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 think it's the waiting that's going to do me in - patience is a virtue and I am not virtuous.

I want answers and I want them now.

Here's hoping the scan gives you the answers you want.

Fingers are tightly crossed for you, min

Oh, min, scan tomorrow and it's his Crappiversary to boot which is always a hard and emotional day . That's a lot on your plate. Lots and lots of hugs and love and .

oneday I was signed off work for stress throughout DD's active treatment and only went back when she started maintenance. As far as DLA goes, our Clic social worker said to fill it in for a bad day on chemo, and to include the infection risk of the central line meaning you can't have the same freedoms and the being constantly on alert at night for temperatures that mean a 2am flit to hospital, the tiredness meaning distance walking is a problem etc. as these things add up. You should have a social worker through Clic too although you may not have met them yet and they should help you and may even give you an example of a well filled in one to copy and customise.

oneday nos is right - our social worker is having the form sent to us but told me to fill in the basics and he'll do the rest. I wouldnt have the foggiest where to start!

DS was out of nappies over the summer but has now massively regressed with using the toilet... Does anyone have any experience of this? Is it normal? Any suggestions?

Trazzle is he on vincristine? It can cause neuropathy of the bowel and bladder, when DD was on high doses of it in the first few weeks of her treatment she lost control completely as she seemed to have no sensation of whether she needed to go or not. It returned after a few weeks and she went traight back to using the loo properly like the wee trooper she is. She had the odd accident when she was on the stuff again but only the intense phases caused her significant issues again. There doesn't seem much you can do IME except wait for that block of treatment to be over, sorry

Thanks nos yes he is. He's having it with every cycle, so I guess it's going to be like this until christmas. Ah well. At least there is a reason for it - thank you. I was worried that it was just another way of playing up - he has me spoon-feeding him again. We'd managed to get out of that habit when DD was weaned over the summer, but last week he refused to feed himself. As he feels better, he has started feeding himself again which is good.

I might just put him back in nappies for the time being - he has them in hospital anyway when he's on fluids because it just gets to messy and he gets so upset when he doesn't get to the toilet in time. He just only seems to get about 20 seconds warning, if that, now!

Thank you for the reassurance - good to know that it will sort itself out in the longer term.

min hope it's all going ok.

Actually DD needed fed some things for a while too, it can affect their wee fingers and she got too frustrated trying to manage the cutlery whenher fingers didn't quite do as they were told and her fingertips were all red and burny. Great he's feeding himself again, I hope everything else follows suit now too and he starts feeling much better! You will probably find he walks a little strangely after vinc, it tightens their tendons at the back of their ankles and gives them a very flat footed gait, luckily it passes quite quickly. DD became unable to walk for a while aftereher initial 4 week block with vincristine as the main agent, although this is less common I think, so don't worry if it happens but I wouldn't be expecting it either. She has just successfully completed a long course of physiotherapy for the long term effects of all that vinc she got throughout her two years of treatment and she just won two house points for PE this week! This from the girl who came home crying because she was last in everything in last year's sports day! She's coming down with her DGPs today to stay in my wee flat here with me for the weekend, I just can't wait to see her and give her a big cuddle and tell her how proud I am! So looking forward to getting home to her when DH is better! All of you that have to be separated from your other kids when your CK is inpatient, I take my hat off to you big time.

Will read back fully, but apply for DLA now as they will put a future date down to start paying you, but at least the application is all done and dusted and any problems can be addressed now, rather than holding up money when you are due to get it. You should be able to get help with this. I applied in February after an early Jan diagnosis and started getting payments in April. get help as they can fill in with you what caring for your child will actually mean - my CLIC social worker did mine with me as she knew what was coming and what caring for DD would entail. She was right too.

Trazzle there were 3 year olds in with us who had gone back into nappies, I don't think this is unusual. Can you ask your consultant. It's possibly a baby/comfort thing, though I could be wrong. I hope you are all okay.

Of course, vincrtistine does do this.

Cancer is shit.

min thinking of you today and hoping it goes okay. I hope you have lots of for when you get back.

Well scan is done :-( lots of years this morning from Will he wouldn't talk to anyone at the hospital today not make eye contact.

I feel an emotional wreck and everything hurts so can't imagine how my DS feels. I can't actually face any wine but am munching my way through a family size pack of maltesers.

Now the long wait until the 13th for results. Thank you all for your thoughts.

Love to all xxxx

Years? Tears ....

It's so tough you have to wait so long for the results. How is he now?
A difficult couple of weeks ahead; I'm here if you need some virtual hand-holding. I'm sorry I can't do more. I hope you all mange to get some rest tonight and I will be thinking of you. As always, sending love and hope.

How old's your son Min?

Were you given any comment at the scan?

We had a scan on Thursday, and comments were made on what they had seen, but it didn't mean anything so foolishly came home and googled shouldn't have done that. Our official results are Wednesday probably should have waited for then.

Good news about work - I have up until 3 months paid leave available to start when I want it to, but if I don't want to take that until we know more, I am being set up for home/hospital working, so I can keep working. That's one worry I can park for the time being.

I'm really pleased work are supporting you One. The amount of stress it causes if they are difficult is horrendous. It must be such a huge weight off.

Hope you are okay min.

IBS so bad this weekend with the stress of everything. I'm in agony. I think it's finally got to a point where something has to give and I'm frightened it will be me.

Hope you are okay min. Still thinking of you. If you come back to the thread today, please bring or vodka. Could do with it. I'm sure you could too.

Hi Kinky please have a on me. Sorry your IBS is playing up - I would take this as a warning sign - your body is telling you to take it easy. I know it is easier said than done but you DD needs you to be healthy so try and try to let some things go so you can rest and build strength for yourself.

Will seems a bit brighter now scan is over and done with but he does not want to be apart from me. His Dad was ill Thursday and Friday when kids were meant to go to him so in the end he went yesterday afternoon. Back again in the evening as he wanted to watch the fireworks out of the allotments (behind our house). He went back with his Dad (his dad is really good with him) but he keeps sending me text messages. Not sure if he is just feeling vulnerable or if he is worried about me

Of course I have now come out in a full blown cold so am dosing myself up with day/night nurse (my own warning sign to slow things down!) got lots to do though but will try and sit down this afternoon - after dog walk, food shop, Christmas pudding wrapping, oil infusions, labeling all my jars of piccalilli etc etc!

Other son is away camping (in the rain) so will await his pile of wet, muddy washing!

Back to school next week but do not feel as though we have rested!

Love to all xxxxxx

I'm pleased he's a bit brighter. I just hope you feel better soon too - being run down all the time is not very helpful when trying to manage what we have to cope with! I think an afternoon of sofa and telly sounds like a plan. And night nurse is excellent stuff. I'm having to avoid the temptation to take a load just so I get some sleep .

I'm at my Mum's at the moment. She's been really teary today as she's so worried about me. She heard how ill I was in the night, and I think the reality of what it has done to me is hard to see for her. I don't tend to think about me as I'm too busy trying to keep all the balls in the air. I was saying to DH though, I have been having bad IBS every day for 2 years now (DD started being ill Oct 2010 and I was in a stressful role at work), and taking up to 10 immodium every day just to function. I'm actually quite scared what my insides must look like now.

Oh Kinky let your mum look after you a little bit. It must be hard for our Mum's to watch our pain.

I too am worried about what this will do to my body (only in so much as I want to be fit enough to look after my son). For the 5 half months in hospital I took day nurse and night nurse as I didn't want to get a cold. I could not not take them IYKWIM. I was addicted to Vicks sinex as my sinuses were so dry from hospital air. My teeth and jaw hurt constantly I imagine from grinding my teeth in the night. I have constant gum infections and am sure I must have scurvy from lack of fresh fruit and veg! And then people have the nerve to say I look so well (they probably leave out 'considering everything'). My only saving grace is that I have to walk the dog 5 days a week (2 days I have somebody to walk him so I have a bit of pressure off me) and perhaps I look weathered rather than well!

My mum and aunt have both had to have small intestines removed (bowel cancer rife in our family so I await that joy!) and are both on about 10 tablets of Imodium a day too. Doctors have told them not to worry too much about taking them.

Anyway, much love and understanding coming your way xxxxxxx

Does anyone have experience of craniospinal radiation and nightime wetting?
DD aged 4.5 is still wet at night and I'm not sure whether there is a hormone problem with vasopressin at night. It seems she is far behind her peers. Don't know what to do - if anything. I'm worried she'll never do it.
No problems in the day though.
Chemo included vincristine, etopiside, cyclophosphamide, thiotepa, methotrexate and another one which I can't recall.

When Will was on etopiside he had no control - because he was 16 they decided to insert a catheter to help him. He seems to have recovered from that but as he is older that maybe why. Maybe your DD sleeps so heavily at night that she does not wake for any 'wee urges'. If she has control during the day I would imagine it is only a matter of time to allow her body to recover. Big hugs though - everything is a bloody worry xxxxx

Thanks - yes she does sleep deeply, she's just always so tired and i think she's still recovering. Her behaviour when tired is truly truly appalling it's so stressful - I'm unwilling to face the issue of waking her at night as I don't want to make it worse.

You are so right - everything is a worry, people just have no bloody idea do they.

Hi Queen. DS is on etopiside. He is 3 and was never dry at night but has gone back to nappies/pull ups full-time again because we were getting a warning that he needed the toilet about 2 seconds before he actually went.