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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.

Trazzletoes Fri 16-Nov-12 21:15:24

Kinky in the nicest possible way I'm glad not to have seen you this week - very much hoping that its because your DD is doing great.

Had the good news today that DS' tumour is shrinking and that his bone marrow sample showed no signs of cancer. It's the best news we could have hoped for at this stage.

Obviously we still have a really long way to go, but for tonight we remain hopeful and feel extremely lucky.

KinkyDorito Fri 16-Nov-12 21:25:25

I'm so pleased for you all thanks. It's going the right way. I hope you are having a lovely, relaxed evening in celebration smile.

DD has ridden out her cold without a temperature, so I'm hoping she will be back to school next week. It's the first time she's had something that hasn't put her in hospital, so I am pleased.

I am trying to calm down still - I attempt work again in a week.

KinkyDorito Fri 16-Nov-12 21:29:38

min get meds. Or get Night Nurse. I bloody love that stuff. I can't take it for fear I will become a Night Nurse addict. It's the best bit about having a cold. That will give you a good night's sleep. They've put me on ADs again, and I keep waking up at bizarre o'clock which is not helpful for my state of mind. Or Bailey's? Would that help you sleep? It is also seasonal. (I like Bailey's too. In fact, a bottle of Night Nurse and a mug of Bailey's and I could sleep for the weekend. Unfortunately DH is a chemist and gets all twitchy and spoil-sporty about my liver.) grin

Trazzletoes Fri 16-Nov-12 21:33:45

Oooh Baileys...

So glad that she hasn't needed hospitalisation - also a very positive step. It must be a small relief in itself.

I can't bring myself to believe our news. The Dr was saying that it was what he'd been expecting, but I think not having personally seen this situation only where the chemo isn't working and so having nothing to compare it to... Just so relieved that he still has a chance.

KinkyDorito Fri 16-Nov-12 21:38:04

He's doing really well smile.

Bailey's is £12 for a litre at Tesco at the moment wink. It makes a lovely milkshake. Not for the kids, obviously.

WheatenFarlo Fri 16-Nov-12 21:45:36

Trazzles, I am really grin that you have had such good preliminary results! That is just wonderful news!

Thanks, min he's OK really, amazingly well he is actually doing for a man who has just had something the size of a plum removed from beside his brain stem, thank goodness for microsurgery!

Queen I am glad that you are seeing improvements in the walking, running, etc. DD just completed a few months of physio which made a big difference to all that. I am so sorry to hear you have had bad news about another patient. sad

Well done MiniDorito for fighting off the cold! That's some feat when neutropenic!

Hugs and wine to all of you.

WheatenFarlo Fri 16-Nov-12 21:50:06

Baileys milkshake!? shock

why didn't I think of that when I actually had some in the sodding house?

KinkyDorito Fri 16-Nov-12 21:57:36

Get some now Farlo. It has to be done. Ice, liberal amount of Bailey's, milk, stir. Drink. Repeat. Send DH to off-licence for new bottle. That was my Christmas Eve last year grin.

KinkyDorito Fri 16-Nov-12 21:59:02

Seriously, though, I am so pleased that surgery went well Farlo.

It is nice to be getting lots of good news for a change. smile

WheatenFarlo Fri 16-Nov-12 22:03:15

Thanks thanks smile. I would, however our shops close at 10pm here unless I want to drive for 1/2 an hour which might be a bit over-enthusiastic. Next time I'm shopping, though! DH can't drive now for quite a while so the poor sod has to put up with my driving every time he wants something he can't walk to shock wink.

minmooch Sat 17-Nov-12 09:00:17

Baileys milkshake shock you evil women - that's me off to buy some today. I lurve Baileys - used to only take it when camping and used to make my coffee in the evening with Baileys instead of milk! Now a baileys milkshake - that can't be considered drinking on my own can it?

Kinky - fab news your DD fought off her cold!

It is indeed good to read some positive news on this thread.

Will has some of his friends coming over tonight for pizza and beer as it is his birthday on Tuesday (17 - where did those years go and sure I am not old enough to have a 17 year old < I certainly look it though emotion >) so I shall have to hide upstairs with I'm a celebrity and a Baileys milkshake - sorted!

Love to all.

minmooch Sat 17-Nov-12 09:03:40

Trazzle wrote on your other post but I am just grin at your positive news. Hope you are not having a celebratory hangover. I had 3 (yes 3) glasses of wine the other evening and promptly threw up all night! < lightweight >

Lets keep the good news coming in

Stinkyfeet Sat 17-Nov-12 09:21:46

Such lovely positive news to read! Trazzle, I remember especially in the early days every piece of good news gives you back a little more strength to continue your journey.

Good news here too - ds1 has just one more dose of vinc on Tuesday and then chemo is done!

Can't wait to try out Baileys milkshake!

minmooch Sat 17-Nov-12 17:15:35

Yay Stinky - just one more dose. Are you planning to celebrate?

Oh bugger - I've just got in for shopping and forgotten the Baileys! Ach - it will have to be wine then for tonight!

Stinkyfeet Sun 18-Nov-12 21:59:30

I think we will celebrate somehow - a family meal probably as ds doesn't want a party! But not until he's had his scan on the 26th and we've had the result on Dec 5th. Then I may celebrate with a bucket of Baileys milkshake grin!

Trazzletoes Sun 18-Nov-12 22:27:10

Oh gosh stinky yay and fingers crossed!

Before all this I hadn't really thought that different cancers needed different treatment... Last week I saw the GP who had initially referred us to the hospital (for suspected clicky hip...!) and she was asking after DS. I explained we were off for chemo. She assumed he was just having his 2nd session. She was very surprised to find out we were on number 5. Other parents at hospital seem to think we're "lucky" to get chemo on weekends as DH can be at hospital too hmm. I still think I'd take their survival rates over the odd weekend in hospital...

How do you cope with disciplining your children? I seem to fly off the handle every 5 minutes with DS and then feel incredibly guilty as I know it's the illness and medication that makes him awkward - it's all: I'm hungry but you pick what I can eat... We eventually decide on something and he nibbles a tiny bit and then declares he doesn't want it. 5 minutes later he's screaming again because he's so hungry... and he's started hitting me - which I won't stand for...

We aren't used to spending this much time together either (he used to be in nursery 3 days a week) which doesn't help.

I just lose my temper do easily and then think, good god, he might not make it through this and all he'll know is that mummy was so cross... I'm really struggling with this sad

minmooch Mon 19-Nov-12 08:58:06

Oh Trazzle you are only human. You are doing so amazingly well but you are tired and these are curcumstances no e of us should have to face.

Remind yourself that it is the illness/medication and tiredness and fear making him hit out. All he will know is that Mummy loves him incredibly well.

I feel terrible guilt when I ask my DS to stop talking to me for 5 minutes! He chatters on and on and on and wants to show me stuff on YouTube that I'm just not into. Then I beat myself up because for the majority of the time he has only me to talk to, show things to etc.

I then feel guilty towards my other healthy son who gives me normal 15 year old back chat. I let him get away with some (because Will us ill) and then I tell him off because I know he shouldn't get away with it whatever the circumstances. There is no consistency though!

We are mothers = a life time of guilt. We are mothers of ill children = more guilt/fear/pressure/exhaustion etc etc etc.

Be gentle on yourself. He knows you love him and you know you love him. Take 5 mins out if you feel like exploding.

WheatenFarlo Mon 19-Nov-12 11:51:08

Oh, Trazzle it is incredibly hard! The steroids turn them into little monsters sad. DD has always been a good child, but on steroids she screamed, shouted, threw things, hit, kicked, scratched and bit too. Then she was inconsolable when the rage passed and she realised what she had done. You try to be tough and keep some discipline or all hell would break loose, but then you feel terrible because you know it's not really your child doing it. If there is a perfect solution, I certainly never found it. The only good thing is that when the steroids are done, it goes away. They do learn bad habits from all those years of treatment, but you can slowly iron them back out again when they are off treatment and calmer and more rational. In the trenches it is just getting through each day with both of you in one piece however you can, really. This is all normal for a kid with cancer, though, it is nothing you or he are doing wrong. In conversations with DD we called it the "Dexmonster" and spoke about it having taken over her brain. We said that she had to do her best to fight it and control it as we couldn't have that behaviour, but that we knew it was the Dexmonster who tried to make her do the naughty things and not her, and we still knew she was a good person and still loved her just as much. It helped, but I don't think anything can make it go away sad. Bastard, bastard cancer angry.

Queenmarigold Mon 19-Nov-12 12:33:42

Trazzle, so happy to read your news - baby steps in the right direction!

Steroids are evil evil things, they make children terribly badly behaved but truloy it does go away once they stop. They do make them eat well, though which is nice to see.

Trazzletoes Mon 19-Nov-12 12:53:08

Thanks all. Good to know I'm not going through this alone.

I don't think DS is on steroids though...

KinkyDorito Wed 21-Nov-12 17:37:19

Catching up, bumping and showering you all with flowers:

thanks thanks thanks

and Baileys.

KinkyDoritoWithJingleBellsOn Sun 25-Nov-12 21:03:08

Bumping.

Hope everyone is well - I'm working on the no news is good news principle. smile

minmooch Mon 26-Nov-12 08:08:33

Hi Kinky and everyone

How are you Kinky? And your DD?

All ok here but just been very very busy. The boys went to Disneyland Paris this weekend (to some computer game convention) and I had a night away with a girlfriend at a hotel and spa. Lots if giggling, eating, treatments and general lazing around. Came back on Saturday afternoon and was so exhausted I was in bed asleep at 8!

I'm sure it's done me good but I feel exhausted at the mere thought if it being Monday and everything that has to be done. Hey ho, keep on keeping on.

Love to everyone cxx

KinkyDoritoWithJingleBellsOn Mon 26-Nov-12 10:27:15

Still off work, but due to go back next week. Just hoping it is okay when I do. DD is okay, but had big chemo and blood taken off her last thurs, so feeling very grotty today. No school for her again.

It is such a non-life I lead.

Your weekend away sounds lovely min, pleased you had a great time, and hope your boys did too at Disneyland. What a lovely time of year for them to go, even though they are older. DD would be very jealous!! grin

KinkyDoritoWithJingleBellsOn Wed 28-Nov-12 21:02:36

Hanging around, contemplating opening the Baileys...

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