Hi all,
I'll get straight to it. About 8 months ago I noticed that my (then) 16 month old son had a slight wobble in his left eye. After discussing with our doctor we were refered for a brain scan. The scan revealed a mass deep in his brain along his optic nerve track towards the rear right side. We were then refered to child oncologist who believed it to be a low grade glioma. Following discussion between the Oncologist and the Neurosurgens, given the risk associated with a biopsey and the fact that he was perfectly happy, healthy and developing as expected it was decided that 3 monthly scans and behaviour monitoring was the way to go. First scan came with no change in size or shape and we began to hope that it would be something he would have his whole life with no further issue. He was also tested for neurofibromatosis 1 (NF1) or neurofibromatosis 2 (NF2) and was negitive for both.
Second scan was last week and out of the blue the mass has increased by 40%, a biopse has been scheduled for two weeks from now and we are terrified. Currently he is still perfectly happy, heathly, loving life and developing beyond our expectations.
Discussion with our Oncologist on potential treatment suggests that the location of the mass is such that removal by surgery is unlikely, he is too young for raditherapy which leaves chemotherapy for an extended time until he is old enough to under go raditherapy. He is 2 now so most likely over a year. Looking at the prognosis pages on this sight "In children who don't have NF1 but get optic nerve glioma the outlook is not quite so good, especially for very young children".
Everytime I hold him or he says "Love too Daddy" or I watch him sleeping it breaks my heart thinking about what he is about to go through and I can't take it for him or shield him from it.
We lost one child previously (not to cancer), the birth of our current son was the light in our lives. Really don't know how I would survive if the worst happens here.
Guess I'm looking for anyone who is going through the same, can offer advice... any ray of hope.
