365 days later…

A year ago today our whole world turned upside down.

A year ago today we were told our daughter has a brain tumour.

It is 9:30pm on Friday 8th January 2016 and I remember exactly what we were doing this time last year. We were sat around a bed on one of the children’s wards in St Georges Hospital, London following an MRI scan. My whole body was in shock. Nothing felt real except for the fear that was slowly rising inside me. Eleanor looked fine, she couldn’t have a brain tumour. Every nurse that came near us may as well have been speaking another language, nothing made any sense at all.

Fast forward a year and that fear remains. Sometimes I can box it up, push it to the back of my mind but sometimes it creeps up on me and those are the days that feel long and frightening. With chemotherapy treatment comes a lot of forward planning but beyond those hospital appointments I take each day as it comes and do my best not to look too far into the future. It is something we have so little control over so why worry before it happens!

Despite the tragic news that was given to us on that day, the past year has given me an insight to a world I never knew existed. A world where love and support is offered in incomprehensible amounts, a world where family, friends and complete strangers rally to raise money for a little girl some have never met, a world where old friendships are rekindled and existing friendships wither, a world where families who have nothing in common but a poorly child are forced together and create unbreakable bonds in the confines of a children’s hospital.

Many of the things that initially caused me worry following Eleanor’s diagnosis are now second nature. I understand the medical terminology that was so daunting at the start, I understand what it means when her blood counts are low and the signs to watch out for which may mean she needs to be taken to hospital. I understand the importance of hygiene and healthy eating. In some ways our lives have settled, but in to a new kind of ‘normal’.

In terms of the tumour, as far as we can see, nothing has changed in a year. The most recent scan revealed its stubbornness and despite almost a full year of gruelling chemotherapy it has refused to budge a centimetre even with the change in drugs half way through the year. This is the reality of this type of tumour – the cells are slow growing and are not attacked by chemotherapy in the same way fast growing malignant cells are. We are playing the long game here… there are no quick fixes!