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Original poster

Children with Cancer

833 replies

Twunk · 03/09/2013 18:04

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.

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GreatExpectation · 05/12/2013 20:35

Traz- at least getting the scans done ASAP there's less time to get anxious. I have everything crossed for your Christmas NED xxxxx

unbuckle · 06/12/2013 11:24

We're back in again. I's skin infection needs iv antibiotics. He's well in himself so we are both going stir crazy. We're in a bay for the first time and it is surprisingly noisy! Deep breaths.

Hope you got some sleep mmmm!

Nocakeformeplease · 06/12/2013 13:29

OMG mmmmsleep, that is one hell of a week by anyone's standards. I imagine the US thing must be a logistical nightmare but I'm glad they are pulling out all the stops for your little DS. Are you under shared care? If so I assume your local hospital will be the same one D is under. If so we are only 5 mins away so please shout if you ever need anything.

Trazzlesi felt sick just reading that, can't even imagine what it feels like for you. A special kind of torture indeed. I am hoping and praying for god news on 23rd, I hope the lead up passes quickly.

unbuckle - sorry to hear you and I are in hospital again. I hope you get out soon

GE lively t hear how well your DS is doing Smile

Min big hugs to you. It is unbearable, nobody should have endure what you and your family are going through. And you did the only thing you could, the same that we would all have done - I know it doesn't make it a jot easier knowing that Sad

Stinky hope you manage to enjoy christmas and it takes your mind off the results a little

Twunk I hope everything goes to plan and this round of treatment is over just in time for Christmas

Not much to report at our end. D is enjoying all the fun bits they're doing at school in the run up to Xmas. He has a week off from chemo next week - yah! Still has to have bloods done though which is without doubt the worst bit for him (having his port accessed). Got lots planned in the next couple of weeks - just hoping desperately that he stays well so he can enjoy them. I thought he was getting a temp this morning but fingers crossed not.

Sillybillybob · 08/12/2013 07:57

min exactly. It's no choice at all. It is constantly drummed in to me at the hospital that you cannot make the wrong choice for your child. I just want to reach out and give you a massive hug. It is just so bloody unfair xxx

To those in hospital I hope you're either out or doing well.

Today is the last day of Joe's treatment < gulp> i hope it's worked...

Trazzletoes · 08/12/2013 07:57

And I am utterly shit at name changes.

unbuckle · 08/12/2013 10:07

Fingers and everything crossed for you trazzle, and hope this year is the first of many amazing christmases.

Isaac's line infection isn't going, looks like it will have to come out and i will miss my kids birthday party. Hmm

mmmmsleep · 08/12/2013 13:09

unbuckle I'm so sorry that you're stuck in and have the prospect of a line change ahead :-(

we're stuck in hospital too. ds not taken well to his chemo. now on 3 anti sickness but still refusing to drink or take oral meds and very sleepy. can't see us escaping today. not a happy chap :-( this is so hard to watch isn't it.

unbuckle · 08/12/2013 14:02

Isaac is actually really well in himself! Hard to accept he needs a ga. Probably going to be this evening. Chemo put back again now too....

Hope the antisickness meds kick in. I think sometimes the chemo is hard first time but they react better to subsequent doses.

Nocakeformeplease · 08/12/2013 14:14

Oh Trazzles I can only imagine the range of emotions you must be feeling on Joe's last day of treatment. Thinking of you and desperately hoping for the best christmas ever of good news from the scans x

Unbuckle so sorry to hear Issac has to have his line changed - as if he isn't going through enough Sad. When D had an infection in his line recently they thought he might have his changed but fortunately it didn't come to that

mmmmsleep its unbearable isn't it. If its any consolation D suffered terribly after his first chemo (was hospitalised for over 2 weeks) but touch wood has been much better since and apart from a little tiredness and sickness has been pretty much fine even after the triple doses.

Hi to Twunk, Min, Stinky and everyone else x

Original poster
Twunk · 08/12/2013 14:47

We had a quick trip to hospital yesterday (clearly Alex didn't want to feel left out) because he had a fever - but his CRP was near normal as were all his counts. He spiked a bit again today but they think he has enough white blood cells to fight whatever it is off by himself. His chemo at the moment (methotrexate) is boring but not too arduous.

WOW Trazzle - last day of treatment! I have everything crossed that it has all been successful.

Bummer re the line (and missing the birthday party) Unbuckle - big hug to you.

More hugs to you Min ((()))

And now I've forgotten what Nocake said so I shall post this and then post again when I've checked!

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Original poster
Twunk · 08/12/2013 14:50

Oh yes I remember. Alex hasn't suffered from one dose of chemo - it's more cumulative. At the end of his first 2 months it was awful he looked so utterly exhausted from it all.

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minmooch · 09/12/2013 08:30

Lots of love to everyone in hospital and missing parties. It is so utterly unfair on our children and families.

Trazzles last day if treatment - what an achievement. We nearly lost DS somewhere in the middle of treatment so I couldn't believe he had actually made it to the end (and we lost two friends at the same time who did not make it through treatment). The mixture if emotions was very overwhelming and then a couple if weeks later he had to start again on another treatment. I am praying that you get fantastic results from the scans and that you can enjoy Christmas xxxx

As for us we made it to our family Christmas lunch yesterday - we try and get as many family members together before Christmas - 46 of us yesterday ranging from 9 weeks old to 89 years old! We managed to stay for 4 hours before Will got too tired but it was lovely to be there - at the moment I take each day at a time. My cousin was there who had a brain tumour 20 years ago. After all this time they have put him on growth hormones and he says he is feeling better than he has done in years - they are helping him with debilitating fatigue. We are off to the hospital (not to join in with the staying in hospital club) for an appointment with the endocrine unit. I'm hoping they can start him on growth hormones and anything else he is short of to help him. The fatigue is so hard to watch. He wants to do so many things but just has no energy.

Lots and lots of love to everyone xxxxxxxx

minmooch · 09/12/2013 08:32

Missed out the word today - today we are off to hospital!

mmmmsleep · 09/12/2013 15:32

we're escaping!!! He's managed an infection and an allergic reaction to one of the antisickness meds in the 11th hour but looks like we can finally go. yay!! back in a few days for next chemo but loking forward to a few nights in my own bed without machines that go beep.

sorry to those still in hospital. good luck for the escape and best of luck to all those with scans soon xx

Original poster
Twunk · 10/12/2013 19:33

Glad you're out mmmm cos we're back in! Flaming winter lurgy has laid us all low but Alex especially so. His temp was nearly 40C today.

He's on antibs but it's almost certainly a virus. I appear to have it too - the nurse just took my temperature and it's 38.4!

Probably here until Friday. Then back Monday for methotrexate. FFS.

Whinge whinge moan moan

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Original poster
Twunk · 10/12/2013 19:34

How did it go with the endocrine unit Min?

Your huge Christmas lunch sounds lovely

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mmmmsleep · 10/12/2013 20:22

oh no twunk I'm so sorry. I hope you're both better and out soon. I had a conversation on the phone with our oncologist today and the phrase "perhaps we should review him here" was used. We'll see what tomorrow brings as to whether we're joining you back inside x

Original poster
Twunk · 10/12/2013 22:17

We had that too - 11pm yesterday Sad

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mmmmsleep · 10/12/2013 22:36

Sad Sad

Original poster
Twunk · 10/12/2013 23:02

Hope you don't end up in the slammer too. We're scheduled to be here next week as well! Oh joy.

I'm thinking of redecorating...

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mmmmsleep · 10/12/2013 23:19

twunk...a little throw / some cushions pehaps then you can build up to a z bed that doesn't creak and machines that wirelessly link to the nurses' station rather than beeping when you've just got to sleep. just some ideas to run past mr lewellyn-bowen when you call him in ;-)

on another note does anyone have any tips on getting medicines into a 2 yr old. We're having battles. I manage to hide the lansoprazole fastab in 4ml of smoothy and dexamethasone in choc spread but he can't eat the amount of choc spread needed to conceal all the others and they are so nasty they're making his thrush and mouth ulcer ridden mouth hurt when he takes them. and don't even get me started on the nystatin or daktarin gel...tried both. I don't blame him it's the only bit he has control over and so much has been done to him.
all ideas gratefully received!

Original poster
Twunk · 10/12/2013 23:38

Mine is 4 so sticker charts (eventually) helped.

But when they didn't/don't we use a syringe and (listen carefully) you force place it into the corner of the mouth and empty contents into cheek. Almost impossible to spit out then.

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Original poster
Twunk · 10/12/2013 23:40

Actually the bed isn't bad - solid with a semi-reasonable mattress. I bring pillows, sheet and duvet from home (packed ready in a big canvas bag).

It does creak when you get up though.

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Original poster
Twunk · 10/12/2013 23:44

The pump is driving me proper nuts tonight. They tell you that you should sleep - WHEN?!

On that note I will sleep after the next one goes off in 5....4....3....

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unbuckle · 11/12/2013 00:24

We're still in too, waiting for the all clear for his new line. He is in better health than he has been for 5 months. I am going completely crazy with cabin fever and anxiety about relapse.

On the meds - force feeding - if you get the syringe between the teeth and at the back of the throat the liquid is hard to spit out. If you're in hospital, make the nurses do it rather than imagining they'll be more co-operative for a parent. NG tube.... if too viscous mix it with water. Hide it in milk.

The only one of these that works every time and is slightly less upsetting is the ng.

Only just got him to sleep so 1 hour 27 mins before obs at which point i invariably have to bring him in bed with me. Rest?