Hi Wifesam ..... and welcome.  I am so sorry to hear your story and can only imagine what you are all going through. I just wanted to say that there is another post 'Grade 4 brain stem tumour' on page 5/6 of the forum where another Mum is going through coping with her son's diagnosis.  I am sure she would also be pleased to talk to someone else in the same situation if you wanted to give her a post. Pleae post whenever you need support and remember the nurses are always here to talk to as well - their number is on page 1.  Sending you love x 

Wifesam - I am so sorry to hear about your son. An additional resource for you would be Focus On Rhabdo - a community of families, clinicians and researchers dedicated to making rhabdomyosarcoma a survivable disease. We are on the web at www.focusonrhabdo.org and have a Facebook page as well. Let me know if there's anything that we at Focus can do.

Alan Ehrlich
Chair, Focus On Rhabdo

My son had rhabdomyosarcoma back in 1996 he passed away in June 2000. What I can say is  cherish every single second with your  precious little boy. 

I always think my boy is free and flying free away from his  terrible illness! There is never a day when l think I will see him again in a different world a happy world. When the time comes for your  Beautiful boy be brave for him and carry on for him never ever give up. At the end my sons doctor was there and she said to my son run with the children

Best regards 

Shane from Hampshire England