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.
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Children's health
Children with cancer
997 replies
KinkyDoritoWithFairyLightsOn · 22/12/2011 09:31
OP posts:
FarloRigel ·
10/01/2012 14:04
Expat, so sorry to hear your DD is so miserable today 
. I hope they will come soon to put your mind at ease re. perforation etc. and she starts improving soon.
KinkyDorito ·
11/01/2012 09:04
At around 6pm this evening, it will be one year since diagnosis. I'm just really bloody pleased she is still here and doing okay. It was the worst day of my life.
tough thank you for your advice again yesterday. I am claiming what I can at the moment, and we will be fine whilst she's having treatment. My worry is what happens when the benefits stop and I have to get another job. I like the idea of a sabbatical. I think I'm going to go to the meeting next week and see what they suggest.
expat I hope you had a good night with your DD 
.
KinkyDorito ·
11/01/2012 14:25
It's good that she's well in herself. I just really, really hope you get good news. I'm not surprised you're not looking forward to vaccines .
I've rejoined WW and I'm really trying to sort myself out a bit. Putting on so much weight has really not helped me feel like I can cope with the world. I've actually been using my cross trainer on an evening and it's making me feel a bit brighter, so I'm desperately trying to keep the momentum up with that. I've joined the Couch to 5k programme, although I'm really self conscious about going out running given I live where I teach. I mustered the courage on Sunday and on my first attempt ran straight into a load of teenagers I know - all 15st of me in leggings 
. I'm thinking about getting up early to go instead.
She did go to school today for the first time since last Weds, and was fine, so she can try again tomorrow.
You do very well avoiding the crappy food. It is so hard when it's your crutch and you are anxious.
toughday ·
12/01/2012 10:24
Thanks Kinky, I would love to do running but I don't think I could do it, haven't ran anywhere in about 10 years.
Once I get started with exercise for a couple of days i'm grand, but then there is hospital appointments and I miss a day, then something else happens and another day is missed and then I find it so hard to get back into the swing of it. I used to do the 30 day shred so will maybe give it a go again.
Didn't do any yesterday, I look for any excuse to get out of it and the only person i'm cheating is myself
I'm glad your dd did well yesterday, it gives her a bit of normality with her friends and gives you a break for a couple of hours. I'm currently sitting on the sofa with DS watching DVD's, he's poorly today so he's enjoying the cuddling with me.
KinkyDorito ·
12/01/2012 13:16
I know exactly what you mean tough. You are the same as me - I manage it for a bit but get thrown off track easily. No break as I've also got a poorly DS! He's not been allowed to the childminder for over a week now. I would love a quiet hour or two. He's had an eye infection, and today he had to have the fklu jab booster because of DD, so that's made him a bit out of sorts. I'm being forced to play firemen non-stop, and I have to wear the helmet too. I look very fetching in it 
.
toughday ·
12/01/2012 16:05
We don't get the results until the end of January. We might get an unofficial report next week, but I always wait to the official report is done before I breathe again.
Good luck stinky for next week. Great that you had a clear scan. DD had vincristine and cisplatin as well but not lomustine. DD never needed to be tube fed although she was close at one stage during her first cycle. After that she perked up and ate ok throughout the rest of her chemo. One thing another mum told me was to let them eat whatever they want which is pretty much what I stuck to throughout. There was a stage where DD ate wotsits for breakfast, lunch, and dinner. She is a great eater now and loves her vegetables so no long term damage was done.
Kinky I ended up playing with the toy cars, think I got off lightly. Thats good that your DS still goes to a childminder. My DS will not stay with anyone except my mum. I used to take him to toddler groups but he just sat on my knee the whole time and wouldn't play with anyone. He is a very clingy child now and I dread him starting pre-school in September. I have to start potty training him soon too but he is so stubborn. I'm hoping for him to decide himself to wear big boy pants but it's not lookng likely anytime soon. Every time I buy a packet of nappies I say it will be the last
lisad123 ·
12/01/2012 16:08
DH has had a few days of diahorra, but insisted on going to work 
He just rang to say he asked to go home and getting worse but boss has asked him to stay
I always worry as this is how it all started, with loads of bugs :(
His due a blood test tomorrow, so guess anything will show up in that.
KinkyDorito ·
12/01/2012 16:56
tough my DS will start pre-school then and he is still very much in nappies and refusing point blank to budge - too clever for his own good and he wants to be 'a baby' still. Great. This year has made him incredibly clingy. He still goes to childcare simply because I still have to pay for it all and keep him in the routine in the hope that I might get back to work. He does quite reduced hours and leaving him is always tough as he wants to be with me all the time. He was just sat watching TV a moment ago, and then turned round in a panic to check I'm still here. It's like he's always worried I'm going to go somewhere and not take him, and I think it comes from the hospital stays with DD.
Hugs lisad. He does really well still working - I guess it helps to keep him sane, having a different focus. It's an arse they won't just let him home if he doesn't feel up to it.
Stinky I'm pleased scan results were good. How long will you be staying in hospital for? Remember your hand cream . Mine have all cracked again this year from furious hand-washing, and I'm not even in hospital at the moment 
.
lisad123 ·
12/01/2012 17:02
His is in some ways an easier cancer, less intentive chemo ect. It also means there is no cure and he remains on treatment forever. He had to go back to work, we needed to be "normal" and his normally fairly well with it.
Im just worried he has developed a resistance to his treatment. He started to develop resistance about 18 months into the first treatment, and so was changed onto this treatment when the cancer cells started increasing. We are hitting 18 month mark on new treatment now
BustersOfDoom ·
12/01/2012 20:09
That's excellent news about the scan Stinky and I'm keeping everything crossed for you tough. We're back at the Bexley Wing at Jimmy's on the 18th for DS's annual check up to see the oncologist and endocrinologist - he had growth hormone for 3 years as radiotherapy to the head tends to knock out the pituitary gland a bit. Both DP and me are from 'tall' families and DS is now about 5' 8" which is pretty good. He's also on thyroxine due to the pituitary being under active.
They are extremely thorough and it is very far from a quick chat and a 'see you next year' type of appointment. He likes me to go with him even tho he's 24 now but after last time when they asked him about sexual function I've told him I'll wait outside
I know that it's probably much further than you can bear to think about but the long term care for those who had cancer as children is excellent. DS has had full heart and lung function tests - to assess long term effects from spinal radiotherapy, many others I've long since forgotten and has taken part in dozens of surveys and reviews designed to improve children's cancer services.
Lisad hope your DH is feeling better and that the blood test comes back ok.
And Kinky I was serious about going for a coffee You can rant to me as much as you like.
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FarloRigel ·
13/01/2012 00:13
Just wanted to pipe up and send a big to stinkyfeet re your DS's scan and wishing you all the best with your DD's toughday! Likewise hope your DH's bloods are perfect tomorrow Lisad - is he sick a lot? If so would they consider checking his immunoglobulin and topping him up if they're not doing it already? It made a massive difference to my DD.
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