Yayasan Rumah Rachel Dianugerahi Ikon Prestasi Indonesia

IMG-20170822-WA0016

 

Dalam rangka Hari Kemerdekaan Indonesia ke-72, Presiden Republik Indonesia Bapak H. Joko Widodo menganugerahi 72 Ikon Berprestasi Indonesia di acara Festival Prestasi Indonesia yang diselenggarakan oleh Unit Kerja Presiden Pembinaan Ideologi Pancasila (UKP-PIP) di Jakarta. Asuhan paliatif Yayasan Rumah Rachel merupakan salah satu penerima penghargaan terhormat ini, atas usahanya agar seluruh rakyat Indonesia, terutama anak-anak, merasakan manfaat asuhan paliatif.

Pancasila menjamin hak semua warga negara Indonesia untuk mendapat layanan kesehatan dalam sila ke-5, “keadilan sosial bagi seluruh rakyat Indonesia”. Pendiri Yayasan Rumah Rachel, Lynna Chandra, menghimbau pemerintah Indonesia untuk  berperan aktif dalam menerbitkan dan menerapkan kebijakan untuk menjadikan asuhan paliatif sebagai bagian inti dari sistem kesehatan. Baca lebih lanjut di sini.

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On 21st August 2017, Rachel House received the Presidential Achievement Award in recognition of its contribution in making available palliative care to children of Indonesia. The prestigious presidential award, held as part of the celebration of Indonesia’s 72nd Independence Day, celebrates the achievements of 72 “Achievement Icons” from across Indonesia.

Pancasila, the guiding philosophy of Indonesia, guarantees the right to healthcare under its fifth principle, “social justices for all Indonesians”. Rachel House’s founder, Lynna Chandra, urged the Indonesian government to play an active role in ensuring the successful implementation of palliative care by issuing the guidelines and policies for palliative care to be included as a critical component of the national health system.  Read more here.

 

Home Care at a Humble Home

Nurses' visits ensure no symptoms go untreated

Nurses’ visits ensure no symptoms go untreated

Every patient has a different story. And every home I visit tells a different story. For Adam, our 7-year-old patient living with HIV, his home is made up of cardboard boxes assembled together to make up the family’s living quarters. Located at a dumpsite, Adam shares the space with his ailing mother, his father, and a 15-year-old sister. His father is the family’s sole breadwinner, collecting used plastic bottles to be sold to recyclers for what little money he could earn. His mother’s health condition has been deteriorating recently, burdened by the HIV disease. This leaves his teenage sister as the primary caregiver for Adam.

Adam’s sister, who has had to leave school, is responsible for ensuring Adam and her mother adhere to their daily HIV medication regime. Whenever medication runs low, or when infections and complications mean they need to be taken to the hospital, Adam’s father would struggle to find the money to get them to the hospital. The harsh reality for the family is that transportation costs for Adam to get to the hospital would often mean that the family would have to go without meals for a few days.

Learning about these devastating challenges, I am relieved to be able to turn to the “Food and Transport Fund” Rachel House has been able to raise. The Fund is used to support our patient’s transportation and food expenses during their visits to the hospital. Adam’s father is so grateful for this financial support that offers him the peace of mind that his son is now able to access hospital care when needed. “It is a relief to know that my children can now safely get to the hospital for Adam to get the care he needs, and for me to know that they will not have to go hungry while at the hospital. I am thankful for the help given to support my family.”

As a nurse, I am very thankful to all our donors of this Food and Transport Fund that helps ensure that our patients are now able to get to the hospital safely for treatment. Equally importantly for me is also to know that our patients’ families do not need to go hungry while taking care of their sick children in the hospital.

 

Nurse Neng enlists caring neighbours' support

Nurse Neng enlists caring neighbours’ support

Thorough assessments mean good symptom management

Thorough assessments mean good symptom management

A Celebration of Life and Love

Make a wish, Jani!

Make a wish, Jani!

When one hears or read about palliative care, the first thing that comes to mind is often about pain relief, or respite from suffering. Yet on my first visit to Jani’s house, I could sense only festivities and joy in the room, and not one ounce pain could be felt anywhere.

Jani and her mother were all dressed up and ready for a celebration when we arrived at her house that morning. It was Jani’s birthday, and I had accompanied Nurse Rifa, one of Rachel House’s palliative care nurses, on this joyous day. As can be expected of any child on her birthday, Jani was totally over the moon. As we presented her with the birthday cake, Jani laid eyes on the set of bling we had brought along! She quickly put on the  tiara and the matching jewelry set that perfectly completes her princess outfit. The decor of her home matched the occasion beautifully, the pink wallpapers of different designs and cartoon characters, including one saying “Happy Birthday”.

Sharing songs and fun-filled moments like these with Jani is something Nurse Rifa tries to do on her weekly visits to the house. However, since first meeting Jani 9 months ago, Nurse Rifa’s main task has been to manage the many symptoms that takes away the joy from this little girl. Living with HIV and pulmonary TB infection means that Jani is constantly plagued with symptoms that range from chronic cough, recurrent diarrhea, and fever that weaken her body and stop her from attending school, to sometimes scary ones where every breath becomes a challenge. On this special visit, witnessing the special bond between the family and Nurse Rifa, it was so clear for me that for Jani and her mother, Nurse Rifa has become part of the family and more; for them, the Rachel House nurse is the reason why Jani can once again play and laugh as other children do.

As Nurse Rifa began assessing Jani’s condition, I sat down for chat with Jani’s mother. As a full-time caregiver, she has the difficult task of not only tending to her daughter’s tears and tantrums when things are scary, but she has her own health to worry about (living with HIV herself). She found the support given by Nurse Rifa and the Rachel House team to be invaluable to her family’s well-being, stating that, “We are so lucky to have Nurse Rifa who faithfully visits every week. I have someone to talk to, and my daughter has someone to play and study with. We are no longer alone and afraid.”

Seeing the burden that is carried by Jani and her mother, I can see how having a home care team that provides both medical and emotional support are such a gift and a blessing for the family. Jani’s road to recovery might not be easy, but with the combined love and care of Rachel House’s nurses and her mother, I know that she has a better chance to live a full and joyous life and hopefully celebrate many more birthdays to come.

For the Smile of a Child

Joyful day at the Waterpark

Joyful day at the Waterpark

Dani is 10 years old. It has been 2 years since he was first diagnosed with a rare kidney cancer.

When I first met Dani, he was quiet and non-communicative. He spent most of his days in bed and would not speak to me whenever I visited him at home. He was also in a lot of pain; he had been experiencing unbearable pain on his stomach, due to the tumor that continued to grow despite chemotherapy. I noticed from the medical records provided to us when Dani was first referred to Rachel House that he had received pain medications, so I was particularly curious as to why the pain had persisted. Upon assessment on our initial visit, we discovered that he had unfortunately not been given the right dosage of pain medications at home. We encounter this often when caregivers are not adequately prepared to administer medications prescribed. So, for the next couple of weeks, I specifically dedicated my time to support and educate Dani’s mother, on the proper administering of the medications. Thankfully, Dani’s pain eased quickly and his spirit lifted.

However, all was not well yet. Soon after his pain eased, his pain medications ran low. This meant that he had to go back to the hospital to see the oncologist for a review of his condition, as well as to get the new prescriptions. Unfortunately, it had been a while since his father, who worked as a manual labourer, was able to find work. Paying for the trip to the hospital was unthinkable for his family who, by that point, had to borrow money from their neighbours just to put food on the table.

In our mind, we knew that without the medication, Dani would once again spend his days in agonising pain.

Our team rallied the support of the amazing and faithful supporters who have been helping us bring palliative care to children like Dani. Their generosity allowed Dani to get to his medical appointment, thereby ensuring that Dani can remain pain-free and comfortable at home. His mother was overjoyed to see her son slowly returning to his old cheerful self.

One day when Dani was feeling better, he confided in me a wish he had kept hidden for a long time. “I want to go to a waterpark and go down the slide with my mom,” he whispered. There was a small smile on his lips and a hopeful glint in his eyes. He had never been to a waterpark before.

To the waterpark we went last Saturday, and I saw the biggest smile on Dani’s face. For a moment, I was lost in a thought of how different the situation would have been had he not been referred to Rachel House for home care, or had he not been able to go to the hospital for his pain medications. But the laughter of his mother and him from the pool drew me back to the present moment, and I was grateful to all our friends and supporters who had made this day possible for not only Dani, but so many other children like him who could smile once again.

Biggest smile ever!

Biggest smile ever!

Adding Smiles to the Children’s Remaining Days

A Rachel House nurse at her patient's home

A Rachel House nurse at her patient’s home

Yogi was 16 years old when he had a motorbike accident and broke his arm. About a month after the accident, his arm became swollen and he was in a terrible pain. The X-rays showed that Yogi had a malignant bone cancer, or Osteosarcoma.

The doctors initially proposed to amputate Yogi’s arm to prevent the cancer from spreading, but Yogi refused. As time went by, Yogi’s arm became more and more swollen and the pain became excruciating. The doctors eventually introduced Yogi to Rachel House so that he and his family can receive the support they needed. Rachel House nurses coordinated with Yogi’s primary oncologist to make sure he had adequate pain medication at home and was comfortable at all time. As the relationship developed and Yogi began to trust the nurses, they were able to slowly help Yogi understand his conditions, the treatment options available, and the consequences with each treatment option; this open and truthful discussion provided Yogi with the information he needed to make an informed decision about his life.

Yogi eventually opted for the amputation and decided to fight for cure.

Happily, tests confirmed that there were no longer any cancer cells in his body. Sadly though, this did not improve the reality of a lost arm for Yogi.

He had lost his confidence. He was too embarrassed to return to school and friends had stopped visiting him at home. For Yogi, he had not only lost his arm and a full school year, but also all his friends.  Life seemed to have left him behind.

He felt desperate and afraid. Afraid of the chemotherapy that he would have to undergo. He was not afraid of the therapy itself, but of losing again. This time, he was afraid of losing his hair as a consequence of the chemotherapy. Yogi was losing sight of even hope itself.

Then one day, hoping to ignite Yogi’s spirit and hope, Rachel House’s nurse showed him a video of people achieving amazing and seemingly impossible things even without their arms. The video had a major impact on him; Yogi understood that he had not lost everything. He realised he still had a future.

Yogi decided to pick up his hobby again, and started playing futsal with his friends.

Smiles returned on his face when the nurse visited him. He asked if Rachel House could organise for home tutoring for him, especially in English. A volunteer responded most generously and Yogi resumed his studies from home.

Yogi eventually went back to school and resumed his life in the world. He is learning to write with his left hand and is thinking about continuing his studies at the vocational institute. He is determined to be successful in the future. “I want to be a businessman, running my own business,” he laughs.

Until today, Rachel House has provided palliative care to over 2500 children and families like Yogi who are living with HIV and cancer in Jakarta. We would like to convey our deepest gratitude for your generous support, which has allowed us to continue improving children’s quality of life and adding smiles to their remaining days.

 

His beloved bird, adding smile & hope to his days

His beloved bird, adding smile & hope to his days

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.

Palliative Care, Touching the Lives of Many

IMG_1777 - Neng telling Jes what a good girl she's been!

Jessi

Jessi is 5, and living with HIV. Her father left a long time ago. Her mother is living with her new family now on the other side of town, and Jessi sees her only once a year, on Eid-al-Fitr, a Muslim celebration at the end of the Ramadhan. But Jessi has a loving grandmother, who is her entire universe.

On our first few encounters, Jessi seemed to be a quiet girl. But as we got to know each other better, I began to spot the light of hope in her eyes. Jessi may not be in the best of health, yet her cheerfulness would shine through when she clapped her hands to her favourite song that I would sing at her insistent request.

HIV often causes developmental challenges, and this was clearly exhibited in Jessi. When I started taking care of her almost two years ago now, Jessi could barely speak. However, she would listen intently to the discussions around her, and would flail her hands excitedly trying to chime in.

& Her Grandmother

Being a palliative care nurse, my duty is not only to care for Jessi, but also for her grandmother. A woman in her 50s, grandma Surti has been Jessi’s tireless caregiver through all the many ups and downs of Jessi’s health condition. With the stigma surrounding HIV, many families of HIV patients are afraid to disclose their status. Grandma Surti is of no exception. She became isolated from her neighbours; alone and bereft of any support, she had no one with whom she could share her burdens.

We quickly became friends. Often during my home visits to Jessi, grandma Surti would share her fears and worries about Jessi’s condition. Is Jessi going to die? What does it mean when the doctor says this or that? Why are there so many medications and what are they for? Why can’t she talk and walk yet like other children her age? I would sit with her and make sure she had all her questions answered, her worries quelled.

With each visit, I can see Jessi’s health and cognitive condition steadily improve. Through our support and education, grandma Surti is able to understand better about Jessi’s illness, and how to administer her medications in a proper and timely manner. The wounds and pains that had previously ailed Jessi have begun to heal. She is now able to utter simple words and continue to add new words to her repertoire weekly. And, one of the most celebrated milestones of the past 2 years would be to see her learn to walk!

& The Palliative Care Nurse

I am delighted to see the happiness that is now painted on Jessi’s and grandma Surti’s faces. But more than that, I am truly honoured and humbled to have been given the opportunity to learn so much from them. Jessi has taught me to keep my spirit up even when things seem endlessly bleak. Grandma Surti, who has never once complained or become angry with Jessi, has taught me patience and compassion. She reminds me constantly to be a better parent for my son – to spend and cherish the time I have with him as much as I can, as much as grandma Surti does with Jessi.

& The Palliative Care Volunteer

My name is Tiarvafilin. I am a volunteer at Rachel House. I have been making birthday cakes for the children at Rachel House for over a year now. I am moved by how the nurses at Rachel House help the children live their lives to the fullest even when they are facing unbearable challenges. I wanted to play my part by making sure that these children too can have the happiest birthday celebrations they deserve.

One of the first cakes I made was for Jessi. At the time I had yet to meet Jessi, but the nurses’ stories about her left a deep impression in my heart. I made a promise that the cakes I would make for Jessi and the children at Rachel House must be not only delicious, but also pretty; for it may be their last birthday cake.

Truthfully, I am not a professional baker. Baking cute delicious cakes is simply a hobby I love and I consider myself a beginner. For Jessi, I was planning to make a strawberry cake. It failed. I cried. I imagined Jessi would be very sad eating a cake so terrible. But I did not give up and baked another one. With the grace of God, it turned out beautifully.

Jessi loved it. She could not speak, but her delight was apparent in her eyes. That may have been Jessi’s birthday, but it may as well be mine as it was one of the happiest days in my life.

Miracles do not fall from heaven; they are handcrafted by people. God created miracles through our hands. I do not know if I have made a miracle in Jessi’s life but I am certain I did give her a beautiful birthday. And that alone is a miracle in my life.

I am thankful to be part of the Rachel House’s team, to have the privilege to make a difference in the children’s life, adding joy and dignity to their remaining days.

Grandma Surti doting on Jessi with love & patience

Grandma Surti doting on Jessi with love & patience

 

Jessi and her beautiful birthday cupcakes

Jessi and her beautiful birthday cupcakes

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)

 

“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.