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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:
IwishIwasmoreorganised · 17/02/2013 19:46

So the bad bit has started, that's obviously hard for you all, but it also means that you're a step closer to getting to the end of all this.

I really hope that this spell doesn't last too long. Joe sounds amazing at telling you how he's feeling for one so young, at least the medical team can help with the side effects if they know how he's feeling.

Lots of love to you all

Xxx

dikkertjedap · 17/02/2013 20:11

Poor Joe, I suppose the only consolation is that these are all steps on the road to recovery, as awful as they are.

Good to hear that he has an NG tube so at least there is no stress that he has to eat to keep his strength.

Is his mouth okay or is he very sore? I hope he gets all pain relief he needs and that this very unpleasant period is going to be as brief as possible.

He is so brave, so articulate, such a lovely boy.

Thinking of Joe and you and wishing both of you lots and lots of strength.

Trazzletoes · 17/02/2013 20:43

His mouth isn't sore yet - he can't eat because stuff going in to his stomach too fast makes him vomit. Even his meds have to be put in really slowly, and they are only a couple of mls each.

He's worse again today but still has a lot further to go down. He's just lying down, not even able to concentrate on tv. He's been a bit sick and just keeps saying "I don't like this mummy, I don't like it". What the heck can I say to that?! "I just want to feel better by now mummy". Sad

His blood counts have dropped considerably and he is now unable to fight off any infection by himself. He is likely to start needing blood transfusions within the next couple of days. His tummy is hurting. He is miserable.

I just want to scoop him up in my arms and hold him. But that would make him vomit so not ideal. I just have to sit and watch him instead Sad I love him so, so much. He is far too little to have to go through this.

Trazzletoes · 17/02/2013 20:46

On a more positive note, I've stopped dreaming about his funeral again, which is a relief. But all day I've had really obtrusive thoughts about the day my dad died. I just keep running over it in my mind again and again. It's really upsetting me but I can't stop thinking about it Sad

ninja · 17/02/2013 20:49

Oh Trazzle, I normally just lurk but I couldn't leave this unanswered. Sad

I'm guessing that at least when he is well he won't actually remember being so ill.

He sounds so articulate and really grown up for his age.

You're doing amazingly too. Hugs and gingers crossed from near Manchester x

Trazzletoes · 17/02/2013 20:55

Obtrusive? I think I meant intrusive Blush

TicTacSir · 17/02/2013 21:09

I'm so so sorry... it sounds horrible, especially for Joe, but for you having to watch him.
No words of wisdom but a Devon splodge (think of it with clotted cream if you will) and a cuddle for you, Trazzle. Would offer Joe a cuddle but don't want to make him sick...
Things can only get better from here on in...

thewhistler · 17/02/2013 21:14

Oh Trazzle, no wonder you hark back to your DF.

Would it help to tell Joe that magic medicine always takes a long time to work and is jolly uncomfy when it does?

I don't know of power rangers is still on or if he likes them, Ds did at 3, but their fights often went on a long time.

That's what's happening in him, while the goodies take on the baddies. So particular yukkiness is when the fight has to involve more people, more sword fights, more jumps from buildings etc.

The same would be true of superman or Batman.

You could get models to put by his bed.

tunnocksteacake · 17/02/2013 21:18

This reply has been deleted

Message withdrawn at poster's request.

StillStuck · 17/02/2013 21:49

oh Trazzle Sad how hard to not even be able to hold him. But you being with him, and holding his hand or anything you can do, will be helping him, it really will.

not the same, I know, but DS broke his leg and he was so scared and in so much pain when he was being x-rayed, and all I was able to do was hold his hand and stroke his hair, and I hated not being able to do more with every fibre of my being, I felt like what I could offer him right then just wasn't enough.... But then, when I got food poisoning when travelling on my own with DS (2), he reached out whenever I was being ill and offered me his hand to hold to help me. to me that shows how much even a hand hold really does help them.

onedev · 17/02/2013 21:50

I'm so sorry he's going through this - poor little thing, but he sounds amazing, as do you& he will get through this. He's a fighter like his mum.

Gingers firmly crossed & splodging brightly. Go Joe!

dikkertjedap · 17/02/2013 21:55

How hard for Joe and how hard for you to have to watch it. Sad

Would he be able to listen to you reading a story to him or alternatively an audio CD (he may prefer just to hear your voice even not really listening, my dd always found that very comforting even when she was too ill to really follow the story).

It is hard to know what to say, apart from commiserating with him. Maybe explaining that this is the hard bit he has to go through in order to beat this disease, so he knows that it is not going to stay like this, although he will first become more ill before better.

How hard not being able to take him in your arms and giving him a big hug Sad.

I hope you can find a way not being reminded of your father's death as it must make it even harder for you. Is there any way for you to get psychological support (if you want it) given how much you have to deal with? Not sure if MacMillan or other cancer charities provide such support?

I very much hope that both of you will be able to have a good night sleep.

Thinking of you,
x

Cookingupastorm · 17/02/2013 22:04

Just being there is enough Trazzle..he knows that you are there to love him through this, it's horrible, but it will pass. Love and prayers to you all.

Trazzletoes · 17/02/2013 22:41

When he feels this unwell he only communicates by screaming as well. I know it's just him vocalising his distress but its really harrowing.

And everything upsets him. He full-on screamed at me earlier because he didn't like my hairstyle and wouldn't stop screaming until I had put it up in my normal ponytail.

His diarrhoea has got a lot worse this evening so they are talking about reducing the feed he has through his NG tube. Again, this wasn't unexpected but it just sucks. It all sucks.

But it will totally be worth it if it blasts the cancer to the far side of hell.

Trazzletoes · 17/02/2013 22:43

dikkert when he woke up at 9pm he screamed for his bedtime story (that I had thought him too poorly to concentrate on!).

bobkate · 17/02/2013 22:47

Ah trazzle....thinking of you and little Joe. He must be so confused as to why he feels so rubbish. Splodging away for you all and willing with all I have that it certainly does blast the cancer to the far side of hell xx

5madthings · 17/02/2013 22:49

Oh trazzle it sounds so hard but cling on to the thought that it ius helping to kick the cancers butt!!

Do they give him meds to help with the sickness and to help him sleep?

NorthernLurker · 17/02/2013 22:51

It will be worth it.

Today is a day you don't have to live again. There may and probably be other equally hard days ahead but today is done at least. Every day, every hour you and Joe are moving through this hell and he is going to come out on the other side. Every hour done is one he doesn't have to do again iyswim.

Trazzletoes · 17/02/2013 22:52

He is on anti-sickness drugs but nothing to help him sleep. He can catch up on sleep during the day so there's no need, and I guess with him being sick as well, they want him to wake up if he's going to vomit.

5madthings · 17/02/2013 22:55

Yes I guess that makes sense I just thought as he is so uncomfortable at least when he is asleep he is less aware and sleep aids healing. They will know what they are doing and its obviously something they can review at any time as necessary.

How long is this bit supposed to last?

ShiftyFades · 17/02/2013 22:58

Oh Trazzle this is so rough on you all. I am glad Joe can tell you how he feels, as awful as it is to hear Sad

I hope his tummy settles soon, it must all be so bloody horrid for you. I think and pray for you daily and I am cuddling my DS extra tightly. You are a braver woman than I could be, I think you are amazing.

Night night to you both, gingers crossed for a comfortable night for Joe xxxx

dikkertjedap · 17/02/2013 23:18

Not sure, but maybe he is desperately trying to create some stability to feel secure, hence not wanting a change in your hair style, screaming for bedtime story, these are probably things he associates with how his life was before feeling so poorly. It must be so hard for him to make sense of it all.

It does make it incredibly hard for you as well, trying to do the right things but possibly almost impossible to please him given how poorly he is feeling.

It makes it even more difficult that nobody knows how long this stage is going to last, otherwise you could make a chart together and cross of the days, but of course in this case that is not possible as nobody can say when he will start feeling better.

My dd when very poorly loved to have me stroke her face, very gently around her eyes, tracing her eyebrows, along her cheeks, moving from her ear lobes to her neck, etc., very very softly and slowly. She liked that for hours on end, it calmed her down a lot. Not sure if it is something Joe would enjoy or not.

I suppose it is a small chance you will both get much sleep if the diarrhoea is setting in Sad, still hope you both will manage to get some rest.

barefootcook · 17/02/2013 23:30

Dear Trazzle

I don't think I can offer anything helpful to you and little Joe but just wanted to say Iwas thinking about you both. It sounds dreadful and you are both so brave. Please, please let us know if we can do or send anything. It will get better and Joe will beat the nasty cancer. I hope you have a reasonable night if that is at all possible at the moment.

TeaMakesItAllPossible · 17/02/2013 23:39

Still with you Trazzle. It does suck.

You are so important to Joe and his recovery. And your ability to understand him will make it easier for him. I still remember my Mum's hand on my head stroking my fluff. Very calming and cool.

Thinking strong thoughts for you and Joe.

Dothraki · 17/02/2013 23:54

Trazzle - sending you all hugs - you are in my thoughts x Come on Joe xx