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.

Clearly the gods hate me - we had a 2.5 hour power cut!

Guess where we are ?

I suppose I should be grateful that he managed to wake up in his own bed to open his presents from Santa. He's been up and down all day though and I knew we would probably end up here. He's been so brave about it bless him, but he's gutted to have to come in and leave his sister and cousin at home . I will just have to make it up to him.

Glad Issac is not spiking a temp - will keep my fingers crossed it stays that way.

Good news your home Twunk but what a pain about the power cut

I hope Santa brought Joe lots of lovely presents Trazzles. Bless him thinking he wouldn't be getting any. Over excited, knackered and a little under the weather describes D perfectly too! Such a shame after looking forward to Christmas for so long.

Hope you are your boys had a nice day min. I especially hope DS was feeling well enough to enjoy it.

mmmmsleep - hope you all okay and had a nice day too.

Nocake. We're at home still , lots of snot but no temp. We already knew he had rsv so perhaps this is it?

Hope you are all home and comfortable soon. Am just off with my girls to see the nutcracker.

Xxx

nocake... I've just said hi to your da and dh!! saw your post so went down the corridor.we were in for bloods but line not working so have to nip to Marsden for a spot of line magic. hoping it works as chemo tomorrow and will be stuck if need new line. so sorry ds is back in that is gutting.

sorry to all those who are in or walking the tightrope of 37.9....

we've had lots of fun this week with floods from above in our house. had to evacuate and damn lucky we did as bedroom ceiling flooded and came down over dd's cot. felt like a remake of nativity play as I clutched babies in blankets finding room at the inn. as I said to our builder the one thing all this has given us is lots of perspective so as we're all alive we'll cope. I do admit to having a bit of a sob in the car though. seems safe now but nervous about storms tonight!

unbuckle I hope ds is better soon. certainly sounds like rsv is showing itself. hope it clears asap.

wishing you all a merry Christmas xxxx

That sounds dramatic mmmmsleep! my hometown is flooded out at the moment - we've been watching it on the news.

Alex is still not 100% though much better than he was. He kept me awake last night again. Just had him in with me as he wakes up yelling several times a night.

How's it going in hospital nocake? Sorry to hear you're in there again.

Love to all x

Hi all

Hope you had a good evening unbuckle

Sorry I missed you mmmsleep. Hope you haven't had anymore problems at home and that chemo went okay today.

Hope you both get a better nights sleep tonight Twunk

Hope min and trazzles that you're both okay?

Looks like we're going to be until at least Sunday. We should get the blood cultures back tomorrow but Daniel spiked another temp of 38.3 yesterday night so the 48 hours started again regardless of what the cultures show. He will probably need a platelet transfusion tomorrow too.

He's okay but seems a bit under the weather and is not eating very well. He's had dominos pizza the last two evening - it's the only thing bar a but if cereal and the odd fruit pot that he will eat! I'm just gutted for him - my sister and niece are at home and he s desperate to get home to be with them and his sister .

A lot of hope in that post

oh no nocake. damn those spikes :-( I'm now craving dominoes though if that makes you feel any better and enjoying the joys of trying to sleep on the ward... mmmm.

hope everyone else ok?

twunk... my husband has forgotten what I look like. I seem to share a bed with ds more than I do him. It's so hard when they wake up screaming in the night. cuddles have far fewer side effects than oramorph increases anyway. I hope alex and you have a more restful night tonight x

Well we're still here. D is fine in himself, in fact seems happier than he has in a while - he hasn't spiked a temp since Boxing Day, but we are still waiting on a negative blood culture. The results were supposed to be back today but for some reason they aren't going to be back until tomorrow.

My sister and family are still at mine but are probably going home New Year's Day so just desperately hoping he gets out tomorrow so we can spend their last night all together.

Hope you are all okay?

Oh FFS I hope they come back negative today! How incredibly boring for you.

We're in for the day, starting protocol 4 - the last crappy bit before we are onto long term maintenance (which lasts 18 months). Going to theatre soon for a bone marrow puncture and lumbar puncture, then having 2 lots of chemo. We start dexamethasone today too.

Feels like the home straight - a bit.

Happy New Year everyone. Here's to a kind 2014.

Great to hear you and Alex of course are nearly through the hardest part and you can be optimistic about 2014, twunk.

I'm finding it hard - 2013 was shit, 2014 can only be shitter. Isaac has 34 weeks of high intensity chemo of which 12 days fall in to 2013. I am tired of coping. In fact, i am not coping any more. He is only a baby, he can't even walk any more; he's never talked. I never got used to having him even before he was ill. What kind of life is it that i've given him?

Thinking of you all as always

X

Oh (((((unbuckle)))))) we are told it's good when they are young because they don't remember - trouble is we remember too well.

If it gives any comfort we are at the end of 5 months of intensive chemo and it went far faster than I expected. We will have 6 months (26 weeks so a bit shorter than you) in total of the heavy stuff. Looking back at the first 2 months it was really hard, but at the time we just plodded on.

You will get through this - largely because you have no choice, but there are good days amongst the ordinary and the bad. xxxxx

Big hugs unbuckle. Sometimes it just seems unbearable doesn't it. And so impossibly unfair. I know 34 weeks of treatment seems so daunting, but I've also been surprised how quickly Daniel's treatment has gone. I also find it helps sometimes just to remember how far we have all already come. You've already got the surgery, a huge step out the way already.

I feel quite mixed about the change of year. I'm very glad to see the back of 2013 of course, but nervous also about what 2014 has in store for us. I keep thinking back to this time last year when we were in blissful ignorance of what is to come .

I think a kind 2014 is a lovely way to describe it twunk and I wish it for all if us x

I'm sorry I've been absent. I've been burying my head. I have found Christmas and new year very hard. My DS was diagnosed just before Xmas 2011 so this is the third Xmas and NY since then. Too much has happened since then. I've even got divorced and moved house in that time - haven't been able to process that side of things truthfully. Still living under the big black cancer cloud and not knowing what is going to happen.

Unbuckle your post made me cry. It's unbearable what out children have to go through and unbearable for us as parents to watch. Xxxx

Nocake I hope you made it home in time to spend some time with your sister xxx

Twunk hope it all went ok today xxx

Wishing everyone some peaceful days xxxxx

Only just seen this thread. - heartbreaking. Your strength is amazing. Wishing you all the very best for 2014!

minmooch....well done for getting through the "holiday period" and all you have faced in the last few years. I understand nocake's sentiments. ds woke up at 23.58. I brought him downstairs to watch fireworks together but just got so upset that this could be his last new years. bloody cancer :-( I know we're not supposed to think like that but it is so hard to feel positive about the year of chemo and other treatments ahead.
unbuckle massive hugs for you. I'm not far away if you need a real life hug anytime. are you inpatients at moment? We're back on Thursday/fri for more so may see you if in.

hugs to all of you ladies. I wish we didn't need to have this thread at all but thank you for the support you give. may you all have a 2014 that is full of precious positive times with your families xxx

Sat in bed, listening to isaac breathing and the sound of his feed pump. Back to work tomorrow - anyone else?

No I don't work. I did have my own mini business making children's clothes(currently on hold). I stopped office work when we moved to NL, and though I could start again I've not had that urge to be in an office environment again.

Though with Alex on dex I might change my mind on that one...

I'm back to work on Monday after 6 months off. Its a new job, i was due to start there in June but then Daniel was diagnosed.... They have very kindly got a temp in to keep the job open for me which is amazing really as she

Sorry posted too soon ....

(my new employer) had only met me twice at interview so had no loyalty to me. Feel quite mixed about going back to work....

I can imagine, nocake. I am feeling pretty dubious about it myself and i have worked for 4 out of 6 months of isaac's treatment and have been there 13 years! But it is an amazing sign of how well Daniel is doing and how far he has come - and also the kindness of strangers.

I'm back at work this afternoon - still very part time as Joe is a long way off being well enough for even a half day in childcare... I'm also extremely lucky to have a very understanding employer.

Sorry so many of you are in again . We've somehow managed to stay home all Christmas but Joe has had a horrible cold so has been getting fevers all the time. He finally seems to be over the worst of it now.

unbuckle don't beat yourself up. You have no choice but to have given him this life. You didn't cause his cancer - you're doing your best to give him a long and healthy life. It may take a long time to get him on his feet again and may take a long time for him to talk. But it will happen.

min wish I could give you a massive hug.

Here's to 2014 giving everyone the best possible outcomes.

Huge hugs all round.

I hope no one minds me hanging around - just say if you do - j still has his line in and with an 80% chance of relapse I'm hardly confident that this is the end!

On my way in now, having just booked in the next cycle of chemo. Good luck at work today trazzle, i find it helps keep me balanced although i find the cancer research posters on the train and cancer charity fundraisers in the lobby of my building a bit wearing! Of course you can stick around with us!

Good luck everyone with work etc today xx