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.

Oh P4B is there a chance your DS could be suffering from stomach migraines/ IBS? I had anxiety as a child and it manifested in stomach migraines and developed in to IBS as an adult. When I'm having attacks - bad ones - they're debilitating and I just can't even walk. Cutting out wheat when I'm having anxious periods helps. But really it didn't get better til I dealt with the cause of the anxiety. And even then it took a while. I hope the psychologist is helping. As if you don't have to go through enough

Nope. It's me with a crap name change fail again.

hi
unbuckle I'm so glad isaac is walking again! You'll get there. long slog though I know!

praying you're quite welcome to come and have wobbles about the nasty side efects of treatment I've done it myself very recently. it's just so unfair that they go through all of this then have the long term effects to deal with :-(

hello to twunk nocake minmooch and everyone else!!

has anyone heard of butterfly wishes network? www.butterflywishesnetwork.co.uk/family-application they are a charity of photographers that offer there time to families with seriously ill children for a free photoshoot. thought someone else might like to take them up on their offer. We're doing it this week. part of me doesn't want a record of ds with his bald head and tumour induced squint but then if things don't work out my little dd wouldn't remember him so we need lots of records of them together.
our other news is we've been approved funding for proton therapy. they're trying to decide where we go but looks like we're off first week of feb. eek. almost a month earlier than first told and dds passport still not back. eek!

their time even!

He's been seeing a psychologist at GOSH who's been great -- just hoping they'll keep seeing him for a while yet. He needs it.

That's good, but be prepared to have to fight/find a private therapist, trauma can take a lot of time to work through (my ds's PTSD is much better but has manifested as panic attacks, vomiting, insomnia and blame transference to name just some of the delightful symptoms). I hope he recovers well.

I know it won't help with his trauma, but I wonder if a charity can give him a treat (like Make a Wish but not). I know it's not much but it can't hurt? Poor wee man.

We're finally building down the dexamethasone. Alex is hugely bloated - god I hate side effects.

Oh my goodness mmmmsleep that's so soon! Excellent it has been approved . How's the fundraising going?

hi twunk. glad alex's dex is reducing. horrid stuff :-(
we're off to florida....so at least we won't need those vitamin d tablets! fundraising has been humbling. it's amazing how many people have offered help. we feel very lucky in that respect and helps us feel a bit calmer about it all.

hello to all. hope your dcs are doing well x

So....what happens about finding somewhere to stay etc? Does someone help you with that?

we fly 5th...or maybe 6th. I'll meet the person that arranges flights on 31st!!!!! then meet someone there when we arrive to sort accommodation. first few nights in hotel. bonkers. totally goes against my very organised nature and I'm struggling a little with lack of info but it seems that's nothing new

Eek! All sounds a bit...last minute-ish. Not that one can plan for childhood cancer, it kind of pounces on you whatever life is currently doing.

eeek indeedy twunk!!!

You'll be fab. So does chemo etc carry on when you're there?

Just back from the hospital. This was the first appointment in "maintenance" (which officially starts Wednesday). Simple blood test followed by a short appointment with our consultant.

Alex can start school! We agreed to give him a few weeks off to recover and get his port out, so he will start mid-march

So this is it now, oral chemo and a blood test and appointment every three weeks! We can visit the UK soon too.

oh twunk I'm so happy for you that's fab news!!
yes chemo will carry on so flights are very tricky to time around his everlasting neutropenia!

Wow, wonderful news twunk. A sort-of normal life. Hope he sails through the rest!

Xxx

one of the kids who was on the ward with I died today. I think in a way i had got so used to cancer i forgot what a total fucking bastard it is.

I has another skin infection around his line site, he's on oral abs but i am not feeling optimistic. Community nurse is coming round in less than an hour so I urgently need to pull myself together.

Xxx

Oh unbuckle I'm sorry. It just brings it all home, doesn't it. Cancer is shit.

I saw on FB about the little boy Samuel that died today. His father posted a photo of his cuddly monkey on the empty hospital bed. It was more than my heart could bear.

I don't hear about deaths on our ward. It's blood cancers only so maybe there hasn't been any since Alex was diagnosed.

Yes, it was samuel. He was a couple of doors down when I had his ops

I'm so sorry unbuckle - so upsetting for everyone. His poor poor parents.

He was a remarkable boy and clearly a wonderful family.

Yes, that photo with the really familiar backdrop of the hospital walls, with the plugs and the thing to call the nurses, the fairy lights that i used to try not to stare at as i walked past the cubicle, and the empty bed with the monkey. Still have tears running down my face.

Beyond poignant

(((())))

I'm sorry unbuckle. cancer is horrid horrid horrid. is that someone at our main hospital or at your local hospital? my heart goes out to his parents. how truly awful. hugs to you x