Childhood cancer

[lydle3]

Hi My DD2 has an astrocytoma brain tumour which she was diadnosed at 5 and a half months, 3 rounds of chemo and 6 weeks radiotherapy and numerous surgeries, just wondered if anyone else out there was goingf through same/similar thing ?

she has been left with major vision problems, hormone and growth issues.

Would be good to compare stories and chat about endless hospital trips/ meetings etc . . .

There's a poster called Droile who has a son with a brain tumour but she doesn't post so much these days. I hope she sees this thread as I often wonder how she's getting on.

Oh and I should have said welcome to mumsnet. It sounds as if you're on a bit of a roller coaster. How old is your dd2 now?

Hi

Have nothing useful to add as have no experience of this but just wanted to say hello.

Hello and welcome! I don't have experience with your DD's helath issues but hopefully someone who does will find you.

Hi, I have no experience of having a child with a brain tumour but my sister has a brain stem tumour. She was diagnosed when she was 7 and had surgery but they were only able to remove 30% of it. She had chemo and radiotherapy to try to shrink it but it didn't shrink. BUT it hasn't grown. She has MRI scans once a year to keep a check on it. She has been left with weakness down her left side and uses a wheelchair if she is going to do much walking (like when we went to Alton Towers). She is now 16 and is doing her GCSEs, she will be starting her A levels in September and plans on going to University to study graphic design.
When she was diagnosed we really thought she wouldn't make it, but she has amazed everyone with her courage and determination.
Welcome to Mumsnet, I hope everything goes well with your DD.

Thankyou for your kind messages !

She is now nine, had three lots of chemo, currently finishing inthree weeks,radiotherapy and lots of surgery. She has a problematic cyst next to the tumour, which keeps filling and filling, so she has a drain which they drain weekly with a butterfly needle. She has a weakness to her right side, no vision in one eye and limited in left (tunnel ). But she goes to school everyday and does ok

My daughter was diagnosed with a brain tumour at 18 months and it was on her brain stem. It was benign but not all of it could be removed so a small amount remains. Drs didn't think it would grow. She has had regular scans and is due to have her last one next year which will be 10 years after she was diagnosed. She was left with mild left sided hemiplegia but can do most things apart from running. Have never met anyone with a similar problem

Hi lydle3,

Sorry to hear about your daughter and hope she's doing okay today. I say 'today' because I take things day by day with my DS who is 3 and was recently diagnosed with cancer. It's called Parameningeal Alveolar Rhabdomyosarcoma and has a 50% survival rate. Please feel free to have a read of my blog leosteam.blogspot.com/ which I try to keep updated as you may find a few things such as the emotional roller-coaster we feel on a daily basis. Feel free to drop me a mail also if you fancy an email chat.

Hope you're okay.
H