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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.

OP posts:
mmmmsleep · 20/02/2014 04:00

oh min I'm so sorry. hugs to you xxx

Dwinhofficoffi · 20/02/2014 07:03

Oh min- sending you love and hugs.

Original poster
Twunk · 20/02/2014 08:32

((((((Min))))))

OP posts:
Nocakeformeplease · 20/02/2014 08:44

Oh Min Sad - sending you both all the love in the world. I really hope the doctors are able to do something to make Will more comfortable today xxx

mmmmsleep so sorry to hear Ollie has to have another op. Sorry for not being in touch before, I have been thinking of you all x

Twunk I'm really glad things are settling down a bit, although I understand it will take a while for them to feel normal. How exciting that Alex will be going to school soon x

Trazzles I think your concern are completely natural. I feel exactly the same and infant was talking to my mum and sister tonight and have decided to find out if I can get some tests done on DD. They keep telling me she is at no greater risk than anyone else, but they can't possibly know that for sure without even looking at her. I just could never forgive myself if anything happened later and I could have done something about it x

Lovelychops I am so sorry you had to join us. How is your lovely DD coping with the treatment? It is such a shock and j inderstand si much what you say about it feeling like a life time ago. i felt/feel the same. i can barely remember life before all this began. I really hope you have plenty of real life support xx

unbuckle how is little I doing? x

Hello to anyone I've missed. Sorry for my absence. I can't explain it really. I'm just struggling a bit at the moment. We had D's 3 monthly scan last week and all was fine thank god, but they always unsettle me for a while before and after. I'm also feeling quite anxious as we approach the end of treatment - all being well we only have 6 weeks to go which is wonderful but terrifying. All I can see at the moment is years of torturous scans ahead. Anyway aside from that we're all fine. We've managed 3 weeks out of hospital woohoo! (madly touching wood!). It was D's 5th birthday yesterday. He is neutropenic so only had cousins over but he had a lovely day and is on good spirits at the moment.

minmooch · 20/02/2014 08:51

I'm not ready to lose my son but this disease taking him piece by piece is horrendous. Please give me strength to help him. I love him so much and can't bare to see him suffer and be so frightened.

KaFayOLay · 20/02/2014 09:24

((hugs)) min

kissmyheathenass · 20/02/2014 11:10

Minmooch, I hope you both had a peaceful night. Wishing you find all the strength in the world. xx

Original poster
Twunk · 20/02/2014 14:17

Min you can be strong and you will be. Am thinking of you, as always xx

OP posts:
unbuckle · 20/02/2014 14:57

((Min)), sending you love, hugs and i hope, strength. It's silly, but i have been thinking of Dory in Finding Nemo recently. "Just keep swimming, just keep swimming....". I think that's all we can do, keep pushing against the tide.

Nocake - i had his first follow up scan recently, and i was appallingly anxious and couldn't even listen to the results. I also see cancer everywhere, Silly, including in isaac's twin. They are non ID and as unalike as you can imagine.

(((())))) to all but especially our lovely minmooch.

trulymadlydeeply · 20/02/2014 15:07

Hugs to you all, but especially to Min. You are on my mind so much at the moment, lovely. I am helpless but am sending you strength, thoughts and love to help you get through this, as you will. Love to you and both your boys. Xxx

FreshorangeforDd · 20/02/2014 22:12

Praying for Minmooch and her precious Ds. (((((Min))))).

Original poster
Twunk · 20/02/2014 22:20

As I go to bed I am thinking of you and Will Min and as much as I can I am holding your hand. I hope tomorrow brings a better day xxx

OP posts:
Sillybillybob · 20/02/2014 22:33

Ah min it's all so so cruel. Holding your hand here too. And Will's. We are here for you. I wish I could do something to help - is there anything that can make any of this easier for you? A food shop? Some DVDs? Books?

Original poster
Twunk · 21/02/2014 11:24

Hello nocake! longtimenosee Smile

I completely understand where you are coming from. I have ups and downs but a lot of unexplained downs.

The house is a mess and nothing is in the right place. Normally I would be making plans to sort it all, but I just feel overwhelmed.

Though the worst of Alex's treatment is over it's not the end, we have 18 more months of medication then another 5 years of seeing if it comes back! Totally depressing.

Hang in there - I think your feelings are utterly normal. Not sure if that's a comfort or not....

Min thinking of you today xx

OP posts:
minmooch · 21/02/2014 17:47

After a very harrowing night in hospital we have moved to a hospice this afternoon where we can all be looked after properly. Will has been a little calmer since we got here but is panicking about dying in his sleep and is therefore completely over tired and over wrought. As am I. But i am glad we are here and not in hospital. The room is big and airy with patio doors on to a beautiful garden. I'm hoping he can sleep peacefully tonight.

Love to all. Sorry no help to others but have nothing left xxxx

pinkhousesarebest · 21/02/2014 18:11

Hoping for some peace tonight Min for you and your precious boy.

thornrose · 21/02/2014 18:21

minmooch you don't know me but I feel compelled to say something. Your posts are heart breaking. I really hope your darling son has a peaceful sleep without fear and that you can both find calm and peace tonight.

I just feel so terribly sad for you and your family x

lovelychops · 21/02/2014 18:30

Hello everyone. We have been home from hospital a few days. DD seems ok, up and down. We have MRD test next week, so got to go in for pre theatre bloods on her birthday.
Her hair had started falling out quite dramatically now. I know in the grand scheme of things it's not important, but as someone put it on here it's symbolic.
Does anyone have any advice on how to speak to DD about it? And should we shave it off? I'm not sure if that would upset her more?

Anyway, I know that pales into insignificance compared to what others are dealing with on here.
Sending big love to Min hope the hospice is as peaceful as it sounds.

barefootcook · 21/02/2014 18:41

Me too Minmooch. I think you are amazing. I haven't posted before but I wanted to now. I have had some experience of hospices and you will find the care you all need there. Everything will be attended to and you can just enjoy being together. I hope you and your two wonderful boys find peace now. XXX

MarnieMadden · 21/02/2014 19:02

minmooch I am so sorry to read your latest update. I hope you and your sons find some peace tonight, and that Will is no longer frightened. X

unbuckle · 21/02/2014 19:14

Min, thinking of you tonight and i hope will is able to sleep peacefully. This is so desperately cruel and unfair.

Lovely - my son is a bit younger than your daughter at 20months, so this might not be relevant. He hasn't at all noticed his hair ( he does notice his scar and hickman line), it hasn't completely fallen out and we didn't cut it. I think with smaller ones it is probably more about how you can handle it and what you find less upsetting. I don't think the kids generally care that much.

Obstacles · 21/02/2014 19:30

Wishing strength to minmooch, her ds and family. So glad you are in hospice and I hope you are all well looked after and as comfortable as you can be in the circumstances.

Millie2013 · 21/02/2014 20:04

So sorry to "intrude"'on this post, but Min, I just wanted to send you all the love and strength in the world. Please let the hospice staff look after you and your lovely boys and I hope that you can all get some peace and rest, during these horribly difficult times xx

Stinkyfeet · 21/02/2014 20:04

min I can't imagine how painful this is for you. I hope you are able to find some peace and calm at the hospice. Is your other son with you or is it just you and Will there?

Sending you love and strength for tonight and the days to come. xxx

TabithaMcKitten · 21/02/2014 20:35

Sending you love and strength and thinking of you as always min