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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:
Badvoc · 06/02/2013 23:00

I think your way of explaining it is excellent.
I hope the next few days are not as bad as you are expecting x

dikkertjedap · 06/02/2013 23:03

Yes, I think your explanation is very good.

It is not about the fine details. The key thing is that he knows that you will be there and you know what is going on. You will be his pillar.

x

TeaMakesItAllPossible · 07/02/2013 08:08

Thirding your explanation (if that's possible), i can see how it would work perfectly for a 3YO, and hoping that your cold clears up quickly. May Joe have another good day full of play.

toomuch2young · 07/02/2013 08:18

I think you have thought that thorough briliiantly.
I am full of cold too and was going to feel bad today about it spoiling an evening out - then i remembered you and your cold and how much more serious it was for you not to get bugs, and I thought of Joe and how ill he may possibly feel and I really thought I will never moan about minor bugs ever again!!
You are all doing amazingly. Hope you feel a bit better today and Joe has another comfortable day and can do a bit of playing.
Take care x

Trazzletoes · 07/02/2013 08:26

It wasn't my idea :D someone else suggested it below but I can't find the post now to credit them! :D

Honestly, whinge away about your cold. I always have done and fully intend to continue to do so!

MaggieMaggieMaggieMcGill · 07/02/2013 08:34

Trazzle, hugs, I really really hope the side effects are minimal. For what it's worth, I know someone who went through this four years ago, when her son was three. They had the high dose chemo, the isolation for six weeks and I'm sure some of the other awful side effects mentioned but he came through and he is now fine, no problems at all.
They also had a dd who was around the same age as yours. Just mentioning it so that you know this horrible horrible medicine can and does make a huge difference to fighting cancer.

LegArmpits · 07/02/2013 09:32

You're all in my thoughts Trazzles, I'm just at a loss for words as to how you must feel. But candles being lit for you every day here in Barry.

thewhistler · 07/02/2013 10:53

Trazzle, thinking of you.

Don't worry about how he sees medicines and doctors, you have explained brilliantly.

And IME, from both my own childhood when I was quite ill with foul treatments and from Ds's, ditto, though neither so bad as Joe's, you remember the nice or funny bits. Ds remembers discussing power rangers and spider man with a lovely Dr, and getting stickers for having blood tests. ( vampire bats lol)

If you can, get the nice drs and nurses to tell him about their childhood or children. Just little things. He's a bright child and will be interested some of the time, even when he feels so ill.

tholeon · 07/02/2013 11:44

oh so sorry about the cold. There are far too many bugs around at the moment, they are constant in our house. Boots do a nose spray (sorry can't remember its name) which allegedly lessens the possibility of getting viruses, and can be used by anyone over two. I used it religiously last year for various reasons and I do think it made a difference. I know you have probably already thought about it, and advice from an internet stranger may be deeply unhelpful, but would there be a possibility of DD staying out of nursery - maybe with your DM?? - to avoid her catching nursery bugs and giving them to you and DH, just while Joe has the high dose chemo?? I know it may well not be possible .

It sounds like you have found the right words to say to Joe. I remember being in hospital as a 5 year old - just with a burst appendix, so not comparable I know - and tbh my main memory is feeling secure and ok as long as my mum was there. She couldn't be the whole time, I think hospital rules were different then. Your DH is I am sure more hands on than my father was so the feeling of security would probably exend to him too - f that makes any sense.

dikkertjedap · 07/02/2013 13:10

Hope today has been a good day and Joe has been playing a lot.

Also hope that your cold is getting a bit better and your dd is recovering as well.

Thinking of you,

x

minmooch · 07/02/2013 22:16

Hi Trazzle. I hope Joe has been good today. Try not to worry about how you explain things to him. He will understand what he is able to assimilate for his age. My DS was 15 when diagnosed and only took in what he could process at the time. Even now I think he only takes in what he is able to cope with (he's 17, extremely bright, doing Alevels etc so he 'understands' everything) I just think it is a way of self preservation.

He won't remember the bad days luckily, although it will stay with you. He will draw comfort from you just being there.

Keep strong, you are amazing. I am thinking if you lots.

ShiftyFades · 07/02/2013 22:59

Hi Trazzle, how has your day been? Is DD any better?
You sound like you've said all the right things to Joe. I echo the fact that he won't remember the bad stuff in years to come.

I spent a lot of time in hospital as a child: pneumonia twice, plenty of asthma attacks and had to have all my back teeth out due to the sugar filled medication I was on to treat all these illnesses.

All this was up to the age of about 6... I can recall: a lovely nurse who helped me with my jigsaws, waking up to blood soaked pillows (teeth time), being in an oxygen tent (several times) and, most importantly, cuddles from my mum and the smell of Tweed Grin

Keep calm, keep playing, keep cuddling and just be you.

Trazzletoes · 07/02/2013 23:05

Thank you all for your positive stories. It helps.

Joe has been grand today, although we are both tired so snapping at each other. DD is on the mend, finally!

A visit from one of DH's aunts and uncles really cheered Joe up. They are quite elderly and although we see them infrequently, Joe is crazy about them. They are hysterical - the uncle always gets Joe's name wrong and the aunt kept announcing that she couldn't understand a word Joe was saying and could I translate? She cried when they left the hospital though (not in front of Joe) which shook me a bit because she doesn't cry.

Joe had a surprise hearing test today. Unfortunately this showed the chemo has started to affect his hearing - not enough to notice without the machines, but it's there. It might get worse, but it could also get better still. To be honest, we would bargain most things for him to just live.

P4B, I know this degree of hearing loss is nothing compared to what you're facing. I hope B's hearing tests are still going well.

min you and Kinky are my inspiration. You are both incredible, strong women.

bigmouthlala · 07/02/2013 23:25

I have nothing constructive to say apart from ... thinking of you, your DH, Joe, and the smallest Trazzle every day.

Sorry to hear about the hearing test though. Fingers crossed it rights itself.

I hope you sleep well tonight.

bobkate · 07/02/2013 23:58

Same as bigmouthlala - thoughts still very much with you all xx

ToffeeWhirl · 08/02/2013 00:11

Glad you had visitors to cheer you and Joe up today. So sorry the chemo is affecting Joe's hearing.

Wishing you and Joe a restful night (and hope you manage to sneak some cuddles with him when he's sleeping Wink).

Praying4Beatrice · 08/02/2013 00:30

This reply has been deleted

Withdrawn at the user's request

BuffyFairyTopsTheTree · 08/02/2013 09:55

So sorry about the hearing loss, gingers crossed that it will get better in time.

It's nice that Joe had visitors to cheer him up. They sound lovely.

I think your explanation is great btw. On a level for Joe but not too much to make it confusing or scary. He'll be strong as long as you and DH are there.

How is Joe doing today? How are you feeling?

Abra1d · 08/02/2013 10:02

Trazzle, Joe, you and all your family are in my thoughts today. I hope some of the winter sunshine is reaching you in the ward, too.

dikkertjedap · 08/02/2013 13:00

Sorry to hear about the hearing loss, hopefully it is reversible.

Brilliant that his aunt and uncle managed to cheer him up. Hope he is having another good day today!

It must have been hard for you to see his aunt crying - but good on her that she managed to keep it together whilst she was with Joe.

Very good news that your dd is on the mend. I hope your cold is also on the way out and I hope that you manage to get some rest.

Thinking of you,

x

BuffyFairyTopsTheTree · 08/02/2013 17:56

Trazzle, would Joe like a sing and sign DVD? I think remember you saying you used to go? Anyway, putting in an order for my DD soon and would be happy to get them for Joe if he'd like them. They have stage 1 and stage 2. Sorry if that's no help whatsoever.

Lots of splodging for you. x

fraktion · 08/02/2013 19:35

Sending love, strength and splodges.

I really don't know what else to say but I am thinking of you all.

TeaMakesItAllPossible · 08/02/2013 20:26

Friday night candles lit for the Trazzles - still thinking of you.

Not sure if this will help but when I was in my early teens I had a tumour removed from the back of my head. The only two negative things I remember were going back to school after the time out - it was quite hard to slot back in for about two days - and my Mum washing my hair so when I saw my friends the hair left on the front of my head was clean. Anyway long story short - I don't have a full auditory range and manage well - I'm not bad enough to need a hearing aid. Obviously I don't know how much his hearing has been damaged. In the case of my slight damage, I never noticed a difference. Though have since chosen my place in a room carefully to make sure that I face the person I'm talking to all the time because I think being able to see their faces and emotions really helps me "hear" them. The worst that happens to me now is that when I don't have my glasses I sometimes cause much hilarity by saying "I'm sorry I can't hear you ... I haven't got my glasses!" I'm sure that Joe will adapt too because he is so young and honestly the human body is amazing - it just gets on with it.

But as this is about Joe ... I wish for tomorrow that there is much playing and love.

SPBInDisguise · 08/02/2013 20:33

Trazzle I'm another one who has been lurking not posting as I simply don't know what to say. Which is Crap :) all my love to you all, especiallly Joe xx

thewhistler · 08/02/2013 22:08

Scary stuff and so sorry, but as others have said, let's hope and pray for the best, full recovery of it.

Thinking of you as the roller coaster whooshes you and Joe on it. And hoping dd has recovered and DH is surviving.