For three years, I watched my son Rangga fight a losing battle against cancer in Dharmais Hospital, Indonesia. By February 2011, his illness had progressed beyond the expertise of the hospital’s medical team, and he was sent home for palliative care.
The next 40 days proved to be the most painful and life changing ones for me. Nurse Susi from Rachel House (a local NGO focussing on providing palliative care for children) helped to look after him and administer morphine to ease the pain. By 20 April, 2011, his condition took a turn for the worse and he could no longer talk or move. Nurse Susi and her team remained with Rangga until he passed away the next day.
This experience made me realise that beyond medical aid and pain management, palliative patients and their caregivers face other psychological and spiritual trials daily, and that a good care-giving system is essential. A doctor can prescribe medicine, but he does not necessarily feel the child’s illness. Likewise, a psychologist can provide therapy, but he does not experience the feelings of having a child with cancer.
I set up the Gold Ribbon Community with a group of mothers who have experienced deep, personal loss and want to help other parents who are struggling with the same difficulties. When I had a child who suffered from cancer, I didn’t know who could help me, who I could run to, or who I could share my experiences with. Rachel House helped to treat Rangga at home, where we had the support of his father, brother, uncle, aunt, grandparents and neighbours. Because of that, he passed away with a ‘high’ quality of life.
These experiences inspired me to help spread (the awareness of) palliative care, because in Indonesia, not everybody knows about it. If people understand palliative care, they might be calmer facing death. That is what we hope for — that a child will be calm in the face of death.
I also always share my experience with other parents so they won’t be derailed or blame God, should their child pass away. The most important thing for us (as parents) is to remain mentally strong and hold on to hope.