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.

That's a very good point unbuckle, I would be worrying either way! Bloody exhausting isn't it! And I'm with you on being a crap everything else! I just don't have the energy for anything other than DS and DD.

min I hope DS has a bit more energy this term and that things are easier on you both. So sorry to hear about all the other heartbreak you be been through - life is very very unfair

shits I'm speechless about your 'h' behaviour. Well actually I'm not, but what I want to say is probably not printable. Poor diddums is feeling a bit neglected is he? And there was you having such a ball the last few years. It is spineless and unbelievably selfish - I am fuming for you . I'm glad DD is doing well though and that you managed to avoid staying in. Will keep everything crossed for MBA results

mmmmsleep glad the line appears to be in the right place and saw on FB that you've escaped - yay

Hope Alex is doing okay Twunk

Likewise hope Jo is okay Trazzles and over his cold

Well we're still on home leave....just. Had a call at 2pm today to say they were changing his ab's so he needed to be admitted for at least 7 days as these ones are 8 hourly. They then agreed to home leave if we bring him up at 10pm, 6am and then community nurse will do third dose at home during the afternoon. They are now saying they would prefer him to stay in, which in hindsight might be better as he's already asleep so would mean waking him to take him home, and then getting him up at 5.30 to be back here by 6. And with perfect timing, it's my first day at my new job tomorrow

bma not MBA obviously - stupid predictive text!

Nocake, that's what we had for 12 days. We asked to sleep at hosp and have the 4pm dose at home but it was a real problem leaving in the morning - we got delayed as they put the wrong label on the meds, because they left him off the ward round, to see the surgeons who never came at all, because they had to speak to the marsden, etc etc. But it could work if you can get them lined up to let you out as soon as the meds are given - I only managed it a couple of days.

Oh how annoying! Hope they manage something xx

Alex is on dex. He is miserable, stroppy and utterly obsessed with food.

Give me strength.

So, i started his second cycle of chemo today. I was at work - have had nearly 2 months off and don't want to use up any more leave in case something more important than chemo comes up. How exactly did it come to this?!

The thread has been quiet, i hope that is a good sign and bloods are clear, lines are working and term has started well.

X

Sorry to hear Alex is so miserable Twunk -it must be very hard to be patient all the time. How long is he on the dex for?

I know exactly what you mean unbuckle. Now I'm back at work I'm planning to remortgage so I can put some money aside in case D needs more treatment later. Quite depressing really having to prepare for the worse all the time . I hope I is feeling okay after his chemo.

Unfortunately no clear bloods here. The culture from Sunday came back positive today. They changed his abs mon so will do another culture tomorrow to see if the new ones have got rid of it. Bloody hope so. It means that we will be in for at least another 7 days from tomorrow.

At least they are letting him home during the day. Been quite lucky so far, the first day they let us go at 7am straight after meds. Today he had to wait and see the doctor but they see him first so we could get away.

I found my first day back at work very hard. I was looking forward to it but felt quite tearful all day. Had a better day today though, and I think I will enjoy working there. And it's my day off tomorrow .

Thinking of Trazzles, shits, minmooch, mmmmsleep and everyone else x

We're ok. J made it to nursery today for the first time in ages. Just for a bit but still...

Of course tonight DD has developed some immense vomit bug. Proper everywhere nastiness, we 're on the 3rd load of bedding already - well we were through 2 lots in 20 minutes... So now the dread sets in that J is brewing something...

nocake sorry your life is being so disrupted by admissions. I'm impressed by antibiotics as an out patient though! That almost never happens where we are!

unbuckle it's a strange old world, hey. And not a very pleasant one.

Oh dear, poor DD. I really hope that J avoids getting it too... Lovely to hear he made it to nursery today

We're lucky that we only live 5 mins away. They have been very accommodating about it this time as it means a community nurse coming out for an hour every day to do the afternoon dose. In theory we could even go home between the 10pm and 6am one, but it doesn't seem worth it. I'm very relieved though as D is full of energy and would be bored out his mind stuck in isolation for another week.

hello ladies. sorry I've gone quiet. I do check in and think of you all I just keep starting a post and ds starts crying. we decided we need to fundraise for the proton therapy as everyone that had been was quoting 15k plus of personal outlay. we only started on Monday and it's been amazing the response. it's also exhausting. I want to curl up in a corner and cry most days at the moment but have to keep going for ds dd and dh and if we don't raise money the stress will be worse. we really are so lucky with the response we've had. just tired....but then you all know what that feels like and I'm only a few months in.
and ds crying again so apologies no name calls but I am thinking of you all xx

back in again for our weekly neutropenic spike and weekend stay. ds was supposed to be football mascot tomorrow. poor little man was really looking forward to it :-(

Oh no I'm so sorry mmmmsleep.

I'm sure they can move him to another week? I hope so xxxx

we were let out for a 2 hr release! ds had a fab time...still sleeping off the excitement. the negotiations were totally worth seeing that smile on his face!!

Oh that's just splendid.

Mmmsleep

How are you and alex, twunk?

Mmmsleep

How are you and alex, twunk?

Going round the fecking bend with the night time waking, constant demand for food, and general misery (and that's just me ) but on the home straight. Dex starts tapering down Wednesday and the next week (23rd) we start long term maintenance. 26th sees 6 months since initial diagnosis.

How is Isaac? How are you doing?

Isaac's diagnosis was 6 months yesterday. He is gaining weight now and has started to walk again. He's still having very few side effects from the chemo.

I am knackered.

Forgot to say, I has started to walk again. I wish i had half his resilience!

Well done Isaac! Yes I wish I had Alex's resilience. He is amazing.

How much more do you have to the end of treatment unbuckle?

Alex has had his last full dose of steroid today. He's bloated, tired, constantly hungry, waking at night, achy, and miserable - needs constant hugs and is even back in with me at night.

My parents are here - which is amazing as I really was reaching the end of my rope!

He is 5 weeks into 34 weeks of chemo.

I spends most nights in with us too since his operation. I don't know about alex, but the wriggling, feed pump, 4am poos and vomiting don't make for a good night's sleep!

Hope a enjoys having his gps and you can get some head space

X

We just have the wriggling and 4am poos currently....oh and waking up, demanding biscuits. Alex hasn't needed an NGT though we got close at one point. He won't now hopefully in maintenance.

4 weeks down! 4 weeks you won't have to do again. It sounds trite but it is true. We have 18 months to go (!) but I am hoping they are not too arduous. It's good that it's oral chemo only, but it doesn't mean Alex can't get neutropenic or terribly unwell. His line comes out though, which is the source of a lot of worry as you know.

Big hugs to you unbuckle and the rest of us on this shitty journey xxx

Oh Praying don't be silly! And I cannot blame you. Our primary goal is survival but as a secondary unscathed is good. None of this is fair!

Your poor DD1. Are there charities that help with this?

Sorry DS!