In our new book, Heart Strings, we share the story of Asma (name changed), an 11-year-old diagnosed with a neuroectodermal tumour of the brain.
After surgery, radiation and chemotherapy, Asma was registered for home care follow-up. Just as she was discharged, pandemic lockdown was announced, leaving her father devastated and unsure how she would receive care. Her first home visit became a turning point, reassuring the family that support was in place.
When her tumour recurred, Asma and her parents chose comfort care and weekly high-priority home visits. She was clear that she never wanted to return to hospital. For over two years, she remained cheerful with minimal symptoms, enjoying colouring, reading and games at home. As her symptoms gradually increased, we continued to manage her care and support her emotionally.
Over time, Asma became bedridden and unresponsive, and her goals of care shifted. During this period, her father was diagnosed with glioblastoma multiforme and passed away shortly after. We supported her mother through bereavement, as she continued caring for Asma at home.
An advance care plan honoured Asma’s wish to remain at home. Our team continues weekly visits, providing symptom management and ongoing support to her mother during this profoundly difficult time.
Read their full story on our website, or in our book, Heart Strings, here.
You can also download your copy of Heart Strings here.
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