The first chemo session was completed over Christmas and New Year at the old Bristol Children’s Hospital and we started 1995 in a daze. We had a CLIC nurse who came out to the house to wash her line, take bloods and try to explain what the hell was going on and a Malcolm Sargent lady who acted as a support for claiming for things we might need.
All the staff said that we should try to work and we started to develop a pattern of one of us always being with her and one working and we usually swapped half way through the week. Teaching at Dean Close was useful, as the boarders were there at the weekends & I could go in and teach on Saturdays and Sundays. At the time I was also playing in a duo with Ian Oliver as a duo called Clique. Our agent was in Bristol and we did most of our work in Bristol so I would keep my saxes under Emily’s hospital bed and Bern would come over and I would go out and do gigs! I often lost my voice probably from stress and Ian was brilliant at covering for me when all I seemed to have left at the end of a gig was huskiness!
Emily never walked after the shunt was fitted in Frenchay but she loved to scoot around on one of those little yellow little tikes cars. She scooted around the ward at Bristol, which wasn’t very big with one of us following behind pushing the trolly of chemotherapy – how crazy was that? or sometimes she didn’t have very much energy and she led in bed to take it. Most of the time I stayed I slept in the bed with her, being careful of all the wires and being woken every few hours when they did the obs but it was that or a big chair, and just being close to her was special. Just in case…
Eating was intermittent for Emily and us. There was a parents kitchen where we all tried to warm things up and it was a space to chat for the short time you were in there but everyone was in their own private battle with cancer & sometimes you didn’t want to talk to anyone, instead focussing on your own unbelievable nightmare.
I remember an evening when Emily had hardly eaten and she said she felt like Macdonald’s chips. I drove into the centre of Bristol to get her some for her to eat 2! Their appetites are so spasmodic. But we got to her 3rd birthday. March 10th. My parents, sisters, childminder, a little friend all came round. I was determined to keep her out of hospital so that we could have it at home. All she had on was a nappy and vest because as soon as she hit a temperature she would have to go in. Not great in the pics of her blowing her candles out, not in the pretty party dress she should have been wearing but we made it to that milestone.
Deep down we would have known that was going to be her last birthday but you don’t let yourself think it. You just keep going. Battling, trying to be positive, giving her everything that will make her smile.
She also loved Mr Blobby! She watched it with my Dad and she laughed and laughed. We took her to Blobby Land. We asked the doctor if we could as it was somewhere near Exeter I think. Looking back, I don’t think she was well enough to go to Blobby Land! When I look at the pics now – she looked sad and pale.
The hat collection was growing. Pink, blue, red, soft hats with a flower on the front was always on my shopping list and after she died I found so many clothes for her and me still with the tags on. If she went for a procedure for a few hours – I just shopped in Clifton while waiting. I just bought things – I didn’t really want them – I just bought them.
The launch for Emily’s Gift is 4 weeks away on what would have been her 31st birthday. We will launch an Appeal to raise £500,000 to fund a psychologist for the children on treatment on the Emily Kent Unit and their families for 10 years. The parents and siblings also need psychological help to cope with this indescribable journey.
Please follow the journey on social media and online.
https://justgiving.com/page/emilysgift
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