Lala, my daughter aged 6 and half, was diagnosed with advanced stage Neuroblastoma on January 12, 2009. At the time, we were still living in Canberra where I was pursuing further studies on a scholarship. When Lala had a relapse in April 2010, we (Lala, Chandra and I) decided to return home to Jakarta for family support. Through the assistance of some of our close friends in Canberra and the doctor who looked after Lala at the Sydney Children’s Hospital, we got to know about Yayasan Rumah Rachel (“Rachel House” or “YRR”) and the palliative care services it provides to children like Lala. In mid June 2010, I met with the pediatric oncologist Dr. Edi Tehuteru at Dharmais Cancer Hospital (“Dharmais”), who introduced me to one of YRR’s nurses, Alisda Sihotang.
It takes Susi two and a half hours to reach Rachel House’s satellite in North Jakarta. A long, tiring journey by motorbike through the heavily congested streets of Jakarta, but it is essential. Her motorbike provides a lifeline to her patients. It’s the only way she can pass through the extremely narrow streets
of the slums of North Jakarta. This is where a large percentage of Jakarta’s poor live, in haphazard, crowded housing. Most of her patients are young children with HIV due to the large number of drug addicts and high level of prostitution within the area. For Susi’s own safety it’s important that she blends into her surroundings, because she puts herself at risk each time she enters the slums.
|Age:||14 years old|
|Patient admission date:||20th July 2009|
|Patient passed away on:||31st December 2010|
“Sister Luki, I am calling to say I have missed you and all the nurses at the hospital…” This was a call that came in April 2010 that reconnected Zaidin to help.
Zaidin is 14. He has been fighting cancer for over 2 years. In the middle of his battle, his mother died from breast cancer leaving him and his younger sister with his father as the main caregiver.
By the time of the phone call, it had been almost a year since his mother had passed away, and more than a year since he received any treatment or had any contact with Luki, the head nurse of the pediatric ward at the National Cancer Centre who had taken wonderful care of him.
It was through that fateful phone call that Luki found out that Zaidin’s mother had passed away, and it was also not long after that call that Zaidin was referred to Rachel House.
|Age:||14 years old|
|Patient admission date:||May 2010|
|Patient passed away on:||November 2010|
“Mom, I know I am dying. What is the point of spending more money on chemotherapy when we know it will not make the cancer go away! Please save the money for a business you can start when I am no longer here.” These words, spoken with such wisdom from a 14 year-old, finally brought home the brutal reality of the battle that was lost, young hopes dashed.
|Age:||8 years old|
|Patient admission date:||21st November 2008|
|Patient passed away on:||20th July 2009|
Baz was 7 years old when he was first brought to our attention in February 2008. He had been sent home by his oncologist with poor prognosis of no more than a few months to live. He had neuroblastoma.
But as soon as Baz arrived home, he insisted on going back to school, refusing any visits by the oncology team and proceeded to live life as a 7-year old would.
Unfortunately in September 2008, as his condition began to deteriorate, he had to stop going to school.
|Age:||13 years old|
|Patient admission date:||3rd April 2009|
|Patient passed away on:||6th May 2009|
Siska was the eldest of a family of 2 children. Her story is a great human tragedy.
It all began when Siska came home from a 3-day camping trip with bad stomach pain and high fever. After multiple visits to doctors and alternative medicines, Siska was finally referred to Dharmais Cancer Centre (“RSKD”) where she was diagnosed with ovarian cancer with metastases to the kidney. Chemotherapy treatment was carried out, after various surgeries and kidney drainage.
In February 2008 in the middle of the treatment, Siska’s parents were separated causing much distress to her family and for Siska in particular. Her treatment had to be terminated with her father’s departure, while her mother had to return to work to support the family. Siska was left in the care of a young helper in a rented room that she and her mother had moved to. Siska’s brother was sent to live with his grandmother in Central Java.
As we continue the journey deeper into the world of hospice care, and having cared for and accompanied 9 little souls in the last days of their journey, we find the continuous need to reinforce our medical team’s knowledge of palliative care – an area of medicine that is relatively new and not taught in Indonesia. This has led us to source trainers from our neighboring countries who have volunteered their time and skills to guide our team and our community in palliative care.
Visiting Palliative Care Nurse Educator
In February, a highly experienced palliative care nurse and nurse educator, Jan Phillips, spent 2 weeks with our team. While Jan’s home is in New South Wales (Australia), she has committed a significant amount of her time in the past 5 years volunteering to Hospis Malaysia in Kuala Lumpur. Prior to that, Jan was working in Pakistan at the Shaukat Khanum Memorial Cancer & Research Centre (“SKMCH”), assisting in the implementation and development of SKMCH’s first Palliative Care Team, and establishing the Palliative Care Training programme to be incorporated into the hospital’s curriculum for nurses, doctors and allied staff.
|Age:||13 years old|
|Patient admission date:||6th February 2009|
|Patient passed away on:||1st April 2009|
Netty was admitted at midnight on Friday, 6th February. She had insisted on going home after leaving RSKD, refusing to be admitted to Rachel House. However, by the evening of her first day home, we received a panic call for help as Netty had trouble breathing.
Netty suffered from end-stage Non-Hodgkin’s lymphoma with metastases to her lungs. She was on 5 litres of oxygen every day, battling bouts of high fever. She was weak, lying quietly in bed, lifeless and without smiles.