Sylvia’s Story

Sylvia

Patient Name: Sylvia
Age: 14 years old
Patient admission date: May 2010
Patient passed away on: November 2010

Patient History

“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.

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Baz’s Story

Baz

Patient Name: Baz
Age: 8 years old
Patient admission date: 21st November 2008
Patient passed away on: 20th July 2009

Patient History

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.

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Siska’s story

Siska

Patient Name: Siska
Age: 13 years old
Patient admission date: 3rd April 2009
Patient passed away on: 6th May 2009

Patient History

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.

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Building the service

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.

Training & Skills Development

Visiting Palliative Care Nurse Educator

Jan with Betty, Betty's father and Rachel House team

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.

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Netty’s Story

Netty

Patient Name: Netty
Age: 13 years old
Patient admission date: 6th February 2009
Patient passed away on: 1st April 2009

Patient History

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.

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Siti’s story

Siti

Patient Name: Siti
Age: 3 years old
Patient admission date: 18th March 2009
Patient passed away on: 17th April 2009

Patient History

Siti was the only child of a young couple from West Jakarta. She was first diagnosed with cancer in July 2007, a year after she had fallen in the shower while still learning to walk. According to Siti’s parents, the fall had resulted in a bad wound around her coccyx that never healed, and all bowel movements were increasingly obstructed and painful.

When the pain and bowel obstruction did not ease 4 months later and swelling in the stomach had begun, Siti was referred to Dharmais National Cancer Centre, where chemotherapy treatment was immediately administered.

15 months of chemotherapy later, tumour mass continued to grow and pain persisted. Tragedy struck again when the oncologist attempted a surgery to remove the tumour mass in the hope of easing the pain. Siti was paralysed from waist down post surgery and they also discovered that the cancer had spread to her liver.

This was when Siti was referred to Rachel House.

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Tedi’s Story

Tedi

Patient Name: Tedi
Age: 12 years old
Patient admission date: 31st October 2008
Patient passed away on: 17th December 2008

Patient History

Tedi was taken ill in August 2007 with loss of appetite, dry throat and tuberculosis. Laboratory tests of the blood revealed abnormalities with eventual diagnosis of acute myeloid leukemia.

In February 2008, Tedi began chemotherapy treatment at Dharmais National Cancer Centre (“RSKD”). Unfortunately, the treatment was not successful in keeping the cancer at bay.

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The year in review

As 2008 comes to a close, we look back to give thanks for the celebratory moments and blessings of the past 12 months, and review the challenges that came our way to remember the lessons learned.

Operational Review

First batch of medical team recruited

First batch of medical team recruited

The first 6 months saw the team busy with preparations for the launch of our first inpatient service in a location which subsequently fell through. However, none of the work completed under the guidance of Dr Lily Soehartono went to waste. The team of nurses and doctor she recruited re-organized themselves quickly to launch Rachel House’s home care service for children with cancer.

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First inpatient pediatric palliative care service launched!

First Inpatient Pediatric Palliative Care

Rachel House’s first inpatient pediatric palliative care unit was launched on 1st December 2008 after a journey which has taken us nearly 2 years and countless hurdles, challenges & heartbreaks.

Inpatient Pediatric

 

The inpatient facility begins modestly with 3 third-class beds in a ward within the premises of RS IMC, a general hospital located in Bintaro (South Jakarta). Here, we will begin caring for children with terminal cancer and HIV.

 

 

The 2-short weeks leading up to the launch of our service were hectic but heart-warming times. Rachel House’s faithful supporters rallied around us with help, ranging from transport assistance, laundering of bed sheets and blankets (donated by Mandarin Hotel) and donations of children’s clothes and toys to renovations and painting of the ward to get us ready for the launch.

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Adi’s Story

Adi

Patient Name: Adi
Age: 18 years old
Patient admission date: 31st August 2008
Patient passed away on: 8th October 2008

Patient History

Adi was taken ill in August 2007 with loss of appetite, dry throat and tuberculosis. Laboratory tests of the blood revealed abnormalities with eventual diagnosis of acute myeloid leukemia.

In February 2008, Adi began chemotherapy treatment at Dharmais National Cancer Centre (“RSKD”). Unfortunately, the treatment was not successful in keeping the cancer at bay.

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