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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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mmmmsleep · 11/12/2013 00:29

damn I was hoping for a miracle answer. he had 8 syringes this morning for meds so force feeding would have just had us both in tears. bribery won in.the end. hope you escape soon ! x

Original poster
Twunk · 11/12/2013 00:48

Oh if bribery works stick with that! Or a combination of the 2.

I was asleep for about 30 seconds - then Alex yelled out, an alarm went off, his temp was taken (still has fever).

Oh no unbuckle I hope you get out soon! It's just such pants.

I will sleep.

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minmooch · 11/12/2013 17:36

I'm sending you all hugs. Being in hospital is just pants. We were in for 5 and a half months. It was awful and yet when we left it was just as frightening to be home. But I will never complain about the silence of my bedroom. And having my bathroom and washing machine. Even though we have been out of hospital much longer than we were in I don't think I have ever recovered from the lack of sleep. On top of everything else we have to face the lack of sleep is shite.

Now when my boys have a night at their dad's house I sometimes take a sleeping tablet which knocks me out for 13 hours. Not sure I feel any better for it but it must be good for me.

Endocrine appt was ok. DS is very deficient for growth hormone so they will start the process to get him on daily injections - can take up to 2 to 3 months to sort out. Wtf? If this will make him feel a little more energy I want him to have it now not in 2 to 3 months. Fucking beaurocracy and in all his treatment this is such a small cost.

Trazzletoes · 11/12/2013 17:37

Sorry you are all in Sad

If bribery works, go with that. I used to have to rugby tackle J and force it down his throat. Horrific all round. I was so grateful when he got his NG tube. Of course, now he won't even take Calpol orally...

mmmmsleep · 11/12/2013 19:29

oh min that is truly rubbish! can you get PALS at the hospital involved to see if they can help speed things up? or local mp. If there is a clinical need it's ridiculous he has to wait months for such a common treatment. I'm with you on wtf!!

so sorry so many are in. we're staying out so far. He's saying his wiggly (he's hot hickmann) hurts today. Can't see any signs of infection. just hoping it's just that he doesn't like it. he had a 3 course meal with meds hidden in every course today...got them in yay! hopefully he'll improve once his mouth isn't full of ulcers.
hugs to you all

Nocakeformeplease · 12/12/2013 10:27

Sorry to hear so many of you are in hospital - I hope your stays are short lived.

Your lunch sounds lovely Min. I think taking it a day at a time is all any of us can do - not always easy I know. Very frustrating about the 2-3 month wait - did they say why it takes that long?

mmmmsleep DS often complains that his wiggly hurts but we have watched him closely and are pretty sure he just says it when he's fed up (normally after its jus been accessed). Sorry to hear about your DS's ulcers - must be miserable or him poor thing

Trazzles thinking of you and Joe x

Twunk - hope Alex is feeling better and that you managed to get some sleep.

DS went on his first proper play date (without me) after school yesterday Smile And we're off to see Father Christmas this afternoon, organised by a local charity. Like Min I am trying very hard to take it one day at a time and not obsess over what might happen in the future. I don't always succeed with this!

Original poster
Twunk · 13/12/2013 22:55

Yippee I'm home!!

Until Monday. Boo

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unbuckle · 14/12/2013 21:31

Enjoy it twunk! Every second at home counts.

We are still banged up. Plan is for line on Monday. Then tues- fri as outpatients at the marsden.

Ho ho ho.

X

Original poster
Twunk · 14/12/2013 22:37

Ho fecking ho Xmas Angry

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Nocakeformeplease · 14/12/2013 22:38

Sorry to hear your still in unbuckle Sad. I thought you were just waiting in the all clear on the new line? It feels never ending at times doesn't it. I hate it too because there is too much time to think - at home at least there is the distraction of taking care of the DC. Thinking of you xx

Nocakeformeplease · 14/12/2013 22:40

You're not your!

We're in all day wed for a long chemo do may see you then!

unbuckle · 14/12/2013 23:55

Yes, that's likely. We had all clear on Weds, it's just that none of the hospitals fancy making room on their list for him.

mmmmsleep · 15/12/2013 07:30

oh no unbuckle sorry you're still in :-( we had a 10d wait for a line to start chemo...was so frustrating. We're in Friday for chemo so will see you then. I'll be the one with the 2 year old strapped to me. ds just wants to cry and sleep on me at the moment. he even turned down opening some Christmas presents early yesterday and refused chocolate! I can't get any food in him which is a pain because that was how I got his meds in. been up most of the night with him in pain due to constipation and other pains Sad

glad you're home twunk even if it is shortlived

nocake how did santa go? ds hasn't really got into santa yet and I think he'd just freak out thinking it was someone else trying to get to his wiggly like every new person he meets at the moment.

still sending hugs minmooch x

mmmmsleep · 15/12/2013 07:45

and hugs to you too trazzles.

Trazzletoes · 15/12/2013 09:28

Thanks. Sorry you are all having such a frustrating time.

J has had hearing test, heart echo and kidney function test this week plus an MRI of his head, chest and abdomen.

Next week is MIBG - which I think is just a neuroblastoma thing - they inject this MIBG radioactive dye and it sticks to most neuroblastoma tumours and lights up on the scan.

He gets a GA for most scans but just sedated for this one and it never quite works right! Plus the scanner is quite scary as the plate comes down to literally an inch above his nose! All fun and games...

Hope you're out soon unbuckle and hope Monday goes ok twunk. Keep on keeping on.

mmmmsleep · 15/12/2013 18:56

I will call our nurse tomorrow but is this normal in your experience? had first chemo 2 fri ago (vinc / cyclophosphamide and adramycin) and vinc again last fri. all he's wanted to do pretty much since start is sleep on me. It's getting worse and now sleeping most of day with v few glimpses of his normal self if any and 6 spoons of food all day today.

I didn't expect him to be fighting fit but just wondering what your experiences are. he hasn't got a temp and counts were ok thurs.

Nocakeformeplease · 15/12/2013 20:57

It's so hard to know what is a 'normal' reaction isn't it.

DS becam very lethargic two days aft his initial chemo, but then he went on to develop a temperature later that day so it may have been because of that. He hasn't been particularly sleepy after subsequent chemos but then he is on a different chemo (vinc, actinomycin & doxorubicin).

I would give the marsden a quick call tonight if you are concerned. They have been great at putting my mind at rest over the phone on a couple of occassions.

Original poster
Twunk · 15/12/2013 23:32

I call if I have any concerns.

Tonight Alex fell off the cabin bed and hit his head on a drawer unit. He cried immediately, eventually calmed done, stopped bleeding and seemed fine but I knew I had to call. We were told to take him to our local hospital to check his platelets as if they were too low he'd need a CAT scan. Thankfully they were high enough and he could go home.

I think my point is that quite often if it's something you're worried about, they may want to check it out.

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mmmmsleep · 15/12/2013 23:54

thanks ladies. he spiked a temperature and we're in. he has an infection in his hickmann line...pus coming out of it since I last looked :-(
now on the full monty of heavy duty antibiotics and in for the forseable :-( bugger

mmmmsleep · 16/12/2013 00:40

sorry twunk....I'm so glad alex is ok!! x

minmooch · 16/12/2013 08:58

Bless him mmmmsleep. It's so hard to know when to worry or not. DS spent most of his first lot of treatment sleeping through it and after radiotherapy slept for most days for weeks and weeks. Always call and get advice. Our children are vulnerable and need more care. Sorry he has an infection in his line. Hopefully it will pass soon xxx

Twunk. So glad Alex is ok and platelets high. The extra worries we have to go through are so hard as well as everything else.

One of the babies at our family party came out in chicken pox the next day. Will hadn't been close but I had been kissing and cuddling the baby. Consultant wasn't too worried as he has had chicken pox but I feel on high alert.

My dog can't walk on his paw this morning. Pads are all swollen on one paw. No blood. Obviously my immediate thought is that he has a tumour and I will have to put him down and how will I tell the kids etc. I see disaster at every step now in my life! Vet appt at 10 so hopefully it's nothing more than a splinter!

Love to all xxxxx

unbuckle · 16/12/2013 11:25

Oh no mmmmsleep, not you as well for the line. Have they told you how long the course of antibiotics is or do you not dare ask?

I is meant to be having his line in shortly. I'm at home, as he's better with his dad when he's nil by mouth. Couldn't really sleep last night without him next to me.

And we have a mouse in our house. Read a thread the other day that advocated burning the house down to get rid of them!

Nocakeformeplease · 16/12/2013 14:13

So sorry to hear DS has an infraction in his line mmmmsleep - I hope the ab's kick in soon and you don't have to stay in for long.

Will keep fingers crossed nothing serious for your dog Min. Understandable that you feel on high alert about the CP - it's so unfair that everything is tainted with worry and stress isn't it Sad

Hope everything goes well for I unbuckle

Glad Alex was okay Twunk and it didn't mean another admission.

Hi to Trazzles and everyone else x

I'm so fed up today. We had planned a really special day to Lapland UK on Monday, my mum, sis and niece were coming and it sounded wonderful (should do for £400 between us!). Just got D's bloods back though and although he didn't have chemo last week and only vinc the week before, they have dropped quite a bit which means with the triple chemo tomorrow he is very likely to be neutropenic Mon. I know it's only a small thing in the scheme of things, especially given what some of you are going through, but he's been so brave this year I just so wanted to give him a really special day Sad.

mmmmsleep · 16/12/2013 16:02

oh that's so disappointing nocake.i totally understand and you're allowed to be annoyed :-(

unbuckle. we're waiting for culture results Wednesday then will see where we go from then but it's looking like a while so I guess friday chemo is up in the air. hope your ds' line went well

Original poster
Twunk · 16/12/2013 22:34

unbuckle we've had 2 mice in our house. Margaret died in an empty trap (after having carefully removed the tasty treats without setting them off for several days) and Gary got stuck in a bag of dog food. He was humanely released a long way from our house! We've not had any since.

Alex has a Portacath, not a Hickman, and it's not got infected...so far. Although treatment for ALL is 2 years, after January all his chemo is oral so it can come out! I am pretty happy about that. So I hope all line problems are resolved soon.

Oh nocake what a fucker. Fecking cancer and fecking chemo Sad Angry

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