The remainder of January, February and the start of March went by in a blur of appointments. We saw community nurses, health visitors, an endocrinologist, an audiologist, and ophthalmologist, a psychologist, a vision impairment specialist plus Eleanor’s oncologist and many many nurses in both the Royal Marsden and our local shared care hospital.
I went back to work after a few weeks off but due to Eleanor no longer being able to attend nursery I reduced my days to only 1 day a week. My employers are an incredible support and continue to be which I am extremely thankful for. My Dad also flew over from Australia and stayed with us for a few weeks! #bonus
By the start of February Eleanor’s eyesight had rapidly deteriorated and we noticed that she was struggling to see almost everything around her. She was relying more on sound and touch than sight and on the 26th February, at an appointment with a consultant ophthalmologist, our little girl was certified severely sight impaired (the new, more politically correct way of saying ‘blind’ because apparently we shouldn’t say that any more!) Following that appointment people I bumped into would say how sorry they were and would ask how we felt, like it was some out of the blue news, in actual fact to me it felt like a relief. We were not just being over protective parents who analyse the crap out of everything, we were right, our daughter really couldn’t see and now someone official had agreed with us, it was all confirmed and we now have an actual certificate to prove it!
Eleanor took everything in her stride, each Friday we packed up the car and set off for the chemo appointment at either the Royal Marsden or Kingston depending on which drug she needed that day. On the weeks where she would just be having the Vincristine push, we were able to use Kingston, our local hospital. It took a lot of trial and error, not forgetting large amounts of screaming, but we started getting into a bit of a routine and learned what would keep Eleanor as calm as possible when they accessed her port, as well as things to help us cope with the whole ordeal (removing her shoes is now number one on the list after a few shoe in the face related incidents!)
As the weeks went by, Eleanor was becoming more used to hospitals and the nurses who treat her. She learned the names of the drugs she takes AND how to take tablets which is pretty impressive for any 3 year old! It all started to become a bit normal, which, as horrendous as it sounds, was what I had been hoping for from day one.
The future surrounding Eleanor’s sight is unclear. It is impossible to know that ‘if’ the tumour shrinks with chemotherapy, that she will regain any of her vision. All we can do is hope… and hope, and hope some more.