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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:
thewhistler · 26/01/2013 17:29

Well done him, and you. Alert and watching tv, even if not on full form, is good.

TeaMakesItAllPossible · 26/01/2013 17:33

Trazzle I am so very, very pleased to hear your updates. I tell you what you've got a special little fighter there Grin.

How are you feeling now?

dikkertjedap · 26/01/2013 20:34

Hopefully it is less uncomfortable for Joe to sit tomorrow so he can start doing things and doesn't get too bored.

I think he is doing very well considering what a big operation he has just undergone.

Do you already know when you get the results of the biopsy. Gingers crossed for the best possible results.

Hope you both have a good night sleep and the ward isn't too noisy.

Trazzletoes · 26/01/2013 21:56

No idea re: biopsy results. I've asked DH to find out tomorrow.

He and I are doing ok, thanks. We're relieved that Joe is recovering so well, although in the backs of our minds is looming large the high-dose chemo which comes next. It is the hardest, most dangerous aspect of the treatment. Plus it's hard for others to recognise the need for support as it is ongoing for up to 2 months, whereas its easy for people to hold you in their thoughts for a day to have an operation, I'm not convinced our support network will appreciate the need for so much support over such a long period of time.

It's mind-blowingly nerve-wracking and still no one has sat down and gone through the procedure and side- effects ( death...) with us. I've emailed our Macmillan nurse to point this out and ask if he can come and see me to talk about it before Joe is discharged after his operation.

Praying4Beatrice · 26/01/2013 23:53

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RatherBeOnThePiste · 27/01/2013 08:44

Oh he is a hero, Praying4Beatrice, you are absolutely right, so is your beautiful daughter.

Big hugs all round. Thinking of you here too, sending much love Xx

dikkertjedap · 27/01/2013 12:33

Hope you have both had a good night sleep and Joe keeps improving so well.

High dose chemo sounds very scary and daunting - does he get radiotherapy as well? The positive thing is that so far his cancer seems to have really responded to the conventional chemo, so you would expect that there is a very very good chance for the high dose chemo to eradicate it.

It is going to be a long slog though. You know that mumsnet will be there and we will all try to help you, but of course support in real life is the most important.

Not sure if this is an option, but would you have some close family/friends (even if not necessarily nearby) where you dd could go for a break, so you both can concentrate on Joe? It could be packaged as a special treat for you dd as well. Maybe not possible for the full period but even if it is for the initial period, so you can settle in a routine.

I hope that your husband will be able to get compassionate leave. Where I used to work we would probably have granted compassionate leave in such circumstances, although possibly not for the full two months (or part would have been unpaid, I would expect), may be worth exploring though.

I think there is no way round it, it is going to be tough. I suppose he is going to be in two months isolation - is that correct? If so, is there anything you want/need for him, or anything he himself would like, to keep himself busy in what is ultimately going to be a boring, confined space? Please let us know, I am sure we can organise it amongst ourselves and get it to you.

Thinking of you, as always, and don't forget, Joe has already come so so far. He is a true star!

ShiftyFades · 27/01/2013 13:29

Trazzle, I'm squeezing your hand very tightly, I wish I could do so in rl.

I would certainly add my name to a list of people to send things to Joe to keep him occupied.

You are always in my thoughts x

BehindLockNumberNine · 27/01/2013 15:14

Trazzle, he is doing so so well by the sounds of it. Still keeping you in my thoughts, still splodging and sending all my best wishes xx

Trazzletoes · 27/01/2013 21:55

Joe has done really well today. We have moved beds from right next to the nurses' station (for the poorly children who need more intensive monitoring) to the next bay along. Good times.

The other cannula has come out too. Joe is now just on fluids (very slow) and iv antibiotics. He's eaten a tiny bit today and they are happy so he's back to having his overnight feed, albeit extremely slowly so as not to make him sick. He'll then be switched to oral paracetamol and his fluid is being stopped in the morning, all being well, so he will be "unhooked".

He's spent a couple of hours sitting up today and tomorrow we are going to try to get him to walk. He hasn't walked at all since Tuesday!

Still, all the signs are that he is going in the right direction.

Trazzletoes · 27/01/2013 21:59

Ah yes, re: things to keep him occupied, thanks tons for the kind and generous offer, but he is going to be extremely unwell with a very high temp and sickness and pain. I think it will be a miracle if he can even watch tv so, in the politest possible way, I think you would be wasting your money. I think, also, the bone marrow unit where he will be have really strict rules about what can be taken in etc as he will have no immune system so the most normal germs could have terrifying consequences. I believe that even the post has to be double envelopes to prevent unnecessary germs getting in and all his clothes have to be washed in the hospital etc.

But thank you, your kindness is appreciated.

Trazzletoes · 27/01/2013 22:15

I've just uploaded a picture I've taken of him today (check out that scar!)

I've done it from my phone so hope it's ok!!!

ToffeeWhirl · 27/01/2013 22:27

I can't believe Joe is smiling at you in that photo, Trazzles, in spite of all his discomfort - he really is a star. I'm so glad that he's making good progress and has been 'promoted' to another bed. Best of luck with Joe's first steps tomorrow. Xx.

BehindLockNumberNine · 27/01/2013 22:32

Fantastic smile, he is a little star!!

pushmepullyou · 27/01/2013 22:53

What a gorgeous smile Smile. I'm so glad that he's recovering well from the surgery.

toomuch2young · 27/01/2013 22:54

All going in the right direction, what a superstar.
Gorgeous smiley pic he's doing brill isn't he.
Good luck for the de hooking and steps tomorrow.
I really hope all your RL support are in it for the long haul - your mumsnet ones are!
Hope you all have a comfortable night x

LegoAcupuncture · 27/01/2013 22:57

Frazzled, haven't posted before but have followed Joes story from the off. He has an amazing smile, such a lovely boy.

I hope he continues to do so well in his treatment.

Praying4Beatrice · 27/01/2013 23:01

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barefootcook · 28/01/2013 08:15

Wow Trazzle- he is gorgeous! Great news about moving beds and good luck with the walking.

minmooch · 28/01/2013 08:15

Oh Trazzle what a lovely photo of Joe. I am so pleased that he is improving every day.

High dose chemo is very frightening. The stronger Joe is now will stand him in good stead for his body to cope with the side effects. In one respect it is not nice having the time to worry about it - with my sons diagnosis we were 2 days later in surgery and then very quickly into high dose without the time to worry about it beforehand.

There is no choice for you all and that makes you feel very helpless. But your friends who have been with you up until now will stay with you and keep supporting you. My friends actually got better as they realised the seriousness of it all, the huge impact it had,

My friends had a rota to come up to hospital to bring laundry, food, coffee, anything really. Or just to sit with me and feed me lunch. None of them expected to see my DS as he was too poorly but they would come up regularly even if I could only sit with them for ten minutes. My good friends understood and wanted to do whatever they could to help us.

Make sure you keep eating and take vitamin supplements. I have had a gum infection for the last 14 months - dentist says it is stress and poor diet (this week it has finally gone!). I punished myself for not being able to do more for my son but it would have been better to have looked after myself a little more.

Thinking of you all xxxxxxx

BarmeeMarmee · 28/01/2013 08:18

Trazzle what an amazing picture. What a gorgeous boy he is. And you can still see his spirit shining through, despite all the pain. You must be so very proud. And I'm sure he's very proud of you and DH too - you are both doing fantastically. Gingers firmly crossed Joe continues to improve and that today goes well. Good idea requesting the Macmillan nurse comes to speak to you. Hopefully he will be able to answer all your questions. Still splodging...

Trazzletoes · 28/01/2013 09:12

Thanks all. The Dr is happy again with his progress this morning.

If he eats ok and isn't sick, and gets up and walks we might even be home tomorrow! Wednesday more likely so I'm not getting my hopes up but we will see!

saffronwblue · 28/01/2013 09:19

Fingers crossed for home tomorrow.

ShiftyFades · 28/01/2013 10:44

Yay for Joe being so strong Grin
That's good news from the doctor.

Gingers crossed for comfortable rating and walking xx

TeaMakesItAllPossible · 28/01/2013 18:24

Hey Trazzle - that picture of Joe is amazing - has he grown? He looks really, really tall. Lovely to see him looking so very purposeful and present (not articulating it very well but I hope you know what I mean).

Gingers cross for you both leaving the hospital as soon as possible so you can regroup ready for the next stage.