they need you there caring, not working. Of course the allowance shouldn't stop. Actually think there is scope for a mumsnet campaign on this, not of course involving you dear trazzles but I should do something, really.

DD's blood donation pack arrived today. She is very proud and she knows all about Joseph. She saw the cancerfuckersnail being born!

We have an appointment for two weeks' time (had to wait for antibiotics and then ear piercing time limits to be up)

Thinking of you every day and praying for Joe. Have been reading and lurking and agreeing. The battles with bureaucracy are the last thing you need.

Ragusa Mon 13-May-13 22:06:12

Namechanger here (formerly narmada). Trazzles, contact your MP about the carer's allowance? They are well used to dealing with benefit casework for constituents, and have dedicated phone numbers to call and give DWP a bollocking sort things out for you.

pinkhousesarebest Mon 13-May-13 22:22:03

Thinking about all of you so often. Hoping and praying that you will get some relief from this anguish.

Trazzletoes Mon 13-May-13 22:31:17

New thread here

I can't believe how quickly this thread has filled up. Thank you so much for all your support.

Joe has had another good day - we've borrowed a Zimmer frame from the hospital to encourage him to be more mobile... He also took it upon himself to toilet train today(!). We had decided to wait until he was walking again but this afternoon he just announced he needed the toilet and needed me to take him straightaway. Hurrah! I've been really hoping he would go back to using a toilet. He trained last summer and then went back in to nappies full time just after his treatment started. It just goes to show how much better he is feeling.

Norks please say thank you to your DD from all of us.

narmada I have been thinking of contacting my MP, it's just getting round to it!!! Much like all these things.

Thumbwitch Tue 14-May-13 00:42:44

That's really great news about the toilet re-training, Trazzle! Will head to new thread now.

ajandjjmum Tue 14-May-13 12:46:22

Following you to new thread Trazzle - good old Joe!

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