Neive commenced maintenance chemotherapy in April but sadly her end of treatment scans in September showed disease progression in the brain and spinal fluid. Neive went home on palliative care to be with her family. She passed away peacefully and gracefully in her own bed on 24th October at aged 6 years old with her Mum holding hands and surrounded by unconditional love.
Neive was 5 years old and had just started Year 1 when she was diagnosed with High-risk Embryonal Parameningeal Fusion negative Rhabdomyosarcoma. She was an energetic, active, happy go lucky little girl, prior to this and had never stepped foot in a hospital since she was born. After 3 weeks of agonising back and forth visits to the GP and local hospital, they finally agreed to perform an MRI of her brain as we felt she was displaying signs of a brain tumour.
Prior to this we were told it was a water infection, growing pains etc. She tolerated this reasonably well despite the toxicity and painful skin reaction to the protons. Her strength and determination was admirable during this period and her will to live shone through brighter than anything.
She even found the energy to enjoy the hotel treadmill and karaoke machine in the hospital. Although this time was challenging we also had some of our most treasured memories as a family in Manchester.
She commenced maintenance chemotherapy in April combining oral Cyclophosphamide and IV Vinorelbeine. This had some challenges and caused her blood count to drop lower than expected, she had to have the dose reduced but after this hiccup life resumed for her.
