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Children with Cancer

(834 Posts)
Twunk Tue 03-Sep-13 18:04:08

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.

Nocakeformeplease Tue 03-Sep-13 19:48:17

Thanks for the new thread Twunk. Lovely to hear what a a you've all had and especially that Alex is on good form.

In answer to your question about post op treatment, we will find out for certain a week Friday (13th!) when they have had all the histology back and met to discuss his plan but it will most likely be 6-9 months of chemo and most likely a course of radiotherapy.

Thanks for the supportive messages. I am pleased they got most of it out Inbuckle I just wish I could accept what the surgeon said but I am obsessing about the bit they couldn't remove and what happens if the chemo doesn't get rid of it. To tell you the truth I am really struggling. I feel like I did in the beginning, very tearful and frightened and extremely angry. I can't bear that my little boy has to go through this when he should be at home getting ready for his first day at school. And I'm terrified beyond belief that we might go through all this and it still won't work. I don't think I could go on without him. I'm just not strong enough for this anymore.

I'm sorry for the pity party, I really will try and snap out of it.

Minmooch it must be desperately hard waiting for the scan results. I'm thinking of you and hoping and praying that the results are positive. Much love x

Nocakeformeplease Tue 03-Sep-13 19:49:40

Sorry for all the typos, on my phone

minmooch Tue 03-Sep-13 19:54:04

Signing in here - my Ds 17 years old) was diagnosed in Nov 2011 with high risk aggressive medullablastoma (brain tumour). He has had 11 hour surgery, 6 rounds of intensive chemi, 5 weeks if double daily radiotherapy, 54 weeks if maintenance chemo. He survived all that but so did the remaining tumour and he is now on Temozolomide, as palliative care.

Scan results came back today and tumour has neither shrunk not grown so chemo doing its job at the moment and tumour stable. Another scan in 3 months.

Hello hello to everyone. Now that's over I hope to be more supportive.

Twunk Tue 03-Sep-13 20:53:17

It's a buggery bollocky stressful time Nocake that's why you're stressed and miserable.

I have found (in the 5 weeks I've had to get used to it) that any "event" makes me much much worse. Everything comes to a head and I'm so much more anxious, jittery and generally a mess.

It's been the build-up, the scary hours yesterday and now the results etc - be easy on yourself because OF COURSE you are feeling this.

((((((Hug)))))) unmnetty or not.

Minmooch I'm relieved to hear the scan results were not showing a growth. I hope the next few months are a bit calmer for you and DS.

unbuckle Wed 04-Sep-13 09:22:27

Signing in here. My baby son has a ct scan today under general to plan surgery for bilateral wilms tumour.

Twunk Wed 04-Sep-13 17:07:33

How did it go unbuckle?

unbuckle Wed 04-Sep-13 19:16:02

He's fine and home now, thanks for asking. Results friday.

Twunk Wed 04-Sep-13 22:30:25

A horrid wait, I hope it doesn't feel too much like forever xxx

unbuckle Thu 05-Sep-13 09:28:41

I think i will find friday hard, i'm at work today so have my game face on. I deal with drs really badly, and i can't bear people trying to break things to me gently, it makes me incredibly anxious. And i always feel like i'm being spoken to like they expect me to not understand - last time i saw a consultant she repeatedly corrected herself from saying 5% to '5 in every hundred'. Little thing i know, but when i am stressed and anxious, talking to me like i don't understand either basic english or basic mathematical concepts seems to magnify it all!

Twunk Thu 05-Sep-13 22:24:24

Wish I had a game face, I tend to wear my heart on my sleeve.

You're doing really well. Let us know how you get on, will be thinking of you.

I hope DS is recovering well Nocake. And I hope you're having a peaceful time minmooch xx

unbuckle Fri 06-Sep-13 16:31:39

Well, that didn't go so well. His tumour is no longer responding to chemotherapy. They are investigating whether it is actually now growing. So, he's going on an extra drug (doxyrubicin) which sounds more like how you expect chemo to be - given over hours, makes you sick, gives you ulcers. And it turns out i was misunderstanding the scale of his disease and seeing positives where actually there were negatives. Not a great appointment.

Saw the psychologist too - beforehand- that went well actually, i'll probably do it again.

Twunk Fri 06-Sep-13 17:39:26

((Unbuckle)) I am sorry it wasn't great news. Alex's chemo is like that but actually his side effects are really very much under control and not like I was expecting at all - no nausea or vomiting, no constipation (yet). He's tired and his legs ache but we can cope with that. When is the next scan or have they not got that far yet?

Big big hugs coming to you x

Nocakeformeplease Fri 06-Sep-13 22:21:15

Didn't sign it last time so - DS (4) was diagnosed with a Stage IV Wilms (kidney) tumour 12 weeks ago. He has had a course of pre OP chemo to reduce the tumour and this week underwent surgery to remove it. We will find out what the post op treatment plan is next Friday but its likely to consist of 6-9 months of chemo and radiotherapy.

Sorry I haven't been around. It's been a very stressful week. DS seemed fine after the op but the following evening started bringing up large volumes of green bile. The next day he started getting cramping pains that just got worse and worse and by then was producing ridiculous amounts of this vile bile. the poor little mite didn't sleep for 3 nights and was crying out in pain most if the time. It turns out part of his bowel had got pushed inside itself and was causing an obstruction and he had to go down for further surgery this morning. Oh and he also has a chest infection.

This week has absolutely broken my heart. I just can't bear to see him in so much pain and I am absolutely raging that he (and all our babies) have to go through this. It's so bloody unfair. And I know it's pointless thinking like this but I can't seem to pull myself together at the moment. Fortunately he seems much more settled since the second OP so that is something.

Minmooch - I'm very glad to hear that the scans show the chemos is keeping the tumour stable. I can't imagine how stressful waiting forvthosecresults must have been. I hope you and your DS's have a nice relaxing weekend

Hi Twunk - how is Alex getting on? Did DS1 enjoy his first day back at school?

Unbuckle - I'm sorry too it wasn't better news today. However DS treatment plan included two doses of doxorubicin and in my limited knowledge of chemos, this is a kick ass one so fingers crossed it hits the tumour hard. DS did suffer with it the first time (sickness, stomach cramps etc) but the other time he had it he was absolutely fine. Will surgery still go ahead as planned or does it depend on the results of the next scan? I often worry I am trying to find positives that aren't there. It's bloody exhausting isn't it.

unbuckle Fri 06-Sep-13 23:31:00

Oh nocake, what a horrendous week, and you are amazing to have offered me reassurance on the chemo when your ds is going through so much. I had imagined somehow that after surgery their organs would move back into place where the tumour had been iyswim. Hope he gets some rest tonight and continues to be more comfortable.

minmooch Sat 07-Sep-13 08:42:55

Unbuckle I'm so sorry your appointment did not go well. Sometimes it takes a while to be ready to really hear what is being said. Over the last nearly two years I have found it is a way of coping - sometimes I hear the positives (real or hoped for) and then I hear the reality. I hope the next dose of chemo starts reducing the tumour with few side effects.

Nocake what a horrible time you are having. It is devastating to see our children in pain. I hope that your DS is much more comfortable now. Anger is very much part of this journey - I get angry that I can't do this for my son.

Twunk how's Alex? And you? Hope you are having some good days.

As for us DS went back for L6th induction day but threw up everywhere (first time so visibly at school in all this time) so we went home :-(. The following day at school he got himself in a right state as he had diarrhoea :-( luckily made it to the disabled loo but in trying to remove his clothes got it everywhere :-( his mobility and dexterity are no good anymore after surgery. I had only popped outside to the car for two minutes :-(. He called me and luckily I had taken a spare school track suit in my car so cleaned him up, got him changed and took him home :-( he is now very depressed that he can't help himself in these situations - and very undignifying for him. He hasn't been back to school as I am sure he is worried about it. Hopefully I can get him back in for Monday before more chemo on Tuesday.

i hate what cancer has done to my child - he is having to cope with too much. I am a single parent and find it all so overwhelming at times. And yet when the boys go to their Dad's I don't know what to do with myself - I don't really exist anymore as a person in my own right.

Twunk Sat 07-Sep-13 14:42:37

Goodness what a week Nocake

You must have been so worried sad and to be out through a GA twice is no fun for anyone.

I have made contact with a charity who offer free counseling over the phone. Tbh I don't particularly feel in need of it at the moment, but thought it better I can talk to someone about the things that keep me from sleeping. Have you thought of doing the same?

I hope he feels much better now and can go home soon xxxx

We've just finished the first week of consolidation. 5 trips to hospital and daily oral chemo. Tuesday he has a lumbar puncture I am dreading, and will probably need a blood transfusion. Oh and he needs an X-ray and possibly an MRI on his leg as he complains of pain behind his knee.

Stinkyfeet Sat 07-Sep-13 19:43:22

So I'm back. It's back. Fucking bastard cancer.

Twunk, Nocakes, Unbuckle - so sorry to read your stories.

Min - dreadfully sorry things are no better for you all.

Almost exactly 2 yrs ago ds1 was diagnosed with medullablastoma. His tumour was completely removed, he had 6 weeks of radiotherapy and 8 cycles of chemo. Sailed through the treatment with barely any side effects and no infections. Treatment finished in November 2012. He was recovering, putting on weight, getting stronger all the time.

Then, bam. Routine scan in July showed 2 small tumours in his spine. So he's back on chemo. Prognosis is not good apparently - what exactly "not good" means, I haven't the strength to find out.

He's the picture of health right now - doing everything a 10 yr old should be, so we're enjoying life as much as possible.

Can't believe it's happening. It's harder than the original diagnosis I think - everyone was so positive then. This time - not so much.

Twunk Sat 07-Sep-13 19:50:12

Stinky I am unutterably sorry that you have to join us. Fucking bastard cancer.

unbuckle Sat 07-Sep-13 20:15:13

Stinky, so sorry you are with us. This disease makes me so unutterably angry i can barely think of it. Fucking bastard hardly touches it.

wokeupwithasmile Sat 07-Sep-13 20:57:29

I just came across this thread by chance and tonight you are all in my heart.

Stinkyfeet Sat 07-Sep-13 21:05:32

Thanks Twunk and unbuckle - I was never that great at updating on the old thread, but I've a feeling I'm going to needthis one a lot more.

Thanks for your thoughts wokeup.

minmooch Sat 07-Sep-13 21:18:20

Stinky I'm so so sorry you are back here with us. There are no words to describe the utter unfairness of this. To have gone through all that, been clear and for it to come back is horrifying. My son has yet to be clear of his tumour so we have never reached that remission time - I can imagine that this is harder than the first diagnosis. My thoughts are with you and your family - you will find the strength, as you did before xxxx

Fucking bastard cancer.

Lilyloo Sat 07-Sep-13 21:22:38

I am so sorry (I know it sounds so trivial) hate hate hate cancer , just so unspeakably shit.

Twunk Sat 07-Sep-13 23:13:56

Minmooch I'm sorry I missed your post before - for some reason it wasn't showing on my phone. Your poor DS, it's so sad for him but you sound like such a wonderful mum. I totally get you on the identity thing - already I feel that my identity is now "mother of boy with leukaemia". We were (a little half-heartedly) trying for another baby. I can't see that happening now.

Fucking bastard cancer.

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