choroid plexus carcinoma

[twotabs]

[nhalford]

[twotabs]

hi nicky, sori to hear about your son ben, but it all sounds like its going as well as poss. has he started radiother yet? tabitha sailed thru this, no tiredness, minimal sickness, just very burnt ears and bizzarely constipation! compared to the chemo it was a doddle! tabitha is well at the moment, next scan feb 11, results feb 15, its just one long waiting game. i worry constantly! how is ben now, and how did you discover he had cpc x nikki mum to tabitha 3 choroid plexus carcinoma

[nhalford]

Hi Nikki, Ben started radiotherapy this mon got 30 lots of total spine & head. He doesn't seem too bad at moment, but glad you mentioned constipation as he hasn't been for 2 days & is usually regular!! We're stayin at clic house most nights comin home weekends & once in week for a break! He isn't too bad at the moment still eating,gets tired few hours in the day but has a bounce of energy late afternoon. It is a very worrying time, & comforting when talking to others going thru similar.
I think it was you who mentioned gene 52 mutation (i think it was called that!) have you heard anymore? Thinking of you, Nicky

[nhalford]

Hi Nikki & all cpc parents!
Am sorry but realised it wasn't you who mentioned the p53 gene mutation (even got number wrong!) but if anyone has got any info i would appreciate it.
I didn't reply to how i realised there was something wrong with Ben, but i knew he wasn't himself for about 4/5 weeks getting clingy, fussy eater, but doctors said it was a normal 18 month old, he was also sick for 5 consecutive mornings but fine afterwards the health visitor said there was a bug going around with same symptoms but will check him if it goes on for over a week!! The last straw was when he couldn't stand properly & went back to walking around furniture (kept losing balance unaided). The hospital did act very quickly which was good!!
Ben has just finished week 3 radiotherapy losing hair rapidly, losing weight & tired in the afternoons otherwise coping o'k at mo!
Will be thinking of Tabitha on Monday, please let us know how she gets on, our thoughts & prayers are with you all.
Would love to hear from any cpc parents!
Nicky