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.

In for MRI tomorrow. Feeling scared :-( no results until Tuesday. The anxiety is horrendous.

Hugs to you, min, and to everyone in hosp and/ or waiting for results - trazzles, hazlinh, velvetbee and anyone else still in!

I'm in hospital! Routine, but here for 3-4 nights.

Min I am holding your hand in a virtual manner. Xx

I'm in hospital! Routine, but here for 3-4 nights.

Min I am holding your hand in a virtual manner. Xx

So interesting I posted it twice

. Hope you escape soon!

Happy birthday to your wonderful brave and inspiring son min

My thoughts are with you today x

Happy 18th birthday to your DS Min. I have everything crossed off the scan today xxx

for the scan

Happy birthday mini though probably quite big actually min!!!

Everything tightly crossed for the scan x

Thank you all.

Ha ha Trazzles he is 6ft 1" so not very mini at all!

Very little sleep last night - annoying as we don't get results until Tuesday I suppose it's the knowing that someone else knows what's happening, and knows if it's good/bad/worst news.

Hey ho - I will eat lots of cake today.

Love to everyone xxxx

De-lurking to say happy birthday to min's son. It was my grandad's birthday today and my friends little girl's too, so clearly a cool birthday to have.

Thinking of you as you wait for Tuesday. Hope you can enjoy some celebrations with your lovely adult baby boy.

Happy birthday min junior, hope the scan is over now and you can enjoy part of the day. X

Just wanted to wish your wonderful DS a happy birthday Min. It must have been an incredibly difficult day but I hope you both managed to enjoy some time together this evening. I hope the awful wait until Tues passes as quickly as poss xx

Quick update because my day has been so ridiculous... Joe 'a treatment makes him retain fluid. Last time he ended up with fluid round his lungs which caused all sorts of problems so they've been really hot on it this time...

He has been quite positive on his fluid balance (700ml in total to this morning - he's been much worse previously...) but blood showed some signs of dehydration. He's had a hugely full bladder but seemed to lose the ability to empty it. So he's had a catheter in.

2 LITRES of fluid out later... 2 LITRES!!!! Where the heck did that all come from?!

Needless to say, he's negative today...

2 litres?! From a little boy?! Wow!

I know!!!

On more frustrating news it looks like his stomach is stopping working again - proper green vomit last night and still 2 days if treatment left. I want to throw something and have a full on tantrum.

No not the green bile.... So unpleasant. 'Luckily' Isaac has graduated to being properly sick now, not too much though and hopefully still going home soon.

Oh poor little Joseph - no wonder you feel like screaming Trazzletoes.

I'm surprised you're not digging an escape tunnel unbuckle!

We're out if here at 4.30. Relieved!

Home! Hooray! He's clingy, but eating better than he has for months and is recovering his mischievous spirits fast.

Got very mixed news on histology. On the one hand, the smaller tumour turned out not to be cancer. On the other hand, the big one is 'blastemal'. The drs weren't keen to elucidate before we see our consultant next week but google tells me it means high risk as chemo was not effective.

Bastard disease.

Good to be out of sw17 though

Oh unbuckle hooray and oh bugger. Hope the Drs have some more positive news for you next week.

((((((Unbuckle))))))

It's a lot to take in.

Hope you escape soon!

Unbuckle good news and bad in one moment. I hope the Drs have some better news next week with regards treatment. Xxx

Trazzles hope Joe is doing better now xxxx

Twunk hope you are enjoying some peaceful time at home cxxx

Aaarrrggghhhh just want to cry . Had a wonderful night on Saturday with 35 friends and family for DS's birthday. I wanted to cry with relief that DS actually made it (looked like we were heading to hospital on Thursday night with a temperature) he loved it but looked so frail. By god he's been through so much these last two years.

Yesterday dragged by, I feel like I was watching the second hand go around the clock. So tired but finding it hard to sleep but if I get in the car my eyes just want to close.

I'm so worried about his kidneys. One chemo cycle sent him into very near renal failure. His kidneys have not fully recovered and are part if the reason why he cannot have any more harsh chemo. The last few weeks he is down to one, max if 2 wees a day and his wee is so orange coloured. The last bloods done his urea and creatinine levels weren't too bad and yet I know it's not right.

Results tomorrow and I'm dreading bad news. I'm also dreading inconclusive results as living with this unknowing is very hard. I only want good news.

I have started the day with a bagel, two brioche and now I am starting on the quality street - and it's not quite 9:15 am.

Tired, tired. I'm so bloody tired.

(((Min))). So glad he could celebratez Hoping against hope you get some good news, it is about time

I am eating chocolate mousse....