Brain tumour: Emilie

Published: November 2019. Young person’s age at time of brain injury: 15 years.

In February 2018 Emilie was diagnosed with a brain tumour that was on her brain stem. She had an operation to remove the tumour and when Emilie finally regained full consciousness, over eight weeks later, she couldn’t walk, talk or eat. She could move her arms but not control her fingers. She could move her eyes, but they were crossed and unfocused.

Emilie’s mum, Ikuko, said: “When she came round it was devastating to see, she was vegetative. She must have known she couldn’t move but there was no way for her to tell us because she couldn’t speak.”

Rehabilitation

Following a seven-month stay at King’s College Hospital (KCH), London, Emilie went to The Children’s Trust (TCT) for specialist rehabilitation. Emilie stayed at TCT with her mum and dad for three months to re-learn how to walk, talk and eat again.

The specialists at TCT tapped into Emilie’s love of art and her creativity to help motivate her during her rehabilitation sessions. Working with clay, scrapbooking, cutting and sticking all improved her fine motor skills and helped rebuild new pathways in her brain. A craft highlight was when Emilie sold her hand-decorated glassware at TCT’s Christmas fair for which she managed to raise around £700.

Using a specially adapted trike Emilie’s core muscles strengthened and improved her balance. Not only did it help her physically, Emilie loved the freedom of riding around the grounds on a bike.

Emilie said: “I had to work hard in my physiotherapy to regain my balance, co-ordination and stability.” 

Emilie also shared her experience in The Children’s Trust’s Tiny Massive Moments campaign in summer 2019, which spread the message ‘Tiny beginnings using special things turn into massive moments’.

Talking about a breakthrough moment Ikuko said: “I’m sure you can imagine what a moment it was for her when she finally got to send that first ‘Hello, it’s me!!’ text to her friends. It was a way back into the world”.

Back at home

Emilie returned home in December 2018. She can now walk freely around the house, moving from room to room. Emilie can text and use Snapchat. She types on an ipad to communicate with everyone. She still has a tracheostomy.

Emilie went back to school in January 2019. She started attending one lesson a day and has slowly built up her time at school. Emilie was quite wobbly on her feet so to return to school she had to use a wheelchair. Since September Emilie goes to school full time, walking without the need for her wheelchair. 

Mum, Ikuko, said: “She was very nervous about going back to school but so far everyone has been very supportive. Emilie was very sociable before this and she’s managing quite well socially.” School has been very supportive and they have put in place ramps, classes on the ground floor and provided Emilie with a room for privacy to have medical interventions such as tracheostomy care, administering medication and feeds. Emilie, now in Year 12, is enjoying the challenges of studying A-levels. She is taking Maths, Chemistry and Biology. Regular physiotherapy, speech therapy and occupational therapy sessions are still continuing and they help her to keep making progress on her physical difficulties.

Ikuko said: “Emilie still cannot eat or talk and finds not being able to eat with others very upsetting and challenging. Other than that, Emilie is very upbeat about her other difficulties.”

In June 2019 a routine MRI showed that some of Emilie’s tumours have grown back and she needs to have radiotherapy to overcome them. Emilie’s condition means that these interventions and obstacles are ongoing for the foreseeable future. 

Emilie’s achievements so far

While Emilie was in KCH she raised over £3,000 for KCH paediatric neurorehabilitation team by giving drag queen makeovers to the consultants, nurses and other staff members. Not only was it a lot of fun the activity also improved her fine motor skills.

In October, Emilie was a winner of the WellChild Awards 2019. The WellChild Awards celebrate the inspirational qualities of the UK’s seriously ill children and young people, along with the people who go that extra mile to make a difference to their lives.

Emilie’s message to others with brain injury is: “Use your willingness to fuel yourself. Prove everyone who doubted you wrong. Keep going and never stop.”