Children with Cancer

[Twunk]

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.

Still thinking of you and holding your hand this evening Min

mmmmsleep I am also holding yours (I have 2).

mmmmsleep hoping for good news for you today.

min I hope you have all managed some rest. Massive hugs.

mmmmsleep I second that - I hope you receive positive news.

Min much love xxx

Thank you all for your kind words. They are a little sliver of light in this very dark place.

I didn't sleep at all last night. Lay beside my boy on a reclining chair. I couldn't take my eyes off him in that horrible emergency hospital lighting that turns everything green. He slept fitfully.

He's frightened of going home and something happening to him. I'm frightened of taking him home for the same reason.

How do you prepare your child for dying? How do you prepare yourself?

I am aware that my posts may be extremely distressing so perhaps I should move to a different thread?

No Min I don't think you need to do that unless you want to extend beyond us "cancer" people to those who have faced this for perhaps other reasons. Death is a reality for us, the prospect of loss is the first thing that goes through our heads at diagnosis.

You must do what is right for you. But I will be here, holding your hand.

Of course you didn't sleep! Who would? But I am quite sure you will have lots of help over the next weeks and months from everyone involved in his care.

I wish I could give you a hug xxxx

Min I'm so sorry. Wish I had something helpful to say. Thinking of you xxx

I am so sorry to see the awful news about your son, I never post but aways read about him.

oh min. sending my love. of course you can carry on posting here for support. there is no right or wrong thing here just what's right for you which may vary from one moment to the next. sending my love x

Min I'm delurking to say that there is nothing I can say but you & W are in my thoughts.

How did it go today mmmmsleep?

Hope all is okay at the hospital lovelychops?

Hugs again Min

Min, keep posting here if it's helpful - we are here through good times and bad. You have been a tower of strength for Will.

You stay right here min if you want to. We are with you holding your hand every step of the way.

Can you make arrangements to sleep in the same room as W at home? Would he let you? When J relapsed we were talking about moving him in with us because I couldn't bear not to be with him overnight. But I appreciate a teenager might react differently to that than a 3 year old.

Is there anything at all we can do to help you? Please just say x

mmmmsleep hope it's all gone well today.

Yes yes to that - anything I can send, anybody we can get in touch with, anything anything at all.

sorry yes our news is that scan showed tumour hasn't grown but neither has chemo shrunk it. chat with oncologist monday about plans. evil cancer.

min de-lurking to say I am thinking of you at this most awful of times. X

Oh mmmmsleep I'm sorry for the distinctly "average" news. I suppose in the next few days you find out about travel etc? Let us know how that goes.

mmmmsleep I am sorry that the scan did not show shrinkage in the tumour. However stable is good in that it should not stop your plans to go to Florida for further treatment. Big hugs xxx

Trazzles I am sleeping on a mattress on the floor right next to Will. At first he said he was fine to sleep on his own but as I snuggled him into bed he asked me to sleep in his room. Hope all ok in the Trazzle household xxxx

We got home yesterday afternoon as Will felt brave enough to go home. He's very frightened if something happening to him away from hospital. I have spoken to my GP to arrange Macmillan nurses to come in so that he gets seen regularly by someone medical. I was worried that might frighten him more but it made him more relaxed.

It was just my two boys and I at home last night. We got fish & chips and watched a couple of episodes of Modern Family to give us a giggle. His left side of his face looks more paralysed now and eating and drinking is a messy affair - it's so undignifying for him. The cruelty of this disease is astounding.

It is growing in his brain stem and in the part of the brain that controls his breathing etc. the horror of all this is beyond what anyone should go through, let alone a child.

But at least I have the chance to tell my son how much he is loved. I will do everything in my power to help him keep his dignity to the end, and to try and keep him laughing even in these most terrible times.

Despite everything going on here my love and thoughts are with everyone on this thread, and all our children. Xxxxxxxx

Min your courage and determination is amazing. I'm thinking of you and your brave son. Xxx

Glad you are home min. You are doing an amazing job in unbearable circumstances. Will must be so frightened. How is his brother?

Xxx

So glad you're home and that Will feels comfortable with that.

You are just amazing - a fantastic mum. Fwiw I think your priorities for your son are completely right. I wish you all the strength you need xx

minmooch. I'm thinking of you so much. hope you have many more family fish and chip/tv nights. it really is the simple things that bring our spirits up. those little times that we used to take for granted. you're doing a wonderful job. xxx

minmooch I'm glad your home and Will feels a little happier with the Macmillan nurses coming in. I'm glad too that you're sleeping next to your boy. I stayed with my mum one night in the early days of D's diagnosis and I slept in her room and I was 37. You're never too old to be comforted by your mum.

I know this doesn't ease the pain at all but I think you are simply amazing in an absolutely unbearable situation. And I know its because your his mum and you have no choice, but I still think you are incredible. I agree with Twunk that your priorities for Will are spot on. Your love for him shines through in every post, I have not a single doubt that both your sons know how much you love them and that there is nothing you wouldn't do for them.

No child should ever go through this, and no parent should have to watch their child go through it . I really hope you have good RL support, both friends and professional. If there is anything, anything we can do, for you or Will, please say the word xx

thinking of you min xxxx

min, just happened on this. I was on these threads so briefly. As many know, my daughter did not survive her cancer (AML). Just to say, am so thinking of you and your darling son. ((((()))))