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.

Twunk crossed post. Hope your stay today is short and uneventful xxx

Yes, the guilt. We were meant to be starting chemo today but isaac is too vomity. They want to admit him until he hasn't vomited for 48 hours.

It is my daughters' birthday on Wednesday.

Fingers crossed he will keep his meds down and they will change their minds.

Will keep fingers crossed for I Unbuckle. Sorry, thought I'd already posted a message about this but good news about no rt and very pleased to read that old data out of date now and that the protocol gives I an excellent chance

Minmooch I'm glad DS is looking and feeling a bit better. Hopefully once the sickness is under control his appetite might pick up a bit. Hope you had a nice day with both your boys x

Twunk I forgot how close in age your boys are, they must miss each other a lot . Hope you're not in hospital too long.

mmmmsleep hope your little DS is coping okay with all the tests etc and that its still all on for chemo on Friday.

Hope everyone is doing okay x

twunk I hope you have a quick stay in hospital and your ds does well. x
minmooch I do hope the new anti sickness tabs do the trick. I was 14 when my mum and brother had cancer. wasn't much fun but certainly made me stronger and gave me a sense that I can get through anything (which is coming in handy!). it also helped confirm my choice of career. hope that helps re your ds1. poor you though that must have been so hard to be in hospital for such a long time. I hope both your ds are ok today xx

we have bone scan today and 4 operations under 1 ga Thursday then straight to chemo Fri. busy week. steroids have kicked in and ds is much more himself. not much sleep at night but I'll trade that for a happier little boy any day!

That's one hell of a week mmmmsleep, I wish you much strength for it xx

Alex is poorly but not badly so - has croup. Woke up barking at 6am. Oh well at least we are here! His temperature was up but has settled down now. They're going ahead with this week's treatment but the lumbar puncture is delayed until tomorrow.

Unbuckle I am pleased to hear that I's prognosis is much better then you feared.

Hugs to Nocake, Min, Stinky et al xx

so things just got more complicated. ..ds has to go to usa for part of his treatment for 3 months. Didn't see that coming!

twunk I hope alex gets better soon. ds had croup just before his last operation not fun! hugs for your hospital stay x

Wow! That must have come out of nowhere. 3 months is a long time to be away from home.

Wow! That must be a shock. Whereabouts in America will he be treated?

florida. hopefully we can swing getting dd and dh allowed to come too as she's too little to leave for 3 months. total spanner in the works re hiring a live in mothers help as we'd never get a visa for usa for her but not quite sure how I'll do it when dh goes back to work and need to do both dc alone including hospital trips/ inpatient chemo etc :-(

Wow, is it proton beam therapy he needs? That must be a lot to get your head around in these early days. Hopefully you've got a good team around you guiding you through it all. It's great that they are making the best treatment available even though it means you have to travel to get it.

Glad to hear things are stable min, hope ds is feeling ok.

Ds1 has a scan on Dec 23rd with result on 27th - hopefully Christmas will take our minds off the waiting .

Hope all the children are well enough to continue their treatment.

Hi everyone- my son was diagnosed at birth with Stage 4s high risk neuroblastoma last November. He was extremely ill, in intensive care for 5 weeks and has endured the most horrendous treatment, the same as Trazzletoe's Joe. Right now I'm typing this message on my phone on the parent bed in the ward on our last week as inpatients. He's had a fantastic response and is in complete remission. We'll have a nervous time when we repeat the scans next month, but it's amazing how far we've come. He turned one last week, and is developing beautifully, if a little on the small side (understandably!)

He has had an NG tube since birth though- feeding completely messed up. Anyone on here have any experience with NG tube dependency?

Lovely to see you again GE. Joe isn't eating still, maybe the odd baked bean here and there. But there is a mum I'm friends with whose DS is 2 I think and just had 3 month scans clear. He doesn't eat at all because of his tube to some extent. I think they're just waiting it out and encouraging him to try things in his mouth but I can see if she wouldn't mind having a chat with you if you want?

Really happy he's in remission too - desperately hoping to hear those words for ourselves in a few weeks though I think even if J has not relapsed, there will still be a pesky bit left in his leg.

mmmmsleep what a week for you. I hope the bone scan went ok and the next few procedures go smoothly. I know of two families who have been sent to Florida for their treatment. Both times they each went as a family but Dad and other child came home after a couple of weeks. That maybe difficult for you with a much younger child. I hope you can find a way of getting some help whilst you are out there. Xxx

Twunk hope Alex is ok and they are treating his croup. As if our children don't have enough to cope with xxxx

Trazzles I think I caught up on your other thread that Joe managed to get to the party - that's wonderful. The end of treatment nearly here - I bet you can't believe it. I so hope you get to hear those magic words 'complete remission' very soon. Hope you are all ok xxxx

Stinky the timings for scans always seem pretty shitty to me. I hope that you can hold it together and enjoy Christmas in between scan and results. Xxx

GE so glad to hear that your DS has responded so well to treatment. It's no wonder that he is a little on the small side after what he has been through. My DS had an ng tube followed by PEG (straight into his stomach). That has been out for a long time but at times I wish it was still there as he has no appetite and is losing so much weight. Hope you are able to get him eating soon - the paed dietician should be able to advise you xxxx

Hope you are ok nocake xxxx

Yes Traz- would love to hear from her.

So does Joe get most of his calories from milk then?

Stinky that is indeed terrible timing for a scan! I have everything crossed for you.

GE that's brilliant DS is doing so well!

mmmmsleep I hope you manage to work out the logistics - I can see it's quite a spanner in the works but great he's getting the best treatment.

We're ok - lumbar puncture happened today as Alex is much better. Doctor was rubbish though and it took ages. Really stressful though thankfully Alex has no memory of it.

Hopefully out tomorrow as it's Sinterklaas and the boys get a sack of presents :-)

Love to trazzles, Nocake, min and anyone else xx

Hazlinh am still thinking of you and DD xx

Cool GE I'll ask if I can pass on her email. Yes, Joe is fully tube fed. I think the last "proper" meal he are was in January. He will occasionally manage some roast chicken, or a couple of slices of apple. This week is the first week he has actually asked for "tea" every day. He'll just eat a mouthful of banana or some baked beans. We have the advantage though that a) he knows what it is like to eat and b) we can reason with him to some extent.

At the moment though he just doesn't like the sensation of having food in his mouth. We've been told just to take it slowly and constant encouragement for trying anything even if it comes straight out.

Twunk I really hope DS gets out tomorrow. I get irrationally greatly upset at the moment at Joe missing out on anything. I have proper toddler tantrums! I just hate him having to have illness carry on impacting on his life. I feel like he really missed out last Christmas as he was in the midst of chemo (it finished on Christmas Eve) and in and out of hospital with febrile neutropenia. He's very stoic about it all but I feel he needs to experience everything, to the point where I become a total crazy lady.

I don't know about you Traz, but I'm well and truly sick of the tube feeding. Feel like I'm force feeding him all the time. Plus everyone has an opinion on it, and what you should be doing to get him off it.

Good luck with the operations today mmmmsleep - I hope it's not too arduous.

Trazzle funnily enough we finish this section of treatment on Christmas Eve! My husband doesn't understand but he doesn't have the same sense of "occasion" as me, and I also hate the idea of missing out on events because of this fecking illness. It's just so damn unfair on all of us.

just to say thanks for the support. Can't do name calls as every time I go to write a post a different nurse or dr comes in to consent or poke our little man so I give up! i am thinking of you all though and sending best wishes for all the feeding problems, chemo and general rubbishness that you're all facing x

Twunk we found last year that Christmas Day was the best day J had had in weeks because it was the end of treatment. I hope you find the same.

This year will be a different proposition. Hospital called to say one of J's scans (scheduled for next week) has been postponed by a week. It's his MIBG scan which is the biggie for finding out what is and isn't there.

Our results appointment is booked.

For 23rd December.

So we get either: it's no worse than it was or, amazingly, NED.

Or: your DS has relapsed and this will almost certainly be his last Christmas - merry Christmas!!!

I feel extremely sick.

Trazzles big big hugs. 23 Dec - fuck :-( I am so hoping for you that you get good news. Xxx

mmmmsleep hope everything has gone ok today xxxx

I'm struggling big time. This fucking disease has taken my child's life before it has taken him. I don't know how much more any of us can take. It's unbearable. And I'm not sure we have done the right thing putting him through all this but what fucking choice did we have

Min- without knowing the ins and outs of what's going on with your dc I definitely empathise with how you're feeling and send hugs. There's just no way around it, having a child with cancer is unspeakably difficult and unfair. I think it's really hard at this time of year when everyone is scurrying around getting stressed about getting ready for Xmas (get a grip!) or out having a lovely time at parties with their healthy children.

I don't even want to be Pollyanna here and try and find some positives. I think we all have down days and sometimes you just need to let yourself feel sad, frustrated or whatever it is.

oh minmooch massive hugs to you.

trazzle that's rubbish scan timing I wish you lots of good news for it.

ds 4 ops went well today. one new problem found and dealt with which meant we have to stay overnight in first hospital before moving to another early am for another test then chemo pm. ds is happily playing on the ipad having slept most of the day....shattered after 5am start and I have great hopes for sleep as we have a side room but hourly obs and late steroid dose for ds suggests otherwise..