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

On this Christmas season of hope and joy, please allow us to share a heart-touching story of Febri - one of our patients, and how our team stood by him and his family to go through their difficult journey.

We invite you to help us by funding our service, so together we can help more children like Febri to live their remaining days with joy and dignity.

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On this gloomy afternoon, Arif from Rachel House traveled to a densely populated housing complex in central Jakarta to visit Febri*, a Rachel House patient living with Pineal Tumor (tumour of pineal gland, a tiny gland in the middle of the head). Carrying an electric fan in his right hand, Arif knocked on the door of a small house.

"Mr Arif, it is good to see you again,” said Febri’s mom who opened the door.

"Yes Mam, I want to deliver a fan for Febri." Arif explained as he entered and adjusted his eyes to the darkness of the house.

Jakarta has seen several scorching hot days. The one-bedroom house Febri’s parents had rented is close to the hospital, but it has absolutely no ventilation, with only one small window that faced a narrow alley. Dadan, Febri’s nurse from Rachel House, had observed how wet Febri’s bed had been on his last visit. The poor boy was drenched with sweat, which made it difficult for the wounds on his body to heal well.

This is the reason why Rachel House had decided to provide an electric fan to help provide some airflow for Febri and his family.

A Mother’s Joy

Febri turned 11 in February. A mischievous boy with a penchant for football, he is the precious jewel of his parents. They had waited for a very long time for his arrival – their only child. This made the news of his diagnosis in May this year all the more devastating.

It was during the Eid celebration that they started noticing Febri’s unbalanced gait and clumsy falls, but they put it down to the boy being overly tired from all the playing during the holiday. Things deteriorated quickly for Febri as headaches and giddiness turned into loss of appetite and projectile vomiting.

A series of investigations including biopsy revealed a horrifying story for Febri and his parents, changing their lives forever. By October, Febri had undergone a number of surgical procedures and radiation therapy. A tracheostomy was installed to help him breathe better.

As Arif help install the electric fan in the room, Febri is lying still in his bed, with little awareness of his surroundings. Arif remembers well on his last visit when Febri’s mother reminisced about how Febri’s constant noisy chatter or singing had filled their home. “Life was never boring with Febri in the house,” Febri’s mother said.  

Peace and Hope

Febri was referred to Rachel House by his oncologist in the hope that Febri and his parents can be supported to ensure Febri is kept comfortable at home, living with optimal quality of life on his last remaining days.

Dadan, Febri's nurse, visits regularly and remains on 24/7 contact with Febri’s parents to make sure his symptoms are managed.

Febri’s father had to leave his job as a security guard when they brought him to Jakarta seeking treatment. To help ease the financial burden of the family, Rachel House provides them with all the medical equipment Febri needs at home; starting from oximetry, oxygen tank, medical suction, to a decubitus mattress.

A reclining wheelchair was also provided to make it easier for Febri on his regular visits to the hospital. Previously, whenever Febri had to visit the hospital, his father had to make multiple trips to the hospital simply to borrow and return the reclining wheelchair on the same day.

Dadan’s presence is like a soothing balm for Febri’s parents. Filled with grief and fear, they often find it difficult to communicate with each other and talk about Febri and the future. Febry's mother now has someone she can share her stories with; her fears about the impending loss, her guilt about all the difficult treatments they had subjected Febri to.

The presence of Rachel House nurses brings peace and hope on dark and terrifying days for our patients and their families.

*Name changed for privacy

Febri's one-bedroom house with no ventilation
Febri's one-bedroom house with no ventilation
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Blessings of Dreams - Andra as a Pirate
Blessings of Dreams - Andra as a Pirate

“Nurse Rina and nurse Farrah are here!!” Andra greeted the Rachel House nurses excitedly as they approached his home. Behind him, his little brother tottered along to get a peak of the visitors.

Andra has been sitting at the patio of his home since breakfast waiting impatiently for the arrival of the nurses. He loves visitors, and these nurses are his favourite as they always bring him something fun, and sometimes, even something yummy.

"Andra, I hope you have been a good boy, because today we have brought you something special!” Farrah's words instantly brought a huge grin on his face.

"Did you also bring something for Abi?" Andra looked with enquiring eyes. Farrah nodded and gave him a reassuring smile.

Andra loves Abi, his little brother. Whenever anyone asks who he loves most, he would definitely say, "Abi!" Everything that he receives from Rachel House nurses, whether it be toys or snacks, he would always share them with Abi. 

Andra is a joyful 7-year-old boy who has been through a long and arduous 4 years of chemotherapy treatment for Leukemia. In July this year, after yet another relapse, Andra was admitted under Rachel House's service to provide care for him in the comfort of his own home, especially when difficult symptoms arise.

His parents own a small food stall near their home, selling rice and noodles to workers in the area. This is the family’s only source of income. During Andra's years of medical treatment, the food stall would often have to be closed while his parents take turn to care for him at the hospital. This meant that they would go without food for themselves throughout the duration of Andra’s hospitalisation. Thankfully, this sad situation changed when Rachel House came into their lives, and the family received support not only in medical care for Andra, but also food allowance for when Andra is admitted to the hospital.

While nurse Rina was conducting physical assessment for Andra, Farrah sat with his mother to enquire about the family and how they are coping.

"How is Andra’s appetite lately, Bu?" Asks Farrah.

"He has a healthy appetite these days, growing chubbier by the day. Just a few days ago he asked for bakso (meatballs) and shrimp. It's expensive, but for Andra… we try to always fulfil his wishes.” Andra’s mother said with damp eyes.

Even though Andra looks well with his chubby cheeks and sunny smiles, the cancer in his body is far from tamed. In fact, his mother knows that his condition is deteriorating rapidly. “He is such a good boy. Hardly ever asks for anything for himself as he understands our family’s situation.” Andra’s mother said quietly as she looked wistfully at Andra who was chatting away noisily with nurse Rina. “This is why I try to cook for him anything that he asks for now… we just never know…”

“Nurse Farrah, I’ve finished! May I have my present now please?” Andra's excited voice interrupted Farrah's discussion with his mother.

Farrah moved to get closer to him and presented him with a neatly wrapped gift. Andra immediately opened the gift with a gleeful look on his face.

“A pirate costume! You remember my dream!” His smile grew wider, occupying almost his entire face. “I want to put it on now! May I please?”

Without waiting for an answer, Andra quickly stripped his t-shirt to put the pirate costume on, complete with a pirate hat and an eye patch.

“Abi look! This is so cool right?” Andra’s question was answered by a small nod from his brother who looked up briefly as he was busy opening a gift he received from the nurses.

“Thank you so much nurse Rina and nurse Farrah. You always bring us the coolest gifts.”

This simple statement moved Farrah's heart deeply. It reminded her that dreams and play remain so important for children even, and perhaps especially, when they are sick. Simple gifts like these could bring precious smiles to their faces and joy in their hearts; hopefully to help them forget their pain, even for a little while.

We are grateful to these brave and courageous children who continue to inspire us all with the joy and generosity of their hearts. And, to all our faithful supporters, thank you for walking with us on this precious journey.

Andra passed away peacefully surrounded by his loving family not long after the visit from Farrah and Rina. The memory of his smile when he received the pirate costume will stay in our hearts forever.

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“Based on our assessment during her stay at the hospital, the main reason for the pain in her stomach is because she has been hungry for too long.” These words uttered by *Esti’s Immunologist was a shocking revelation for all of us. 

Esti is a sweet eleven-year-old, recently referred to Rachel House, with malnutrition and frequent episodes of shooting pain in the stomach that wakes her up at night.

Esti's mother died when she was only three, and she now lives alone with her father who lost his left leg and left arm in a train accident. 

Esti's father's disability makes it difficult for him to find work and a stable income. He works as a parking attendant, but only manages to be given work every alternate week. His meagre daily earning is barely sufficient to pay for their monthly rental.

In the beginning when Rachel House nurses visited, Esti had complained of not being able to eat more than a few morsels of food before pain in the stomach kicks in. After a few days of close observations, and with increasing frequency of severe bouts of pain, the nurses decided to request for hospital admission for Esti. Within a few days at the hospital, with regular care and scheduled nutrition, the pain in the stomach magically disappeared.

What can be done for a child like Esti?

Esti’s father goes to work from dawn to late afternoon. She has grown accustomed to sleeping through these hours when her father is away, cuddling a bolster on her stomach.

Is it to stem hunger? Or perhaps to avoid loneliness? Either way, this means Esti goes without food for about 20 hours each day. It is no wonder that when she finally eats, the acid that has built up in the stomach cause sharp pain.

Her father sits by her side and places his warm hand on her stomach. Wishing the pain away. Her scream and cry of pain is now a nightly occurrence. His heart hurts. But what can he do?

The excruciating pain comes whenever she eats in the evening. This makes Esti reluctant to eat. This vicious cycle causes her health to go spiraling down further. At 11, she weighs barely 14 kilograms. She is weak and too embarrassed to go out of the house.

It takes a village to care for a child like Esti

First, we found a neighbour who is willing to bring cooked meals every day to Esti. Supported by the generosity of our donors, we began the daily supply of cooked food and other high-nutrition food items for Esti.

Next, our nurses and community health workers made certain that daily calls were made to ensure Esti wakes up to take her meals, and her father organized her medication regimen before he leaves at the crack of dawn for his work.

Rachel House's team delivered some cooking utensils to allow Esti’s father to boil water to make warm drinks for them both. A new mattress and clean sheets were delivered to ensure Esti can be free from infections while her body battles on.

Children living with immunity-compromised illness like Esti need adequate nutrition, love and care. Bereft of these essential nourishments, these children could perish.

Rachel House is here for children like Esti, to ensure they are given all they need to live with the joy and quality of life that every child deserve.

We are grateful to all our wonderful donors and supporters for standing by us to help make this possible. For it takes an entire community to care for a child living with serious illnesses.

*Name changed for privacy

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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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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$104,144 raised of $120,000 goal
 
724 donations
$15,856 to go
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