Nara was diagnosed with advanced stage neuroblastoma, a cancer of the nerve cells, at just 4 years old. She received several rounds of chemotherapy – but each time her cancer would come back stronger. Soon her parents were faced with heartbreaking choice: another round of painful chemotherapy with no guarantee of success, or end chemotheraphy and seek palliative care for Nara.
Her parents made the difficult decision to opt for palliative care for Nara. Their hope was that it will allow Nara to experience life as any other child, and live her remaining days at home amongst her family and friends, free from pain. Rather than wait for death, Nara and her family wanted to celebrate life, because “for as long as she breathes, there is hope”.
Nara knew that she had cancer, but it is not clear how much she understood of the cruel disease, other than that she had to stay in the hospital a lot and take tablets and endure needles. She remained a strong opinioned, hugely independent, bundle of joy, with an insatiable love for art, whether at school or at the hospital.
At the time, Rachel House was the only pediatric palliative care service in Jakarta. Nara’s parents sought out our support. Through home visits, texts and calls, the family received the critical support they needed from Rachel House medical team, especially when Nara developed worrying symptoms as her illness progressed.
Nara considered the staff at Rachel House as her friends, especially Nurse Alisda with whom she developed a very special bond. She even went so far as to make Alisda a Barbie wedding card, when she was no fan of Barbie!
The support from Rachel House nurses allowed Nara to live her remaining days with joy and free from pain. Our dream is for every child living with life-limiting illnesses in Indonesia to be able to live their lives with the joy and dignity that they deserve.
Will you help us support more children living with serious illnesses, and their families, to live pain-free and with joy? Donate here.