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.

Hi everyone, just wanted to say hello and I hope you're all doing well, avoiding hospital and getting to enjoy the lovely weather. Welcome 3girlies, I'm so sorry to hear they have given you a discouraging outlook but for what it's worth I'm crossing my fingers your DD will be one of those who eats the odds for breakfast and comes out the other side fighting like hell and ready to enjoy all life has to offer. Big hugs to you all.

Another child died on our ward.

I'm feeling so low at the minute, really struggling.

So sorry to hear that, Kinky . Thinking of those poor parents. No wonder you're feeling so low. It hurts so much when another child doesn't make it and it brings all the fear you normally hold inside rushing to the surface all over again. I hope you can get some time for yourself to have a good cry. I hope your DD is improving now? Big hugs to you

Oh what rotten news Kinky. That poor family.
I hope you've had a chance to have some time to yourself to process it all.
Is dd any better?

I guess I need to join here. My 16 year old son (15 at diagnosis) was diagnosed with high risk medullablastoma - brain tumor on 1st November 2011. He had had a week of slight headaches and felt he was slightly wobbly. I took him to the Dr on Thursday to get him checked out, he sent bloods off (came back clear on monday) and he said it was probably just a growth spurt. On Tuesday morning at 4 am he was being sick, but with no sick smell :-(. I took him to A&e at 11 am and by 1 pm I was told he had a tumor in his brain. We were rushed to a specialist neuro hospital. On the Thursday he underwent an 11 hour surgery to remove most of the tumor. This has been followed by 6 cycles of chemo. MRI scan showed tumor had not shrunk but not grown. This was followed by 4 half weeks of twice daily radiotherapy. After 4 half months in hospital we have been home for two weeks. We have another two weeks before chemo starts again

It is a living nightmare watching my son suffer. I have another son who is coping amazingly. My eldest son is a true inspiration - he faces his fight with amazing strength and determination.

Huusband (boys step father) is not coping and is running away from the situation as fast as he can. Our marriage will not survive this as I will never forgive his coldness, cruelty to me during this time. He is currently in the south of France on a 4 day jolly with his mates.

I can only concentrate on getting both my sons through this ordeal.

Hi minmooch and welcome. I'm so sorry about your DS's diagnosis and that you're getting so little support from your 'D'H in the middle of this nightmare. That hust be so incredibly hurtful . I hope you will get great support here, there are a good few of us here now. My DD just finished 2 and a bit years of treatment for leukaemia (ALL) in October. I also hope that your DS's next scans show big progress. and a big

Minmooch, what a dreadful time you're having. I'm so sorry for you and your boys. Your son's treatment is moving really fast. My son had the same diagnosis in September (although his tumour was average risk), he's had the tumour removed, 6 weeks of radiotherapy and is just coming to the end of his 2nd cycle of chemo.

How is your son coping? I'd imagine at his age he has some sort of idea about how serious it is.

Keep strong. Focus on your boys and getting ds1 through his treatment. Do you have other support from family and friends?

Minmooch I'm so sorry to hear about the tough time that you are having. I was also going to ask about your wider support network? How is your son atm? You are right, it is a living nightmare and so few really understand how painful it is. What will you do about 'D'H? I must admit, in your shoes, I'd be very tempted to have the locks changed by the time he came home from France, although I realise life is never this simple.

DD is out. She has viral pneumonia so once her temperature was normal again, they sent her home to wait it out. She seems quite bright at the moment, though last bloods showed she is still very neutropenic (0.14), so we can't do a lot until we know she's recovering. She's still off chemo. We are still waiting for MRI for other condition, yet to be diagnosed. I'm losing track of all the things she needs .

Thank you for your welcome and I am sorry that any of us have to be here. Surgeons were not able to remove all of my son's tumor - they stopped when they felt it was too dangerous to continue. He has had a terrible time of it all - having to learn to walk, talk, swallow etc. Before he had much time to recover chemo started. Part of this has caused him to go into acute kidney failure - and this now impacts on the chemo he can have in the coming year. Before he could recover from chemo he was hit by radiotherapy. Its all been so hard and now we are home it is just as difficult but in different ways. Now I feel anxious all the time incase I miss something. Today he has been horribly sick and I worry that he will get dehydrated which is not good for his kidneys. Have the community nurse coming tomorrow so I will get her to do full us&es just to make sure.

What to do about husband? If I had the money I would walk out. Have I got the energy to divorce him? Have I got the time to visit houses, talk to solicitors? I can't imagine staying with him and forgiving him his attitude. Who leaves their wife at a time like this to go on holiday with his mates? He did not ask what I would do with the dog, if I had food in - and he knows that my son cannot even go to the toilet by himself so there is no way I can leave him to walk the dog/shop etc.

I have good friends and family luckily but they all have their own homes to go to. Today has been a very tearful day.

Kinkydorito - glad your daughter is out of hospital. Hope her counts start to rise soon.

minmooch it certainly sounds like he's really been through it. Does he have counselling? Do you? We have a Macmillan social worker who has been brilliant. We're at LGI; as soon as a child/teen gets a diagnosis, the family are assigned a social worker. She's been to our home and had some long, private chats with DD about the things she's worried to say to me.

I'm still in the process of finding somebody to talk to for myself. I never bought into doing that before, but I realise I've been repressing so much worry that I may explode at some point. Instead I have eaten LOADS and gained 3st, which isn't helpful to how I feel about the world either. I also get very bad bouts of depression and anxiety, which are tough. It's hard to stay okay when you are dealing with so much, and seeing your children (both patient and siblings having to cope) go through so much.

Do you have an outlet? Do you ever get a break?

Clic have CRB volunteers who can give you respite for a little while. I know it's difficult to take a break, as your mind will inevitably be with your son, but you need to try.

There are no words to describe what a shitbag your husband is. But, I understand that now is possibly not the best time to have to deal with that. I am not surprised you have had a tearful day. I am thinking of you, and sending many, many hugs.

should say CRB-checked volunteers

Just to add we have had free counselling from a clinical psychologist through Maggies. If you have a centre near you then it may be worth popping in even just for a cup of tea and a friendly chat.

Hi all, hope everyone has had a good Easter and all the children have managed to eat plenty of choc! Ds has eaten some, but his appetite has diminished a little since he had a cold a couple of weeks ago.

So we're just about reach cycle 3 - can't believe how quickly it's going and how well he's coping with the treatment. So far he's been neutropenic for about 2 weeks of each 6 week cycle, a bit tired and suffers stomach cramps after the chemo. Apart from that he's been fine - at school pretty much every day since half term.

He's got his GFR - kidney function test tomorrow, then admitted for chemo on Wed.

That's good news Stinky.

DD is feeling a bit better, but is going for vinc tomorrow, so chances are will be feeling worse again quite soon as she is very affected by it. We are STILL waiting for the MRI to find out what else is going on with her.

I'm feeling wiped out at the moment. I've piled weight back on over the past couple of weeks, and I'm dreading going back to work on Monday as I'm not feeling very stable. I think the combination of the pneumonia/girl dying/finding out another child we know has had some bad news on tumour front is really getting to me. I'm not sure what to do. I'm getting really weary.

hi kinkyD,

Sorry you are feeling so bad. I too piled weight on; it sort of comes off then it all goes back on again doesn't it. I don't know why they call it comfort eating; cos it isn't.

You are not stable because you are totally exhausted. This is such a tough long long road. Try to not to think the extremes - that it the way of depression, for example X ALWAYS happens to me X NEVER happens to other people. The reality is, some bad things happen to some people some of the time and it is pot luck. Unfortunately, you, I and others have had experience of how truly terrible life can be, there's nothing like a child dying or suffering with pneumonia to bring that home is there. Life is very very harsh sometimes.

I'm also feeling unstable as you know; I think I'm a bit paranoid but have noticed my little on ebign left out of things recently. Partly cos can't keep up due to tiredness still but also I think that I am a v depressing person to be around right now - not nice. I think people's patience runs out quite quickly and they don't want to hear my problems. So in order not to alienate myself totally I am going to try not to talk about it all.

Hope you get some sleep before Monday. I take herbal tablets and they do help during the witching hours of 2-5am, I'm in the habit of waking up for the 2am obs I think!

Hi kinky, I agree with queen, exhaustion is really hard on you. I used to be awake from about 3-6 every morning and the be fast asleep at 7 when I had to get up. Are you taking a multi-vitamin? I found berocca to be very good and gave me a boost during the day for the tiredness.

On the MRI front, can you give them a ring directly to see when your dd is booked in for? I have had to do this a few times to see when dd is scheduled in for if I haven't heard anything.

Bump

And thanks . Still feeling shit.

Hi ladies, just wanted to send out big supportive hugs as your all going through so much with your dc. I still read this thread even though ds was mis diagnosed with lymphoma in January as you gave me so much support at that terrifyingly uncertain time for which I will always be thankful to you all. I wish I could repay the support I really do.
Wishing all your dc s better health and all you amazing mums the strength to get through each day x

Hi Hammy! How is ds now - is he fully recovered?

Kinky, I'm so sorry things are still shitty for you. Is dd feeling any better? Will going back to work help you at all, or just make you feel worse?

I'm not too great at the words of wisdom, but am thinking of you and hoping things get better for you soon.

Hi stinky feet, ds is fine freaks out when we have follow up appointments at hospital but understandable bless him.
How's your ds chemo going? Hope he is ok.
Kinky - how are you doing?
Thinking of u all

How's today been so far kinky? Did you make it back to work?
I'm STILL awake all night ! aarrgghh!!

I'm so anxious all the time - this morning DD said to me 'my arm hurts mummy'. She's a little kid, that's the kind of thing they say. But me - I turn it into cancer don't I?! Mentalist!

Child who had bad news has died today.

He was 4.

I just feel so helpless all the time.

I just wanted to say, there is a really good summer camp for children being treated for, or recovering from cancer - its called the Over The Wall Gang Camp and they have a week at Bryanston school in Dorset. Its based on the US version of the camp set up by Paul Newman, the Hole in the Wall Gang Camp.

It takes children well enough to attend between 8 and 18 yrs old and its really wonderful. The children all understand what each other are going through or have been through and are very supportive. They have a break from their everyday existence and some fun and lots of creativity. And sometimes knowing the camp is there, is something positive for the child to focus on.

Anyway, I hope that's vaguely helpful for at least one parent here. I know its hard when you're surrounded by tragedy.

Thank you for that, anonymosity, that sounds like a really lovely place for them. I've heard that there is a house in Scotland where they run activities too, I think it might be owned by CLIC.

It is helpful for people to be able to get away. It is also nice to know that there is a chance to go after treatment.

Kinky, I really do feel for you; you are having such a dreadful time. I can't imagine how you must feel and how you keep going. Our circumstance is really a breeze compared to what you're going through.

Love and strength to you and yours. xx.