My 5 Year Old Daughter & her Grade III Bilateral Thalamic Tumour...............help?

Herbie39

Hi

My 5 year old daughter was diagnosed in June this year with a Grade III Glioma Bilateral Thalamic Tumour - it is deemed inoperable due to its location and the prognosis is life expectancy of 1-2 years with treatment. She completed her course of radiotherapy and initial course of chemotherapy in September and first reassessment MRI showed tumour shrinkage of approx 40%. She is also on a Phase 2 clinical trial involving fortnightly infusions of Avastin.

She has never grumbled or moaned throughout any of her treatment so far and we haven't given up hope of her being a miracle child. We are based in the UK however have had contact with institutes in the US who on seeing MRI images have all agreed with our consultants prognosis. Is there anybody on here with experience of the same? A Bilateral Thalamic tumour is extremely rare.......any help or advice or guidance would be gratefully received.