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.

(((Min))), still thinking of you and holding your hand. Sorry to hear of your daughter, expat, you have lived our greatest fear. (())

Isaac is still banged up for a few more days - 14 day course of abs. Had a big barney with the drs today as it turned out he had been neutropenic and they didn't tell us, we'd taken him on a london bus. Just finished ranting and it turned out his neutrophils went up to 15 today.

Mmmmsleep, hoping you found something to enjoy in your last weekend here.

Just dropping in to say I am so sorry, min. I haven't really been around this thread much now we're so far out of treatment but I checked in to see how everyone was tonight and am so sad to see this is happening to you, it is so terribly unfair. Thinking of you lots.

unbuckle

min we're still here x

mmmmsleep although the tumour hasn't shrunk is there a chance it could have changed state? I always say this... But I know with neuroblastoma the chemo can turn it in to a benign mass. Could that have happened with the brain tumour too?

We're plodding on. My mum left this weekend (she's back for a couple of days every week so I can work so it's not for long!) but she's no longer living with us. I'm trying to work out how to look after 2 children without losing my head!

However I've already hot my first hurdle... I have to take DS in to hospital today to have his NG tube changed. And have someone look at his leg - he stopped walking last Monday because it hurts and hasn't taken a single step since ( heart in mouth time). DD has a hacking cough and I have no one to look after her. Argh!

mmmmsleep. Hope you are doing Ok. Are all the arrangements made for travel and accommodation? Hope you are keeping it all together xxxxx

Unbuckle aaarrggghhhh for them not telling you he was neutropenic. I asked and wrote down every single blood test result so all Drs and nurses got into the habit of giving them to me immediately. Very glad the count has gone up - 15 is pretty astounding! Xxx

Trazzles I have everything crossed that there is a simple explanation for why Joe's leg is hurting. Even if our children recover we don't get a normal life with them because any little change in health causes extreme anxiety. Hope you manage today ok xxxxx

Thank you everyone for your kind words and support. We met the Macmillan nurse on Friday and she was lovely. Her manner with Will was wonderful and she resonated calmness. Will was happy to meet her but told her he was very confused about things like what day it is and time etc. we said that having been in hospital and then not going to school would take anyone out of their normal routine. Especially as he is eating all the time due to the steroids so he doesn't get that natural hunger for breakfast lunch and tea that gives a certain structure to the day.

His face is still numb and I have had to tape his left eye shut permanently for him. I think it is less frightening for him to keep it shut then keep panicking that it won't shut. He can no longer hear out of his left ear at all and his balance has fine completely. He's 6ft 1 so getting him up and downstairs is very tricky and quite frankly dangerous. He went to his Dad's on Saturday so I could arrange for my brother to bring around his sofa bed and store some furniture for me so at least now if Will is too tired for the stairs he can sleep downstairs. I have a single mattress that I am sleeping on in his room and last night we both slept down stairs. I have no downstairs toilet so I will be ringing the OT today to try and get an urgent stair lift put in.

I stayed at a girlfriends house in Sarurday night as I didn't want to be there alone. After a curry takeaway my friend, her husband, myself, two dogs and two cats all fell asleep in front of the fire.

We are back to see the consultant on Friday if Will is well enough. I hope that this week is peaceful for my darling boy.

Much love to everyone xxxxxxx

You are very brave, Min, and a huge tower of strength for Will. I don't post much as Dd finished her treatment nearly one year ago, but I do read the thread. Sending more hugs for you both. (((((((())))))))

Hoping for good news about joe's leg, trazzle.

Well, there turned out to be a good reason for the jump in neutrophils. They administered gcsf without it a - being clinically necessary, b- telling me and c- writing it on his chart. Found out today as my husband was in hosp last night and they administered it again - he agreed as he doesn't know the details of when it should be prescribed and they told him it was done the night before so he assumed i'd agreed. His neutrophils were 15. It is meant to be given if they are less than 0.5. How exactly am i meant to trust them with the care of my child?

I may try and sneak into the filming of 24 hours in a&e and have a public rant, see if that does any more good than the private one i had only yesterday.

Good luck today Trazzles I will be thinking of you. I know how you feel re help etc - it's weird now getting used to life after the heavy treatment is over. I went out Friday night and stayed at my friend's house as I fancied a drink) and I really didn't know if I was prepared mentally for that.

Turns out wine works quite well at smoothing the edges .

Min I also wish for a peaceful week for Will. I'm so sorry you have logistical problems to deal with on top! Hopefully they will get sorted. I'm glad you have good friends who can be relied upon to give you support and a nice warm fire to relax in front of!

Unbuckle that's totally shocking! I had to look up normal neut levels as I wasn't sure and the consensus seems to be 2.5 to 7.5! But yes I would be very nervy and double-checking all treatment. I have to say I never worry about the drugs given to Alex - I'm always aware and I do ask but I do trust the nurses implicitly.

Sending love to shits, stinky, Nocake and Lovelychops... And anyone I've forgotten on our thread xxx

Trazzles any news on Joe's leg? Xxxx

Thanks. No real news which I guess is a good thing...!

He was sent for an x ray yesterday which didn't show anything obvious. His Consultant is in today and will be told about it all and decide whether to take him in for more tests or not, like an MRI. We have to take in some urine to test as well as they can identify neuroblastoma tumours of a certain size from hormone levels in wee.

It's most likely that he's just overdone it with trying to walk but it's been a week now, well, more than a week, without him weight- bearing so it is a concern but they're taking it seriously.

I hope the news is good Trazzles, whenever it comes.

Exciting day chez Twunk - the "Class Contact" computer came. Now Alex can join in his lessons even when at home!

KPN provide it as a charity thing. corporate.kpn.com/dutch-society/mooiste-contact-fonds/kpnklassecontact-2.htm - see at the bottom. There's a terminal (looks v space age) in the classroom which we can control from the laptop they've given us. It moves up and down, left and right, zooms in and out and you can even 'raise your hand' (the light on the top turns red).

Oh Twunk that sounds brilliant! What a lovely idea!

We're in hospital as J has posted a fever. As usual, suspected chest infection so we are waiting to go to X-ray. If it's ok, we'll go home with oral antibiotics. If not... Hotel LGI.

Oh no hope you're out soon trazzles! And hope Joe starts to walk again ASAP.

Went to the hospital today - last time we went we agreed Alex would start school mid march after his port comes out, because quite frankly I think Alex needs some time to just "be" and he's not at compulsory school age yet. She said "there's no clinical reason not to go" - yes I know that. We agreed after the port!

Good news is that the chemo is working and his neuts were only just over 3 so we don't have to change the dose yet (they have to stay between 2 and 3).

Love to all xxx

We're free, after 14 days banged up. Hoping the line stays clear - if it gets infected again, i am hoping they will change to a port now he's bigger.

Love to all. Any news yet Trazzle?

Sorry, yes, we weren't kept in. X ray came back clear so sent home with oral antibiotics "just in case". Fine with me. J was back to normal yesterday.

Today both kids haven't stopped screaming yet. They're exhausted after a long week.

Jo, our CLIC Sargent volunteer has sent me upstairs for 10 minutes peace, thank God for her. I'm close to just walking out and leaving the kids to just scream at each other for the rest of the day.

No news on leg. Consultant was looking at everything on Tuesday... No calls from the hospital at all. Not even to say they aren't doing anything. I'm trying not to bother them but at the same time it's crap that they just never pass information on!

Glad you're finally free unbuckle

Ugh just had call from the hospital. J is growing a bug so we're off in - should still be treated at home as he is otherwise well but needs clinical assessment, more cultures taken and change of antibiotics. This after it took me the whole of yesterday to get the first antibiotics from the GP and even then (having been told by the hospital verbally and in writing that the dose was wrong) they prescribed the wrong dose.

Appreciate this is nothing compared to other's problems. Just frustrated.

How are you doing Trazzles? Still in?

Blimey unbuckle that was a long stay! Hope i stays out of the hospital for a while.

No, still at home... For now!

He's absolutely fine so we were sent home with stronger antibiotics. Last night we nearly had to go in (again...) as Joe's temperature dropped but some judicious duvet wrapping meant he could stay home.

Today we've been out for Nando's. That's how poorly he is! But it's line flushing on Monday so that brings the risk, and then the following Monday too so he's a long way from being "fine".

Oh and re: the leg. J's consultant is taking the wait and see approach

Aaaaah "wait and see"

I'd not like that either, so I can also see why a thorough investigation might not be the best course either.

Alex doesn't have line flushes - he's got a port. What does it involve?

Pleased to hear you're at home xx

hello from the us of a ;-) we landed safely. kids did very well on the flight and we're now settled in our apartment and have done our massive shop so can finally eat in. which is good news for the rapidly expanding waistline! we met ds' proton therapy team on Friday and this week is full of surgery and chemo ahead of the daily onslaught of 5 day a week GA for his proton therapy for 7 weeks. the side effects chat was not a pleasant one. they managed to add deafness and blindness to the list. great. poor little man :-(

good luck to the restof you and trazzles I hope the infection clears asap!!

Oh mmmmsleep just as you were assimilating the last lot. Are they inevitable?

Hugs to you.

Amazing that you're there! Good luck for the week ahead - keep us informed xx

We're still attempting to get into "normal life"

Just waiting for our date on the port removal.

Alex is a lot like his old self. Still a bit puffy and a bit stiff but laughing and playing like normal.

And his hair is growing back.

It's weird.

Oh mmmmsleep glad you arrived safe and sound. Next few weeks sound gruelling but you will get through it. Xxx

Unbuckle glad you are 'out' and fingers crossed line stays clear. Xx

Trazzles hope infection clears up pretty fast and does not require any stays in hospital xxxx

Twunk getting back to normal takes strength after what we have all been through. Yay for his hair growing back. My Will still has very soft baby hair since his grew back.

As for us we are still here. Walking virtually impossible. Stair lift fitted to get him upstairs to the bathroom. I am completely numb. I have no emotions left at all. It all feels weird.

Love and strength to everyone xxxxxx