Sorry about the delay in replying but just for a change we have been in hospital ! His tumour was in his thigh and initially was 8cm, but intensive chemo reduced that by half before surgery. He has just got his cast off after 10wks of hip to toe cast. and now is working on physio. In August he is to have 6wks of radiotherapy so we are due to start the planning for that soon. The thing he finds hardest is that being in his leg it is really affecting his mobility and as a usually active 12 yr old boy thats tough !
I found MPNST info (esp in children) was quite hard to find initially & getting a sudden change in diagnosis was hard for him to accept but he is still smiling & has been back in school part time ! I really hope you find the info and support you deserve and that things progress for you both, I wont pretend caring for anyone with cancer is easy and the road is long - but stay strong and use your support networks and you will get there !
