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Original poster

Children with Cancer

833 replies

Twunk · 03/09/2013 18:04

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

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mmmmsleep · 21/12/2013 00:05

yay glad you're out nocake :-) xx

Trazzletoes · 21/12/2013 06:46

My post is about to be extremely Trazzle-centric: apologies...

J's consultant called last night - no evidence of cancer on his scans!!!!! I know it can change in a heartbeat but right now, he's ok. We've waited so long for this day. All the other families we know have had NED much much earlier in the treatment and we were so scared but, for the moment, it's gone. Wine Cake

Trumpton · 21/12/2013 07:03

Oh Trazzletoes I have followed Joe's journey and your wonderful writing.
There are no words to describe the joy in my heart for you. The best ever gift.

Nocakeformeplease · 21/12/2013 07:52

Oh Trazzles, that is absolutely wonderful news Smile Smile Smile

This has made my day. Much love to all the Trazzles, hope you have the best Christmas ever xxx

mmmmsleep · 21/12/2013 13:46

congratulations trazzles that's wonderful news! what a fab Christmas present!!! x

minmooch · 21/12/2013 17:54

Oh Trazzles what wonderful, wonderful news! I have shed some happy tears for you and your whole family. That truly is wonderful news and hopefully you can all celebrate Christmas properly xxxxxxxx

Original poster
Twunk · 21/12/2013 22:58

SmileGrinSmileGrinSmileGrinSmileGrinSmileGrinSmileGrinSmileGrinSmileGrinSmileGrinSmileGrinSmileGrin

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trulymadlydeeply · 22/12/2013 04:34

Trazzletoes ... There are no words. Just the best of gifts. So very happy for you.

Love to all of you on this thread.

Xxxxxxxxxx

unbuckle · 22/12/2013 13:14

Tried to post earlier but it disappeared. Wonderful news and a perfect gift. SmileSmileSmileSmileSmile

Andro · 22/12/2013 21:16

Trazzletoes - what a lovely Christmas present for you and your family!

Original poster
Twunk · 23/12/2013 16:48

Guess where we are?

24 hours only I hope - Alex has a very painful mouth and is a bit out of sorts so he's getting a drip and some intravenous paracetamol. Haven't wrapped a single present as mum and dad had just arrived with most of them!

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unbuckle · 23/12/2013 21:00

noooo!

I am sure the staff will be as keen for you to go home as you are, almost.

Original poster
Twunk · 23/12/2013 21:36

I dunno Unbuckle we are so fabulous I cannot imagine they would let us go unless they had to Wink

Just given him tramadol hoping that does the trick with the pain. He wakes up crying out it's horrid Sad

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Trazzletoes · 24/12/2013 07:28

Joe's just got a fever :( someone please cheer me up by telling me how much better Christmas will be in hospital rather than at home.

unbuckle · 24/12/2013 08:38

Oh trazzles, how disappointing. Fingers crossed the fever has gone by now, do you have the one hour rule?

Isaac is howling downstairs, will be too scared to touch his forehead today.

Trazzletoes · 24/12/2013 09:20

No 1 hour rule here. If he gets a temp above 38 it's straight in for cultures etc and antibiotics. I'm desperately trying not to get upset. I know it's 1 day. I know it's 1 day that can be postponed. But I don't want to spend Christmas in hospital.

Original poster
Twunk · 24/12/2013 12:36

Trazzletoes I will be there with you in spirit - Alex has mucositis and looks like we will be there tomorrow, though there's a small chance we can go home in the afternoon.

Everyone will make the day special Trazzle - sending you much love xxxx

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minmooch · 24/12/2013 14:24

Twunk and Trazzles I hope you both manage to get home for Christmas but if you don't then it will be made very special, especially on the children's ward.

When we were in with Will there were so many visitors, celebrities popping in. The one all the mum's liked was the on call firemen. Nice bit of eye candy for us!

Twunk I hope Alex's mucositus clears up quickly. My Will was very, very poorly with it. Xxxx

Wishing everyone a peaceful Christmas. Let's hope we can all find a little joy during the day xxxxxxx

Original poster
Twunk · 24/12/2013 15:30

Doc is saying it isn't too severe and he's seen much worse - I hope that's true (though my god the poor children who have it much worse - poor Will).

I've just finished wrapping the presents and about to head back to the hospital (DH is there at the moment). DS1 is hyper. I so wish we were all together, but it is what it is.

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Nocakeformeplease · 24/12/2013 21:50

Oh Twunk and Trazzles, so sorry to hear you're in for Christmas. Hope you still manage to enjoy the day.

D's temp has gone up to 37.7 - he's normally around 36 so high for him. Have a horrible feeling we may be in soon too Sad

Trazzletoes · 24/12/2013 22:53

Oh no nocake the waiting to tip over 38 is awful Sad

Twunk so sorry you are in.

By some miracle, Joe wasn't admitted! That never happens... We were sent home with a suspected virus. He's on regular paracetamol but 6 hours after a dose his temp is still low 36s so might skip the dose in the morning and see where that leaves us. Obviously waiting for any cultures to grow but for the moment he's tucked up tight in bed, scared that Santa might not come because he threw a massive paddy this afternoon Sad. I've tried to explain that he's been such a good boy all year and Santa doesn't just look at one day... Hopefully next year there will be excitement. Today he just seems to be over-excited, knackered and a little under the weather.

Trazzletoes · 24/12/2013 22:56

Twunk have I told you how bad Joe's got? He couldn't speak because of a giant scab that totally filled the roof of his mouth and then his mouth sealed shut apart from a tiny hole to breathe through

I can talk about it flippantly now...

Hope DS is getting through it ok. It's a nasty nasty nasty complication.

Original poster
Twunk · 25/12/2013 08:31

Oh that was bad! Shock Poor joe.

Alex is much better than that. He can talk and drink, just not eat really.

Good news is that it's improving. Fingers crossed we can go home.

MERRY CHRISTMAS!

I'm sorry we all need to post on this thread, but not sorry I've got to know you this year. If that makes sense. Big hugs to you and yours everyone xxx

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unbuckle · 25/12/2013 10:32

Merry Christmas to everyone. We're at home - Isaac had a bit of a vomit this morning and is snotty, but is holding back temperature-wise. Glad you are at home trazzle, hope you are released later twunk, and hope the temp stays below the magic 38, nocake. Thinking of you all, and hazlinh, stinkyfeet, mmmmsleep, minmooch, velvetbee, p4b and anyone else! Xxxx

Original poster
Twunk · 25/12/2013 15:13

We're home. Having Christmas dinner in a minute. Hope you are all home too.

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