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.

ignore my question unbuckle. I've just seen :-( xxx

Unbuckle heart breaking, just heart breaking. No child should go through this, nor their parents. Cancer is just horrid. My thoughts are with Samuel's family. Xxx we lost three children from the time W was in. So close to home, so awful. Xx

mmmmsleep not long now till you go to Florida. How are the plans going? Can we help in any way? Are you fundraising - I'd love to donate if you are. Xxx

Twunk great news about going back to school. Some sort of normality. Small steps in the right direction. Xxx

P4B. Hope your son is getting some help. Glad to hear all going well with Beezy. Xxx

Waving hello to everyone ??. Sorry I have been absent. I've been hiding again from the relentless reality of it all and digging deep.

DS's vomitting seemed to get a lot better - going from every day to once every 8 days but it seems to have come back again with a vengeance. It's not fair and so undignifying for him. Energy levels are creeping up but the sickness has me worried. The further away we get from chemo the more anxious I get. There is nothing now preventing the tumour from growing and I am just holding my breath waiting for something to kick start it again.

I started a diet but that lasted a week. I have no control and chocolate and cake consumption is at an all time high. Think I'm starting the menopause as well. Hot flushes are doing my head in on too if all the other shit. My Dr thinks that because I had so many pregnancies late in my fertility cycle I may have pushed menopause to start early (I am 46 so not that early). Had a blood test results tomorrow so hoping I can medicate (other than choc) to reduce the flushes. My kids are getting fed up of me constantly stripping off!

Love to all. Keep strong. Xxx

minmooch that's very kind of you. we are fundraising but I don't want to post the website on here as we on this thread are all going through hell and you guys need your money too. It's too expensive having a sick child. fundraising is going really well and we reached our initial target even before our events. we had set our target lower than we had been told we needed but didn't in our wildest dreams expect to hit it. it has been a very humbling experience to witness the kindness friends family and even strangers.

I'm sorry your ds is vomiting again. That's horrid and so draining. I guess they've tried the patch? have you tried acupuncture. I don't normally go for holistic medicine being rather scientific and all but vomiting and headaches are things it has evidence for. I really hope it improves soon. I had hyperemesis with ds and I know it's not the same but it gave me great empathy for anyone vomiting lots! x

I is being admitted again for iv antibs. No day release this time as he is neutropenic. And a no siblings policy which makes visiting impossible. He's neutropenic cos his GCSF was 3 days late as they didn't want to do it over the weekend. Slightly furious.

unbuckle we're in too :-( seriously no siblings??? Aren't you in a side room? Surely they can bend the rules. I've had enough. We've been in every weekend for 5 weeks in a row now. not great when this is second to last weekend we're in the uk!!!
hope I gets better asap x

Unbuckle how frustrating that they didn't do his GCSF earlier. When Will was in the ward was closed to nursery and school aged children for a lot if the 5 months we were in because of norovirus. My two boys hardly saw each other because although his brother could come in to the hospital Will was too ill to leave the ward. Thankfully Skype kept us all in touch. It's very hard though. Xxx

mmmmsleep sorry that you too are in especially as it is your last weekend in the uk (Eeek). Hope you are out quickly xxx

It's so frustrating being stuck in hospital and very upsetting not being able to see family. We've never had a "no siblings" rule, though in the stem cell unit no children under 6 are allowed.

Well the Dex is finally over and we are officially into long term maintenance. It's weird - like I'm waking up or something. Strange to have no hospital for 2 weeks... strange to be contemplating Alex going to school.

Minmooch you are under no obligation to post, though it's lovely to hear from you. Sorry to hear about the vomiting, I hope it lets up soon. Xx

Amazing the generosity of people mmmmsleep! I'm so pleased you've raised the money so quickly xx

Big hugs to you unbuckle xx

Off to the bank this morning to see if we can borrow some money to do our kitchen. We want to demolish a wooden extension and build a smaller brick one, open up a walk and build another wall. We can never do things simply!

Twunk strange feeling, but nice, eh?!

Unbuckle how frustrating. Am confused though - J used to have his GCSF at home - I injected it in to his leg daily. Do you not have that option? Well, it wasn't an option, it was - we've put the insuflon in, here's a load of sterile wipes, GCSF and needles , off you pop!

Gah. It's me.

I quite like your alter-ego Trazzles!

The bank says yes! Woohoo. Now we need to see if we can do the work on quite a tight budget.

More good news Twunk!

Our gcsf is given at home. Except for the first dose which has to be at the marsden. So they did a blood test last Monday, and he's just not neutropenic. So they delay the GCSF for .... 9 days.

We haven't got it - I suspect because the whole point of Leukaemia treatment is to suppress the bone marrow and the production of white blood cells, and neutropenia is a given (especially during the first 2 or 3 months).

ds has new neurological signs in his eyes/face. hoping it's the vincristine. sg myself it's tumour growth. they've brought his scan forward to Monday. time to cross fingers and toes x

(((Mmmsleep))). So hard not to see tumour everywhere. Have everything crossed for your scans. And it is not long before the proton therapy starts.

Xxx

Mmmmsleep what signs? My DS had a headache Wednesday night and has had a numb left side of his face since then. If it is still the same next week they will bring his scan forward too. Fingers and toes crossed you get good news on Monday xxxxxx

((((((Mmmmsleep))))))
((((((Minmooch))))))

We never know what anything "means" until we know what it is.

Sterkte ("Strength") my friends xxx

Just bumping up in the hope that jesspilks finds us.

min I posted the link on her tread so hopefully she should get to us if she feels ready.

Bollocks.

You know it by now, right?!

oh trazzles I love your schizoid posts. gives me a giggle when not much is. don't worry we know who you are now ;-)
ds platelets in his boots so today sees next installment from the blood bank. off fo an op now myself and having to do battles as can't leave ds tonight so going back to that hospital after my op. nothing's simple is it!!

Grrrr Alex has something under his eye - a little infection it looks like. I said we had to call the hospital and he burst into tears and begged me not to. Just waiting for DH to get back then I will call them .

Oh my goodness Unbuckle what a palaver! Hope your op goes ok xxx

Trazzles we know who you are! Hope all is well with you all xxxx

mmmmsleep bugger to the platelets. Hope your op is simple - look after yourself xxx

Twunk oh bless him. I hope whatever is causing the infection is sorted quickly and a hospital stay is not required xxx

We are having a horrible few days too. Wednesday night DS had a headache. Lasted most of Thursday but paracetamol got rid eventually. But he has been left with a numb face on the left hand side and he says it's a little worse today :-( sickness is bad - after eating. He is in a panic and very tearful. I spoke to specialist oncology nurse late Friday who said hopefully his face will feel better after a couple of days rest. She said if it was not better then they would bring forward his MRI. If tumour is growing there's not much we can do now :-(. Finding it very hard to remain calm. I just want to cry.

Fucking shitting bastard cancer.

oh minmooch. hugs to you. lets hope it's just migraine. ds now can't move both eyes and droopy lids. as he presented with eye not moving im also scared. I hope you get a reassuring scan asap xxxx