Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

[lovelychops]

Hi all. We're back in hospital. DD had been great last few days, really started to see glimpses of the old her coming through. Best day today, we even made cakes....
Then she got a temperature at tea time. She's not neutropenic but bloods are low so she's having a transfusion tonight. Plus anti biotics for suspected infection. It may be on her line which is only few weeks old.
We were due in tomorrow for theatre so the thinking is, they want her well for that.
No beds available on oncology, so we've been moved to a ward. In the whole hospital we're on the one where she got diagnosed.
Bollocks

[Twunk]

They ALWAYS think it could be the line lovely and treat accordingly, because they have to. I hope DD is feeling better soon.

And to you nocake - anybody would think you loved being in hospital

[Twunk]

Oh and yes nocake DS1 is mightily proud to have his little brother at school! It's very cute.

Yesterday, at the end of school, some older children were chasing the younger ones from the sandpit and Alex fell (actually noone's fault - he's not very steady). One of Milo's friends (only 6) said "be careful! He has cancer!" - the older boy looked completely shocked and asked if it was true. My Dutch isn't great so I tried to explain, but I felt like crying. Not even sure how I held it together.

[Twunk]

Well today is my birthday. I hope being 39 is better than being 38! Taking the boys to the cinema! And we're going out to eat later. Got a friend coming over this morning.

I hope hospitalised folk are OK and everyone else is ticking along as well as they can.

Very much thinking of Minmooch today.

[Nocakeformeplease]

Happy Birthday Twunk, hope you've had a lovely day. Any more news on your trip to London?

No wonder that upset you (and even harder that you had to explain it in another language). 10 months down the line and I still hate saying D has cancer. I normally say he's having treatment for a kidney tumour.

Sorry to hear your in hospital Lovely - it must be very hard being back on the ward where she was diagnosed, especially as it was so recently. I hope it turns out that it's not a line infection and that you get out soon x

D's bloods came back today and fortunately negative so we've been discharged . Back to the Marsden tomorrow for chemo.

[unbuckle]

Happy birthday Twunk. I'm 38 and it sucks so you could be right, 39 should be great.

I is at the Marsden tomorrow too - and finally out of isolation. Although it's not me taking him, i'll be at work.

[unbuckle]

Oh, and i am even more elusive, i has a serious long term health condition.... Only occasionally does anyone ask what it's called...

[Nocakeformeplease]

38 here too.... Here's hoping 39 is better for all of us! x

[Twunk]

twunk this will sound super patronising although I mean it with the best of intentions, but look at how far you have come!! I remember when you were in the process of getting the diagnosis and now look at you, all wise and calm!

Yeah you patronizing cow Tabitha

Damn this means I'm older than all of you...

Alex has just had his port out! Woohoo! And we get to keep it. Am considering having it made into a necklace as it's quite pretty! Will put a picture up when I can work out how to do it on phone.

[Twunk]

It's there now on my profile

[Mumofgremlins]

Hi

Joining the thread as my DS was diagnosed with ALL in June 2013. He's doing ok but it's been a tough 9 months, particularly getting him to eat. He's at school most of the time and doing really well. He's on maintenance now which should, in theory, mean normality but it's a bit up and down trying to get the doses right. And he still won't eat!!

Hopefully there won't be too many people joining this thread, if you know what I mean!

Louise

[lovelychops]

Excellent news twunk. What a milestone!

We got home late last night. We've had the MRD results back and she's in the low risk group. It feels surreal but we're obviously really pleased.

Hope everyone else is doing well?

[Twunk]

Yay yay yay yay!!

Brilliant news lovely

Xxx

[Twunk]

Sorry mumofgremlins I missed your post. Welcome, and sorry you've had to join us.

I know trazzles has had issues with her son eating too. Alex is generally okay but unbelievably fussy. We're a month or so behind you. It's such a bloody long time!

[Nocakeformeplease]

Great news on getting the port out Twunk

Fantastic news that your DD is in the low risk group Lovely

Sorry you've had to join us mum but great to hear your DS is doing so well. My DS was diagnosed in June too (kidney tumour). I can't really remember life before then! DS has just about managed to maintain his weight but it's been a real struggle and he's a skinny little thing. You have my sympathies!

[Trazzletoes]

Children eat?

Who knew

[Mumtogremlins]

Jacob is like a skeleton and I'm constantly pulling my hair out trying to get him to eat. He's avoided the feeding tube, but only just. I'm almost looking forward to the steroids next week to increase his appetite!

[DianaTrent]

Sending love and best wishes to everyone on the new thread, and also very much thinking of min right now.

I have been about intermittently since the first thread. My DD was diagnosed with ALL back in September 2009. She finished treatment in October 2011 after a good few complications along the way including peripheral neuropathy and a very serious fungal infection. She is still somewhat affected by the after-effects of her treatment, but has come a long way and is in general a happy, confident child. I can honestly say that there were a few times we thought we would never get this far, but thankfully DD has been very lucky and is getting stronger all the time and turning into quite the little lady. I couldn't be more proud of her. I probably won't post here too much now that we're not on the front line so to speak, but I am happy to get a pm if anyone wants to talk.

[Sillybillybob]

We are in hospital J posted a fever at 3.20am soooooooo tired!

gremlins I'm Trazzle but this is my usual name now. My DS has had his NG tube for nearly 18 months. I hated the idea of it at first but really it's a godsend. No battles over eating or taking medicines. No worries about weight loss. He's just starting to eat again now and it's painfully slow going but his tube is great.

[unbuckle]

Hello gremlins! My son also is tube fed - he eats and drinks too, every day, but not enough. I am just about getting over hating it. it marks him out as a cancer patient to me, in a way that the bald head doesn't - partly because he's a baby, partly because he isn't actually completely bald. But it does completely remove anxiety about giving meds and eating, so really, it's a gift. But if your son isn't on an ng, i guess it's because although you're worried about his weight, the doctors aren't so much - which is encouraging I think.

Good news from lovely and twunk!

Hope you are free soon Silly.

And nocake - did d have chemo? You're edging closer to the end of treatment which is amazing. We are on week 11 of 34. :(

[Pollyputthekettle]

Oh Trazzles. Sending you lots of good thoughts. I hope J is better soon.

[Twunk]

Oh no Sillybobtrazzles what an arse

[Twunk]

unbuckle you are one whole third through it!

[Bravelittlesoldier]

Hi all, thanks for the welcome and very kind words. They have helped and I feel less like I'm sinking but we're still waiting for more answers so maybe it's denial that I in!

His ultrasound and MIBG scan aren't for another week and then surgery will be after that. We don't know what stage or whether it has spread-is it just me or does three weeks from initial to definitive diagnosis sound very slow? I think the fact that he seems so healthy and has no apparent symptoms are reassuring everyone. I'll be shocked if it has spread. He's such a lively, sweet little man (bit biased though!).

Can I ask how any of you managed if you're not SAHMs? (Not that that is any easier!). I was due back to work last week and I'm trying to work out how to manage leave and the nanny we had organised. They're being very supportive but I don't know what to request yet.

Hope you and all your LOs are having nice weekends

[Bravelittlesoldier]

that I am* in