Last year, four-year-old Charlie was diagnosed with a high grade brain tumour - Diffuse Intrinsic Pontine Glioma - which is highly aggressive and difficult to treat.
Receiving that diagnosis was traumatic, but nothing could have prepared Charlie and her parents for her Convection-Enhanced Delivery (CED) treatment. During CED, chemotherapy drugs are delivered directly into the brain to reach tumours that cannot be removed through surgery. Charlie travels to hospital for this every 4-6 weeks, stays for three days, and has four catheters implanted into her brain via a port. The treatment is intense, distressing and exhausting to her parents too, who stay with her during each treatment.
In order to ensure Charlie’s cognitive functioning skills aren’t suddenly affected by the treatment, a nurse will carry out a set of tests once an hour. These tests continue throughout the day and night, which is confusing and scary for Charlie. So to ease her distress, our Music Therapist Natasha uses instruments and her favourite teddies to keep her focused and Charlie can complete them more quickly.
She also takes part in music therapy sessions each time she visits the hospital. Although she was a little quiet and hesitant in her very first session, she has really engaged with it over the last year - making up songs, playing instruments and even singing. She has several favourite nursery rhymes that she loves to sing, and is a big fan of all Disney princesses and their songs! Natasha uses adapted instruments with Charlie so that, even when she is very weak, she can express herself in a completely different way and have some fun.
In Music Therapy sessions, Charlie can take control of her situation, pointing out instruments for her parents and the nurses to play, and how to play them. Together they are creating many shared moments of joy and fun (for her parents and the nursing team too) within an incredibly stressful and worrying time. Sometimes the sessions act as an opportunity for Charlie to feel independent, telling her parents that they can leave her for music time! These moments also give her parents rare respite and feel able to leave Charlie knowing she is fully engaged and distracted in the music therapy session.
Despite going through the most difficult treatment, pain, fear, loss of communication and mobility, Charlie continues to show the most resilient, strong and energetic character. The music therapy supports both her and her parents during these challenging moments.