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

Hers is not an easy journey. And yet, she faced it with grace at each step of the way.

While her friends were celebrating joyous newness of youth, Jasmine’s world took a different turn. A relentless gastric pain that began in early 2019 led to the discovery of a cancerous tumour in one of the ovaries. The doctors told her then that there was a good chance for recovery as it appeared that they could remove the mass cleanly. A successful surgery to remove the tumour, followed by 5 months of chemotherapy treatment, won her a clean bill of health at the end of 2019.

For a few months after the surgery, life returned to normality; and Jasmine savoured each day with even more vigour, catching up for lost times.

In March 2020, less than a year after the surgery, she received the much-feared news of another mass found during a routine scan. Jasmine and her mother clung to one another, for hope as well as courage. Both determined not to show the other the terror in their hearts.

Another cycle of chemotherapy was prescribed. This time, Jasmine was determined to continue with life as normally as she could. Thankfully with the pandemic, classes are held virtually, allowing her to participate alongside all her classmates. She studied and sat for exams, even while undergoing chemotherapy treatment and other routine investigations. In fact, for Jasmine, the ability to be considered as “normal” like all her classmates is what gives her strength to battle on.

A year after the last confrontation with the horrifying news of a relapse, a routine ultrasound found another mass in her abdomen. When the mass in her stomach grew  frighteningly quickly within 7 days, the doctor had no choice but recommend another surgery to relief her of the rapidly growing mass.

At around that same time, Jasmine was introduced to Rachel House. Her doctor had suggested to Jasmine and her mother that they may need a team of palliative care-trained nurses to visit at home, to help Jasmine manage any pain and discomfort that may appear, whether post-surgery, or as the disease progresses.

During the first visits, Rachel House nurses were pleasantly surprised by Jasmine’s bright sunny outlook to life. She is determined to sit for her exams, even while recovering from the surgery. Fully informed about her illness and the various risks, it certainly did not appear Jasmine was in denial or avoiding the harsh reality of the roads ahead.

In fact, when Jasmine started encountering breathing difficulties and Rachel House brought oxygen tank to relief her of the distressing symptom, she calmly stated her intent in not being dependent on the oxygen tank.

This was the beginning of her journey to yoga – in search for peace and perhaps reclaiming some form of control when even the control of breath was slipping through her fingers.

Jasmine’s mother encouraged her daughter to search for yoga classes online. This led to a commitment of a daily practice. Every morning, she would appear on her yoga mat, starting the day with yoga movement and breath work. And when she felt the constriction on her chest, she would return to the space where she had learned to find peace every morning. Of course, there were times when breathing became so difficult and she had to hook up to the oxygen supply, but not for long. Only until the panic subsides.

Then there was the numbness that crept up from her toes, up her legs to her face. She quietly voiced her fears to Nurse Rina, “Is this the onset of paralysis?”

While Rina worked with her oncologist to provide medications to alleviate the symptoms, mother and daughter was determined to seek help and respite that could return them to a place of peace. This time, her mother called their religious leader (Ustad) to hold daily prayers at home. Jasmine found peace from these prayer sessions, just as she had found peace from yoga, and strength from the routine of school.

Slowly, her breathlessness eased and the numbness went away.  

There are days when Jasmine’s life is confined to her bed, when movement becomes painful and difficult. But even here, even when she is not able to do the yoga movement, the breathwork remains the cocoon she returns to.

Along with prayers, and the love of her mother, she finds peace.

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His sister stroked his hair and whispered, ”Can you hear me, little brother? What are you dreaming of right now? Where have you been? Whom have you met?” Dwen didn’t answer, of course. He has not been able to respond since his last surgery. He looked really peaceful, as if he was just asleep.

Every corner of our house reminds me of him. The kitchen and how he would help me do the chores. Our basket of laundry and how he would take the wet clothes from the bucket and handed them to me one by one. The chair where I usually sit and how he would approach and asked me, ”Are you tired, Bunda (Mom)? Can I get you a drink?” His toys and how he would always tidy them up after playing. The window from which I could see him running from the field across our home, holding something in his little hands, “These are for you, Bunda.” And those were the most beautiful flowers I had ever seen.

The memory of him is still so vivid for me. He was born a healthy baby - our youngest and our only son. He brought so much joy to our lives. But to me, he was more than that. He was the love of my life and I was his first love. He grew like any other boy his age, active and full of life. Nothing seemed to be wrong. However, in August 2019 when he was just five years old, he vomited several times. When he didn’t get better, we had him checked at the hospital. The most devastating news were uttered from the doctor’s mouth that forever changed our world, “He has brain cancer,  Medulloblastoma,“ the doctor informed us. I was numbed. My entire world crashed before me.

After that, Dwen had to undergo 3 surgeries and 30 cycles of radiationtherapy. I wondered how he could cope with all the pain in his body, yet continued to be so kind and gentle? Why wasn’t he cranky? Why didn’t he complain? Even in his sickness, he never failed to spread joy and showed his love to me. “I love you, Bunda (Mom). Let me help you, okay?”

In the midst of all this, as our spirits were crushed and we struggled financially, God opened a way for us though the support, friendship and encouragement from Rachel House. Nurse Dadan and Rachel House’s team visited us regularly, not only to check on Dwen’s condition but also to support us with  basic necessities such as diapers, milk and medicine. They strengthened our wobbly spirit as we journeyed through the darkest times of our lives. I felt like I had an extended family who held us and guided us through the frightening moments of physical pain and emotional turmoil that came in blows after blows.

Fasting month this year was unlike any other year. Dwen needed to undergo his 17th surgery; however unlike his other surgeries, this time he didn’t wake up from the surgery. He was lying in his bed with his cat finding comfort at his feet.  I was really grateful, though, we got to celebrate Eid Al-Fitr together. We put a white “Koko shirt” (male shirt for celebrating Eid Al-Fitr) on Dwen and took pictures together. He breathed his last breath 5 days after that.

Dwen passed away at the age of 7. Our house is very quiet without him. There will no longer be small footsteps running into the house from across the fields, bringing me flowers and a bright smile that accompanied the soft voice saying, ”These are for you, Bunda (Mom). I love you.” He may no longer be here, but the memory of him is still lingering in our hearts and thoughts.

I love you, too, my little angel. Till we meet again.  

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At one of the markets in West Jakarta, Rachel House’s nurse, Janah, is busy selecting a mattress for her patient. The market is very hot and humid, but that does not deter Janah from her mission of finding a new and comfortable mattress for Dinda* to sleep on.

Dinda is one of Janah's patients. The 10-year old has been constantly on her mind lately. Not only is Dinda born with a disease that severely compromises her immunity, she is also alone in the world with a mother who is sickly and too weak to take care of her.

For both Dinda and her mother, good nutrition and hygiene combined with strict adherence to their medications are the only way to stave off infections that could endanger their lives. However, with Dinda’s mother getting weaker by the day, even putting food on the table has been a challenge. This is one of the reasons why Dinda has been occupying Janah’s mind; she feels totally helpless in trying to change the impending tragedy that seems to be staring at Dinda. 

Dinda is plagued with multiple health challenges. Thankfully, this bright and chirpy little girl seems to be able to bounce back each time, complete with a sweet smile on her face. Recently, she has been dealing with a disturbing bout of cough, most likely stemming from the untreated tuberculosis that she has had to deal with since young. Every little thing would set the cough off, even just playing in the puddle of rain outside her house.

With regular care and attention from Janah, closely monitoring her symptoms and adherence to medications, Dinda's cough is finally getting better. During Janah’s last visit to their house, Dinda excitedly informed Janah, "I no longer cough at night now! I am sleeping much better. I have been taking my medications, just like you told me to.” she said with a beaming smile on her face, very proud of herself.

However on this same visit, Janah found multiple lesions on Dinda’s skin. Her tiny body is  covered with red splotches and dried scabs from scars left from her scratching. “It’s really itchy. I scratched them in my sleep.” she said while looking down, either at the scars or perhaps feeling guilty knowing that she should not have scratched them.

Puzzled by the skin irritation that has progressed rapidly through her patient’s body, Janah asked Dinda’s mother for permission to inspect their sleeping area – located just next to where they were sitting. The mother and daughter occupied a tiny 2x3m space, where they cook, wash and sleep.

The first thing that caught Janah’s attention was the dirt and dust that had collected all around the mattress that was laid directly on the floor. And it also suddenly occurred to Janah that after months of visiting Dinda’s house, she had never seen a change of bedsheet.

"We only have one set of sheets.” Dinda’s mom said with an embarrassed smile, when Janah enquired.

Janah's heart sank when she heard the answer. She knows that with Dinda’s mother's deterioarating health condition, having money for food and basic essentials is already a huge challenge, let alone buying new sheets.

Back at the office, Janah shared her concerns regarding the health and safety of Dinda and her mother with her colleagues, and recommended that Rachel House help replace the mattress to ensure hygiene, and hopefully heal the skin issues for Dinda. This is what brought her to this hot and humid market this morning, accompanied by a colleague from Rachel House, Arif. After paying for their purchase, Janah and Arif went to Dinda's house to deliver the new mattress.  They helped Dinda and her mother clean the space, and then placed the new mattress proudly in the centre of their home, complete with soft new sheets.

It was such a treat to see the big beaming smile on Dinda and her mother's faces. They were absolutely delighted by their new bed. “The sheets are really soft and the mattress so thick and bouncy. This is the comfiest bed ever!" Dinda said excitedly bouncing and rolling around her new bed.

The feeling of tiredness suddenly evaporated from Janah, buoyed along by Dinda's glee and excitement. The joy of just being able to bring a slice of happiness into Dinda’s life is indescribable for Janah. While the roads ahead may continue to be paved with obstacles for Dinda, but today, just for this one moment, she can be embraced in the soft and fluffy new bed.

Note: Dinda’s mother sadly passed away 2 months after, leaving Dinda now in the care of her frail and elderly grandmother.

*name changed for privacy

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Ribka had just stepped into the house and was greeted by a little boy who was teetering excitedly towards her. Even though his face looked pale, Hadi had a cheerful smile spread across his face.

“Hadi misses Nurse Ribka the most.” Said grandma as she held Hadi back while nurse Ribka dons her PPE, getting herself ready to enter the family space.

“Wait until I’ve changed my clothes, Hadi,” Ribka said to cajole the little boy she adores.

“Usually he doesn’t want to walk at all as his knees are quite weak. But, when he sees Nurse Ribka, he gets so excited that he just tumbles happily to her.” Grandma smiles at her grandson.

While waiting for Ribka to get ready, Hadi pointed excitedly at the bag that Ribka had brought with her. He knows that the bag contains red grapes, his favorite fruit. Hadi rarely gets to eat fruit, especially grapes – because they are too expensive for the family to buy.

“I want that…” He said pointing to the bag without completing his sentence.

Little Hadi and his mom live in a one-bedroom house shared with his grandparents and two of his uncles. As a single parent, Hadi’s mom has to work day and night, not only to support her family, but to pay for Hadi’s medical expenses. This leaves them with hardly anything left for their living, much less luxury items like fruit or grapes.

Hadi was diagnosed with Retinoblastoma when he was 3. While his mom had noticed that the pupil on his left eye looked different, like a “cat’s eye”, the family simply did not have the knowledge nor the financial means to take him to the doctor. It was not until the eye turned alarmingly red and he was vomiting non-stop that he was taken to the doctor for investigation. For the last 2 years, chemotherapy had been Hadi's battleground, and remission has been the family’s daily prayer.

“Let’s start our checkup, shall we?” Ribka said to the boy who had been patiently waiting for her to don her PPE. Hadi nodded and happily went closer to Ribka, ready to “play”.

After conducting a general physical examination, Ribka proceeded to look at the wound dressing of the large mass on Hadi’s left eye.

"Most kids are afraid to be examined, but you are a brave boy!" Said Ribka, as she cleaned the abscess where the eye had been removed to stop the spread of cancerous cells.

“So it won't hurt anymore.” Answered Hadi, with his childlike voice.

"Wow, so when I am here, I can make the pain go away?” Ribka’s question was answered with Hadi’s enthusiastic nod and smiles.

"I am relieved to see how much better Hadi is now since nurse Ribka came into our lives. He used to cry such a lot, complaining of pain in his eye and his head. We didn’t know how to help him. We could only lament about our ill fate." Grandma's eyes filled with tears as she shares the family’s experience.

Grandma is Hadi’s main caregiver during the day when Hadi’s mom is at work. She often cries when she shares her fears and concerns about Hadi. "I am grateful that God still gives me time to live, so that I can be here to help take care of Hadi.” Grandma said quietly, with eyes full of tears.

Rachel House was established with the belief that no child should ever have to live or die in pain. This is what drives us to provide palliative care service for children living with serious illnesses like Hadi at free of charge. Pain and symptoms are managed at the comfort of the patients’ homes so that children can live with optimal quality of life in their remaining days.

“I am grateful to Rachel House for the transportation support. Now Hadi and I don’t need to wake up at 4am to get to the hospital appointments on time. "

Hadi and his grandmother used to take public transport to the hospital. From their home, they had to change 4 (four) buses. This meant waking up at 4 AM in order to get to the hospital for the 8AM registration time. Often, grandma had to carry Hadi on her back as the poor little boy could not walk far. By the time they reached the hospital, Hadi would be crying from the sore and itchy wound on his left eye.

“He absolutely loves riding in the taxi now because it is cool inside the car. In fact, he said he likes it better than being at home because of the air-conditioning that helps make his eye less itchy and sore.” Said Grandma.

"Is that right, Hadi?" Asks Ribka. Hadi smiled shyly and nodded his head.

Times like these remind Ribka of what important teachers her little patients are for her. Riding an air-conditioned car maybe a normal thing for most of us. But not for Hadi. He is filled with joy and gratefulness for the things most of us take for granted. Hadi’s ability to celebrate every small moments of joy in the face of great adversity is a lesson for Ribka.

And, Hadi’s smile is totally infectious. The visit has completely energised Ribka and filled her with happiness and gladness. The tiredness she was feeling before the visit is now erased and replaced with the memory of the sweet smile on Hadi’s face.

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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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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$100,792 raised of $120,000 goal
 
681 donations
$19,208 to go
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