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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Bayu’s Story

Bayu

Patient Name: Bayu
Age: 7 years old
Patient admission date: 6th December 2007
Patient passed away on: 10th January 2008

Patient History

Bayu was an adorable 7-year old girl who was admitted as the first patient in our inpatient facility in December 2008. Bayu’s family came from Magetan in Central Java. She was the 3rd child from a family of 4, with 3 other brothers.

She was diagnosed with Retinoblastoma in her hometown, Magetan, a year before she arrived at Rachel House. At the time, the doctor in the hospital had removed her right eye, with recommendation for radiation therapy following the surgery. Unfortunately, due to limited financial resources (Bayu’s father is a contract labourer and her mother a domestic helper), her parents could not afford the treatment.

By the time she arrived at Rachel House, the mass of tumour on her right eye had grown to the size of an orange, and the cancer had metastasized to her brain and liver

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Generosity of Spirit

The last 5 months have seen movement and changes within Rachel House. We have collected many committed and wonderful volunteers along the way and gained momentum in raising community awareness. At the same time, we have had to learn several harsh lessons which I hope have made us stronger and a great deal more realistic.
Updates

    • On-line donation – Sponsored by American Express

      Rachel House’s friends and supporters can now donate on-line with American Express. A wonderful facility offered to us at no charge by American Express! download form

    • 60-bed pediatric hospice in Cibubur – progress update

      With the help and guidance of Dover Park Hospice (Singapore) and Mercy Centre (Bangkok), our architects are finalizing the 4th draft architectural drawings for the 60-bed pediatric hospice in Cibubur, the first of its kind in the region!

      Ong Santosa and Winnie Alamsjah, the incredibly generous and highly talented architects who have agreed to take on the project as a gift to Rachel House, have been working with our Construction Committee since June on the architectural plans for the first stand-alone hospice in Indonesia. We are hoping to break ground and begin construction as soon as the all the licenses and documents are in order.

    • Pilot Project – issue of location

      We have been on the search for a small property to rent for our pilot project, but major obstacles remain.

      The main obstacles we have encountered are:

          1. Owners’ reluctance to rent the property to us once they discovered RH’s activities
          2. Neighbours’ objections, which meant that “ijin lingkungan” (approval of the community”) is
          not possible to be obtained for our operations
        3. Ketua RT (community head) objections

      But after all the months of hard searching and rejections encountered, we may finally be getting closer to finding a community that is more tolerant and accepting of our cause. We hope to be able to announce the good news in the coming days.

    • IT solution

      Two 14-year old boys dedicated their summer holidays in July to help build our Linux database system!

      Although schools have now resumed for them, Nicholas Hanley-Steemers and Forrest York are both still fully engaged and involved in the building of our systems! Most importantly, these amazing young volunteers have the total and complete support of their parents, who are guiding them behind the scenes to ensure executions of the projects go smoothly.

      Through these young and passionate volunteers, their schools and friends are also beginning to learn about Rachel House and are exploring ways to give us their assistance. The ripples of goodwill are spreading!

      This is exactly what we have prayed and hoped for, that children will be inspired to help other less fortunate children through Rachel House – that we will be able to inspire in children a sense of awareness for their community.

    • Networking

      Rachel House took part in the CHI (Children Hospice International) 18th worldwide congress in August.

      CHI (Children Hospice International) 18th worldwide Congress in Singapore

      We presented Rachel House to the worldwide congress of pediatric palliative care experts on 9th September. At the conference, we gathered pledges of assistance from numerous pediatric palliative care experts from around the world, ranging from Australia, South Africa, and the United States to Belarus. We will be looking at the possibility of training our senior nurses at the children’s hospice in Melbourne (the only country with pediatric hospice in the region), and arranging for pediatric HIV experts from South Africa to train our staff in Indonesia.

      APHC 2007 Conference in Manila

      We will be sponsoring a nurse from Carolus Hospital in Jakarta to take part in the Asia Pacific Hospice Palliative Care Network in Manila in September. Bernadette Marheni (Henny) is currently working (as a volunteer) to help us with the recruitment of nurses and babysitters.

Recruitment

We have begun the recruitment of nurses and babysitters! So, if you have contacts to any compassionate caregivers, please do refer them our way!

Recruitment of senior nurses is currently in progress.

Nurses

The first major obstacle we have encountered is the total lack of knowledge of “palliative” care amongst the nurses in Indonesia. We are starting from the most basic step: training of our interviewers in the basic knowledge of palliative care. A long road, but step by step we are getting closer to our dream that “no child should die alone, in pain and without love”.

Babysitters/caregivers

We are exploring babysitters training program at Carolus for the babysitters we hire. The alternative may be to hire babysitters from other cities in Indonesia – a recommendation from an orphanage we work closely with, Mekar Lestari, in BSD.

Training program

Palliative care is not currently included in the curriculum for nurses in Indonesia. This is obviously a serious problem for us. We are exploring the possibility of working with Flinders University from Australia to consider collaboration with universities in Indonesia to begin palliative care modules for nurses and caregivers.

Last year we sponsored a doctor from Indonesia to be certified by Flinders University in Palliative Care. Something we would like to continue doing to ensure the availability of palliative care resources in Indonesia.

Fundraising

While we are focusing our efforts in setting up the Rachel House operations, our community of friends and supporters have rallied behind us with incredible gusto with fundraising ideas and events. We are truly grateful for this incredible generosity of spirits.In the next few months, there will be several fundraising events organized by friends and luxury brands for Rachel House. To name just a few that are “brewing” in the pot:

  • Tod’s Charity Shopping Weekend on 30th November

    Tod’s will be holding a charity shopping weekend on 30th November – 2nd December in its Plaza Indonesia and Plaza Senayan stores. 10% of the proceeds from the weekend sale will be donated to Rachel House.

    In addition, an “iconic” bag will be auctioned during the weekend, where 100% of the proceeds will be donated to Rachel House.

    A tea party will be held on the 29th November to launch the weekend charity sale. Watch this space for more information!!

  • Fashion Show

    Our fundraising team (our “angels”) is working with the renowned fashion designer, Ari Saputra, to arrange for a fashion show in November where part of the proceeds from the sale of certain seats will be donated to Rachel House. More details of the fashion show will be provided in late October.

    As you can see, the past 5 months have had their ups and downs. We are indeed blessed to have been surrounded by wonderful people who have cheered us on when the road is rough and patchy. I remain grateful and humbled by the generosity of spirits in the people around us.