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.

I'll PM you before with my details.

Thanks. We should hopefully have gone home by then but he is having a scan on Thursday that I think is going to last all day so we will be around.

I hope the next few days are okay. I will be checking in regularly .

Hello everyone. I hope that you and yours are all doing well. I decided to take a break from here as I think my experiences are now just a bit too old to be of any help. We are 17 years on so I am probably well out of date to discuss treatment regimes and the like so I'm not sure how much I was actually helping.

But I just want to wish you all the best and to let you know that you are all still in my thoughts. Trazzle's thread kind of brought me back here as she is in the same hospital that we were in and her DS is probably being treated by the same team as I know they are all still there. Much love to you all x

Busters I shouldn't really be here either as its dh rather than my kids, but I'm sure no one minds much.
I'm sure if you ever want to come here your be welcome x

Thanks lisa appreciate your comments. I would love to be able to help through my experiences but it's so long ago now. Then again I guess coping with this situation never really changes, it's only that treatment that does. We all have to try and cope whatever they throw at us. Be it 1995, 2005 or 2012. Thanks x

busters and Lisa - as far as I am concerned youare both welcome. This is a support thread, emotionally and practically. Although we can share medical experience none of us profess to be doctors. We also know that treatment for one child/adult can be completely different to another going through the same and changes all the time due to research and trials.

We are watching loved ones go through something horrific. It's frightening and lonely and I will accept all the support I can get.

My hand is always available to hold others' but I leave it there and will gladly accept a squeeze from anyone :-)

Ta Minmooch wine had been taken last night so hope I didn't sound too daft! Have a squeeze from me x

Everyone is always welcome, whether treatment was a while ago, or now, or whether it is your child, your husband, the child of your friend or relative... etc - you get the idea . The fear is the same, the not knowing what to do is the same. And I really believe the more experiences on here the better, as it makes us better at supporting people. It is such a shit and isolating experience, that it is good to have lots of people here to hold your hand should you need it - whatever the circumstances.

I am very grateful to ALL of you .

This maybe upsetting but have any of you had a discussion with your children about what this could really mean? For my son it looks like life with a permanent disability or the worse case scenario.

On Saturday night the two of us started to watch a film and it began with a woman in hospital, obviously dying. My son, in a very tiny voice, told me he couldn't watch it, please turn it off and was tearful. Of course I turned it off and found a funny film fir us to watch. I couldn't sleep all night for worrying about him worrying about death . I thought I must be brave and talk to him, not leave him alone with all this in his head. I tried to talk to him about his fears, how it made him feel etc that he could talk to me about anything, no matter how upsetting. He didn't want to talk but spent yesterday every couple of hours telling me he loves me.

Fucking bastard cancer - how can it do this to a child? I am so angry and upset that my child is having to endure this

min I know my DD felt like this, and I got the social worker to have chats with her. She could tell her that she was scared - she didn't want to tell me as she worries about me .

As far as life being changed, DD is ASC (high functioning) which means that her common sense and life skills are rubbish. As soon as I found out that she is Aspie at 10, I have always had it in my head that she will be with me through life. That is not to say that I won't encourage/let her be independent. But, I am ready for the possibility that she will live with me and so is DH. The cancer and any subsequent complications are now a new factor, but the autism always made me think life would be hard for her and I would have to look after her (moreso than for a neurotypical child).

It is heartbreaking.

I don't know how it would be to have a fiercely independent older child, who is completely 'normal' who then gets hit by this shitty disease. It must be so tough for you both. DD didn't have a social life, didn't have lots of friends - that's not to say she didn't want this for herself though, and she gets incredibly fed up with her life. She does have a network of people online, so I let her spend the time she wants chatting on there. She has met two lovely friends on there (one is Aspie herself) and that has done her the world of good.

Kinky I didn't know your dd had asc as well. Both my DDs have a dx of autism and while dd2 was too young when this all started, dd1 wasn't. It's a very different way if managing it. She's never really discussed how she feels about dh having cancer but we did get her some children's books about it which seemed to help.

Holding everyone's hand today and always x

It is hard as she can't express how she feels about it in the same way that other teenagers would.

And don't even get me started on the time they sent her home whilst she was still very, very poorly because a different doctor asked her how she was and she said (her stock answer) 'I'm fine'. Because I wasn't there, they sent her back to me with her grandparents, who were flabbergasted, and she was back in an hour later with a fever.

They do not know how to deal with her, and they think I'm pushy because I answer everything for her. They don't get that she can't, and that she has to be asked things very carefully.

How are we all?

My son is finding this week of CHEMO much harder than the others. It's no different but he is just sooooo tired. He is frightened that more maintenance CHEMO will just get worse and worse each month. He so wants to go to school bless him.

Scan is booked for 2 November. The countdown begins and then the horror wait for results. And then the results.

Fucking shitting bastard cancer. My language has certainly deteriorated since cancer landed.

Oh min my sympathies go out to you and your DS.

min I am here and available for hand holding. I have no idea what it will be like, to be waiting for that. DD will have a BM at the close of chemo next April, and that will be my dreaded countdown. I am seriously thinking of getting some sort of punch bag for the lead up. I think hitting something and shouting might be quite cathartic. Swear all you want. It is a fucking shitting bastard disease. There is no other way to describe it. Sending you much love, and always around if you want a chat.

So, finally after months of having iron overload, they started taking blood off DD. 500mls a month, which doesn't sound like much but her chemo has hit her much harder this time.

Anyway, when we went to see another Dr, found out her ferritin levels had rocketed. This is the marker for iron. They are still very 'wait and see' about it, but I am getting concerned that it will be laying down in her organs. It has already started to show up in her liver. Her count was about 3000, when it should be 300 or less, and now it is over 4000.

And they've decided since her counts have held for the past 8 weeks that they will put her chemo back up. We've finally managed a couple of months out of hospital, and I was really hoping we were getting on an easier path.

Worried. And the cracks are starting to show, I think, trying to do everything - be normal, work, deal with life and all the time having this nagging fear in the back of my head that it will all go horribly wrong again... I feel sick all of the time.

What was it you said, min? fucking shitting bastard disease

Oh Kinky the worry is endless. When they are doing great you/I worry that the CHEMO is not doing enough and then they want to up it which you know means they will not be so great.

It is good that your DD's counts have held, her body is coping with that aspect, but it's hard when you know it will make them feel poorly to increase.

Glad they are taking action to try and reduce her iron levels. By taking 500 mls a month how long do they think it will take to bring it down to a more acceptable level? Or do they need to increase this level over time?

My son had dangerously high creatinine levels on one block of his CHEMO and went into beginnings of renal failure. It seemed an agonisingly slow time for them to sort it out and to bring the levels down. It has reduced his chances of having an extra CHEMO added into the mixture as his kidney function has not yet recovered enough. Fucking medicine does as much, if not miore, damage to their bodies than the disease.

You are not Superwoman - you cannot do it all. Be kind to yourself as you need to be strong for your DD. In your list of things you do are there any that can be just left, handed to anyone else? I know I find it hard asking for or accepting help as the things I do manage are the things I am able to control (albeit make me knackered etc) and I have no control over my sons disease.

I let go of an unhappy marriage (spineless, cold hearted shit of a husband) and that relieved me of some stress. My cat has gone missing (had her for 4 years) and have done all the posters up, asked neighbours, told vets etc, been out calling for her noon and night - but now I have to let her go and can't let myself cry over her disappearance. I can't allow the sad emotions take any more energy from me. Actually I am more upset at my cat going missing than I am over my divorce! I think what I am trying to say is we have to let some things go in order to survive, it could be practical things- ironing, cleaning etc - or emotional things. We need to keep what strength we have intact if possible.

I think the 'nagging fear' will always, always be with us and that knowledge alone is enough to make you tired.

Fucking shitting bastard cancer indeed.

Much love as always xxxxxxxx

Thought I would write this separately but yesterday my son had the best day he has had in nearly a year! By 7:30 am he had his iPod blaring out loudly! In a normal family situation this would not be tolerated at 7:30 in the morning but I was delighted that he was doing something teenagerish! He was even dancing in his bed (lying down dancing but dancing nonetheless!). He walked around the house unnecessarily, by which I mean not just bed to sofa, sofa to car, car to wheelchair, but actually walking around the house, bent down to pick something off the floor (never thought I would be pleased about such a taken for granted action!). He went to school fir one physics lesson and instead of getting out of the wheelchair and straight into his seat he actually walked around the lab, helped set up the practical equipment, got out the laptop computer from an under the counter cupboard - no mean feat with ataxia, double vision and no proprioception! His physics teacher told me how wonderful it was to see him walking in his classroom as he had not seen him do that for over a year!

He's not up yet this morning so don't know if he has the same energy levels as yesterday but it felt amazing to see him like that. I so hope it lasts for him. Go William go!

That's brilliant news min!! I hope this is things looking up for you all.

(I'm really sad to hear about your cat, but I don't want to detract from how pleased I am to hear about your DS)

min that sounds wonderful! How was your DS today? I hope he wasn't too exhausted after his efforts! Sorry to hear about your cat. I have 2 and am beside myself with worry when they take it upon themselves to disappear - even if it's because I've locked one of them in the garage .

Kinky I actually don't understand a lot about what you have written, but I hope that your DD is ok and that this isn't too additionally problematic for her. I know I'm still extremely new at this, but I'm here too if you need me as a sounding board.

Thanks trazzles. I hope things have been okay for you today, and that you are feeling a bit better.

Hi everyone,

Just bumping as I keep losing this thread!
Hope you are all OK

Queen

QueenMarigold
You don't need to bump - just click on "Watch this thread" and you can then find it in "Threads: I'm watching" for ever!

It's 5:15 am and I am lying awake listening to the rain. I can hear youngest son snoring (or is it the dog?) and eldest son talking in his sleep (plus his feed pump whirring). I don't feel anxious and that feels weird!

DS has had 5 good days on the run - energy levels still high, sickness manageable, chatting non-stop! He even went back to school last night as there was a new parent evening and he wanted to help out in the electronics department!

The one thing worrying me is that DS is madly buying Christmas presents and wants to write his cards and wrap them all now. I am frightened that he thinks he's not going to make it but then he often says things like "When I grow up I want to ......" so maybe I am putting my fears onto him?

Kinky how are you? Are you feeling any stronger? I hope you are being kind to yourself. How is your DD?

I am thinking of watching Stand Up To Cancer night on Friday but worried that it may be too emotional. DS wants to watch it but I worried it may upset him - guess we will just have to see how it goes.

DS is organising a cake sale with funds raised going to cancer research uk. I have decided we can sell other bits A's well so the house stinks of vinegar )just made 20 jars of piccalilli! Going to infuse some oils and got 20 bowls ready for Xmas puddings! Mad? I think I am!

Much love to everyone xxxxx