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.

Hi I'm here and just catching up with the thread. Huge hugs all round.

Green bile - I won't be sorry to never see that again! Joe gets it every month at the moment, for a fortnight at a time... I spend the whole time terrified his gut is stopping again... And then it scrapes through. And then a fortnight later here we go again...

On Monday his (hopefully please God) last fortnight stint in hospital begins. It will be 4 weeks left of initial treatment. I feel elated and also sick with terror. After that comes scans. He hasn't had any since May. He's never been NED. What if it's still there? What if it's come back? We know now that we're never safe.

I looked at a school for him today. Very odd feeling and again, mixed emotions, and having to ask questions about his care and acknowledge in front of strangers what difficulties he has and what's "wrong" with him. Spoke to his Macmillan nurse today though and he's going to speak to Joe's nursery about getting him statemented.

I keep remembering how close we are to the end. And then I remember it may not be the end. And the I wonder how I can live another day like this. It is a special kind of torture, indeed.

min I wish I could do something to help. Is there anything I can do?

Great news about the kidney and glad the initial OP went well.

I'm so tired.

Trazzles good luck for the hopefully last 4 weeks of treatment and 2 week hospital stint. I understand the elation and terror all in one go. Sometimes saying out loud to someone new how ill your child is is very difficult. Well done for looking at schools. Xxxx

As for us my DS has had two whole days of no vomitting! And no anti sickness meds! Hopefully he can put on a little weight if he can keep stuff in and down.

My boys have been with their Dad this weekend and since Friday I have only spoken to the cashier at Sainbury's this afternoon. I ignored all phone calls and only replied to text messages. I ate my body weight in chocolate but did offset this with two long walks with the dog and a couple of hours on my allotment.

Just feel like I am passing time until scan and results. Can't put my mind to anything.

Love to all xxxxx

Aaaaarrrrrgggghhhhhhhhh fucking bastard cancer. I hate what it is doing to my child, all our children, our families. I want to do it for my child, not watch him suffer. I'm not sure I would be as brave but I'd suffer anything for him to just be having a normal life.

An MRI scan on your 18th birthday - it's so not fucking fair. And yet he seems to be ok with it - let's just get it over with mum, it's ok. I want to weep with admiration for him, weep with sadness for all that he has lost, weep with fear of the unknown future.

I feel like I am having to control every breath, in and out, concentrate on that otherwise the anxiety takes over.

On taking him home after school yesterday his head dropped forward - I panic inwardly - has he had a stroke, has he died just there in front of me, has he just fallen asleep? It's not normal to think like that I know but my son has a brain tumour and I don't know what will happen.

If you met me though you wouldn't know that there is this anxiety, panic going on. I'm all calm and jolly on the outside, I do my hair and make up, look presentable, pass the time if day with anyone. All the while there is this voice inside me, crying, screaming. I have gone very grey over the last two years and for every lb that my son has lost I have gained (plus some).

Rant and self pitying over. Mask on, paint a smile and get on with the day.

Minmooch it's okay. You're allowed to rant. You're allowed to do what the fuck you want. It's a fucking bastard disease that has put your family through so much. It's okay to feel all these things. It's very frightening.

Big, fat (but of course un-MN) hug ((((()))))

Rant away, minmooch, cancer is totally shit, and you must be sick of putting your game face on for everyone else's benefit. More hugs coming your way.

Today Isaac had a sixth of his body weight removed. His abdomen feels amazing.

Wow Unbuckle that is, actually I'm not sure what the right words are. I presume second operation is done. It's frightening to think of it as a 1/6th of his body weight but that's great about his abdomen. Much love coming your way xxxx

Oh bless him! I hope he's doing OK and you're holding up. xxx

Hi everyone. D had an abdomen ultrasound and chest x-ray today and thank god they were both clear . I can't put into words how relieved I am - I think I almost lost the plot in the run up to the scans. Still a long way to go and another scan in 3 months, but I am very grateful that so far so good.....

Unbuckle - it's incredible when you think of it like that. I'm so glad both ops are out the way now, and I hope I is comfortable.

Oh Minmooch - it's just so utterly unfair. I feel so useless, I just wish there was something, anything I could do. It's just beyond belief what you and your DS are having to endure. Big hugs, and much love to you both. I am hoping me praying desperately for good news next week.

Twunk - a special kind of torture sums it up perfectly. I have everything crossed for you too for Monday. I'm glad DH liked his camera.

Trazzles - so sorry about your night from hell the other night. I hope things have calmed down now and that you've managed to stay at home. I can only begin to imagine the mix of emotions as you get near the end of treatment. I'm praying for an uneventful run in for Joe.

Wow that is amazing news, nocake! With the good histology he had, let's hope it stays like that.

Thank you all for your thoughts and wishes. Isaac is still asleep but i can't get over how his tummy feels. He's off oxygen, back on the ward and i am having a night at home with my other kids. It sounds awful, but it has made me realise how much easier it is without caring for someone with cancer - no dinner to fortify, no screaming at the sight of food, no meds to administer, no hickman line to hold in the bath, no tears at bedtime. My older kids have told me that all they want for their birthdays is for isaac not to have cancer.

I hope your ds comes through his horribly-timed scan as well as possible, minmooch. It is time for us all to have good news!

Yippee to the scan nocake. I am becoming increasingly agitated waiting for Monday, though a touch of PMT doesn't help! I am trying to stay positive, it's hard though isn't it? And I do get a bit fed up of (well meaning and generally kind) people saying you must stay positive - the thing is I know it's a pointless thing I would say. But the implication is that somehow my attitude to the cancer will strongly affect the outcome.

It's a whole bunch of conflicting emotions. It's a confusing world we all inhabit at the moment.

Minmooch I have everything crossed for next week. Fingers, toes, legs, and eyes xx

We have a shiny new car! It's lovely (and blue so the boys are pleased). Also I've been "awarded" 5 hours of homecare for Alex each week. The woman who applied for me said I might get an hour or 2. Tbh I'm pleased to get anything! It will help with Alex's Dutch too. We will also get homeschooling for next term too.

I actually went out last night! Not a mad night out just a committee meeting type thing. It felt bizarre leaving the house on my own

Hope everyone is doing okay this weekend.

We have the start of Sinterklaas. It's the festival the modern Christmas is based on. Saint Nicholas (Sint Niklaas - hence sinterklaas) arrives in a steamboat from Spain with all his "helpers" called (I shit you not) Black Petes (Zwarte Pieten).

He hangs around for 2 and a half week then leaves on 5 December, having deposited a sack of presents by the front door for the children.

There's been more discussion than usual about the black Petes this year.

Can't so links on my phone but google "Zwarte Pieten" and you will see....

I feel sick just thinking about it so I am trying not to.

Keeping everything crossed for scans and mascots. Thinking of hazlinh too, hope things are going ok.

I is doing well in terms of kidney function but keeps being sick and is so skinny it breaks my heart.

Oh bless him unbuckle that must be hard to see. I hope he's feeling much better soon xx

Sorry, ignore above I forgot to name change back.

It's awful isn't it Twunk - I nearly want to pieces in the run up to D's scan. I literally couldn't find the energy or motivation to do anything last week, I was I was on the verge of tears the whole time.

Still thinking of you Min

Oh Unbuckle - poor little thing, I hope the sickness stops soon. D was sooo skinny when he got out of hospital too.

Hope everyone else is doing okay this week xx

My fingers are tightly crossed for all upcoming scans too.

Twunk does he have an NG tube? Joe went from 17 to 14kg when he was first diagnosed. Even now looking back at the photos I feel ill seeing how thin he was. It's so hard to see your child so thin on top of everything else.

We 're due in tomorrow for hopefully the last week in hospital... Except I called today and there's no beds . There's a lot of poorly children around. Bit of a novel situation for us as neuroblastoma usually gets shoved to the front of the queue and you get treated whether you're ready for it or not. I really hope they can find a bed tomorrow morning.

Mega-hugs min

Sorry, I meant unbuckle not twunk. Apologies.

We had the same last week Trazzle - we're put into a neurological ward for the first night (as he was just getting hyper hydration and not getting the drugs until the next day). It was weird because it was really loud and full of people. Haematology is all separate rooms and on the whole the children can't leave them - so it's really really quiet. Also half the ward has additional isolation (ante-chambers etc) so even more quiet.

Hope he gets a room okay! You don't want a delay for that reason! Especially not for the last stay.

Nocake fantastic news about the scan xxxx

Twunk thinking of you today and hoping you get good results xxxx

Trazzles hope they find a bed for Joe and you can start this last week of treatment xxxx

Unbuckle hope little I stops being sick soon and gains weight. My DS was painfully thin during his long hospital stay. He went in at 63 kgs and went down to 40 kgs - he was skeletal and frightening. He's losing weight at the moment due to tiny appetite and sick every day :-(

Scan and birthday on Wednesday. Finding it very hard but having to be jolly because if his 18th. Can barely find the energy to put one foot in front if the other and my bedtime is getting earlier and earlier.

Love to everyone xxxxx.

He was MRD negative at both day 33 and day 79 which means he is standard (low) risk!!!!

Next year is looking a whole load easier. No walk in the park, but not a trek through thick jungle either.

That's fab news Twunk. Xxxxx

Great news twunk.

Still thinking of you min and I hope this week goes ok.

They managed to find a bed for us and Joe is actually coping ok so far which is great. Usually by now he is yelping in pain and can't get comfortable.

Wonderful news Twunk, I'm over the moon for you

I'm glad they found a bed and that Joe is doing okay Trazzles

Thinking of you Min. It must be impossibly hard for you both

Hope I is feeling better now Unbuckle. Are you home yet?

Thank you everyone! It's great but we can't be complacent. I knew things were good when I saw the Dr smiling.

I have everything crossed for you Min. (((())))

Pleased to hear Joseph got a bed and is doing okay so far!

I hope our Wills boys are doing ok xxx