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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 · 05/02/2013 22:02

Love and hugs to all of you, DH coping with dd and probably wanting to be with you and Joe too, you wanting to be with them, dd wanting you, and Joe, bless his cotton socks, full of grace and courage.

We are all here Splodging away through the night and day and thinking of you.

Trazzletoes · 05/02/2013 22:48

Joe doesn't know what's coming Sad. We don't know how to explain it to him, as he has no concept of any of the side effects. And if we tell him the chemo is going to make him so poorly, what if he does something to the drip?

I don't want to frighten him, but I don't know if not telling him is worse. We could explain about the operation because that's a fairly easy concept, but this... I don't know how.

He knows something is up though. Mummy, why are you so sad? Has been a recurrent question. And you could tell he was scared to come to hospital today though he couldn't have said why. It's just a pervasive anxiety.

ToffeeWhirl · 05/02/2013 22:55

Trazzle - I always find there is a point where my DC are so sound asleep I can cut their nails for them and they don't wake up Wink. I really hope that when Joe is this sound asleep, you can sneak into bed with him and give him that cuddle. It would be so good for you.

So sorry your DD has been ill today, but I'm glad to hear Calpol and DH are both working their magic on her.

I'm sorry too that the other parents don't understand what Joe is facing with high-dose chemo.

Thinking of you and burning a light here for Joe in Sussex. X x.

NorthernLurker · 05/02/2013 22:59

You don't want to make him scared of the treatment. You're right - that would be unwise. I think you maybe need to say that he's there to have some medicine to help his body get better but first it will make him feel poorly whilst it's working. You can tell him you will be there all the time he feels poorly and you will be there when he gets better. He will know when he feels better and worse. That can't be hidden from him so you need to reassure him - that you know whats happening and that the doctors have a plan. You can't stop him feeling ill but you can try and stop him being scared.

WhoKnowsWhereTheTimeGoes · 05/02/2013 23:02

I haven't posted for a while Trazzle but have been thinking of you and will continue to send positive thoughts and prayers your way. x

ToffeeWhirl · 05/02/2013 23:05

Sorry, I X-posted, Trazzle. I think it's fair to tell Joe that you don't like him being poorly and it upsets you, as that will explain your anxiety to him. I think it would be unfair on him to tell him all the possible side effects of the treatment because it will frighten him and you don't know which, if any, side effects he will suffer. If I were in your shoes, I would explain about the treatment in the simplest, most child-friendly, least anxiety-provoking terms. If you don't feel up to this, do you think a dr could do this for you?

Also, it is likely that Joe is afraid of coming back to hospital because of the treatment he has been through already. It must have been so nice for him to be back at home and he must associate hospital with difficult times. Poor love.

This must be so, so unbelievably hard for you, but you are being so strong for Joe (I know you mustn't feel like that inside, but you are doing all the right things for him).

((hugs))

neolara · 05/02/2013 23:11

Thinking of you, Joe and all your family today.

5madthings · 05/02/2013 23:16

Sending love and strength xxx

onedev · 05/02/2013 23:20

Love & strength from me also & I'm saying it with you too - he will get through this.

Praying4Beatrice · 05/02/2013 23:21

This reply has been deleted

Withdrawn at the user's request

5madthings · 05/02/2013 23:23

he will get through this

BuffyFairyTopsTheTree · 05/02/2013 23:52

Hi Trazzle,

Sorry I haven't posted on here for a while. I follow everything on FB but I do like to add support on here and feel very bad that I haven't.

You and all the Trazzles are in my thoughts every day with my gingers firmly crossed and everything splodging furiously! Splodging in Essex again tonight so that must be a bit of extra luck.Smile

Sorry that the hospital's communication has been lacking and Joseph's high dose chemo has come sooner than expected. It must be so scary for you, such a nasty list of potential side effects. He will get through it. He's whooping cancer's ass.

Is there anything you need? Don't be shy in asking. Any food? Anything to while away the hospital hours? Anything for DD?

Glad DD's temp is coming down. Poor thing. So unfair you can't be with both.

I'll be thinking of you tomorrow and rooting for Joe. Big hugs.

BarmeeMarmee · 05/02/2013 23:58

I gave my babies extra tight squeezes tonight Trazzle, as you asked. I hope you can sneak and do the same with Joe. My gingers are crossed so tightly for you all. I'm glad Calpol is working its magic on DDs fever and I hope you all have a restful night. Splodging away here.

MissEleanorLavish · 06/02/2013 00:03

De-lurking to wish you all good luck and love for the next few weeks. Will be thinking of you all and especially Joe x

dikkertjedap · 06/02/2013 08:53

Morning Trazzle,

I hope you both have been able to get some sleep.

It is hard to know what to tell a sick child. Totally agree with other posters - you don't want to scare him. However, he must be wondering what is going on. I did at the time a bit like what Northern Lurker suggests. But you know Joe best and you know best what he can and cannot deal with. It is a fine balance. Does the hospital have play workers which may be able to help with this?

Also, as P4B mentioned, not all children get necessarily very very ill with high dose chemo. Unfortunately, you don't know in advance how each individual child responds.

Thinking of you and hoping very very much that Joe is one of the lucky kids which are not too badly affected by the high dose chemo.

bunnygirl80 · 06/02/2013 09:54

I've been lurking on your threads but haven't posted till now as I never know what to say. You, Joe and the rest of the Trazzle family are in my thoughts as you start this difficult journey. I hope he avoids as many of the side effects as possible and you have your whole family at home together as soon as possible

ToffeeWhirl · 06/02/2013 10:01

Thinking of you, Trazzle. x.

SlightlyJaded · 06/02/2013 14:54

Also de-lurking to wish you, Joe and all Trazzles strength for the coming few weeks.

I agree that the best thing would be to tell him something along the lines of, "we want you to get better as quickly as possible, so you are having the super-strength medicine. It's so strong it might make you feel more poorly first, but that's because it's zapping the sickness". I think if you can give Joe a reason for feeling so bloody awful - I.e because it's a means to an end- you will be able to prepare him, but help him understand it's for the best.

You are an amazing mummy and we are all thinking of you in our house x

MelodyBaker · 06/02/2013 16:09

I have lurked since Joe's diagnose but not posted.
you and joe will get through this cancers horrible and for someone as young as joe its even worse. Don't scare him. Tell him he will be very poorly but it will make him better.
((())) hugs for you and splodging in from manchester xx

TeaMakesItAllPossible · 06/02/2013 19:35

Just dropping by to say I'm thinking of you, your DH, DD and Joe.

Look after yourselves

ShiftyFades · 06/02/2013 20:10

Hope today has gone as planned for you and Joe. How is DD today? Better I hope.
Have been thinking of you all day xxxx

Trazzletoes · 06/02/2013 22:37

Thanks, DD is still woe-begone and full of snot but her temperature has settled today. I however am also full of cold. Thanks so much, sod. No really, the one time in my life that it is so important I don't get sick... And this happens.

J is fine, expecting him to carry on as fine until 14th/15th when he will basically "fall off a cliff". He's been in the playroom all day while I can get him out and he isn't isolated.

Still terrified but have had a chat with him - thanks for your suggestions. Ill keep talking to him about it every day.

Badvoc · 06/02/2013 22:50

Still here and still thinking of joe x

Trazzletoes · 06/02/2013 22:51

The difficulty with telling Joe that he needs the medicine to make him poorly to make him better is that:

  1. He doesn't feel poorly. He has no concept of how sick he is because to him this all started because he hurt badly for about 10 minutes and had a bit of a sore leg for a couple of days. And I doubt he even remembers that now.
  1. We are very anxious not to give him a lifelong fear of medicine as something that can make you feel unwell. We call it chemo to differentiate it from "medicine" like calpol or antibiotics but then he obviously doesn't know what chemo actually is.

He knows there was something in his tummy that wasn't meant to be there so the Dr had to take it out but that's really as far as he can understand.

I've told him he is going to start feeling poorly in a few days but that we will be there with him and we'll still be there when he starts to feel better again.

dikkertjedap · 06/02/2013 22:58

Oh Trazzle (((hugs)))

Would you be able to take something like Sinutab/Sudafed/other type of decongestant to help clear your cold quicker?

Are you allowed to stay with Joe with your cold or do you need to swap with your DH? How hard, what bad timing.

Please look after yourself, chocolate is fine but don't forget all the healthy stuff. I hope you still have help in RL, people bringing healthy meals etc. Fresh orange juice would be good, but not sure if that is allowed on the ward (does everything need to be pasteurized?)

I think that it is very good that you have had a chat with Joe - although hard, it hopefully reassures him. Also, it may help him if he understands a little why you are anxious, because he will pick up on little things, it is almost impossible to hide that from a child as they are so tuned in to such things.

I hope you manage to get some rest.

Thinking of you,

x

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