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A five-year-old who is battling a brain tumour has been singing Twinkle, Twinkle Little Star to get her through the toughest of times.
Olivia Taylor was just 17 months old when she was diagnosed and has had to endure gruelling treatment, but weekly music therapy with Gravesend's ellenor hospice is helping her cope.
Olivia Taylor and Ellie Fletcher in a music therapy session
With the help of her music therapist Ellie Fletcher, from Nordoff Robbins Music Therapy Charity, she has learned to express herself and to connect with her family and friends.
The sessions take Olivia’s mind off the chemotherapy she has been having and music also allows her to explore her other senses since she lost most of her vision.
Mum Lisa Taylor said: “Olivia has some really good friends. The kids at her school are amazing with her and because the music therapy is held during the school day it is just such a good way for her to connect with them.
"They can’t wait to be picked to join her for music on a Friday!”
Since being diagnosed with the tumour, an optic nerve glioma, she has endured 20 months of intense chemotherapy, a short break and then another 18 months of less severe chemotherapy.
Lisa said: “Luckily the second lot of chemo was less harsh and had fewer side effects. She has finished the chemo now and her next scan will be in June. Although we will never be in remission, we hope for continued stability. Treatment could potentially continue until she is 18.
“The tumour was a grade one which meant it was slow growing, but Olivia’s vision probably won’t return, although she does seem to have some light perception. At the moment she seems to have no cognitive deficit – just her loss of sight.”
Both Lisa and her husband Matt work full time but Lisa's job as a recruitment manager for a tech company means she can work from home on a regular basis. It allows her more time to spend with Olivia and her little sister Imogen, who is two.
Olivia has her music sessions at her school, Belmont Academy in Bexleyheath, on a Friday and on Friday evening she has her chemotherapy at the Queen Elizabeth Hospital, Woolwich.
Lisa said: “Belmont is a mainstream school which has a visual impairment unit so she can have cane training and help with mobility. She also knows all her letters in braille now.
“The weekly music therapy sessions are so important because when the other children are reading and writing, she is learning braille – but with music they are all learning the same thing and connecting with each other. Because she has music therapy, Olivia loves Fridays.
"I would recommend music therapy to anyone in our situation. It is one of the things Olivia has in her life that’s not medical.
“She has blood tests on Thursdays ready for chemo on Fridays and then she feels unwell until Monday or Tuesday, so the music therapy gives her something to look forward to. It’s a way to express herself, but not by talking to doctors and nurses. It’s not clinical.”
Olivia has also now started learning to play the piano and is having singing lessons.
Lisa said: “She’s a little trouper. She’s amazing. Her singing teacher says she has excellent rhythm. The teacher herself said she had to learn rhythm, but Olivia seems to have it naturally and she even writes her own songs.”
The sessions are split into two parts. At first it is just Olivia and Ellie and the two of them make music together through singing and playing instruments. Olivia particularly likes the big drums for their sound, and are tactile.
Later in the session, some of her school friends join in.
Lisa said: “For Olivia it’s not just about the sound, it’s about the touch. People don’t always realise that Olivia does everything that everyone else her age does and likes all the same things, but she is a bit limited with her mobility.
"She loves running and scootering, going to the park and climbing. We just have to be really careful.
“Olivia loves audio books and anything tactile, but her biggest thing is people. We are so lucky that she’s not shy; she’s just so personable and popular and has so many friends. She also writes her own songs and tells stories – she just loves words and has a super memory. Her baseline assessments show she is above average in her language skills, and that is despite her visual impairment.”
Olivia – who loves music, her cat, her sister Imogen and meeting new people – said: “Every time I’m with Ellie we sing different songs. I like things that are high, and my favourite song is Twinkle, Twinkle Little Star.
"I love going to music therapy because we start off just me and Ellie, then my friends can join in.”
Olivia’s favourite instrument is a spinning hand shaker called a cabasa. She and Ellie use it to construct little musical stories including one about Olivia’s pet cat, Sammy, adopted by the family two years ago.
She also enjoys spending time with her little sister and singing with her at the family home in Sidcup.
She said: “I love my sister because she is beautiful, and we have a lot of the same interests. Me and Imogen do share music, but I don’t share my jewellery with her.”
Ellie Fletcher joined the ellenor hospice charity as a music therapist a year ago.
Her clients range from children living with life-limiting illness, and those undergoing treatment for medical conditions, to bereaved youngsters who need to express their grief. She works at the hospice in Northfleet, in schools in the local community, in people’s own homes and online.
She said: “Music therapy gives children a chance to be listened to and responded to.
“I think all of us, regardless of what we face in life, can appreciate music in different ways. It can help you to be creative and motivated, but it can also help you to remember or to relax. It can also be a celebration. You can express a complexity of emotion and connect with others through music.”