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.

[Nocakeformeplease]

Thanks Twunk

It's terrifying. The doctors seem quite positive and I know the odds are in his favour (and I am so bloody grateful for that), but..... it means nothing if he happens to be in the minority that don't respond to treatment so well. And at this moment in time we have absolutely no idea whether he has or hasn't....

[unbuckle]

Thinking of you. I find test results very stressful too, even though i's were good i felt worse as it reminded me of the extent of the tumour. Fingers crossed for you.

[Twunk]

Thinking of you today nocake ((((((()))))))

Hope everyone else is doing okay

[Twunk]

hazlinh and minmooch hope all okay

[Nocakeformeplease]

Thank you both for thinking of us.

Just back from the hospital and it was good news. The tumour has shrunk considerably and the lung nodules aren't even showing up on the scan . Words cannot express how relieved I am. He still has a very long way to go but the news was as good as we could have hoped for at this stage.

[Twunk]

YAAAAAYYYYYY!

I'm so pleased for you.

[unbuckle]

Fantastic news, so pleased for you,that sounds as good as it could be!

[minmooch]

Nocake that's fantastic news.

Unbuckle I'm sorry you have had to join us. I am sure you will get much support here.

Sorry I have not been around much. Was away on holiday and have been hiding since I got back. I'm so tired of it all. My brother is now seriously ill in hospital and the school nurse who has helped look after Will and I has her own heartache as her DH has been diagnosed with terminal cancer. I'm tired, tired, tired of this life. I want both my sons to be leading normal lives. I want to be leading a normal life, not the life of a parent with a child with cancer. I'd give anything to have it myself and spare my child. I'm tired, tired, tired.

[Twunk]

Oh ((((Minmooch))))

I'm tired and it's been 3 weeks. I cannot comprehend how you feel. It's so unbelievably fucking unfair.

I hope your brother is getting better.

I'm holding your hand, it's not much good but I'm happy to listen.

[Nocakeformeplease]

Firstly, sorry for the me me post on Friday. I was just so bloody relieved that it wasn't bad news, but I have been thinking of you all.

Minmooch my lovely, I am so sorry. As Twunk says, having had just a small taste of what you have been living for two years now, I can only imagine how bloody tired you are, both physically and mentally. I wish I had the words to take away some of the pain. I hope that both your DS and brother are doing okay at the moment.

I hope everyone else is doing okay x

[unbuckle]

Good news gives me hope and you are right to celebrate it. We are doing ok apart from the worsening sleep and constant night feeding...Thinking of you all.

[carebear13]

Hi everyone- A huge apology for being missing in action. Trying to find the energy and time to get on the laptop is pointless. Kids are driving me nuts with the constant fighting with each other. my house is like a warzone and i feel like jacking it all in and fucking off somewhere else where i dont have to deal with any of this shit. sick and tired of the tantrums from my dd,sick and tired of having a drama queen of a son who is currently shouting at his sister that he hates her. i hate them all right at this moment in time.

i am glad to see that there has been good news no cake- sorry i didnt reply to your message , am having problems with my emails. you must be thrilled, i know i was when we were told the tumour had shrunk to nothing.

unbuckle&twunk- the hair loss is so hard, i hated going out with her to start with as everybody kept staring, imogen wasnt bothered at all, but i was and we had quite a few comments too. its a bit easier now, but i find that i try and avoid eye contact.

She has responded much better to the vincristine this time, but when she starts the next block of treatment she will be having much more, and the erwinase is a nightmare as it involves LOTS of injections. the next round also sees the return of the dreaded lumbar puncture so no doubt lots of instays will follow. we managed a full 3 weeks out of hospital this time until she spiked a atemp and puked.

Like you all i am so tired at the moment, think my anti despressants arent working as they should be. i feel so angry all the time and not sleeping very well either. my tolerance level is at an all time low, think it may be time for me to book into some counselling session, the diana nurses have been tyring to convince me for a while now.

Good news is that she has been awarded her dla.
bad news is that hubby managed to prang the car and we are waiting to see if it is repairable or a write off and in the mean time we have been given a vauxhall corsa. wtf!!! we have a kia sedona for a reason. screws us for a day out at some point over the bank holiday!
fuck fuck fuckity fuck. GGGGGAAAAAHHHHHH.

[unbuckle]

So sorry things are so shit. Cancer is shit enough by itself without everything else to worry about.

[Twunk]

I think around this time in the holidays the children start to grow horns and a tail. We're all at the end of our rope - and I know from friends who haven't got our worries that they're feeling pretty run down too. Be kind to yourself Carebear ((unMN hug)). I have sent DS1 to play at a friends twice a week and that has helped no end, but he's still a PITA a lot when he's here - boredom (mine too).

I think counseling session good idea. I was coming off my seroxat when all this happened - obviously I knocked that idea on the head, but I do need to keep an eye on my mood too.

[Twunk]

I hate cars! They're such a worry. I hope you get yours back soon.

[minmooch]

Sorry I have been MIA too. Feeling very down about everything. Got a SW visiting to discuss end of life care at home for my DS. He seems ok physically at the moment but I suspect they think if he deteriorates he will do so quickly. He's struggling at the moment and wants to shave his hair off, says he hates it ( its very fine since it grew back and even more so over scars and where he had radio). MRI next week and I'm very frightened of results.

I'm tired, tired, tired and eating chocolate like its going to be taken off the shelves.

Sorry lots of us are struggling. It's a very hard road to travel.

[unbuckle]

We were offered counselling too but i tend to think i don't want someone to be nice to me, i want someone to treat my sons' cancer. I don't think i'm ready to believe it is my feelings that need to change, i just want the bloody thing out... I have the opposite problem to you with the kids - my maternity leave ended a few days after he was initially discharged from the marsden so i am working 4 days with chemo the other. I can hardly bear how much i miss them. We have 5 so going from 14 months looking after them all to sitting on my arse all day is horrific. Of course if i was home they would be driving me mad..

[unbuckle]

X posted with minmooch so missed your post. Really sorry about that. God that must be really hard, I can't imagine what you are going through. I guess you can only hold on to him being physically strong right now. Must be hard not to try and anticipate the future though.

[Nocakeformeplease]

Minmooch - I am so so sorry my lovely. I can only imagine how hard even arranging that SW visit must have been. It's so bloody wrong that you should have to. I wish there was something I could do or say to comfort you. I hope you have plenty of support. Will be thinking of you next week.

Carebear - I'm sorry everything is so difficult at the moment. It's so draining isn't it. And I only have the 2! The not sleeping must make everything seem so much harder to deal with.

Unbuckle I tend to feel the same about counselling. All I want is for someone to promise me that DS will be okay and of course they can't do that. Having said that I offload a lot on my mum and sisters - perhaps if I wasn't able to do that I would find it quite helpful and I guess sometimes its easier to talk to someone not personally involved. How is Isaac doing anyway?

Twunk - hope things are going as well as can be expected. Is your DH feeling any better?

My sister was down last week with her DD. DS was on brilliant form, better than he's been for ages and they had such a lovely time playing together. It was a great distraction. They went home yesterday though . Now they've gone reality it setting in again. It's a week tomorrow until DS's OP. I am terrified.... or rather I am when I let myself think about it. Most the time I am burying my head in the sand and pretending its not happening.

[Twunk]

Minmooch, Nocake put it so well. I wish you all the strength and love in the next few months, and that your amazing son is as comfortable as he can be.

Nocake I feel like that every time my mum and/or dad leave. Them being here gives me more energy and drive. The rest of the time I am an exhausted wreck.

I was wondering when the operation was (I thought August, did they move it?). It must be terrifying, but you will get through it xx

[unbuckle]

Hoping you all had a peaceful bank holiday weekend. I is still doing well although his abdomen looks to me as if it is swelling again (apparently it isn't, perhaps he's just getting thinner). He's pencilled in for surgery on 16th which i am preemptively panicking about - it must be hard, nocake, with it being so close. I find being an inpatient so frustrating and dehumanising normally, i can understand your nerves and have been thinking of you.

[Nocakeformeplease]

Yes Twunk, it was originally planned for 21st August but due to his chemos being switched about because of infection/low blood counts, it's been delayed - they also mentioned in passing that the surgeon is on holiday until then but assure me that's not why . Im very, very scared but just want it over now. Actually I'm not too bad during the day - both DC are what you might kindly describe as a bit demanding at the moment so not much time to think (DS seems to think I am his personal butler come slave at the moment which I guess isn't too far from the truth ). It's night times I find hard - I look at him sleeping beside me and my heart breaks.

Unbuckle It sounds ridiculous but I was always too scared to look too closely at DS's stomach as I knew I'd convince myself that it seemed larger. I'm glad you have a date through for I, I hope the lead up to it isn't too stressful. Ill let you know how it goes for DS so you have some idea what to expect.

minmooch - I read on another thread that you're in hospital at the moment with DS. I hope everything is okay - thinking of you x

Hi to everyone else x

[whatagreatname]

nocake and unbuckle - I think i am right that both your dc's are being treated for Wilms tumours. My dd was treated for a Wilms in her right kidney age 2, she is now 9.

If you want to ask anything, particulalry about the op, then please do pm me and I'll see if I have any useful info.

[minmooch]

Yes Nocake we are in hospital at the minute. DS had a high temp on Monday evening and by 4:00 am Tuesday I had to bring him in. Infection markers are high but they can't find where it is. He's much chirpier today so hopefully we might be discharged later tonight or tomorrow. MRI scan on Saturday so I hope we can go home so he has a chance to sleep at home for a few days. We have managed for a long time without any hospital overnight stays since our long 5 and a half month stint so we've been lucky in some respects. However, I want to go home - I know you will all understand.

Much love to everyone, sorry I'm not able to give much support at the moment - I'm all rung out.

[minmooch]

No way are we going home :-( temp spiked and CRP counts have jumped. Chest x ray being done in the next hour and hourly obs overnight.