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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:
ToffeeWhirl · 11/02/2013 12:52

Also thinking of you, Trazzle. It's lovely to hear he was chasing you around the room after yesterday's dose of chemo Smile. Good luck with the final dose today. X.

Trazzletoes · 11/02/2013 20:22

Well he had the evil last dose at lunchtime so there is no going back now.

He has been on pretty good form again. DM dropped off DD for an hour earlier and they had a wonderful play together. I just miss her so much now Sad

I've spent a lot of this afternoon crying with anxiety. The nurses have been lovely but I think they think I'm a bit weird since nothing has actually happened yet...

Anyway, I'm back to my evening of crochet, Jeremy Paxman, Michel Roux Jr and penguins.

dikkertjedap · 11/02/2013 20:44

Nice that Joe and his little sister managed to have some time together.

I don't think that anyone would think it is even the slightest bit odd that you feel really anxious given what lies ahead. You are at the moment dealing with huge uncertainty, you are tired of everything you all have been going through since October, of course you cry. I think almost everybody would do the same in your position.

Sending you lots of hugs and positive thoughts.

I hope that both you and Joe manage to get some rest tonight.

hellhasnofurylikeahungrywoman · 11/02/2013 20:46

Hoping today went as well as it could for Joe and you all.

orangina · 11/02/2013 20:53

Thinking of you and your family Trazzle and wishing little J all the best..... loads of positive thoughts and a big splodge from West London (are we still doing splodges?!) Smile

Please do look after yourself too.

onedev · 11/02/2013 20:54

I'm not surprised you feel anxious, it's an anxious time. As always, wishing you the very best.

TeaMakesItAllPossible · 11/02/2013 21:23

I don't think you're weird. Personally, I would find in the situation you're in it be inconceivable that you wouldn't.

Look after yourself. And Joe.

MelodyBaker · 11/02/2013 22:31

Hope today went as well as possible and good luck for this awful journey.
Mn will be here every step of the way for you to rant.
Fingers crossed x

Cookingupastorm · 11/02/2013 22:32

Keep going Trazzle..we're right here with you xxx

LegArmpits · 11/02/2013 22:34

Thinking of you often Trazzles. xx

ShiftyFades · 11/02/2013 22:40

Gingers are firmly crossed that this final dose will kick the arse out of the bastard cancer.

I'm not at all surprised you cried, I nearly cry when I tell my work friends and DH about Joe and I don't even know him. It's unbelievable that a beautiful little boy is going through this and desperately unfair.
But he is doing so fantastically well.

He is so lucky to have you and your family. You are all amazing and a real inspiration.

Take care of yourself and cry if you want to. We are always here for you if you need us xxxx

narmada · 11/02/2013 23:35

Can they not give you something for the anxiety trazzle? I am not a fan rof anxiety drugs really but surely they could give you something to take the edge off?

minmooch · 12/02/2013 08:59

The nurses will not think you are weird at all. They know you are a very strong amazing mum to a very precious child. They will know that you have lived for months with the horror that is having a child with cancer, not only have you lived with this you are very aware that it is about to get worse for a while. Your body is trying naturally to get you to assimilate all that is going on so that you can help Joe through this.

It would be weird if you did not cry.

You are stronger than you think because you have to be.

My thoughts are with you all and much love to you all.

ToffeeWhirl · 12/02/2013 09:28

I'm sure the nurses have seen it all before, Trazzle. Sorry you are missing your DD. It must be awful to be apart from her so much.

Thinking of you and Joe every day. X.

dikkertjedap · 12/02/2013 10:21

I hope that Joe is feeling okay today. I very much hope that he is able to play and have some fun and doesn't feel too tired.

I also hope that if you have to stay in the hospital all the time you manage to distract yourself a little, be it through crochet or reading or having a chat.

Would Joe allow you to leave him for 30 mins or so, so you can go and have a coffee in the hospital cafe and maybe meet up with a RL friend in the cafe? Would the hospital have a playworker to keep Joe busy in the meantime?

Thinking of you a lot, sending you lots of positive thoughts.

BuffyFairyTopsTheTree · 12/02/2013 20:42

How has Joe been today? Have you and DD fully recovered now?

I love your updates, Joseph's antics make me smile.

If there is anything you could do with to while away the time just let me know.

The nurses won't think you're weird. No one in your situation could fail to be anxious and crying is a great release.

Love and strength and big, bold splodges

thewhistler · 12/02/2013 21:35

Trazzle, they've seen it before and you are not weird.

We all need to find a release for anxiety and crying us a good one.

Thinking of you and Joe and dd and DH.

Hassled · 12/02/2013 21:39

Still thinking of you, often - I catch up here but never know what to say. But yes, of course you're crying with the dread and the anticipation and the exhaustion. You've had to be so brave, and it must feel relentless at this stage.

IwishIwasmoreorganised · 12/02/2013 21:57

Well let's keep on hoping beyond hope that these drugs kick this bastard cancer well into touch. He's had it now so it should be working its magic as we speak.

Trazzle - surely it would be more odd if you weren't feeling anxious and scared about what your ds is going through. It's sounding like you're all getting through this brilliantly well, but it is going to be a scary and worrying time for you all. Don't worry about what the nurses are thinking. Keep n doing what you are doing - your best for Joe.

Xxx

Trazzletoes · 13/02/2013 08:27

Day 0 today which means stem cells are going in. 1 less thing to worry about!

Found out yesterday his skin and mouth may become so painful (and skin coming off in patches) that he could need to go on morphine.

thewhistler · 13/02/2013 08:31

Good luck and thinking of you.

Morphine may be helpful. It makes me v itchy, so watch.out for that, but lots of children down the ages have had it.

Hugs.

Trazzletoes · 13/02/2013 08:40

I know it will help massively. It's just such a hardcore painkiller in my mind that it makes me worry about the level of pain itself, if you see what I mean?

But if he is on morphine it will be because he can't tolerate meds through his digestive system and I think they can only do paracetamol or morphine by I/v so if paracetamol won't cut it, I guess they don't have many other options.

thewhistler · 13/02/2013 08:44

Yup, completely understand.

Paracetemol in doses for small children only goes so far.

There's not much comfort, but he is in excellent hands.

And we will lift him, and you, up in ours too.

dikkertjedap · 13/02/2013 08:44

Very much hoping that Joe is not going to have the worst side effects. How is he in himself, is he still able to go to the playroom or no longer? Does he still want to play?

I suppose the doctors may have told you, but if he needs morphine to control his pain he may show quite erratic behaviour. Not sure how many kids on morphine get this, and it is nothing to do with the kid, he or she cannot do anything about it, it is caused by the morphine.

Thinking of you all and hope the stem cell transplant goes smoothly.

minmooch · 13/02/2013 09:11

Thinking of you lots.

My DS lost the skin on his feet and legs. Sounds terrible but it just got so dry. I could peel it off his feet in great long strips - was not at all painful for him - we used to have competitions as to who could get the biggest whole piece off - yuk I know but one way to deal with it with humour! His legs were just terribly dry and we lathered on the aqueous cream. I had to change his bed sheets daily just because of the dry skin!

With the sore mouth this can be a sign of mucositus which can be horrible for them. Starts as mouth ulcers that go all the way through their system and out the other end. My DS was on morphine for this but it was a blessing. This is why they will keep a close eye in his mouth as it is a good indicator if what is going on. At first they gave DS this horrible mouth wash stuff that coated his mouth and he wasn't supposed to eat or drunk after for half an hour. He was able to tell us how horrible this stuff was and wouldn't use it again. They gave him a new product that was being trialled on children. I will look up the name in a little while. But it was an oil that was in a little bottle that I could spray directly onto his lips and in his mouth. It looked a bit like runnier olive oil. He said it was a million times better, not a clagging feel, just oily, and it did not prevent him drinking. It might be worth asking for this. After my DS trialled it all the kids on the ward were offered it.

Just keep on doing what you are doing. You are amazing. Xxx

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