Following the visits to the optician and then the eye consultant at the hospital the next step was to have a cat scan. Our doctor played it down and said it was to rule things out and if nothing was found we could see a consultant at Great Ormand Street to see if she was falling over because of her gait.
The night before the scan we were at my parents house and Bern wasn’t even sure if he was going to come to the appointment as he was busy at work and we really didn’t think it was serious. I probably cancelled two lessons thinking I would be back at school in an hour and Emily would be back at the child minders. Just saying that, makes me realise that it wasn’t just us that was devastated in the following 24 hours. Our childminder was expecting her back after a routine scan! And I would like to give a shout out to our wonderful friend Rachel, the lady who looked after Emily from about 6 weeks until her diagnosis. My parents were struggling with the news as she was their first grandchild and my sisters, relatives and friends. Countless people who were so shocked with the dreadful diagnosis. Everyone’s day was shattered when we were kept behind to be told she had a shadow on her brain.
The ambulance was waiting and she was still unconscious from the anaesthetic she had to have for the scan. I went in the ambulance and Bern went home to collect clothes, toiletries, whatever he could considering he also was also trying to sort it all in his head, as was I, sat with the nurse in the back of the ambulance. Bless her- she was trying to be as comforting as possible. It was very unreal.
Arriving at Frenchay, which was old, draughty and noisy did not make any of us feel better. It was like an old hospital in an old film with at least 20 beds in two rows in a massive ward.
There were lots of questions from lots of different members of staff. Lots of waiting around – not knowing anything. Then the – we need to ring people, lots of who do we tell, what do we organise? We had mobile phones in those days but you couldn’t use them on the wards. There was one kiosk at the end of the ward that at least had a door on it. Once we got to the Children’s Hospital the phone was literally in the corner of the big ward with no privacy at all.
Who do you ring first? We rang my parents. That was such a difficult thing to do. I rang School and told them I didn’t know what it was, when I would be in, I didn’t know anything. More scans and then a shunt was fitted that night to relieve the pressure they said was in her brain.
I do remember waking up on the first morning. I was sleeping on two soft chairs pushed together and I didn’t want to open my eyes – hoping it was a dream but I woke up to a lovely lady telling me she was the CLIC nurse. I had no idea what that meant!
Looking back we seemed to spend a lot of time at Frenchay while they decided what to do. The prognosis was never good. It was an agressive tumour and the worst case scenario was that it would travel in the fluid down her spine and we discovered later that it had. Each time we were offered treatment we were given the odds. 20% chance of helping – I cant even remember if they ever said the word ‘cure’ I think probably not. But if she seemed well enough to have treatment we had it in case we were part of the 20% that it would work for.
I was often glad that we only had Emily. I saw parents trying to organise one or 2 other children, bring supplies in for the parent that stayed. Trying to be positive because as a parent if you were there for over 24 hours at a time with children with cancer all around you it was difficult to be positive, although in another way talking about it became sort of normal and when I spoke to people on the phone they got upset with the language I used. Again, the whole experience was unreal but very real. At least we only had to worry about her, but of course when we lost her – we had nothing.
A few days before Christmas we were moved to the old children’s hospital in Clifton to start the chemotherapy and honestly I had no idea what that was. What would happen, how she and we would cope. None in our family had had cancer and i had never visited anyone having treatment. I don’t know what I expected but what we entered was a ward of about 12 beds of children without hair either in bed or walking round or riding little cars followed by parents pushing trollys with bags of chemicals attached.
The night she went down to have a line put in her chest I think I was still in denial about what was going on but soon it all became ‘normal’ but not normal. We had sort of got into a routine of one of us staying for 2 days and then coming back and then the other going to work for a couple of days. Sitting around really wasn’t good for anyone and the staff insisted on trying to keep things as normal as possible!! Normal it certainly was not!
Our friends and relatives were AMAZING. They brought in hot food for us to microwave, we brought her sack of presents and put them under her bed, but as Christmas came her hair fell out and she was very frail as the treatment was strong. Scraping her lovely hair from the pillow in the morning was painful and I didn’t know what to do with it……
Christmas Day lunch with the staff on a big table in the middle of the ward was quiet – I think we were all just trying to jolly each other along. It was so bizarre! and a month or so later we came out for the first time for a few days. By then I was scared to not have the support of the medical staff with us.
Emily’s Gift is an Appeal being launched under the Pied Piper Charity Umbrella on March 10th, which would have been her 31st birthday. The Appeal is going to fund a psychologist on the Emily Kent Unit at Gloucestershire Royal Hospital for 10 years for the children having cancer treatment and their families.
The justgiving page is https://justgiving.com/page/emilysgift
To contact us email emilysgift@piedpiperappeal.co.uk
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