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Children with cancer

(998 Posts)
KinkyDoritoWithFairyLightsOn Thu 22-Dec-11 09:31:50

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.

FriskyMare Fri 30-Dec-11 12:45:41

DD was diagnosed with ALL at the age of 2 back in 2000. She is now a healthy, happy (stroppy!)beautiful 14 year old. We still go for yearly checks but the trauma of the diagnosis is now becoming a distant memory. My love and thoughts go out to all of you still going through treatment. x

OhDoAdmitMrsDeVere Fri 30-Dec-11 16:55:33

Thats fab to hear frisky. I am so pleased for you and her smile

FriskyMare Fri 30-Dec-11 17:15:17

Thank you MrsDevere, I think we were very lucky, she was only little and so did not understand the seriousness of her illness and most of the time she didn't appear poorly at all, bombing around the ward on a trike with dh or me running after her with the dripgrin One thing we did notice was that she drank loads of milk, at least 2 pints a day and she only got one tiny little mouth ulcer.Might be worth a try for those on treatment (consult your dr first tho!)

KinkyDoritoWithFairyLightsOn Fri 30-Dec-11 18:34:24

with dh or me running after her with the drip children's ward is full of parents who spend their days chasing after a toddler with their drip stand! grin It's lovely to see them with the energy for it. How did she get on with maintenance Frisky? Was it smooth going or did you find she was in hospital a lot? I'm really pleased she's okay now; she's a similar age now to my DD who will be 14 in 2012. Interestingly, DD seems to be going for milk quite a lot at the moment.

FriskyMare Fri 30-Dec-11 19:21:10

HI kinky, we didn't have any major problems although she did pick up an infection when she started at nursery and was in hospital for a month having all sorts of tests, and then she had severe pains in her shin when she had just finished treatment, we were warned it could be the leukaemia returning just in her shin, an awful 24 hour wait until the bone marrow came back clear, they still kept us in for another 3 weeks on strong anti biotics. She also managed to catch chicken pox after her 4th birthday party, another 2 week stay! I don't think we had many short stays due to temp spikes tho. I really hope your DD gets through ok, I think different children react in different ways and I hope the milk drinking helps!

KinkyDoritoWithFairyLightsOn Fri 30-Dec-11 20:00:20

She's been up and down and they think other things might be going on. She's attempting school again next week; she's now on second cycle of maintenance. It's hard work. Thanks for letting me know how you got on. smile

MsBazinga Fri 30-Dec-11 20:48:46

My heart goes out to all of you going through this terrible ordeal.

My DD was diagnosed with ALL at the age of 3.5 (she's now a healthy 29 yr old). She was on UKALL X which was very tough on her but luckily she only has happy memories of playing in hospital and being spoiled rotten smile.

I wasn't working at the time, we were very fortunate in having a supportive family, and ex-h had an extremely understanding boss who allowed him time off whenever he needed it. This made our lives so much easier.

We were assigned a hospital social worker who arranged grants from the charity now known as CLIC Sargent to help pay for driving lessons for me and help with a very large heating bill at the height of DD's illness.

We also had several very welcome and peaceful caravan holidays in the UK financed by the Leukaemia Care Society.

When DD was 5 she was allocated a home teacher who came to us twice a week for a year and on several occasions my DS's teacher allowed DD into the classroom once all the children had left for the day to familiarise her with the school environment until she was well enough to attend herself.

I realise just how lucky we were in receiving all this help and hope that it's still available to families in similar situations now.

My thoughts are with you and your children x

MsBazinga Fri 30-Dec-11 20:52:31

Sorry Kinky - should have added it's a lovely idea to start this thread.

Fortunately childhood cancers are rare and we did feel very isolated at the time our DD was ill.

lisad123 Fri 30-Dec-11 21:18:57

im not sure i should be on this thread as its for the children, but wantyed you all to know Im thinking of you all loads xx

toughday Sat 31-Dec-11 14:41:32

Thanks Curious, don't think scans will ever get easier.

frisky, thats exactly what our DD was like on the ward, we walked them corridors countless times followind DD on the drip.
DD also loves her milk, but we all love milk in this family and roughly go through about 14 litres a week. I also breastfed DD while she was on chemo which I think helped her a lot as on the days when she ate very little at least I knew she was getting some nutrition from me.

kinky, I completely understand about being on edge all the time. I'm lucky that I have very understanding health centre that will get DD in for an appointment at very short notice if I need it. One thing I have learnt is to really trust your own instincts.

Hope everyone has a happy new year smile

MsBazinga Sat 31-Dec-11 19:12:41

I can't agree more with trusting your instincts toughday. If I hadn't, it would have taken so much longer to get a diagnosis for my DD.

Did anyone else have to almost fight for a hospital referral? Our GP wouldn't listen to my concerns about DD - he kept insisting she had some sort of 'bug'.

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 19:18:27

Ms My story is on my blog. It's long and boring, but the upshot was a lot of fighting to get a diagnosis theacutelymphoblasticleukaemiadiary.blogspot.com/2011/12/very-beginning.html. It taught me to always trust my instincts. What is sad is that I feel like I still spend a vast amount of time having to fight to be heard, especially when she is an in-patient and we get a number of doctors all suggesting different courses of action. How did you get her diagnosed in the end?

Lisa you are always welcome here smile.

Saying hello to tough and everybody else and here's hoping for a happy and healthy 2012.

Lilymaid Sat 31-Dec-11 19:19:15

DS, aged 20, diagnosed with CML in November - after a chance blood test at a visit to A&E to look at his leg which had been injured in a football tackle. Early days for him and us, so we are hoping that Imatinib works for him.

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 19:19:41

I didn't get a referral. In the end I took her to A&E, but still had a couple of months of messing from that point.

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 19:21:15

Lily I'm sorry to hear that. How is he coping so far?

Lilymaid Sat 31-Dec-11 19:58:13

DS is coping pretty well so far - but is the silent and stoic type. He's normally away at university - so he was 150 miles away from us when he was diagnosed. He was in hospital for 2.5 weeks, then went straight back to university and has even managed a holiday job over Christmas (no heavy lifting because of enlarged spleen). We didn't pick up on any signs that he was ill even though the consultant was surprised he was able to walk let alone play football and quoted ludicrously high white cell count, spleen was 1 foot long and he was very anaemic.
His leukaemia is normally one that people get in their 50s and 60s so no obvious role models for him!

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 20:44:35

So, he should be okay to continue normal life whilst taking the imatinib? I've just read a bit about CML. I know there's a difference between chronic and acute, but I'm pretty ignorant tbh. I'm really pleased to hear that he's coping well. It's awful that any young people have to go through this when they should be enjoying their carefree years. How are you?

I'm not sure how much I can add to this thread given that mine (and DS's) experiences are now 16 years old but I really hope that his recovery gives some hope. And I know how important that is. We clung on to every morsel, no matter how small during those early and very difficult days. I wish MN had been around then.

I wish everyone here a very Happy New Year and I hope that 2012 brings positive news, happiness and peace for you all.

And Kinky if you ever want to meet up for a coffee and a chat in town just let me know.

lisad123 Sat 31-Dec-11 22:18:33

lilymaid that's what my husband has!!

lisad123 Sat 31-Dec-11 22:23:26

It's those early days that are hardest before you get into routine of it all.
Thing I think I found hard was those early days when first dx, everyone rushes to help, but 6month later everyone has gone back to their life's but your still dealing with fallout. sad

Yup you're right lisad123 it goes on and on and on. For years until you are lucky enough to get the 'all clear.' And even then it is only as far as the next check up. We were very lucky in that one of my best friends was a Macmillan Nurse who supported us through thick and thin. We'd have been lost without her. She was ten times the support of my uncle who is a Professor of Nuclear Medicine, specialising in cancer treatments, who just couldn't be arsed to even speak to me.

lisad123 Sat 31-Dec-11 23:15:52

weird thing with DH cancer is he will never get the all clear sad he just carries on treatment for the foreseenable future. It sounds awful but you do settle into new life in the end. DH has blood tests and appointments 3 monthly.
We also have 2 wonderful macmillian nurses, who are great.

I think people assume, as we dont talk about it, and dh looks and is healthy (cancer aside of course) that its all fine. Most people assume he is in remisison, although he never gets true remission confused

lilymaid please pm me if you want the website of a good supportive CML board, there are a few there that are young too.

MsBazinga Sat 31-Dec-11 23:37:41

Kinky I will read your blog (when I'm more awake!), thanks for the link.

It's awful to have to fight - I just pestered our GP almost daily and told him I would take DD to A&E if he didn't refer her for tests. The hospital doctor who admitted her confirmed that most parents had the same problem being believed by their GPs and I'm so sorry to hear that this is still the case.

lisad123 Sat 31-Dec-11 23:51:50

Kinky I read your first post, sadly it's not uncommon. Dh cancer was missed for a year!! They still weren't looking for it when they found it, but found his white cell count was 382 and then went to 414 in a day confused

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