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Original poster

Joe vs. The Cancer

999 replies

TrazzleMISTLEtoes · 08/12/2012 23:26

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

Survival rates are approximately 1 in 3.

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

OP posts:
NorksAreMessy · 30/01/2013 22:33

...or GIN as I call it

Furby2000 · 31/01/2013 20:30

Just to say that's fab and I'm thinking of you all!

Trazzletoes · 01/02/2013 15:04

Who was it who was on Pinterest? I can't find you back in the last thread.

Macmillan nurse has said we have a hospital appointment on Monday to discuss progress and next steps.

TeaMakesItAllPossible · 01/02/2013 20:08

T'wasn't me. I've been on Pinterest once and got lost amongst a froth of beautiful things. Got so excited I forgot how I got on and ordered a small silver teapot which I used as a zip on my wedding dress. I have never been there again. It feels like an exotic holiday taken in my youth.

Glad to hear you've got the first step of finding out what goes next planned out.

And I hope you all have a lovely weekend.

Praying4Beatrice · 01/02/2013 20:43

This reply has been deleted

Withdrawn at the user's request

Trazzletoes · 01/02/2013 20:56

I hadn't heard of those, P4B. I've just checked them out and they are for 6 months to 3 years. J is 3 but is actually the size of your average 5 year old so I don't think it will work, unfortunately.

He's doing a lot better today and has been moving around and walking much more normally and without pain which is good.

Badvoc · 01/02/2013 21:14

Still thinking if you all, and sending love to joe x

thewhistler · 01/02/2013 21:22

Glad you've applied for a blue badge.

Have you got an old fashioned cheap and cheerful fold up pushchair? Not good for going up stairs, obv, though often there are kind strangers who will.help. but brilliant for everything else.

I picked mine up at the school fair for a fiver when Ds was about 3 and was also huge. It was brilliant. I could put him in it and wheel him down corridors in hospitals, as well as streets, fold it up for the car on the bus etc. It lasted us for years. We decorated it for special events.

Obv I had to disinfect it to begin with, Ds had immune probs amongst other things, but it was a godsend.

He used it on and off till he was about 8 and finally outgrew it.

Trazzletoes · 01/02/2013 22:18

Thanks whistler - we have a Phil and Teds usually. It was just the extra space to lift him sideways in to the car as he couldn't move himself at all on Tuesday without pain. Much better today, at last!

onedev · 01/02/2013 22:59

Glad today was better. Thinking of you & wishing you all the best as always. Hope you have a lovely weekend & things go well on Monday. Smile

thewhistler · 02/02/2013 10:14

Thinking of you. Poor sweetie, but glad yesterday was better.

ToffeeWhirl · 02/02/2013 10:17

I'm so glad to hear Joe is up and about and walking without pain. I hope you all have a good weekend.

dikkertjedap · 02/02/2013 20:49

Hope you are having a good weekend and that Joe keeps becoming more mobile again.

Is it usual that you hear when you have hospital appointments etc. that you hear it through your Macmillan nurse? Is she the intermediary/your contact point? Hope your meeting on Monday will be able to address all your questions.

Trazzletoes · 02/02/2013 21:03

Having a lovely time, thanks, though DD is under the weather Sad.

This is the first time we've had an appt through the Macmillan nurse. Normally we get told before we leave the previous in-patient stay or at worst have to call the ward to confirm.

The response to my email was just a text saying that as we were coming in on Monday Hmm he would go through everything then. So I asked what time on Monday and what for, and it's for a general update and info on next steps. So I assume Joe is being admitted next Tuesday rather than this one.

I do sometimes wonder whether they forget how important (and disruptive) this all is for us. We were told about the appointment, not asked. The assumption is that we can and will drop everything. I have a hospital appt myself on Tuesday morning so it's lucky they don't clash.

I've done a bit of sewing today, and some crochet, so that's been good. Just been trying not to lose my rag with Joseph too much. I'm so tired and its all so stressful. It's not his fault, and then I worry that I'm not giving him an amazing few weeks before this awful treatment. The guilt is just horrendous. He went to sleep smiling though.

When I say he's walking, he still can't go far but he's not complaining about pain when he manages to walk a bit and he's not limited completely to the sofa anymore.

dikkertjedap · 02/02/2013 21:11

I am sorry to hear that the hospital's communication is poor. All extra stress for you, which you would think they should be able to avoid. Sad

I hope that your dd gets better soon. There seem to be so many bugs doing the rounds at the moment. Hopefully the weather gets better soon and everything and everybody perks up a bit.

Don't beat yourself up about how you are responding Joe. You are doing the absolute best you can but you are human after all. I do fully recognise the feeling of guilt after you tell a seriously ill child off ... however, the doctors always told us that it was really important to treat the very ill child in the same way as a healthy child re rules etc. as it is thought that the ill child will feel more secure that way (never removed my feeling of guilt BTW but maybe helps you).

It sounds like you can do with a hot bath and a nice glass of wine or two! Wine

Hope you all have a good night and a relaxing day tomorrow.

Trazzletoes · 02/02/2013 21:27

Thanks. We have been fairly upbeat for a while but are just so scared now.

Have had a lovely bottle of wine with DH tonight and we're hoping to have a family day tomorrow if DD feels better. DM has gone home for the weekend so it's just the 4 of us and its lovely. Joe is so much brighter than he's been since the operation. He's just a little darling. Keeps coming for hugs and his stock phrases are about how much he loves us or has missed us. I think he knows how much he is loved and cherished too. We try and tell them both all the time.

Trazzletoes · 02/02/2013 21:41

Oh yes, and today Joe decided that he wants to be Welsh Hmm Grin because he was watching the rugby with DH and came out with "I wish I had a dragon like that." It carried on til he decided he wanted to be Welsh.

Another one of his favourite phrases is I wish iiiiiiiiii had/was etc etc. usually they are funny (I wish I was a panda/ I wish I had a squirrel etc). The day he said he wished he was an angel made me cry a lot.

TeaMakesItAllPossible · 02/02/2013 22:21

((Trazzle))

He sounds like a really, really lovely little boy with a fierce intelligence. But the thing with lovely little boys, and girls I'm sure, with fierce intelligences is they could try the patience of a saint. I have lost my rag with my 3YO twice today and I haven't had the stress, emotional roller coaster, illnesses and uncertainty that you're facing. They are the masters of boundary testing. They want no-one but you and they are so intense it makes you feel like you're the only two people in the whole world and when they are demanding the world and your attention now, when you have lots of other things to do, it is very difficult. Good job they're charming, cute and funny really. I spend a lot of time with my youngest imaging I'm Snow White and he is all of the seven dwarfs rolled into one. It's exhausting.

dikkert is right. Normal is good for Joe.

I'm not surprised you're scared now. A few days of recognising that feeling and accepting it is normal before the next stage is probably what's needed otherwise you both might blow at the next stage.

I hope DD is well enough for your family day out tomorrow.

Trazzletoes · 03/02/2013 07:40

Yup. When he's 100%, all he wants is Daddy. When he's anything less than that, all he wants is me ie. he won't even let anyone else change his nappy and yesterday of course DD screamed blue murder if I stopped rocking her on my chest for a second. It was a long morning! She has slept through though so I'm really hoping she is feeling a little better today.

He is in general a wonderful little boy, serious, responsible, cautious, but full of joy.

Trazzletoes · 03/02/2013 07:42

I'm glad he sounds normal - not having had a 3yo before to compare him to, it's hard sometimes to know what's normal behaviour and what's the illness/treatment.

Good to know that intense and demanding is par for the course!

onedev · 03/02/2013 11:09

3yos are definitely intense & demanding but bags of fun & he sounds perfect! Mine are the same - only interested in daddy unless under the weather & then want me!

I can't begin to imagine the stress you are all under but you sound like you're handling it so well.

Enjoy your lovely family day. Smile

dikkertjedap · 03/02/2013 21:37

Hope you all have a good day. It is brilliant that Joe has so much energy and is so enthusiastic! Smile Hopefully your dd is over the worst and all of you get some rest tonight.

Gingers crossed for a smooth and informative meeting tomorrow.

Thinking of you,

x

blizy · 03/02/2013 22:17

Hi trazzle, sorry I haven't Ben around much recently. I am so relieved to hear Joe is doing so well after his op. hope you all managed to enjoy your family day. X

superfluouscurves · 03/02/2013 22:44

Will be thinking of you all tomorrow - hope you get what you want from the meeting.

Hope your dd let's you catch up on sleep tonight too!

[Vigorous waves from across the channel!]

toomuch2young · 03/02/2013 22:44

Hi been good to hear you have all had quite a good weekend at home.
Hoping the hospital sort their act out tomorrow and you get all the info you need.
Mynd Joe (go Joe in Welsh, so google informs me Wink
Hope you get a good night sleep tonight all at trazzle house.

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