A Bold Step Towards Compassionate Community

On our 10th anniversary, Rachel House added bold strokes to the Palliative Care Ecosystem “tapestry” we have helped established in Indonesia, with the dream of making palliative care accessible and available for everyone living with life-limiting conditions. In 2016, our work and the influence of our work reached key stakeholders at all levels of the health system, including the prison hospitals and the School of Public Health, winning their support to bring us closer to the vision that no child should ever have to live or die in pain. 

Nurse and Patient

Nurse Yuni visiting her patient at home

Delivering Compassionate Care (Home-Based Pediatric Palliative Care Service)

We look back on the 10-year journey and are humbled to have been given the honour of caring for over 2400 children living with cancer or HIV and their families, providing them with compassionate palliative care and support during the most challenging time of their lives, helping alleviate their pain and suffering.

 

Building a Compassionate Community

We strongly believe that skilled and informed compassionate community members are an essential component to ensuring quality care for people living with chronic and life-limiting disease at home. Harnessing the spirit of gotong royong (collaboration) that is deeply ingrained in the Indonesian culture, Rachel House’s Community Network in Palliative Care (“CNPC”) Program has to-date successfully trained over 2100 community volunteers in basic palliative care skills and knowledge.

Monthly meetings are convened by Rachel House to forge strong collaborations between CNPC-trained community volunteers and health professionals in the Primary Health Clinics. As a result, multiple teams of community volunteers are now active and vigilant in making sure that no one in their community is left alone to suffer at home without care and assistance.

 

Community

CNPC-trained community volunteers in action

 

Nurturing Compassionate Palliative Care Professionals

The Clinic-in-a-Box fully accredited training program for nurses has completed its 2nd year, providing palliative care and homecare skills to now close to 100 nurses and nurse lecturers from some of the largest private and public hospitals and universities in Indonesia. The Clinic-in-a-Box training program is a critical component in Rachel House’s goal of establishing a palliative care ecosystem in Indonesia, to ensure that patients can be provided with compassionate care throughout the health system.

 

Clinic-in-a-Box in its 2nd year, nurturing compassionate nurses

Clinic-in-a-Box in its 2nd year, nurturing compassionate nurses

The surveys conducted to evaluate the effectiveness of the training program showed increased knowledge in palliative care skills in all the participants, particularly in the areas of pain assessment and management, and increasingly favourable attitudes towards a range of key concepts in palliative care including the delivery of bad news, caring for dying patients, administering morphine and patient referrals. The results of the surveys indicate the overall effectiveness of the training in improving the confidence of the nurse participants in negotiating complex issues in palliative care.

 

The 1st fully accredited Pediatric Palliative Care training in collaboration with The Cincinnati Children's Hospital & ICPCN, with the support of our young volunteer doctors

The 1st fully accredited Pediatric Palliative Care training in collaboration with The Cincinnati Children’s Hospital & ICPCN, with the support of our young volunteer doctors

In collaboration with Singapore International Foundation, Cancer Foundation and the Jakarta Provincial government, Rachel House continued to run the 3-year palliative care training for 80 medical professionals from 12 District and National hospitals in Jakarta. In November, we led a roundtable discussion facilitated by Dr Mark Meyer from The Cincinnati Children’s Hospital and attended by the medical directors and pediatricians from the 12 public hospitals, to discuss the challenges faced by each hospital in the implementation of palliative care. Following the success of the exchange, the roundtable will continue on a quarterly basis in 2017.

 

Rallying Support from Key Stakeholders

From outside the conventional health system, the Directorate General of Corrections, Ministry of Law and Human Rights extended an invitation to Rachel House to provide guidance on the national guidelines for palliative care in prisons and prison hospitals.

2016 also saw active training and roundtable discussions organised to engage medical and nursing schools and public health faculties of major public and private universities such as Universitas Indonesia, Universitas Padjadjaran, and Universitas Muhammadiyah Yogyakarta to build a body of research that will strengthen the case for palliative care inclusion in the health system.

 

Planting Seeds of Compassion Early: Medical and Nursing Students

To ensure a long-lasting impact in the health system, we are working to nurture a new generation of medical professionals who will be able to serve their patients with compassion and equipped with impeccable clinical skills. In 2016, Rachel House expanded its training efforts to include medical and nursing students, planting the seeds of palliative care values early in their career as health professionals.

We ran one-day introductory workshops for nursing students at Bani Saleh Nursing College in Bekasi, West Java, and Universitas Muhammadiyah Yogyakarta in Central Java, and provided palliative care training to aspiring doctors at YARSI Medical College. The growing interest in palliative care amongst medical and nursing schools have seen requests for Rachel House’s participation well into 2017.

Rachel House has also welcomed fresh graduates from medical schools as medical interns in our service. The greatest impact for many of these young doctors has been when they witness the patients in the intimacy of their homes, bringing the doctors face-to-face with humanity. 

 

Public Advocacy

The Living Wall is a Rachel House initiative designed to engage youth and students in a global campaign to increase the awareness of the plight of children living with life‐limiting illnesses such as cancer or HIV and to improve their access to pediatric palliative care. Nearly 20 schools nationwide have participated and launched the wall in their schools. We continue to drive the campaign through The Living (virtual) Wall (http://thelivingwall-id.org/) and social media (Facebook, Instagram, and Twitter).

On June 5th, The Living Wall presented at the Car Free Day on the main thoroughfare in Jakarta, reaching hundreds of people on their Sunday morning stroll or run.

On June 5th, The Living Wall presented at the Car Free Day on the main thoroughfare in Jakarta, reaching hundreds of people on their Sunday morning stroll or run.

In October, on the World Hospice and Palliative Care Day and  to celebrate the 10th anniversary of Rachel House, we shared our work on a live radio interview at Kantor Berita Radio. The show was distributed and broadcasted to hundreds of radio stations throughout Indonesia. For more information on all the publications, please click here.

It has been a fulfilling decade for all of us at Rachel House. We know that none of this would have been possible without our faithful supporters. For all this and so much more, we are eternally grateful. Thank you for helping us add life to the children’s remaining days.

Rachel House is Looking for an Accounting Officer

Yayasan Rumah Rachel adalah layanan asuhan paliatif anak pertama di Indonesia, menyediakan asuhan paliatif berbasis rawat rumah bagi anak-anak yang hidup dengan kanker dan HIV AIDS dari latar keluarga kurang mampu di Jakarta. Visi kami adalah tidak ada lagi anak yang hidup dan meninggal dalam kesakitan. Misi kami adalah memastikan asuhan paliatif tersedia dan terjangkau bagi semua anak Indonesia, agar mereka dapat hidup dengan bahagia dan bermartabat, di lingkungan yang penuh kasih sayang.

Yayasan Rumah Rachel saat ini mencari:

Accounting Officer

 

Lokasi:

Slipi, Jakarta Barat

 

Tanggung Jawab:

Accounting Officer akan bertanggung jawab dalam menyiapkan laporan keuangan dari segala kegiatan yang dilakukan Yayasan Rumah Rachel. Accounting Officer akan bertanggung jawab kepada General Manager.

 

Tugas:

Tugas-tugas Accounting Officer akan meliputi, tapi tidak terbatas pada:

  1. Membuat laporan penerimaan dan pengeluaran bank, petty cash, laporan aktivitas, dan laporan donasi setiap minggu;
  2. Memastikan semua voucher lengkap, sudah ditandatangani orang yang berwenang sesuai prosedur yang berlaku sebelum pengeluaran dana;
  3. Melakukan konsolidasi dan analisis biaya operasional bulanan dan kantor satelit;
  4. Mengelola dana di rekening bank, deposit, dan petty cash di bawah pengawasan General Manager;
  5. Mengelola penghitungan dan pembayaran gaji, tagihan-tagihan, penerimaan, pembayaran, penerimaan kas, penggantian kas, penempatan deposito (termasuk penghitungan bunga deposito);
  6. Membuat jurnal, menginput jurnal ke dalam program accounting, dan menyiapkan laporan keuangan setiap bulan dan akhir tahun;
  7. Bekerja dengan kantor audit untuk menjalankan proses audit tahunan;
  8. Menyiapkan dan melaporkan pajak bulanan dan tahunan, seperti PPh 21 dan PPh 23;
  9. Bekerja dengan tim program untuk menyiapkan Anggaran Tahunan;
  10. Memantau laporan advance/pengeluaran dana program-program Yayasan (layanan rawat rumah dan program pelatihan);
  11. Mempersiapkan laporan untuk donatur dan merespon permintaan donatur bila diperlukan;
  12. Dan tugas lain sesuai instruksi General Manager.

 

Persyaratan:

  1. Sarjana Akuntansi dengan pengalaman kerja minimal 5 tahun dalam bidang akuntansi;
  2. Berpengalaman menggunakan program accounting seperti  MYOB, Zahir atau Accurate;
  3. Memiliki keterampilan interpersonal dan komunikasi, serta mampu berpikir kritis;
  4. Mampu bekerja secara mandiri, dan juga mampu bekerja dalam tim;
  5. Diharapkan memiliki kemampuan berbahasa Inggris lisan dan tertulis yang baik.

Kandidat yang memenuhi persyaratan di atas diharapkan mengirimkan surat lamaran dan curriculum vitae beserta minimal dua (2) nama sumber referensi dan nominal gaji yang diharapkan ke noviati@rachel-house.org atau Yayasan Rumah Rachel, Graha Indramas Lantai 1, Jalan KS Tubun Raya No. 77, Slipi, Jakarta Barat 11410, sebelum tanggal 20 Januari 2017.

Ninety-Nine

Grace, a young doctor volunteering with Rachel House, reflects on her relationship with one of our young patients living with cancer, and how this patient has touched her soul. It’s a story about empathy, sympathy, friendship and loss. About plans, wishes and regrets. And about not having regrets. It’s about gratefulness. And it’s about the role and value of palliative care. But most of all, it’s the story about the courage, spirit and zest for life of an amazing 14-year old girl, who touched the lives of everyone around her.

I am a great fan of routine. I get absolutely distressed when my well-laid plans are interrupted.  This is especially so when it affects my mornings, a time usually reserved for myself. My routine typically starts with prayers and meditation, followed by breakfast, during which I scan through the latest news. On 2 September 2016, though, things were different. My morning routine was brutally interrupted by sad news of a loss. “Meisha has passed away at 02:30 hours today. May her family be given strength, courage, and patience.”

I recall running to my father’s room crying out, “Meisha has passed away…” and collapsing beside him crying my heart out. There were no words. Thoughts of her laughter passed through my mind, but I could only cry. I so much wanted to believe that she had not left us. Overwhelming pain enveloped my heart, and it was as if a thick cloud of sadness was hanging over my head.

I called Meisha’s mother, Ibu Lidia. I know that as a medical professional, I have been taught to provide support to families, but I was unable do that for her right then. Instead, we cried together. That day, my heart was shattered.

I could not even be angry about all the well-laid plans for the day that were going to be aborted. In fact, fully consciously and willingly, I abandoned all my routines.

But I am very upset! She left before I could fulfil her last request to me.
I am upset because she left before I could fulfil my promise to visit her.
I am upset. Not with Meisha, but with myself for delaying the plans to see her with “later, later”.
I thought we had more time. How could I have forgotten that she was someone whose every day is highly uncertain, and whose tomorrow might never come?

As medical doctors, we are taught empathy, which has a lower degree of relating to others compared to sympathy. In essence, we are taught to feel, but not to be affected.

So, it could be said that, on that day, I failed. I had in fact entered the territory of “sympathy” and let my heart be involved. But is that not reasonable given I regarded her not just as a patient? Because she was more than a patient to me. She was truly amazing, and she was my friend.

I still remember when we first met.

Meisha was a 14-year-old girl diagnosed with leukemia. When we first met, she had just regained her hearing after she had lost it for some time. She had asked the nurses from Rachel House if they could bring along some gospel music for her. When we played those songs, she sang along quietly, with a shy smile on her face.

The more we interacted, the more I realised what a special girl she was. She was bright and chirpy, and she loved everything that tasted and smelled of Korea. We traded and shared many stories – from remembering her favourite Running Man series, and the Korean dramas that we had seen, to the Korean artists we loved, and even the Song triplets that we adored. We enjoyed eating together at her home. Japanese cuisine or Korean cuisine, which she loved.

She was a young girl who loved to laugh, and knew a myriad of funny riddles she would quiz me with. Isn’t that amazing? Even in the midst of her troubles, she still loved making people laugh.

She was a girl with an amazing heart. Once, when we took her to a mall, she asked us to take her to the bookstore, Gramedia. We found this a little strange and wondered if she wanted to try to read, which seemed impossible to us at the time, because she had lost her vision a few months earlier. But it turned out that she wanted to buy a book at Gramedia, not for herself, but for her sister. Isn’t that incredible? She had to face many limitations, but still remembered to give.

She was also mature beyond her age. It would have been totally reasonable for her to blame everyone, including God, for her condition. But I learned from her that gratefulness should not be only for when we are happy. In the middle of all her suffering, Meisha remained strong in her faith. She was truly mature for a girl her age.

I remember telling her about the internship program that, as a doctor, I had to go through, while what I wanted is to truly race ahead chasing my dreams. I thought she would say, “Just go with the flow”, but instead she told me, “Pursue what you love.” Such courage, unlike me.

She really was a strong girl with great courage. I cannot imagine what it must have felt like going through all the therapies and treatments for her cancer, but she appeared stoic and patient throughout. There were just a few occasions when she’d moan, but I think that was totally reasonable. Even adults would complain, so you would just expect a young one to do that so much more. Incredibly, Meisha would always bounce back and be her chirpy self again. I still continue to wonder, what the source of her strength and patience was.

The last time we met, her smile was brighter than ever. A big smile despite the fact that her condition was deteriorating, and that she had begun to need morphine to help alleviate the pain she was beginning to experience.

Even though our encounter was brief, she has left me with many wonderful memories.  That explains the huge sense of loss I felt when I received the news of her death. A loss that, sadly, was accompanied by many regrets – there were so many things that I would have wanted to do or share with her. While strewing flowers on her grave, I whispered in my heart, “I wanted to tell you about the new Korean drama… I didn’t have time to tell you that I will be sent to Sukabumi for my internship… I was about to bring you a Bulgogi meal… but you are gone…”

My biggest regret would be that I did not manage to fulfil her wish to share her journey at my church! That was her biggest and most important wish. Why are there always regrets at the end?

When I shared my regrets with my father, he comforted me saying “At least, you and Rachel House’s nurses have brought joy and happiness to her in her final days.”

I’m not sure why, but hearing those words helped calm my anguish and heal my heart.

I feel grateful now. Grateful that my decision to volunteer with Rachel House has turned out to be the right one. I am grateful for all that I have learned there about the importance of palliative care. And I am grateful for having been part of the palliative care team at Rachel House which has provided care for these children. I am grateful for having been introduced to Meisha by the nurses at Rachel House. I am grateful that, at Rachel House, I was shown that my role as a doctor is not only to take care of the disease, but that it’s important to learn to “communicate heart-to-heart” with “the diseased” – the person living with the disease. I am grateful that I was taught not only to medicate, but to understand. I am grateful that, although there were many things that I did not get to complete with Meisha, I realise that through palliative care, we have managed to do a lot for her. Without palliative care, a lot more of Meisha’s dreams and wishes would have remained unfulfilled, there would be many more regrets, and it would be highly likely that Meisha would have died in a sad and painful situation.

With palliative care, we have provided Meisha with something that is infinitely more important for her. We did not only take care of her pain and symptoms, but we also put smiles on her face. We did not only fuel her courage, we also nourished her heart. We supported her during the most challenging moments of her journey, and we helped make some of her dreams come true.

Many people assume that palliative care is not that important. “Not now,” they’d say, “let’s only consider it when curative treatment is no longer viable.” Sadly, this means that many patients who need palliative care depart before having had the chance to experience the benefits of this service. In the eyes of many, including  medical professionals today, the value of palliative care is perhaps only “one”, with curative treatment valued far higher, putting a maximum value of “ninety-nine” on it if they can.

There is no doubt whatsoever that curative treatment plays an important role for patients living with life-limiting or life-threatening illnesses. But we should not forget that “99” is not complete or whole.

We often forget that, even if palliative care carries the value of only “1”, it has the potential to complete the “99”. We forget that without the “1”, there will be no “100”.

And yet, every patient deserves to have the best service we can provide, one that is holistic (physical, emotional, social and spiritual), to the very end of his or her life. In other words, every patient deserves a “100”, not just “99”.
And if every patient is treated in this holistic and complete way, then there will be no regrets, or the feeling that we have not given them our best.

I feel this is the case with Meisha. She deserved to receive a full and complete “100”, and we wholeheartedly believe and know that she received this from the palliative care team at Rachel House before she left us.

And because of this, there should be no regrets, for we know deep in our hearts that we have given our very best to her.

Farewell, Meisha. Thank you for all the lessons you have given me.

(By dr. Marceline Grace TJ)

 

Rachel House is Looking for a Communications Officer

Rachel House is Indonesia’s first pediatric palliative home care service, helping children living with life-limiting conditions such as cancer and HIV, and their families. Rachel House also train nurses, doctors and other health workers in palliative care and is building an ever-expanding network of community volunteers who have been trained to support patients and their families in their community along their palliative care journey.

Our vision is to never see a child live or die in pain. Our goal is to help ensure palliative care is available for all Indonesian children living with life-limiting and life-threatening conditions, enabling them to live with joy and dignity in a loving environment.

Location: Slipi, West Jakarta

The Role: With a strong desire to contribute to positive social change and to help improve the lives of people from disadvantaged backgrounds, Rachel House’s Communications Officer will build public understanding of and awareness about the need for palliative care, lift Rachel House’s public profile, and communicate with a wide range of local and international stakeholders about Rachel House’s programs, goals, plans and progress. The Communications Officer will also contribute to increasing access to funding.

Main responsibilities include:

  • Communications strategy and plan – Develop and implement Rachel House’s communication strategy and plan in support of the organization’s vision and mission, and in collaboration with the team.
  • Stakeholder management – Reach out to a wide variety of stakeholders ensuring their communication and information needs are met effectively and keeping them up-to-date about Rachel House’s programs, goals, plans and progress. Stakeholders include, but are not limited to, government officials, hospital management teams, professional associations, medical professionals, health centers, international nursing and palliative care specialists, nonprofit organizations, corporations, donors, fundraisers, volunteers, universities, schools and the general public.
  • Producing communication materials – Develop and produce a wide range of communication materials in various forms and for various audiences in support of Rachel House’s mission and goals. This includes, but is not limited to: social media content, website content, presentations, speeches, articles, press releases, brochures, flyers, posters, reports, newsletters, video scripts, and photos).
  • Communication focal point – Work with colleagues from across Rachel House’s programs supporting them with their communication needs and engaging them in providing information and updates from the field in support of Rachel House’s communications strategy.
  • Community relations – Use PR and communication skills to uphold the reputation of the organization within the wider community.
  • Media management – Establish and cultivate productive relationships with the media in print, online, TV, radio and identify and use media opportunities that can lift the profile of Rachel House and palliative care. Engage team members in these media opportunities as required.
  • Public relations/Spokesperson – Deal with media inquiries regarding the activities of Rachel House and act as Rachel House’s spokesperson answering any questions confidently and with authority, identifying possible communications and media risks and develop strategies to mitigate them. Engage other Rachel House staff as spokespeople as appropriate and support them in this work, for example by arranging speeches or presentations, media interviews or press conferences.
  • Media monitoring – Monitor and analyze print and online media for all news related to Rachel House and its work, palliative care, nursing or any related topic such as cancer, HIV/AIDS, national health issues, public health, medical developments etc. and ensure relevant pieces are further shared with the relevant stakeholders and any actions required discussed and organized.
  • Event management – Plan, organize and manage events aimed at raising awareness of palliative care and Rachel House’s work and mission, including sponsored events, public events, office talks, presentations, fundraisers etc.
  • Social Media – Develop and implement social media strategies and maintain a regular and productive presence via engaging and informative posts and actions on Rachel House’s social media pages, building an expanding community of followers (Facebook, Instagram, and Twitter).
  • Website work – Produce and curate website material.
  • Fundraising – Contribute to fundraising through proposal writing, preparation of pitch decks and managing online fundraising campaigns.
  • Reporting – Report regularly on the implementation of Rachel House’s communication strategy and plan.
  • Volunteer management – Develop an effective and strategic volunteer strategy and engage new and seasoned volunteers in Rachel House’s activities to the mutual benefit of Rachel House and the volunteer themselves. This includes advertising required volunteer positions and dealing with all solicited and unsolicited volunteer applications.
  • The Living Wall Project – Manage “The Living Wall” project and volunteer team. The Living Wall is a Rachel House initiative to engage young people in a world-wide campaign to increase awareness of children living with life‐limiting illnesses and to improve their access to pediatric palliative care. The Living Wall reaches out and inspires through The Living Wall website and Virtual Wall, an active presence on social media (Facebook, Instagram, Twitter), working with schools and organizations to organize their own Living Wall and a yearly event (at Car Free Day).

Qualifications

  • Minimum Bachelor’s degree in Public Relations, Communications, Journalism or related field

Experience

  • Minimum 2 years’ related experience (for example as Communications Assistant or Communications Associate)
  • Experience in implementing communication strategies and plans
  • Social media and digital expertise

Key Skills

  • Excellent written and verbal communication skills, with the ability to write for and communicate with various audiences.
  • Skilled in writing, editing and creating a wide variety of content for various media and purposes (social media content, website content, presentations, speeches, articles, press releases, brochure, flyers, reports, newsletters, video, photos).
  • Fluency in both Bahasa Indonesia and English, verbal and spoken, and with impeccable grammar and spelling.
  • Solid presentation skills (both in Bahasa Indonesia and English).
  • Impeccable attention to detail.
  • Ability to process a large amount of information and news from various sources quickly and efficiently, and to distill key messages.
  • Well-developed organizational and time management skills.
  • Ability to handle a wide variety of tasks and projects concurrently, with the ability to (re)prioritize.
  • Deadline-oriented.
  • Excellent problem-solving skills.
  • Ability to work independently with minimal supervision.
  • Understanding of child protection, medical confidentiality and media policies.
  • Understanding of the use and management of social media and information technology instruments in accordance with the needs of an organization.
  • Good command of office suite (Word, Excel etc.).
  • Basic command of multimedia software, design applications (e.g. InDesign, Illustrator) and photo editing.
  • Familiar with cloud based applications (e.g. Google calendar, Google Drive)

Attributes

  • Excellent interpersonal skills.
  • High level of self-motivation, initiative, and creativity.
  • Proactive attitude.
  • Enthusiastic and energetic.
  • Flexible.
  • A team player.
  • Mature.
  • Diplomatic manner and ability to adapt to a range of cultures and experiences in interacting with program staff, beneficiaries, stakeholders, contacts and the public.
  • A strong desire to contribute to improving the lives of people from disadvantaged backgrounds.
  • Keen to learn about health topics, and palliative care in particular.
  • Willingness to travel across Jakarta for work.

Desirables

  • Experience with online fundraising campaigns and platforms.
  • Design skills
  • Eye for photography or photographic skills
  • WordPress
  • Donor Report Writing
  • Writing Proposals
  • Previous experience in developing communication strategies

Please send your curriculum vitae along with a cover letter by no later than 31 October 2016 to noviati@rachel-house.org, or to Yayasan Rumah Rachel, Graha Indramas Lt. 1, Jl. K. S. Tubun Raya Kav. 77, Slipi, Jakarta 11410.

“Uncle Dadan, why is the cat so big?!” – Teguh’s Story

Have you ever wondered what it is like for Rachel House’s nurses to care for children with life-threatening illnesses in and around the metropolitan city of Jakarta? Then read this story by Dadan, one of Rachel House’s nurses, about his journey in bringing love and care to Teguh, a five-year-old boy living with HIV.

“The first time I visited Teguh at his home, he refused to speak, or even look at me. But of course I did not give up. I asked him to show me some of his stuffed animals and played with him until, eventually, he came around and allowed me to examine him.

Because Teguh’s immune system was severely compromised by the HIV infection, he constantly suffered from conditions such as diarrhea, fever, and coughing. He was also malnourished, and was often too weak to play as other children do. As his nurse, I made sure that, one by one, Teguh’s symptoms were managed and that he was comfortable at home. It was not easy, because Teguh had not started taking HIV medications yet. These medications, often called ARV or antiretroviral, work by keeping the HIV virus level in the body low. This in turn helps the body’s immune system recover and function as it should. However, for the ARV medications to be effective, they have to be taken in a disciplined manner, and that means every day at the exact same time. If that’s not happening, the virus will become resistant to the medication. Unfortunately for Teguh, the doctors did not want to prescribe the needed ARV medication for him because there was no one at home who could administer and monitor his medication.

Teguh’s mother had died when he was three years old and his father had abandoned him. He was living with his uncle, who was busy working and did not pay a lot of attention to him. Day in day out, Teguh spent most of his time alone in the house. Every now and then his grandfather, a garbage collector, would visit him after work and bring him something to eat. But mostly, Teguh just looked after himself.

As time passed, I came to be more than a nurse to Teguh. I became a friend. I would sometimes bring him his favourite cartoons, such as BoBoiBoy, Thomas the Tank Engine, and Power Rangers. Together with other Rachel House volunteers, we would keep him company and watch the cartoons with him.

Every time I was getting ready to leave, Teguh would get upset and angrily throw his car toy at me. For a child who was always on his own and never felt loved, he must have been very happy that there was someone in his life who spend time with him and played with him.

One day, Teguh told me that he wanted to see a real tiger. I realized after talking more about this with him, that he had never gone for an outing in his entire life. So we made plans to go to the zoo together, which got him really excited.

On the day itself, he woke up very early, showered, got dressed, and by 6 am, he was all ready to go! Together with a few of Rachel House’s volunteers, we drove to Taman Safari Zoo in Bogor. As it was a Saturday, the traffic was congested but not once did Teguh complain. It was the happiest I’ve ever seen him, and certainly the most talkative and energetic. “What kind of car is that?”, “Are we there yet?”, “How long before we get there?” The car was filled with joy and laughter.

Teguh at the zoo

Teguh at the zoo

It was a big day and a long journey to the zoo and back, but when I saw the sheer wonder and delight on Teguh’s face, I knew it was all worth it. He marveled at everything he saw. When he finally saw the tiger, he asked, “Uncle Dadan, why is the cat so big?!”

Teguh passed away less than two weeks after the trip to the zoo. A few of us went to his funeral. He was buried alongside his mother.

The sounds of his laughter and the memory of the joy on his face left a huge imprint on my heart, and in the hearts of many at Rachel House. Although I am sad that his life was so short, I am comforted by the knowledge that we brought him love and happiness during the brief time he was under our care – and this gives me courage and determination to continue my work as a pediatric palliative care nurse at Rachel House.”

Meisha – Bersyukur, Dapat Membuat Ia Tetap Semangat

Meisha tidak banyak berbeda dengan anak remaja seusianya. Ia anak yang amat manis dan ramah yang suka sekali menyanyi dan menggambar. Di sekolahnya, ia juga termasuk anak yang cerdas. Lucunya, ia bukan hanya pintar dalam bidang pelajaran namun juga dalam mencari tambahan uang saku! “Dia ini punya otak bisnis,” begitu Mama Meisha menyebutnya. Mulai dari pembatas buku, pulpen lucu hingga kue kering buatan Mama pun laku dijual melalui blackberry miliknya.

Namun, ada satu hal yang membedakan Meisha dari teman-temannya.

Meisha menderita leukemia; suatu keganasan yang tak hanya menyerang sel darah putihnya, namun juga menggerogoti tubuh serta masa remajanya.

Sejak didiagnosis leukemia pertama kali pada tahun 2013, kehidupan Meisha memang berubah drastis. Perjuangannya untuk bertahan hidup pun dimulai. Bergelas-gelas kunyit ditenggaknya, kemoterapi pun dijalaninya. Namun, dengan dukungan penuh dari keluarga serta anggota gerejanya, Meisha pun akhirnya sempat dinyatakan sembuh setelah menjalani dua tahun perawatan.

Sayangnya, kesembuhan itu hanya bertahan kurang dari tiga bulan. Pada pertengahan tahun 2015, Meisha tiba-tiba tidak dapat melihat. Meisha pun segera dibawa ke rumah sakit untuk melakukan pemeriksaan. Saat itu, dokter mengatakan bahwa penyebab penurunan penglihatan Meisha adalah karena glaukoma yang dideritanya. Namun, dalam beberapa bulan saja, kondisi Meisha pun kian memburuk. Ia sama sekali tidak dapat melihat dan juga tidak dapat mendengar! Hal ini membuat keluarga khawatir dan kembali menduga bahwa penyakit itu kembali bersarang di tubuh Meisha, sehingga akhirnya ia pun kembali dibawa ke rumah sakit.

Dugaan mereka benar. Dari hasil pemeriksaan cairan serebrospinal atau cairan otaknya (dikenal juga sebagai pungsi lumbal), diduga penyakit Meisha sudah menyebar (metastasis) ke otaknya. Namun, untuk menegakkan diagnosis pastinya, para dokter membutuhkan pemeriksaan lanjutan. Tetapi, begitu tahu ia sakit lagi, Meisha pun menolak. Ia bersikeras tak mau diperiksa lagi dan bahkan ia juga tidak mau meminum obat apapun lagi.

Ia marah; kepada hidupnya, kepada dirinya dan juga kepada Tuhan. “Banyak orang di luar sana, tapi kenapa aku yang harus begini? Aku masih empat belas tahun…” Hatinya hancur lebur. Karena kebutaannya, ia tidak bisa lagi menggambar. Ia bahkan belum selesai melengkapi gambar Song Triplet-nya, masih kurang sosok Manse yang juga disukainya. Yang paling menyedihkan hatinya, ia juga tidak bisa lagi berjualan. “Mau jualan gimana, aku kan nggak bisa liat,” katanya, dengan nada suara yang terdengar pasrah.

Akibat penurunan pendengarannya, ia juga tidak dapat mendengarkan musik kesukaannya lagi. Taylor Swift, Ellie Goulding, Ariana Grande, Hivi… Lihat, bahkan penyanyi kesukaannya pun sama seperti yang kita dengarkan di radio, bukan? Namun ia tidak dapat mendengar semua itu lagi.

Meisha marah karena harus merelakan masa remajanya. Di saat adik dan teman-temannya pergi field trip dan melakukan kegiatan lain, ia harus duduk di rumah dalam kegelapan dan kesenyapan. Bahkan kini, kesukaannya pun direnggut darinya. Ia kesepian, ketakutan dan hatinya penuh kekecewaan.

Namun, ia bersyukur karena suaranya tidak ikut diambil Tuhan. Dalam keterbatasannya, ia pun tetap bernyanyi dengan penuh sukacita.

Perlahan, Meisha belajar menerima keadaannya. Ia mulai bisa tertawa lepas. Ibunya pun mengajarinya ‘mendengar’ melalui goresan jari orang lain di tangannya. Meisha juga mulai mengisi waktu kosongnya dengan menghafal ayat-ayat yang menguatkan dirinya, sembari memikirkan barang yang dapat dijualnya bila penglihatannya membaik nanti.

Saat ini, pendengaran Meisha mulai membaik. Ia sudah dapat mendengar lagu dan bahkan sudah mulai mampu bercakap-cakap dengan cukup lancar. Ia juga sudah mulai dapat melihat cahaya, meskipun masih samar-samar. Perlahan namun pasti, ia menunjukkan kembali semangatnya yang sempat surut.

Meisha, seperti yang sudah kami katakan, ia memang tidak berbeda dengan anak remaja seusianya. Yang membedakan hanyalah leukemia yang diidapnya, yang memang menggerogoti masa remajanya, namun ternyata juga membentuk karakternya. Meisha kini adalah remaja yang tidak mudah putus asa dan memiliki pikiran yang dewasa. Ia adalah anak manis yang selalu belajar bersyukur dalam tiap keadaan dan semakin hari ia belajar menjadi pribadi yang semakin kuat dan tangguh.

A Light of Hope from the Community

 

In 2013, we began our efforts in bringing people together to care for those who are ill in their community. Today, Community Network in Palliative Care (CNPC) has spread across North Jakarta, where women, youth, community healthcare professionals, and Rachel House nurses work hand in hand to ensure that every child can enjoy their lives to the fullest. Watch Rachel House’s HOPE video above, a beautifully created by our friends at Anatman Pictures, to see these everyday heroes in action!

Sharif’s Last “Trip” to the Beach

Sharif was 2 years old when he was first diagnosed with Retinoblastoma. The cancer was first discovered on his right eye, and later spread to the left.

By the time Sharif was admitted to Rachel House for palliative care, he was 5 years old and had sadly lost his sight completely. Sharif’s oncologist referred him to Rachel House to help manage his symptoms at home, and to provide support for his mother so that they could both have quality time together for the remaining days of Sharif’s life.

Sharif was a very cheerful boy, who loved to talk to everyone around him, including Rachel House’s nurses. On one of the visits Rachel House’s nurses made to his home, Sharif begged to be taken to the beach. He said he wanted to feel the water on his hands.

Rachel House’s nurses quickly secured permission from Sharif’s oncologist for him to go on the excursion. With the help of a few volunteers, arrangements were made for this important trip to Ancol (a beach area in North Jakarta). Sharif was very excited, as were the nurses and the volunteers.

Sadly, shortly before the trip, Sharif’s condition deteriorated. The pain on his right eye became very severe, and he was readmitted to the hospital for a dose of palliative chemotherapy to relieve the pain. At the hospital, Sharif continued to plead relentlessly to be allowed to go to the beach, but of course this was no longer possible.

So Rachel House’s nurses and the volunteers engineered a solution to make Sharif’s wish come true. One of the nurses, Rina, brought a few goldfish from her own pond to the hospital in a Tupperware box. Ibu Lily, a volunteer at Rachel House, had fish-shaped pictures sewn on to a long sea-blue fabric (representing the ocean with fish) and hung them by his bed in the hospital.

Sharif was ecstatic! Every morning, as soon as he woke up, he would dip his little hand into the fish bowl to feel the fish in his hand and imagine himself on the beach. The fish and the “big blue sea” by his bed brought so much joy and smiles to Sharif, and to the nurses and the volunteers.

A few short days after, Sharif developed a very high fever that kept him firmly in bed with little energy to say hello to his fish.

One day, with his little voice Sharif whispered to his mom, “Ma, I am tired. I want to let go.”

His mother, who never left his bedside, replied, “Arif, please don’t worry about mama. Let go if you are tired. Mama will be alright.”

Sharif passed away peacefully in his mother’s arm the next day.

A Celebration of Life – A Story of Rama and Maulana

Rama’s situation was first revealed to us by Maulana, one of the participants at the CNPC training, and a member of the youth volunteer group (Karang Taruna).

Rama is a 12-year-old boy who was completely immobilized from neck down. The exact cause of his condition was never found and a diagnosis was never made. According to his parents, Rama had tripped and fell when he was 2 years old while learning to walk. Since that fateful fall, his development was seriously hindered. Rama’s father brought him to the hospital once, but was so disappointed with the service they received that he completely lost faith in modern medicine and never returned.

Rama’s mother is his main caregiver while his father works as a construction worker. Rama has a 10-year-old brother.

Unable to move, Rama spends his entire day in bed. When we first visited, he could hardly move his head; and when Rachel House’s nurse lifted him up for assessment, the contracture of his muscles made all movement difficult and a challenge for him. Rama’s speech is impaired, but thankfully his sight and hearing seem to be functioning well.

Rama was often troubled by constipation, fever, and a severe cough accompanied by a lot of phlegm largely caused by his immobility. It was a vicious cycle that the family was trapped in: The mother felt humiliated when she used to take Rama out. So in the end she stopped taking him out, leaving and locking Rama alone in the house often when she had to go out. This meant less and less opportunity for Rama to move, to exercise his limbs, complicating the contracture and compromising any chance of improvement.

In spite of all these, Rama has the most infectious smile that brightens up like the sunshine on a rainy day. Since our first visit, more and more smiles are being flashed, and we can see significant improvements, not only in the movement of his head, but the muscle contracture on his limbs has also eased to allow for more movement.

Equipped with the knowledge from the CNPC training, Maulana has become more sensitised to the condition of many children living with life-limiting and life-threatening illnesses in his community. Maulana now visits Rama almost everyday, even if it is just stopping by to say hello on his way home from work.

 

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Maulana (left) leading the morning assembly before Karang Taruna members begin the day’s work

 

Thanks to Maulana’s discovery, the local puskesmas (primary health clinic) has now been informed of Rama’s condition and the medical professionals from the puskesmas are now making a monthly visit to help monitor Rama’s condition. A weekly physiotherapy has also been organized to help ease the contracture of his limbs.

In August, accompanied by Maulana and with the help of many friends, Rama and his family spent their evening at the pasar malam nearby. It was Rama’s very first trip out of his house! He was beaming with smiles throughout the evening as he went round and round the pasar malam (amusement park) in the wheelchair, escorted by Maulana and his father. Rama even got to ride on the Ferris wheel – the three men looked very happy; and so were the friends who made the evening possible. A joyous celebration of life.

 

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Maulana (right) taking Rama and his father to ride the Ferris wheel

 

Palliative Care for All – A Milestone in Indonesia

April 2014 – Giving birth to the idea

In June 2014, we posted a story on GlobalGiving about the “Groundbreaking Roundtable Discussion” initiated by Rachel House to explore alternative pathways to introduce palliative care in the nursing curriculum in Indonesia. This is part of Rachel House’s hope of training a new generation of nurses equipped with palliative care and homecare skills, to ensure the availability and accessibility of palliative care in Indonesia. We are pleased to announce that on 1st October 2015, Rachel House launched its very first Clinic-in-a-Box training at University Padjadjaran (UNPAD) in Bandung. This is an important milestone in the development of palliative care in Indonesia. The 6-week course will equip nurses in home-based palliative care skills and financial literacy, to help empower the nurses to deliver palliative care to patients living with life-limiting conditions, including those at home. The pioneering batch of 22 participants comprises mainly lecturers from nursing faculties across West Java. With their hearts opened and passion awakened for palliative care, these lecturers will go on to touch the lives of many young nurses in Indonesia to encourage each to be the advocate for their patients.

 

Clinic-in-a-Box launched on 1 October 2015

 

Building skills & passion at Clinic-in-a-Box

 

Encouraging teamwork towards patient-centric care