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

how's things Twunk, all finished yet?

Dd's check up went okish, the anaesthetic was traumatic as usual but thankfully I didn't end up wearing the premed this time! They had trouble getting a line into her again so I got her back covered in plasters and a cannula in her ankle, I know there's a lot worse things but it's these things she struggles so much with. The cyst in her good eye has vanished, such a relief it's gone! There's no guarantee it won't come back but for now we can relax a little and nothing new in her other eye, no growth so pretty good results really. Struggled a bit after the checkup, I think I'd got myself so worked up about her other eye I crashed a little. Dd's also not coping so well with her regular appointments, she's very wary of medical staff and anyone that wants her to lay down.

Now back to letting the kids bankrupt us for the next 5 weeks

Know the feeling - we are 3 weeks into the holidays and broke - we've not been on holiday yet!

Alex had quite a few cannulas in his foot. In fact getting a line into him was never ever easy. Pleased to hear the cyst has gone and I hope it doesn't return.

But we are DONE! Yesterday he took his very last oral chemo. And here he is - 2 years later! So happy

How fantastic twunk! Must be such a relief

Wow well done Twunk and Alex, may he be cured forever and ever and never need to go through all this ever again xxxxxx

Re hips, how did it go in the end?

I am ignoring the whole hip dysplasia issue for now, am up to my eyeballs with log file work and badge tests for dc's upcoming girl guide camp next week. She doesn't want to go, because she hates camping and there is way too much paperwork and scrapbooking and report-writing to be done in such a short time that she feels stressed and just wants to give up, but I am pushing her to go, in order for her to come out from her shell, make new friends and essentially lead a normal life like other kids...since her illness she has become very quiet and shy and introvert. I am wondering whether to cave in though, and pull her out from it, she has been tantrumming pretty hard everyday whenever I bring this up and no amount of bribery is working...

Dd's last checkup last week didn't go so great. Her bloodwork was very good though, even though she had a bit of a stomach upset and vomiting for several days. But the endocrinologist said she hasn't grown much from 2013, in fact she had only grown 3 inches taller since, and that he might want to put her on growth hormones which is a daily injection for a year. Obviously our jaws just dropped when he said that. And we thought that we were done with needles and pricking!!! I said I would like to wait and see in case she suddenly grows more (although probably not judging from her past history), meaning that I want to get other doctors' opinions first!! and he said fine but she may not grow as much if we leave it too late. So yah, that's the latest shit to hit my fan.

Oh Shits and your shit hitting the fan

Seriously it cannot hurt to get a second opinion if you can get it quickly.

Re the guide camp - I do make my children do things they don't want to if I think they'll enjoy it. How long is it for?

just fri 2.30pm to sun 12 pm

Toughie - did she ask to go in the first place?

One part of me thinks she has had to endure so much without any choice and so it should be her choice, the other part thinks that she will probably enjoy it and it's a good idea for the reasons you have mentioned.

No use am I?

Shits - our DS has growth hormone daily (following brain tumour produces none) - it's really not that bad. He is 5 and copes ok with it, though he would rather not do it. His growth has been dead on average while taking it, but it is marvellous to see he is growing. In fact, just measured him and he took a leap of about 1cm this past month. I'm thrilled. It's not just good for their growth, also general health. It's very expensive for the NHS, so there is a bit of a process to getting funded, but worth it. Not heard of kids being on it for just a year though TBH. If they aren't producing GH then they need it longer term from what I have read. There are good FB groups for families with kids on GH.

How's everyone getting on? I'm pleased to say we survived the summer holidays Dd has found going back to school very tiring, we had a few, hopefully unrelated, health issues in the last few weeks so a few appointments and not much of a break really. She needs some laser treatment on her eyes due to post cataract complications so that'll be another anaesthetic and admission in the next few months on top of the one she has coming up for her checkup. She's definitely stronger than me!

Hello! We are now nearly 2 months post-treatment and all is well. Alex had his first appointment since he finished chemo and his bloods looked really good. The oncologist was really pleased with him.

He developed a lovely post-chemo rash just in time to go back to school! Thankfully his classmates haven't really conmented (though some of the parents have - just asking what it is). It's improving a bit now.

The boys have started Taekwondo and love it. Alex clearly isn't quite as strong as the rest but he's certainly not lacking stamina.

Overall we are feeling optimistic for the future and beginning to recover from the stress. It's nice being normal but everything requires adjustment.

Hi! It's been a while. How is everyone? x

Hi all, hope I can join in....

My nearly 7 year old, William, was diagnosed with an optic nerve glioma just over a year ago. It's a low grade tumour and we had been on a Watch and Wait plan until September when the bastard started to grow and the oncologist wasn't happy.

William has started a 3 week cycle of Carboplatin and Vincristine, today he's having his 7th dose. He'll be doing this for 18 months.

It's been very up and down, pretty predictable with side effects. He's been very Neutropenic and we've had one admission with an infection. We've also struggled with his other blood counts, he had a blood transfusion on Sunday and a platelet transfusion last Thursday.

His hair has been slowly falling out over the last 2-3 weeks, I'm hoping it won't all go ( at the mo it's thinning)

I'll be honest, i was so blasé when they told us he would be having chemo. Hubby sat there and cried whilst I was tough and didn't worry about it. It's been so much more hard work than I imagined, every day I wake wondering what will today be like? Will William wake up shattered? Feeling ill? Will he get to school? Will I get a call to collect him?

I thought it would be a case of him having a day off a week for chemo and that would be it, how naive was I!!!!!

I'm sorry madmother - I completely disappeared then! I've got a very busy few days but will update further! 18 months seems like a bloody long time but Alex's treatment was 2 years and you'd be surprised how quickly it can go. It's very odd. You will have bad weeks and good weeks - but yes, the hospital will be so utterly familiar by the end of it all. Vincristine can cause muscle weakness (especially the legs). How is he now?

waves at Trazzletoes - how is everything with you?