Children with cancer

[KinkyDoritoWithFairyLightsOn]

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

A little bump.

Am hoping that all is well with everybody

Having a pity party today.

theacutelymphoblasticleukaemiadiary.blogspot.com/2012/03/glimpse-of-what-it-is-like.html

so sorry to read all that stress. Have you applied for DLA for dd? That would help a great deal.

Hi lisa; yep, we get DLA. Unfortunately doesn't begin to cover it: accursed gigantic mortgage!! I'm also nervous that if I lose my job it will be so hard to get another one . How are you?

im doing ok :)
you have let ctc know you get dla havent you? Dont forget to look at carers too.

Hi Kinkyd / everyone, How are you doing? It's so hard I know. So hard to fit in one round of professionals after another on top of work and other commitments. You are not alone, we're here for you.

Just wanted to join the thread, was told about it by Stinkyfeet.
My DD3 was diagnosed in July last year with high grade neuro glioblastoma multiforme (brain tumour). She is now 6 years old. She has had surgery, 6 wks of radiotherapy and is now approaching er 5th cycle of chemo. She is doing well at the moment but we know the outlook is not great. She is amazing and brave but my heart is broken, we keep going though.

3girlies I am sorry that the outlook is not good. We are here if you need a chat. Sending love to you all.

Thanks Queen, it is appreciated. I hope you are okay .

Just giving the thread a little bump.

Hi 3girlies, how many cycles is your dd going to have?

Hope everyone else is doing well

Hi 3girlies, glad you found us here. Your dd's treatment plan sounds very similar to ds's, although it was a different tumour. I'm so sorry that the outlook is not good.

Ds has finished the chemo of his 2nd cycle and is on his break until next cycle beginning on 11th April. He's doing really well, although bloods today are the lowest they've ever been. You'd never know it though - he's currently wrestling with ds2!

Hope everyone is OK, Kinky especially, you seem to having a really tough time - I hope things are better for you at the moment.

Well, the oral antibiotics have copped out (she did have a bug) and I have now had to bring her in.

Her temperature was 40.4 when they last checked; she was neutropenic on Tuesday when they tested her blood. So, I'm thinking at least 5 days. They think she has a chest infection. Xray as soon as they know all the drunks have left A&E.

Unfortunately, I was up working until midnight, so I am currently functioning on less than 2 hours' sleep. I have the shakes.

I'm going to get a Tshirt made. It will say, "KinkyDorito: surviving on tea, chocolate and sheer bloody determination since Jan 2011".

Blood and platelet transfusions, definitely staying in and waiting for Xray still.

Off for more tea to replace sleep.

Oh Kinky, how miserable for you and dd. Any chance you can get any sleep today or is it just too busy and noisy there? Perhaps while dd having the transfusion. How is she feeling?

No chance of sleep! I'm shattered. They are testing her widely as she's febrile still. They want to rule out an unusual strain of pneumonia. They are loading her with antibiotics. She's very up and down, and now much pinker after 3 bags of blood, with another in the morning.

Soooooo tired!

Hopefully you'll get some sleep tonight then. Are you on a bay or in a private room?

Private room, but it's bright and has really loud air con. Saying that, I'm wiped so hopefully won't matter!

Hospitals are such non-restful places! Well I hope you're asleep by now and not disturbed too much. I always sleep really lightly in hospital and am always disturbed at obs time!

I'm the same, and was last night. She's ended up having to have oxygen as her sats are too low .

Poor thing. I hope she starts to feel better soon.

Hi everyone,
I haven't been on here for a little while, thanks for your updates. I'm rooting for those fighting infections and fighting cancers and praying everyday. There are various AOL groups set up by parents for parents, some of you may find them helpful - IME people share research and top tips about alternataive therapies. I'm really sorry but can't find a link to post - not very helpful.

I'd like to share some good news. Our MRI was clear! Thank you for your hopes and prayers.

I have noticed that my mental state is very fragile. The smallest thing can upset me a ridiculous amount - I was criticised for a minor thing at work - a fair criticism, and something easily correctable, a really minor thing about a form fillied in slightly incorrectly.But I was in tears about it. Not like me but I am not myself, yet I've lived this nightmare for 2 years now.

Do any of you have some top tips as to how to cope?! Kinky I know you have had some support from your GP, but if I went I'd ask for anti d's and I'd like another child at some point; would they affect the foetus potentially? (Though I think I have enought to deal with currently!!)

3girlies, thinking of you. Life is sh*t sometimes. But there is hope. There is always hope.

www.lsoft.com/scripts/wl.exe?SL1=MEDULLO-PNET&H=LISTSERV.ACOR.ORG

link to aol support group - you have to send an email.

Queen I also would like another DC. I am taking ADs but I don't think much of them to be honest. One thing I would highly recommend is 'mindfulness'. Try this book: www.amazon.co.uk/Mindfulness-practical-guide-finding-frantic/dp/074995308X/ref=sr_1_1?ie=UTF8&qid=1332777374&sr=8-1. It teaches you breathing techniques. It is linked to the programme that Goldie Hawn was on MN talking about a couple of weeks ago. The theory is about rooting yourself in the present and using breathing to help you to feel calm/grounded/clearer.

I've only been doing it a couple of weeks and I do find it helpful: I've felt much brighter and more in control.

It isn't new age stuff, although it acknowledges that meditation practice has come from other world religions. It is a scientific study and the man who has written it is at Cambridge University. Put the CD onto a laptop then load it onto a phone or ipod so you can listen to it undisturbed.

ADs will not harm a foetus; my Dsis took prozac during her first pregnancy. However I do think it passes through breast milk? I certainly don't want to be on them whilst pg if I can avoid it. I honestly believe that they've made me feel better temporarily but then worse, and you up the dose, and the same pattern repeats. Nothing has changed, but then our situation isn't conducive to feeling great, really. The mindfulness is peaceful and certainly worth a try.

DD has pneumonia. More days of heavy-duty antibiotics for her then.

I should add, Queen, I have depression and anxiety and know exactly what you mean about feeling phased by silly things. I catch myself on the verge of tears all the time with things that don't normally bother me, and that's on the 40mg of prozac!

One thing I will say is that we have had a horrific time. It's like at the moment, hospital downplay it so you don't feel like it's that serious. But the reality is DD has febrile neutropenia and pneumonia, 4 bags of blood, 1 bag of platelets, feels shite, keeps throwing up in spite of anti-sickness, backache and headache requiring codeine. It is pretty serious. I feel like a zombie at the moment, I'm so out of my head with lack of sleep.

We are chugging through these experiences for months and months with our children. I'm surprised more cancer parents don't have total breakdowns when the coast is finally clear and you are allowed to focus on yourself again. It is a toxic situation: we are storing up untold amounts of stress. I keep dreaming about the time DD had to have cannulas in her feet because her arms were too bruised to take any more. It's shit. But you repress these experiences and don't deal with them because the next thing to worry about crops up before you get a chance.

I am so very pleased the MRI was clear. It is nice to hear good news.

Stinky- dd was like that during chemo, she would be running down the corridor full of life and then once her labs came back she would need blood and platelets. I could never tell when she was low as she always had loads of energy.

Queen- so pleased that the MRI was clear.

One way I have found to cope now is to take some time for myself a couple of hours a week. I only started in January and I go to an exercise class twice a week. This is my time. For two hours a week I am me and doing something that I want to do away from everything. Also, taking a good multi-vitamin can help.

Kinky, it's interesting that you say that as I know quite a few parents that were close to being sucidal a few months after treatment had finished and I know of a few marriages splitting up.

For us we were in hospital every week for over a year, this was our life we had adjusted to it and then once chemo had finished I found it hard to adjust back. DH went back to work and everyone elses lives had went back to normal. I was at home still caring for DD and DS, and I didn't know how to cope. I forgot what it was like being at home all the time. I got really tired, exhausted, I could barely climb our stairs one day it was that bad. I went to our GP who couldn't help, anti-depressants weren't working so he prescribed me sleeping pills to help me sleep at night. Think I only took a couple of them.

That's when I realised I had to be a little bit selfish and take time to myself. I made an effort to get out and let DH take over. It really does help.

DD's scan will be approaching soon again and I know I will be a wreck in a few weeks time again as it looms nearer.

I read that 92% of marriages fail after this experience. Can well believe it.

Kinky, how are things today? I knwo what you mean about seriousness of the situation. Don't be phased by the med-speak though - pneumonia is just an infection. (As is meningitis, which we had... and survived). And blood, platelets etc are just new technologies to help them through the treatment. I know nothing of febrile neutropenia, but when my DC was neutorpenic I was super careful and cautious about meeting with other children and leaving the house. We got though 1 year of 'the most intense chemo available today' without an infection (meingitis was caused by hospital leaving an unconnected splinal tap open tot he ward environment, despite my repeated pleas that somethign was leaking... oh don't get me started.

I know what you mean about dreaming, and feeling in a daze. Hospitals are exhausting places. One time my little one was disturbed when I did the nappy and stuck their finger out for obs whilst asleep. That upset me for days.

You carry so much anger, fear, frustration. It is so hard. I feel so alone; no one, no one understands. Apart from other mums who have been there.