Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
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Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children

I have been holding the same image in my head for the past few months: two little girls, running towards me and nurse Ribka, like old friends meeting each other again after a long time apart. The little things stick with you – the unassuming embrace, trusting smile, and those glistening, spirited eyes. In those very few seconds, my heart was full.

These girls were born exactly like any other children: helpless, hopeful, and looking to be cared for. Their mother is exactly like mothers all over the world: caring, hard-working, and often shamed – even after doing all she possibly could. They have HIV. A medical condition, a global problem, a disease that is not any less important than others that are roaming in the world.

Their living condition is among the first things that separates us. Their house structure is not sturdy; you can hear its foundation protesting as you climb the narrow stairs on the side. The one room inside, the only habitable place to lay themselves to rest, is not safe. You can hear the wind pushing through the walls. All sorts of things were stacked around the room, most of them I could not identify – but I did catch a mouse peeking from the corner of my eye. ‘Oh, hello there.’ I muttered under my breath. As I realised it might be the least of her problems, I tried sitting absolutely still and listened carefully to the conversations.

Nurse Ribka was talking about how it has been lately for the mother – each day is a battle. Starting with the obvious; the disease and their symptoms. The medication has its own side-effects, and even without these physical challenges, it was already so hard for her to earn a living. Another added challenge, is being a single mother: ‘The girls need me; they don’t want to be left alone’ – as she said this, I can hear the girls squabbling from outside.

The mother tried to settle them down as the girls eventually joined us in the room. The conversation continued, now her eyes filled with tears as the rest of her story followed. ‘If I don’t work, my children can’t go to school. I don’t mind being stupid, but let it just be me. I just can’t have them ending up like me. I want them to have a better life.

She spoke in such humility about things she has little control over. There was so much guilt, but also power, determination, and love. I was filled with an overwhelming sense of being – one that would haunt and bless me for days and days ahead.

Nurse Ribka beautifully listened and cared for the mother in a solemn silence and presence. She then proceeded to ask if the mother needed any other help. I was shocked by the answer that follows – they have been shuffled around from one public office to another, struggling just to get themselves registered properly. Without this, they cannot be eligible to get affordable care. ‘We will do what we can to help.’ nurse Ribka said, with her calming smile.

We said goodbye after Oma Liese, the grief counselling expert, gave the comfort and appreciation the mother deserves. I could not remember the exact words, but the most impactful thing happened between the lines. They looked at each other with recognition of one another – a mother to a mother – then they hugged for as long as the time allows them to celebrate each other.

A family of three, surviving on almost nothing with the willpower of a whole village. Two little angels, playing in the corner; and their mother, a woman of strength and formidable heart, holding her family together, even with HIV and its complications claiming her from the inside.

They deserve better. Their life is a gift. I was at a loss for words after the visit, but I am not shying away from their pain any longer. It is the least I can do, when they have to face theirs each and every day for the rest of their lives. This might be their story, but this is also a story of you and me. This is where our work is needed. This is where we should stand.

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Auldina looks happy, playing with some of her friends. She is getting chubbier now and her skin looks smoother than before. She makes a hand gesture; she wants to go to the bathroom. She is a smart girl. She is indicating what she needs with sign language as she is still not able to talk properly yet. An older friend accompanies her to the toilet, while she wobbled uncertainly on her feet, having just learned to walk recently.

It’s no longer possible for her to live with her grandma. Last time I visited them there, Auldina and her mom had to sleep on a bench outside the house. Whether it was raining or not, they had to stay outside for there was no space inside grandma’s house. It is a very small house in a densely populated and marginalized area. In that house lived her grandma, grandpa, mentally-ill aunt, her mom, Auldina’s older sister and Auldina. Her father had disappeared. Her grandma is the sole breadwinner for the family by offering her service from house to house to wash their clothes.

Auldina’s mother suffered from the same immunity-compromised illness as Auldina. With both of them unwell and needing medical attention, grandma’s pitiful income was simply not sufficient to take care of both of them. With insufficient food and medication, their health quickly deteriorated. Eventually, Auldina had to leave the family and was brought to this shelter, a home for few children with similar immunity-compromised illness. But now, Auldina is separated from her family. 

Last month Auldina’s mother breathed her last breath without her youngest girl by her side. She had asked to see Auldina, for she knew she was almost the end of her journey. However, the pandemic has restricted everybody’s movement, especially for those with serious illnesses. In the end, she had to contend with hearing her baby’s voice over the phone, one last time.

I came to the shelter today. As usual, Auldina seemed energetic. However, there was something different about her. I could tell that she had learnt to be more independent. I cracked some jokes with her and we smiled at each other. I had to lean close to her ear in order for her to hear me.  I’ve got mixed feelings seeing her today after her mom’s demise. My chest felt heavy knowing that Auldina would never see her mom again. I wondered what is going on inside her mind. Has this tiny girl noticed that things are not the same anymore? Has she wondered why she’s not staying with her family? Does she remember her last call with her mom? Does she wonder why she never sees her mom's beautiful face nor hear her soothing voice anymore?

I visit Auldina once in a fortnight and call her once a week. I check on her to make sure that she takes her medicine regularly. I bring her the things she needs: her pampers, milk and medicine. Now she has to go through life alone in the shelter, away from her family. And she has to battle the illness for the rest of her life without the loving support of her parents. This has made me feel closer than ever to her. It dawned on me that my visits and support, despite the difficult challenges caused by the pandemic, are all the more crucial to this little girl now. A familiar link to the past she knew.  

A child living with an immunity-compromised illness can be severely affected in their growth and development, whether it be physically, or emotionally. Auldina has lived with this illness since she was a baby. Despite her slow development, this cute, five-year-old girl looks just as lovely as any other children. I do wish she will grow stronger and healthier as we continue to offer her our love and care.

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Under the scorching sun, nurse Dadan and I walk carefully through a busy road in South Jakarta. Today's visit is promising to be quite challenging for me. Even though I have visited many patients with our clinical team (as the human resource manager), where we are going today is rather unusual.

Ari* and his family live under a highway flyover and close to the railway track. I was startled several times, while we were there, by the booming-loud noise when the trains passed by.

"How can they sleep at night,” wondering out loud to Dadan.

As I continued to walk behind Dadan who was leading the way, I looked around in disbelief at the scene before me and wonder where could this poor boy live.

When we finally arrived, I was shocked at the place where Ari and his family called “home”. A small shelter with tarp roof; this is not only the place where a family of 4 sleeps but is also a place where they earn their living.

"Assalamualaikum Nek." Dadan greeted Ari’s grandmother, who was sitting in a dilapidated rattan chair fanning herself with newspaper.

"Welcome! Please sit down." Said grandma.

Nurse Dadan introduced me briefly to grandma, before leaving us to check on Ari.

Alone with grandma, she started telling me how glad she is that Ari is now living with her. Ari had been living in an orphanage since his mother died when he was 2. But a few months ago, the orphanage told her that they could no longer look after him as he was falling ill too frequently. With Ari’s father missing, grandma was the only family left for Ari.

"I am happy Ari can live with me, but our situation is difficult. I am constantly worried that I won't be able to look after him properly. "

Grandma lives with her husband and their youngest child who has a mental health disorder. I cannot imagine the worries that must plague grandma every day, especially now having to take care of a sickly boy with a compromised immune system.

“Often we don't have any food to eat. Fortunately, Ari is not a fussy kid. But I do worry. Look at him, such a tiny boy!” Exclaimed Grandma.

As I look over towards Dadan where he is conducting physical examination for Ari in the hot and dusty area outside the shelter, I noticed how desperately thin Ari is. At 13, he has the body of a 6-year-old. A boy of not many words, only a shy smile noticeable on his face.

"It’s also hard for them to have access to clean water, Mbak Pay." Dadan told me.

Grandma explained that they only shower occasionally as they have no access to running water. They put a bucket out to collect rainwater when it rains, for cleaning purposes or simply to wash themselves after defecating. 

It is unimaginable for me, to think about the hardships that grandma and her family have to face every day. It is not only challenging for them to put food on the table, even clean water is difficult for them to access.

As I walked home, my thoughts drifted away to what would happen to Ari and family if Jakarta were to experience a heavy rainfall. Where would they go for shelter when their “house” is made only from tarp? What will happen to Ari and grandma if the area is flooded? What will be the fate of this family, who will protect them?

For the majority of our patients from the marginalized community, Rachel House's support is their only lifeline to help and assistance. The only life buoy they know. Rachel House provides not only medical care, but also essential items such as diapers, high nutritious milk, basic necessities of rice and cooking oil, and transportation assistance to and from hospitals when needed. The sembako (groceries) that Rachel House supplies help ensure that at least for the next few days, the children and their families do not have to worry about where food and sustenance will come from.

If you would like to help give sparks of joy and sustenance to the children at Rachel House, please donate to support our work.

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When we hear the term “palliative care”, most of us would associate it with end-of-life medical care. This is essentially true, but it’s also much more than that, especially for the children at Rachel House. Our nurses and community health workers experience this firsthand and see how palliative care gives a new chance for hope when all seems lost.

Erwin, a shy sixteen-year-old boy, was first diagnosed with ALL Leukemia when he was just 2.5 years old. Chemotherapy was his constant companion until he was 10, when the doctor declared him clear of cancer and he could go back to school. Life had started to look up, but sadly for only a few short years.

In September 2020, the cancer cells that had robbed Eriwn of a big part of his childhood returned with a vengeance. His mother had to bring him back for treatment, even during the heightened risk environment of the pandemic. While the initial series of chemotherapy left him with violent reactions of nausea and vomiting, the new oral chemotherapy treatment has only a side effect of a voracious appetite. This, however, presented an added challenge for a mother who is already struggling to make ends meet.

Erwin has been under his mother’s care since his parents went their separate ways. His father had since remarried and stopped providing financial assistance to Erwin and his mother. Juggling between work and Erwin’s radiation and chemotherapy treatment, all alone without support, has been his mother’s struggle for many years. Eventually, they had to move in with her family, even if this means having to share a crowded space with eight others.

The story of Erwin and his mother’s struggles finally reached one of Rachel House’s community health workers, ibu Eny, through her niece who attended the same school as Erwin. Ibu Eny quickly responded and visited Erwin to assess the family’s overall needs.  While Erwin is progressing smoothly through his treatment, it was clear that his mother needs a shoulder to lean on. The journey has been long and arduous for her, battling alone with hardly anyone that she can talk to. The loneliness and financial worries are taking a toll. She talked about feeling desperately alone as her family does not ask much about Erwin. The weekly cost of transportation to the hospital of around Rp. 500,000 per week (at Rp. 140,000/- per return trip), has meant that she was having to choose between feeding herself or getting Erwin to the hospital for his treatment. They would sometimes borrow her father’s motorbike when it is available or use the public transport for a cost-saving option, but not a safer option for Erwin.

These worries of escalating costs of transportation have thankfully been put to rest now with Rachel House’s assistance, making available transportation for patients like Erwin to access treatment they need.

Accompanying Erwin for treatment has also meant that she has had to take leave from her work. With limited income, it means often going without food while waiting for Erwin at the hospital.  This is a common occurrence for many of our patients, leading Rachel House to start the practice of leaving a sum of money with food providers at hospital canteens, so that parents of our registered patients do not have to go hungry while taking care of their children.

At Rachel House, we believe that our children’s wellbeing is totally connected to the caregivers’ presence; children need to lean on their parents as they traverse through pain and suffering brought about by their illness. This is why in our work, supporting parents and ensuring their wellbeing is one of our key priorities. 

Ibu Eny once asked Erwin, “Do you miss school?”. He replied shyly that he misses his friends most. Before the pandemic, his teachers, friends and their families would visit Erwin in the hospital to cheer him on with the treatment. With the pandemic, this is no longer possible. Knowing how alone Erwin and his mother are, Ibu Eny visits and calls on them frequently to check on how they are doing, making sure they have all their essential needs. Ibu Eny has become a place for Erwin’s mother to confide in, particularly when the bumpy roads seem to go on forever. 

A mother’s love for her children knows no boundaries. We constantly look in awe, as we do now at Erwin’s mother and her immense sacrifice for her son. For Erwin, his mother’s unwavering love is the only constant in his life, she is his guardian angel. For us at Rachel House, we will do all we can to support her, so that she can continue to be there for him. Adding life to whatever time he has on this journey we call life.

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2004. The boy was born and looked normal like any other babies. Rei, the cute baby boy, was her only source of joy and hope after her first son died when he was just 2 years old and the second was miscarried when he was only 5 weeks. Her husband left her when she was just 3 months pregnant and divorced her 2 months after Rei was born. Now it was just the two of them, mother and son, in a very small house rented by her brother in one of the marginalized areas in Jakarta. With no job or money, she tried to be strong and stay alive day-by-day relying on the kindness and food given from her surrounding neighbors. At times, she had to fast. “As long as Rei has something to eat,” she smiled.

During his childhood, Rei was a bit shorter than the other kids his age. His legs seemed small, but his head was a bit large and he had that face like a grown adult. He grew up with less activities because he was too weak to walk. He would lie down the whole day and snore a lot when he slept. At this point, she thought it was normal for a fat boy like him to do such things.

2018. Rei didn’t react like he used to. He was starting to lose his sense of hearing and speech. She realized something must have gone wrong. She decided to get him checked. The result saddened her. Rei was diagnosed to have a rare genetic disorder called Mucopolysaccharidosis type II (MPS II). This disease is caused by a missing or malfunctioning enzyme. Life expectancy is about 10 to 20 years of age and while the disease progresses, the patient will experience permanent, progressive damage affecting appearance, mental development, organ function, and physical abilities. Although incurable, the doctor suggested he take enzyme therapy to maintain his health. She couldn’t afford it as it wasn’t covered by BPJS (the national insurance scheme). 

October 2020. Rei was suffocating. She rushed him to Cipto Mangunkusomo Hospital (a national referral hospital) and he had to undergo surgery to open the breathing passage. The tonsils apparently had grown bigger and obstructed the air passage. Since then, going to hospitals and carrying oxygen tanks while making sure Rei is comfortable has to be done regularly. Alone. And the fact that the COVID-19 virus is still lurking and posing a threat, these visits to the hospital have become more perilous.

 “One or two times, I really wanted to give up and just end all of this. Doing this all by myself is really exhausting but then I thought who will take care of Rei if I am gone?” she smiled sadly, yet her eyes were full of determination, and continued to suck phlegm out of her son’s throat to clear the air passage. She does this day and night. Getting up at 2 a.m. to do this night vigil has become her regular habit to make sure that he is able to breathe effortlessly. She doesn’t mind. “The sound of his snores is now like music to my ears. I can’t sleep without hearing it,” she smiled as she gently wiped her son’s face, feeling grateful that she was still able to have 16 years of togetherness with her boy.

The nurses from Rachel House have regularly paid visits to Rei’s house not only to provide free palliative care and bring other daily necessities for Rei but also to help and support his mother so that they won’t have to go through this difficult journey alone. The nurses’ presence has become a comfort to both mother and son. Rachel House acknowledges that many children with terminal illnesses, especially from marginalized areas, have often gone unheard and unseen. It aims, therefore, to strive its best so that these children can have a life free from pain and have a joy for as long as they live.

Now as Rei’s condition is deteriorating, he can no longer see, nor hear, nor speak. He only produces feeble sound here and there to show that he is in pain. He knows his mother is there day and night, caring for him, trying to soothe him. He can feel her love. 

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,221 raised of $120,000 goal
 
689 donations
$18,779 to go
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