About Toby's illness

Toby is a nine year old boy. He loves all sport, particularly cricket, has a brown belt in karate, loves playing the guitar and is a bird watching fanatic, but he has a brain tumour. This April, he was diagnosed with a Type 4 Ewings Sarcoma (pPNET) a very rare and particularly nasty tumour.


He was operated on successfully at the Queen’s Medical Centre, Nottingham where much of the tumour has been removed and is presently following an aggressive course of Chemo Therapy and Radiation treatment.  The treatment is expected to take some 12 months. 


Health professionals in the UK recognise that a particular more targeted treatment called Proton Therapy (but not available in the UK) could benefit Toby.  With the help of his Oncology Professor in Nottingham Toby has been sent to the Massachusetts General Hospital in Boston where this treatment is available and they have specific experience of his tumour.


While at the same time as he has had specialist radiation treatment in America Toby is going through a course of Chemo Therapy due to be finished sometime in March next year.  If anybody has any doubts about how horrific this treatment is they should read Lance Armstrong’s book, only difference is Toby and many children like him have to deal with a significantly worse cocktail of Chemo Therapy drugs. 

Toby comes to after surgery