One and a half years ago, a boy started to lose his ability to move.
One and a half years ago, the boy was diagnosed with HIV.
One and a half years ago, Rachel House was introduced to the boy.
His name is Ardi. He is seven years old. The HIV virus had compromised his immune system and caused neurologic complications. By the time Ardi was admitted to Rachel House, he had lost his ability to see, to hear, to speak, to eat and to walk. His limbs were contorted in awkward angles while he spent his days lying immobile in bed.
The “bed”, which is really a mattress, shared with his parents, his brother and his two sisters every night in a three-by-four rented room. Whenever our nurses visited, they would often find Ardi surrounded by his sisters, who continued to look after him in the most caring manner; they played and joked with him, and caringly wiped the saliva that had dribbled down his chin due to the facial paralysis.
Ardi’s father continued to harbor high hopes for him. He believed, with all of his heart, that Ardi will one day regain mobility and will return to school. Ardi had been his pride and joy; one of the top students in his class, trophies and awards lined the walls of the small room.
Ardi was referred to Rachel House to help manage the symptoms that had compromised his quality of life. Rachel House’s nurses supported Ardi’s parents with the essential skills and knowledge to ensure proper administering of medications, effective ways of managing Ardi’s feeding (nasogastric) tube, methods of easing his breathing (complicated by lung Tuberculosis), and physiotherapy exercises to help Ardi regain his strength and movement. All the big and small things that would help make Ardi’s days just a little bit easier.
But of course, the nurses’ work extends beyond just the patient. With other children to raise, Ardi’s parents needed emotional support, care and compassion; with the additional expense of Ardi’s treatment, his father had to work twice as hard to support the family. Our nurses became their friends, their trusted confidants, with whom they shared their grief and broken dreams.
A doctor once told Ardi’s parents that his paralysis was irreversible.
“But I have faith,” the father said. And that faith gave them courage. Physiotherapy was an arduous journey; with progress so slow it at times tested the father’s conviction. But little by little, Ardi’s conditions improved.
Today, Ardi is able to sit up on his own, and even stand up with support. He has regained most of his hearing and some of his sight; he is now able to watch television with his sisters, laugh at cartoon or some random celebrity gossip show. Ardi is a living proof that a father's love and faith, combined with compassionate care and appropriate treatment, can move mountain. Being HIV-positive does not mean that all is lost for these children; and it definitely does not mean that they do not deserve to live life to the fullest surrounded by the people who love them.
In a 1-room house measuring 3 x 8 meters shared by 5 adults and 3 children, lay a little boy on a thin blanket on the floor. The room had no windows other than an open door that let in the hot dusty air, and sometimes a wandering rooster from the streets. For Sani, the skinny little boy lying on the floor right at the doorway, this is his whole universe – where he lies all day, every day.
At the age of just one, Sani lost his mother to HIV. When he was two, he was diagnosed with HIV with an obstructed bowel complication that resulted in a need for a colostomy.
When he was first admitted under Rachel House’s care, his father was still around and his grandfather was still alive. Both are no longer around, leaving him with his grandmother as his sole caregiver. She was the one who would nurse him through his endless fits of cough, his fever and breathlessness; the one who would change his colostomy bag ten times a day, and administer his medications – or at least tries to, as she constantly struggles to remember which medication to give and at what time.
Alone, caring for Sani and his 2 older siblings, his grandmother grows despondent. She tires easily, emotionally and physically. Sani begins to miss his doctor’s appointments at the hospital. A trip that would involve taking 4 changes of buses and a motorbike-taxi ride; a trip that not only takes 3 to 4 hours, but also one that would require funds that the Grandma no longer has. No appointments means no medications. No medications mean a compromised immune system that threatens Sani’s survival.
Rachel House’s nurse, Neng, who visits every week has watched the deterioration of the family condition with alarm. Sani has grown quiet since his father left. He has stopped eating, rejecting and throwing up food even with a feeding tube. Being close to his grandmother, Sani must also be sensing her worries.
Whenever he sees Neng enter the room, he will reach out with his feeble hand, motioning her and grunting for her to hold him. The grunt only stops when he feels her hand stroking his arm gently, while she speaks to him and his grandmother. Sani craves for a hug and a human touch – all of which is no longer available as his grandmother grows tired and preoccupied with financial worries. Neng sees the dark circles under the grandmother’s eyes and senses the burden she is carrying. So she listens to her stories and tells her what a remarkable job she’s doing.
“Come on, let’s care for Sani together,” Neng rallies behind her. “Let’s go to the hospital next week. I’ll meet you there so you won’t have to be alone,” Neng promised.
Determined to deliver the love and human touch that Sani craves for, however many remaining days he has left, Neng rallies the support of volunteers to take turns to visit – bringing him the love that he longs for.
For Sani, this may be all he will ever have; and so we make this moment count.
Palliative Care went from nobody's business to everybody's business
In 2014, the wife of the Governor of Jakarta, Mrs Veronica Basuki, announced her wish for palliative care to be available at every District Hospital in Jakarta. Overnight, Rachel House was propelled on the path towards transformative scale; and the seeds that we had patiently planted over the years blossomed to bring forth a health system that is now ready for palliative care.
“Business as usual” - with expanded coverage
In late 2013, we expanded our coverage to involve community volunteers - empowering them with the necessary skills and knowledge to help provide home-based palliative care for children from the marginalised communities living with cancer or HIV. The trained volunteers under our Community Network in Palliative Care(“CNPC”) Program are now collaborating with medical professionals at primary health centers in Jakarta (who are also included in the palliative care training) to bring the much-needed care to patients at home.
2014 also saw the beginning of our work in designing the curriculum for accredited palliative care short courses for nurses under the Clinic-in-a-Box Program. Our Clinic-in-a-Box Programwill be piloted in 2015, in collaboration with the National Nursing Association (PPNI) and the nursing faculties of several major universities, to equip nurses with home-based palliative care skills and financial skills to allow nurse to practice independently. It is our hope that the “Clinic-in-a-Box” trained nurses combined with the CNPC trained volunteers will help alleviate the suffering faced by many today due to the critical shortage of medical professionals in Indonesia.
Our Gratefulness & Thanks
The awesomeness of the journey in the last 12 months is something that none of us could have predicted. The part we played was simply to stand ready for the occasion. I am grateful to the entire Rachel House team who stood up to the challenge, and most of all, to all our faithful and wonderful supporters – volunteers, partners and donors - who continue to champion the cause and rally around us. Thank you.
Death – The Last Frontier
I have asked myself the question “How do I want to die?” countless times in my life. Depending on how I feel at the time and at what stage of my life I am at, the answer often varies – from passing away peacefully at old age to dying heroically in a fire trying to save a kid. Of course, all this assumes I even have a choice in the matter. All too often, we don’t have a choice. Death comes quickly and takes us, and our loved ones away. But what’s worse is that sometimes death comes slowly and you’re dragged through the dying process painfully and slowly.
In the two months I’ve spent with Rachel House, I’ve come the closest face-to-face with death than ever before. It’s easy to write off death when you’re only 20, because you think- surely it’s not going to come soon! I still have so much more time! But the patients at Rachel House don’t even have the opportunity to reach 20 years of age before they are robbed of their lives forever. It’s infuriating and saddening.
The first patient I met was a tiny little baby boy named Andi. He was HIV positive. He was so tiny- “like a melon”, was how Prita (Rachel House’s Program Officer) described him. He was only 4 months old, and had the tiniest fingers and toes, and it just makes you marvel at how small a human being can be. Andi’s mother was only 18. She was two years younger than me, married and had a boy to call her child. She was also wholly unprepared to be a mother.
One of Rachel House’s nurses, Neng, interacted with Andi’s mother and grandmother in Bahasa Indonesia. We caught parts of the conversation, didn’t catch most of it, and largely settled for gazing at Andi and observing the body language of the people around us. Andi’s mother was also HIV positive. She had been taking medication for a while, but stopped recently because she felt fine. She had also ‘forgotten’ to bring Andi to the hospital for his checkup. Andi’s mother was a beauty; she had long black hair and big eyes. She fiddled with Andi’s cot and laughed a lot, not quite meeting Neng’s eyes most of the time. Andi’s grandmother carried little Andi in her arms and looked onto the conversation with a defeated air.
Many thoughts filled my head as we walked away from Andi’s house that day. Above all, I wondered- Is there someone who can be blamed for the situation? Andi did nothing to deserve all this pain and suffering aside from being born into this world; his mother may have made some bad decisions but ultimately, in her situation it must have seemed like she didn’t have any other options aside from getting pregnant and being married off. And I went away thinking, man, life can be really unfair sometimes to some people.
It is stories like these that make me realize just how much of a blessing Rachel House is to these families. Crucially, I think the nurses and staff at Rachel House see the suffering and go out of their way to alleviate it. They never stop at “Wow life is so unfair!” They go beyond and give their all in order to help one more child live the rest of his or her remaining days without pain. Andi passed away a few weeks later, suddenly and unexpectedly. We mourn his passing, but ultimately if his last days were lived painlessly and without any suffering, then that might really have been the best outcome for everyone involved.
How can we help the terminally-ill children from Jakarta’s poorest families find peace?
Since our last report, we are thrilled to announce a significant breakthrough in the ongoing effort to educate medical professionals in Indonesia about the importance of palliative care. With the support of the Singapore International Foundation and the wife of the Governor of Jakarta, Mrs Veronica Tjahaja Purnama, in her role as the Chairperson of the Jakarta Cancer Foundation (YKI DKI), we will soon be offering a three-year course in palliative care for practicing medical professionals in six District Hospitals (RSUD) in Jakarta and several National Referral Hospitals. We couldn’t have achieved this landmark goal without your continued support, so a huge thank you to the Global Giving community. This step is only one along our journey towards bringing pain and symptom relief to every child in need, and we invite you to walk along with us as we continue.
Since 2006 when Rachel House was established, we’ve been working tirelessly to help terminally ill children in Jakarta’s poorest areas. If you were to come along with one of our nurses on their home visits, you would be welcomed into the homes of families living in the most disadvantaged parts of the city: near rubbish dumps and filthy ports. Some of our patients have no place to call home: under a tree during the day, and in the mosque at night. Most of the care we provide is for children during the most critical stage of their battle against cancer or HIV; we know they will most likely not have much time left, but we want to give them the dignity and comfort to enjoy their remaining days. This is a difficult task, but often it is made harder by the lack of awareness amongst the medical community and the public about palliative care.
Our dream of being able to provide the best care to every child living with life-limiting conditions from the marginalized communities is finally being realized. Between 2009 and 2012, we worked with the Singapore International Foundation to train the first group of medical professionals in palliative care. This new breakthrough that will allow us to bring palliative care to all medical professionals in the hospitals in Jakarta is the result of years of campaigning and hard work: from formalized roundtable discussions, to the day-to-day uphill struggle our nurses experience in their efforts to change the perceptions of doctors within a strict hospital hierarchy and win them over to the path of alleviation of pain. Through the new palliative care course, which will involve an intensive week-long training (comprising classroom and beside teaching) bi-annually over a 3-year period, with a week-long practicum once a year in between, we hope to bridge this knowledge gap.
This exciting new step helps Rachel House achieve one of its fundamental initial goals: that of increasing the knowledge of palliative care across the Indonesian healthcare system. In order to help patients traverse the journey seamlessly from the hospital to home, more work needs to be done at the public health clinic (Puskesmas) level, as well as the community volunteer level. Rachel House has already made significant progress in both areas through its Community Network in Palliative Care (CNPC) Program and Clinic-in-a-Box Program (see our previous reports for more details).
Your support has been invaluable in helping us get this far, and we hope you will continue to now journey with us to the next exciting stage – that of making palliative care available to every child in Indonesia allowing them to live their remaining days amongst their loved ones, with dignity and in peace. We hope you will help us achieve our vision for a better world.
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