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.

Daisy wonderful news. You deserve to sleep for a week xxxxx

Kinky - I get life being one big battle. And there seems to be no let up now end in sight - bone deep tiring. There aren't any words to make it better. Xxxxx

Trazzle there is always so much to take in and the horror of the information is unbelievable. I still feel shocked at the hideous things/outcomes/side effects we have to discuss about my son. It is beyond comprehension. I hope you get some relief over Christmas.

I am just tired and fed up. What's new?

Fucking bastard cancer.

min it's true. I was talking to one of the nurses today and saying that its a relief really not to have to choose whether or not to give him the high dose chemo and go through the horror of the stem cell transplant.

If we do it, he might die.

If we don't do it, he will die.

What choice do we have? None. It would be so much worse if we actually had to make a decision on what's best for him.

Bastard cancer from hell.

I hope your Will is feeling a bit more positive today.

Sending much love to all of you.

I am pleased you got good news daisy. I hope you managed to get some rest.

trazzles if you ever want to meet up for a chat, let me know. It is an awful lot to have hanging over you all. Thinking of you, as always.

min hope you are okay today?

Remember, if in doubt - Baileys.

Hi all.

Having a lazy weekend. My boys have gone to their Dad's and I was meant to go to a girlfriend's but decided I just needed some time at home alone. I have watched an inordinate amount of crap tv and will continue to do so today. I will just walk the dog, do some shopping and then put my tv goggles back on!

Hope everyone is as ok as we can be.

Crap TV is the way forward. I worked my way through a load of really shit films on Sky and it was blissful. Hope you are rested min .

I have a big meeting at work tomorrow, then start back on Weds.

Still up and down, so keep your fingers crossed for me.

Kinky how did your meeting go today?

Will had chemo yesterday. Last one made him horribly sick the next day - at least 8 times. Today only the once so fingers crossed it is gentle on him this cycle. He had put on more weight even with his nightly feed having gone down so I feel really pleased.

I have felt relaxed enough to sit and read my kindle (haven't touched it in at least 8 months!) and as Will had no school today we have just sat and lazed around today (although I did make a shepherds pie earlier). Feeling more chilled than I have done in over a year and can't wait for Xmas holidays so we can have more lazy days!

Sending love to everyone xxxx

Hi all.

Sat on the ward for our 7th cycle. First lot yesterday made him quite sick for the first time. Hoping he isn't sick again today. He has managed to throw up on every bit of clothing we have :(

Spoke to the consultant yesterday and found out it is almost guaranteed he will his bladdr and prostate as a 90% reduction isn't enough :( Also means a 7hr journey to gosh for us after new year. Just concentrating on the sickness for today...hope it disappears so we get home tomorrow morning. xx

Big hugs Daisy it's all so distressing. Especially at this time of year when every body else is just so happy. I am sorry that the reduction is not enough and they will have to remove his bladder and prostate . As if their bodies do not have to go through enough already

I hope that this cycle is as gentle as possible so the you get home tomorrow.

Please be kind to yourself.

Kinky - I have been thinking about you today. How did your meeting go and your first day back at work? I hope everybody was kind to you. xx

It was okay, min, thanks. Meeting was better than previous ones... still meh though. I feel very done in - I just want to click my fingers and for life to be normal. Fat chance. I am also beast-wrangling a very excited 3 year old who is 4 on Sunday. A birthday and Christmas within a couple of weeks - I think he might explode .

Daisy I am so sorry to hear your news. I really hope he is okay today and you manage to get home. I am thinking of you all. I hope you are getting some support in RL as it sounds hard going for you all at the moment?

Should have said to you min. It's nice to be thought of. I hope you are okay?

Thank you all for being there for me...you are all so lovely :) xxx

Thankfully the sickness eased and we got home. No sickness since, so that's good. We found out that because his weight had gone up by a kg they had put his chemo dose up by quite a bit.

Consultant phoned on Friday with some news. After telling us that the baby would lose his prostate and bladder, he had a meeting with the surgeons and oncologists in UCL and GOSH, and they reckon it HAS shrunk enough to take his prostate only, and do brachytherapy. So as far as we know now, he has his 2nd last chemo 2 days after New Year, then wait for his counts to recover and go down to GOSH for a camera in his bladder, then all being well, surgery and brachytherapy. I don't even know what to think anymore. My brain hurts. I get told one thing, then the next breath something else. This life is trying to break me, but it will not succeed!!!

How is everyone else? Anyone else not even started xmas shopping? ;)

How are things now daisy? I'm sorry I've been away - now I'm back at work, it has been pretty relentless.

The thread is nearly a year old!

I hope it has been of use to you all. Much love.

Hello everyone!

daisy that sounds like better news but it is all so exhausting. The responsibility, the relentlessness if it all, the horror of it all - truly exhausting. Take it one day at a time is all I can suggest. Looking too far forward is tiring too as you get tired going round in circles, if this happens we can do that but if not we have to do the other. It's good to know options but at the same time until you get to that point there is nothing you can do. Many hugs coming your way xxx

Hi Kinky hope being busy at work is a good thing. How's your DD doing? And how was your DS birthday? Hope you are on Christmas hols soon and so get some 'legitimate' time off to enjoy xxx

As for us we have just finished the school term. I am so proud of DS for being back at school for a whole term - only part time but by God what an achievement. I am so knackered though and very tearful at tiny little things. Have been in bed at 8:00 pm the last few nights as am too tired to even lie on the sofa. The dog has been ill with kennel cough and that sent me into an anxiety panic. Having checked with 4 vets it is not transferable to DS but as a precaution I need to keep them apart. No walks for dog for two weeks to speed his recovery. It's forcing me to rest a bit more as trying to fit in a dog walk everyday on too of everything else was just compounding my exhaustion. Having a few days if rest for us all will be good.

Have spent way too much money on Christmas so far! Last year in hospital so I feel I have to make this one a million times better! Haven't wrapped a single present yet and that's the bit I hate! Have bought myself a few pressies and just hope I win the lottery to fund it all! I normally save the Quality Street for Christmas Day and after but we have already fine through one tin and about to start another ! Eating too much chocolate gives me thrush (apologies for TMI) so I am very uncomfortable but it's not stopping me eating!

DS is doing well and he managed on his last day of school to get a girl's phone number! He said to me it was the bravest thing he had ever done asking for her number! Oh how he forgets his bravery fighting his cancer every day of the week! Made me smile though!

The boys are going to their Dad's for 4 days after Christmas and I have bought two box set of tv series - so I plan to do very little but just rest. My world is very small at the moment and my own life non- existent but what do you do? On the days I don't have the boys I am torn between doing things so I do have a life and just doing nothing as I have no time to just rest with no responsibilities.

This thread is very helpful to me Kinky. Sometimes I hide from it when I want to pretend all is OK but I am very grateful that it is here as there are few places in RL where I can say things as they are, or vent or cry with those that truly understand. I feel that even over a year into this cancer shit I am so full of anger, shock, disbelief, sadness, horror. I am grieving the life we had before cancer struck, grieving the life my son should be having and grieving his future life ie letting go if some of the hopes and dreams we had for him. It is just totally shit and no child should have to go through this. And that goes for my other son sho also has to go through all this too.

Anyway, it's a lifeline that I am very grateful for - even when I am hiding from it for a few days.

Wishing you all gentle days in the lead up to Christmas. Whether you are at home or in hospital Christmas is now different for us all.

Much love to everyone xxxx

minmooch your post has just made me cry! Firstly for your son getting the girl's phone number and, secondly, because I relate to everything you have just said about your emotions over the year. My little boy was diagnosed in January this year and I just cannot believe how all of our lives have been chucked about (I am windywendy by the way)

I am wishing you all a very merry Christmas and a better 2013 for us all xxx

Tabitha bless you! It's a horrible 'journey' (I hate that expression). I hope you manage to have a peaceful Christmas.

I hope everyone manages a Christmas Day at home, those in hospital I hope it's as gentle as possible. Wouldn't it be nice to a few days 'off' from the worry, horror, responsibility of it all.

People say try and be grateful for what you have - god that makes me feel so stabby! Somebody else said some good will come out of this - WTF? I was speechless. And then somebody else once said is it worth putting him through all this dreadful treatment? I had to walk away otherwise is currently be doing time for murder! What is it with people?

Luckily these people are outweighed by the many wonderful friends and family that I do have. Plus the kindness of complete strangers. I wouldn't have got through the last year without those.

The house is lit up like Blackpool illuminations, all the Christmas shopping has been done, presents bought but not wrapped. And yet I don't feel Christmassy - I just want to weep. I keep thinking what else can I do to make this a fantastic Christmas? When all I want to do is sleep and weep. And my son wants to sleep. And my other DS just wants to party with friends and sleep all day.

Aaaaarrrrgggghhhh! This started off in my head as a peaceful Christmas message but has turned into a long whinge.

Ok, let's shake this feeling off, and paste on that smile!

I truly wish everyone a peaceful Christmas xxxxx

Hello all, popping in to say am thinking of you all at this time of year especially. And also with regards to the news story at the moment - it is never as simple as some people seem to think it is!

I went back to the dentist yesterday after ten years - I was completely phobic, I managed it by thinking of Aillidh (and all the other children on the unit) and how brave she was and all the things she endured I decided I really should get a grip about the dentist! Last Christmas I went up to the unit on Christmas morning to see her and expat. This year I am going to visit her at the cemetary - expat is in America and I said I would go for her.

Much love to you all x

Hello, I'm not on this thread but I just wanted to wish you all strength & a little peace if at all possible this Christmas. It must be unbelievably draining & I sincerely hope 2013 is kinder to you all x

Thank you Mammykaz for thinking of us.

Giraffes that will be a great support to Expat

Xxx

Sorry I am of no support whatsoever to anyone here, and use this thread to moan...I do think of you all, and all of our different situations, and I am sending love to you all xxx

Since the consultant phoned last week I have had this going round and round in my head. All along we said we hoped more than anything that we could have "just" chemo, then surgery, and being honest, when the oncologist told us last week the tumour hadn't shrunk enough to have brachytherapy we were relieved. Yes, it would be more radical surgery, but it would mean no side effects from the brachytherapy. Then he dropped the bombshell that we would be able to have brachytherapy near the end of jan, meaning he would keep his bladder.

We have researched it more, and brachytherapy means that if the cancer did come back later on they wouldnt be able to do more surgery. It means his bladder would possibly be incontinent, more risk of infection for him, his urethra would shorten, more than a week of general anaesthetics twice a day (I breastfeed him so it would mean problems with that)...surgery and no brachytherapy means more invasive surgery (ie taking out his bladder and prostate so they can get a clear margin round the thing), and whatever risks with the surgery....I dunno, I just have it in my head I only want him to have the surgery. Something is telling me that is the best plan. I'm dreading going up for our 2nd last chemo in the new year. I know the oncologist will try telling me that brachytherapy will be amazing (even though the day before he told us surgery will be great and he will be ok after).

Do I get a say in the final treatment? Will they listen to me only wanting surgery or will they say they know best and go ahead with it anyway? How on earth do you tell them what you want? It's doing my head in trying not to think about it :( Feel like I'm going crazy :(

Oh Daisy it is all so frightening. I had to look up brachytherapy as it is not used for my sons cancer. I have no experience if this but I would suggest that you talk further with your consultant about the pros and cons for having it or not. Have these conversations as many times as you need with the consultant so that you understand it as much as you can. It is so emotive for us as parents that it is very difficult to make a decision knowing that there are side effects and possible long term effects from these treatments. I trust my sons consultant and I trust that he has many conversations with other consultants around the world as they discuss the most appropriate treatment for each patient and for him. It is good to feel trust in your consultant but even if you do it is ok for you to ask for a second opinion and a third. You are trying to make the best decision for your child and your consultant will understand every concern you have and should do everything to help you make these decisions.

I hope you find a way to come to decisions that you can accept.