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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:
Missymoomum · 05/02/2013 13:19

I first read this post a few days ago and have been lurking since then but wanted to say that i really hope it all goes well for your DS. I can't imagine how you must all be feeling but i wanted to let you know that i'm thinking of you and i pray that it all goes well.

Trazzletoes · 05/02/2013 13:58

My eye appointment went well and I have been discharged Wine

Leaving to take Joe to the hospital in an hour. I have consumed an awful lot of chocolate for someone who feels too sick to eat.

Can't even concentrate on packing. I know we will turn up without his pyjamas or something. Or, God, MY pyjamas!!! That would be dire...

VenetiaLanyon · 05/02/2013 15:27

Glad the eye appointment went well; one less thing to worry about.

Best of luck this afternoon, and remember that there's no such thing as too much chocolate in these circumstances...

foofooyeah · 05/02/2013 15:40

You will be your way now. The list of possible side effects sound awful but they are 'possible' I hope that your Joe goes through all this with the minimum of discomfort - I will be praying for you all.

The only advice I can suggest is to take one day at a time, dont looks forward and worry, just get through each day and night as it comes.

dikkertjedap · 05/02/2013 15:59

Pleased your eye appointment went well.

You are probably already in the hospital now.

Just would like to say, if there is ANYTHING you need/would like for Joe and yourself whilst in hospital at any time during the next weeks/months, please DO let us know because we very much want to help in any way we can.

Agree with others, the potential side effects are awful, we can only hope (and those who are religious, pray) that Joe will not face the worst ones.

I feel awful that a child has to go through all of this because there isn't any other (better) treatment yet.

Thinking of Joe and you and other Trazzles,

x

Trazzletoes · 05/02/2013 16:32

On the way to hospital, DD's nursery called to say she's running a fever.

Every time we are in she gets a temperature. I just want to cry. I want to hold her and cuddle her and look after her and let her know mummy loves her.

I get irrationally anxious every time that she has meningitis, that no one else is going to notice and I'm never going to see her again.

Fortunately Joe is playing happily so that's one thing...

Alibabaandthe40nappies · 05/02/2013 16:34

Trazzles you poor thing - and your anxiety about DD is totally understandable :(

Splodge for Joe x

MyHeadWasInTheSandNowNot · 05/02/2013 16:59

It's so bloody difficult to be everything, for everyone, all of the time isn't it :( If only we could clone you!!

It's natural to worry about DD like that - all you can do is talk yourself down x

I hope DD is better soon and you have a calm night with Joe.

NorthernLurker · 05/02/2013 17:07

Just seen your update. I know this is a very scary time but just keep moving forward. Will be praying for you and of course for Joe.

Halfling · 05/02/2013 17:14

Praying and sending lots of good wishes your way.

DuchessOfAvon · 05/02/2013 17:28

Trazzles - I am delurking to add my thoughts and support to the ever-growing pile. I will hold you and Joe and your family in the light today, tomorrow and in the coming weeks.

I am nearby so should you ever need a well-intentioned complete stranger to do something for you, then I am your woman. I have no idea what set of circumstances could ever arise that you'd need to PM me, but the offer is there if all other options fail.

barefootcook · 05/02/2013 18:42

Just wanted to let you know that I am thinking about you Trazzle. I really hope that the treatment is totally successful and that little Joe doesn't suffer too much in the process. I will ask the Chaplain at school to pray for Joe again at our next Chapel.

ajandjjmum · 05/02/2013 18:55

Just to add to the prayers of all the other mumsnetters - hope that in years to come, as you watch your lovely son growing up, you'll look back on this time as a worthwhile nightmare.

Trazzletoes · 05/02/2013 19:39

J is fine and started on his pre-meds: Zovirax (of all things!) and a fake liver enzyme in case he gets the liver disease.

I so desperately want to get in to bed with him and hold him tight but he hates that. He would wake up straightaway and kick me out Sad

DH reports that DD's temp has come down with calpol though she is still feeling sorry for herself (and no mummy hugs to help her Sad Sad ).

Can I urge you all to hold your DCs extra tight tonight. They are so, so precious.

It's weird talking to the other parents here about the high dose, they really don't understand because normal chemo is, in retrospect, not scary at all and rarely life-threatening. It's just unpleasant. They have no concept of how mind-numbingly terrifying it is and those I have spoken to today have just calmly shrugged it off. I guess it's that or the common desire here to forget that all our children here are so much more vulnerable to death.

He will get through this. He will get through this. He will get through this.

tholeon · 05/02/2013 19:42

Oh you poor thing of course you feel that way about your dd. Mothers should have super powers enabling us to be on two places at once, but sadly we don't, even in the hardest circumstances. Your DD will be ok and she knows mummy loves her. As of course does your wonderful sounding Joe, glad he is playing. X

NorksAreMessy · 05/02/2013 19:46

Love, light and gingers from Malvern.
Thinking soooooooo many good thoughts for you.

GlaikitFizzog · 05/02/2013 19:46

Trazzles, I'm really not sure what to say, but you said up thread our posts bring you and dh comfort. I am thinking of you all, I hope DDs fever passes quickly, sometimes these things come and go so fast we never know what causes them. I hope Joes next treatment passes without too many of those side effects. You are incredibly strong, your little boy is like his mummy. We are here for you, whether its just to let off steam, or you need us on a practical level, or you need us to make you laugh, we are here. Big splodges from west Lothian!

tholeon · 05/02/2013 19:48

Sorry cross post. Am saying it with you: he will get through it. And the person he needs most is right there with him, even if he doesn't like snuggles. It must feel lonely that the other ward parents don't understand what you are going through, I'm sorry.

Glad the calpol is helping dd, I am sure that she will be having lots of daddy hugs. X

Trazzletoes · 05/02/2013 19:48

Thank you all, as ever, for your prayers, good wishes and support. It means so much to us and I really can't believe that so many people from all walks of life, across the world, care about my little Joe-Joe and are willing him on to survive this bastard disease.

Badvoc · 05/02/2013 19:54

Thinking of you all and praying in Leicestershire.
Am sat next to ds2 (4) on the sofa and I simply cannot imagine what you are going through.
You must feel pulled in two wrt your dd.
I will give my dc an extra hug tonight and I will be holding you and joe in my heart x

hackneyzoo · 05/02/2013 19:56

I'm thinking of you and your lovely family Trazzle and sending you all lots of love and light. xxx

asleb · 05/02/2013 20:03

Hi Trazzles, I have also followed your threads from the start and often think of Joe and check on here to see how he is getting on. I'm so sorry your little boy is having to go through this. Lots of love to you all - stay strong xxx

MrsHuxtable · 05/02/2013 20:23

Another long time lurker here. Just wanted to wish you good luck for tomorrow and the weeks to come. I think of Joe a lot! X

dikkertjedap · 05/02/2013 20:41

Oh Trazzles, so sorry to hear about dd. It is so hard if you are with a very sick child and your other child also becomes ill. But dd is in safe hands with your DH although it is very understandable you would rather be with her as well as Joe.
It is very good news that your dd's fever has come down with Calpol.

How hard for you that none of the other parents knows much about high dose chemo and what is really involved. It is a pity that none of the other parents understands what Joe is facing and understands what position you are in, being able to talk about your fears, concerns etc. But even if there was, every child is different and nobody knows at this stage how it will affect Joe.

I suppose the only thing you can do is go with the flow, take each day as it comes, support and reassure Joe as much as possible, and to try to keep strong for Joe (even if you feel in pieces inside). Hopefully, Mumsnet and people in RL can support you and enable you to let of steam.

Does Joe have any idea about what is going to happen? Does he take it all in his stride or does he feel quite anxious?

I hope you all manage to get some rest tonight or at least that you have something to distract you.

Lots of strength and love.
x

TeaMakesItAllPossible · 05/02/2013 21:38

Sorry to see that DD is ill too. I really feel for you being pulled in so many directions. Your poor heart and soul.

Prayers, love and light coming to you all from Bath.