Posted on Wednesday 10 June 2020
Tayen’s story – “It’s normal for us to be at home and in isolation, she knows where all of her family members are, her anxiety is much better at the minute”
Tayen, now eight, was 22 months old when she was diagnosed with Neurofibromatosis Type One (NF1). Over six years later, Tayen, who is blind and struggles with her mobility, is now on her fourth round of chemotherapy. She is currently shielding at home with her Mum, Dad and three older brothers, and filling her time with doing what she loves most; drawing!
“It started when she was eight months old, she seemed to just not be very happy. She was always a super happy baby and she just seemed to be miserable, and had picked up every infection going. Doctors would say they didn’t know what was the matter with her. I noticed her eyesight was quite poor, everything was being brought up to her face so she could see it.
“We really felt initially our concerns were not taken seriously, despite me saying I knew something is very wrong and there was clear evidence of developmental regression. They said if she’s the same in six months’ time they would give her an MRI. Nine days after she had a seizure in the middle of the night. Her dad heard noises on the way to a night shift at 2am, which was so lucky. She was having a seizure for over an hour. We rushed her in, she was hooked up to everything and had antibiotics, and wasn’t really herself when she came round.
“They said they would do the MRI and I said ‘thank you’ because I knew they would find something on that scan, it was surreal I knew, I just knew they’d find something, but I didn’t know how bad it was. They came back and said she’s got tumours along her optic nerve and brain, they gave epilepsy medicine – we went home after a week in hospital and then Bristol Children’s Hospital phoned up and said we need you in for a week to start chemotherapy straight away. I was cross with myself because we knew it was bad but they’d never mentioned Chemotherapy and it hadn’t occurred to us to ask, so the floor swept under us again. The drive up to talk to them I remember thinking ‘we are going to do this, we will not fall we will do this as a family’.
“She is still on chemo now and will need it on and off for the rest of her life. She shouldn’t be able to do half the things she can, but she does it in style. Chemo is tough enough let alone having it four different times. She had 18 months of chemo then 18 months off, one year then one year off then six months then gave it a rest, and now she is back on for a year of treatment. As soon as anything grows or is active they put her back on chemo.
“Hospital is a safe place for her, she almost enjoys going as she knows they make her feel better. She always functions better on treatment. It’s just normal for her.
“Travel to the hospital is about an hour on a good day – so over an hour there and back. It’s difficult, it’s a little bit easier now the boys are older but it’s tricky as Tayen doesn’t do well on long journeys, it requires two adults in the car, as the long journey is overwhelming and makes her shut down, is non-verbal and can be sick. Her care is almost always 2-1.
“She has had so many side effects – she has hypothalamic dysfunction – as she’s had so much chemo over the six years. It’s trying to pull apart what side effects are chemo related and what aren’t. It has affected her mobility, her hands and feet do not have the sensation anymore which affects her ability to learn Braille. She loves doing pictures for people – we make everything accessible for her.
“It’s normal for us to be at home and in isolation, she knows where all of her family members are, her anxiety is much better at the minute. When the boys are all at schools it was always a worry about what they’re bringing home to Tayen, so now it’s good we’re all under one roof so it’s alleviated a worry the whole family has.
“I feel lucky we have a nice garden and it’s contained so it’s our space. It’s the therapy side I worry about – she has hydrotherapy. Her muscle is going, we’re trying to keep her mobile and moving so we don’t lose all the work we’ve been doing. We’ve put her bike on a stand so she can go on that in the garden. It’s a lot of thinking outside of the box. I can’t bear the thought of her losing any more of her mobility, she was doing so well with hydrotherapy and getting confident in the water, and we fought so hard to get that therapy in the first place.
“It’s worrying whether I’m doing enough – it’s difficult being confined, keeping four children mobile and keeping up therapy and functioning as a family.
“From Tayen’s point of view, she is coping much better because on Wednesday with chemo, there are now less people and it’s less busy so her anxiety is much lower. Kev always has Wednesdays off for her chemo days so we can go together but only one parent is allowed in so we still both go together in the car on the journey up and generally he will wait in the car and I will take her in. She is still having play therapy when she waits for blood checks.
“Our CLIC Sargent Social Worker, Linda, has given us so much support over the years – financial, emotional support. It’s not just me, Tayen and Kev, she’s done sessions with the boys. When we see her in Bristol, Tayen struggles as it’s not her local and when we see her there it’s like a friendly face – she’s like a friend now, she’s not just the CLIC Sargent worker.
“We remember – we had been in for a few weeks and had been bombarded with information. I saw her lurking down the corridor and I thought ‘what is she doing?’ and she came in and introduced herself and said ‘here’s my number you can call or text at any time’. It was easy from the get go, there was no awkwardness. She went over the forms with me and posted it for me as I was stuck in the hospital.”