“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.

 

M181215-1

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.

 

M181215-2

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

Urgently Required: Finance Officer for Rachel House

Yayasan Rumah Rachel (“Rachel House”) is the first pediatric palliative care service in Indonesia, providing home-based care for children with living with HIV/AIDS or cancer. Our vision is to never see a child in pain. Our mission is to help ensure palliative care is available to children, allowing them to live with joy and dignity in the caring and loving environment of their homes.

Rachel House is currently seeking for the following position:
Position:   Finance Officer
Location:  Slipi, West Jakarta

General Responsibilities
The Finance Officer for Rachel House would be responsible for preparing Rachel House’s financial accounts and consolidating all operational activities undertaken by the organization. The Finance Officer will report directly to the General Manager.

Specific Tasks and Responsibilities
The Finance Officer’s duties and responsibilities will include but not limited to:

  1. Preparation of the monthly financial reports including balance sheet, activity report, Profit & Loss Statements, and other reports using the MYOB accounting system.
  2. Consolidate Program Expenses.
  3. Preparation of the year-end financial reports.
  4. Work with the appointed audit firm to carry out the annual audit process.
  5. Manage payroll, billings, receivables, payables, cash receipts, cash reimbursements, and general ledger functions.
  6. Prepare and file the monthly and yearly tax forms, including PPh 21 and PPh 23.
  7. Work closely with the operation team to prepare the Annual Budget for the organisation.
  8. Supervise all satellite offices’ cash reports.
  9. Record and report donations from various sources.
  10. And, other duties as assigned by the General Manager.

Qualifications:

  1. Bachelor degree in Accounting with a minimum 2-3 years of experience working in similar position.
  2. Experienced in using the MYOB accounting system.
  3. Strong interpersonal, analytical thinking, and communication skills.
  4. Able to work independently, and willing to be a good team player at the same time.
  5. Good command in English (oral and written) is desirable

 

Interested candidates should submit their applications addressing the above qualifications and experience, along with your curriculum vitae by email to info@rachel-house.org. Please indicate the position you are applying for in the email subject.

Home Care Nurse WANTED for Rachel House

Yayasan Rumah Rachel (YRR) adalah lembaga nirlaba yang menyelenggarakan asuhan paliatif rawat rumah tidak berbayar bagi anak-anak dengan Kanker dan HIV, terutama dari latar keluarga kurang mampu. Visi kami adalah tidak ada lagi anak dalam nyeri atau kesakitan. Misi kami adalah memastikan asuhan paliatif tersedia bagi anak Indonesia sehingga mereka dapat menjalani hidup bahagia dan bermartabat dalam lingkungan penuh kasih sayang.

Sebagai lembaga perintis asuhan paliatif anak di Indonesia, Yayasan Rumah Rachel berkomitmen untuk terus membina kapasitas tim melalui proses belajar berkelanjutan melibatkan para penggiat dan guru paliatif dari Indonesia, Singapura, Australia, Selandia Baru, Afrika Selatan dan India.

Lokasi:
Kantor Slipi (Jakarta Barat) dan/atau Kantor Cilincing (Jakarta Utara).

Tanggung jawab:

  • Menyelenggarakan asuhan keperawatan bermutu.
  • Menyelenggarakan pendidikan kesehatan dan komunikasi terapetik bagi klien dan keluarga.
  • Menyelenggarakan dukungan dasar psikologi sosial dan spiritual bagi klien dan keluarga selama terapi, jelang dan pasca kematian.
  • Berkoordinasi dengan lembaga mitra dan unit pelayanan kesehatan dalam menyelenggarakan asuhan bagi klien dan keluarga.

Persyaratan:

  • Berlatar pendidikan minimal D3 Keperawatan.
  • Berpengalaman kerja keperawatan klinis minimal tiga tahun. Pengalaman dalam layanan rawat rumah dan/atau anak menjadi nilai tambah.
  • Memiliki Surat Tanda Registrasi dan Surat Izin Praktik yang berlaku.
  • Memiliki kepekaan sosial.
  • Terampil berkomunikasi dengan beragam pihak.
  • Mampu mengoperasikan internet dan perangkat lunak dasar perkantoran.
  • Kemampuan berbahasa Inggris menjadi nilai tambah.
  • Mampu mengendarai motor dan/atau mobil serta memiliki SIM menjadi nilai tambah.

Silakan mengirimkan curriculum vitae ke elsa@rachel-house.org, atau ke Yayasan Rumah Rachel, Graha Indramas Lt. 1, Jl. K. S. Tubun Raya Kav. 77, Slipi, Jakarta 11410.

Nurse – A Force for Change

On 21st of April every year, Indonesia celebrates Kartini Day, commemorating the birth in 1879 of Raden Ajeng Kartini – a pioneer in women’s rights and a champion for the emancipation of women, opening the first school for women in Indonesia.

This year, ConocoPhillips hosted a lunch to celebrate the courageous spirit of Kartini, and invited several outstanding women to share their accomplishments both at work and at home, in the hope of inspiring other women to aim high to break the glass ceilings.

Rachel House’s nurse, Rina, was invited as one of the speakers. A mother of three, Rina first dipped her toes into the world of palliative care in 2008, when a colleague introduced her to Rachel House. Her initial response at the time was, “What in the world is palliative care?” In the ensuing years, Rina’s insatiable thirst to learn – driven by her commitment and her heart’s calling to champion the children she served – quickly propelled her to become the clinical head of the pioneering children’s home-based palliative care team in Indonesia.

 

20150421_123600 [for blog]

 

The story of Rina’s exciting journey as a nurse-cum-mother-cum-wife captured the hearts of the audience, most of whom were women. “At first I intended to stay for only a few months,” Rina said, “but I fell in love with the children and here I am, still here after all these years.” Her role as the Nurse Coordinator requires tremendous dedication not only in ensuring that her patients and their families receive the best care possible, she is also in charge of supervising and training the younger nurses, inspiring them to go the extra distance to serve their patients; challenging each of them to open their hearts and be the voice for their patients who are amongst the most forgotten and neglected in the community.

A significant part of Rina’s work is in disseminating palliative care knowledge to medical professionals across the health system in Indonesia, working hard to ensure the availability and accessibility of palliative care for all children in Indonesia.

When asked how she balanced the demands of her family and her work, Rina highlighted the importance of support from others. “Both at home and at work, collaboration is key. At home, I work with my husband to care for our children and build our home. In the field, I work with the community, hospitals, primary care centers, and other not-for-profit to provide the optimal care for our patients and their families.”

Her roles are wide-ranging and her duties are demanding, Rina admitted. “But I would not change it for the world.”

 

The Voice of Youth in Advocating for Pediatric Palliative Care

Students of Sekolah Pelita Harapan (Pelita Harapan School or “SPH”) in Karawaci, Jakarta recently participated in 30 Hour Famine, an event where the students fasted for 30 hours to get a glimpse of what it was like to be without a basic necessity. The 30 Hour Famine is a World Vision program that seeks to unite youths around the world to raise awareness about the plight of children who live in circumstances less fortunate than themselves in the hope of eradicating poverty.

For the students at SPH, this year’s focus was children living with HIV/AIDS and Rachel House was invited to speak about the need for palliative care for children in Indonesia in general, and for children living with HIV/AIDS in particular.

 

 

Rachel House shared the current initiatives that are being implemented to deliver care to children living with HIV/AIDS and other life-limiting conditions, and presented the challenges that lay ahead in a country where palliative care is not yet an integral part of Indonesia’s healthcare plan. The students demonstrated a keen interest, asking a host of questions about Rachel House’s advocacy plans at the local and national level to ensure the right of children to live with dignity and without pain can be achieved.

At the end of the presentation, Rachel House facilitated a group activity to encourage the students to think about ways to raise awareness for palliative care in their community and how they can lend their hands to help alleviate the suffering of children living with life-limiting conditions. Divided into groups of three, the students were asked several questions based on a scenario about a young boy living with HIV.

“If you were his neighbor, what could you do as an individual, to provide support to this boy and his family?”

“As a community, how could you provide support to this boy and his family?”

“As a policy maker, what could you do to ensure palliative care is provided for this boy and his family?”

 

SPH 30H Famine - 2
The responses received from the students were astounding. They came up with inspiring ways in which individuals, communities and leaders can collaborate to ensure palliative care needs for children and their families are met. Listening to their ideas confirmed our belief in the power of the voice of youth to advocate for palliative care in Indonesia.

Rachel House is inspired by the young people with a vision to create a better place for children who are marginalized; we admire their passion, enthusiasm and their willingness to contribute towards a better world. We are grateful to the students of SPH for their fundraising efforts and support for the children and families of Rachel House.