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 am afraid to die. Not because I fear death, but I just can't imagine what would happen to Hans if I were not here?

These are the words often spoken by Hans* grandmother.

Hans is one of the many Rachel House patients whose main caregiver is their grandmother. In the autumn of her life, Hans' grandmother has had to assume the role of a mother and a father for Hans, who is diagnosed with a serious and life-limiting illness. Bereft of any support system, she is left alone to fend for herself and her beloved grandson. 

Hans' parents abandoned him when they received the confirmation of his diagnosis. Under the pretext of looking for work in a different city, Hans’ mother left him with his grandmother when he was just one-month old. That was 4 years ago. No words have been heard since from both his parents, and Hans’ grandmother has never been able to reach them. They have left Hans with an elderly grandmother who is physically weak and financially devastated, to take care of a boy whose health hangs on a fine balance and can deteriorate in an instant.

Often when Hans' health takes a terrifying turn and he has to go in and out of the hospital, his grandmother knows only to hold him close and cry with him as he screams in pain; she simply does not know what else to do. 

What we do to help

Life has become much easier since Hans was admitted as a patient of Rachel House. With nurse Mutiara from Rachel House walking by their side, Grandma no longer needs to struggle alone; she now has a support system. Nurse Mutiara would visit them regularly to check on Hans' medical condition and manage the physical symptoms such as fever, chest and skin infections and diarrhea. The goal is to make sure he is healthy and able to thrive. For Hans and his grandma, food and other basic necessities are also provided to make sure grandma has the energy to provide the best care for Hans. 

Grandma also has Yus, Rachel House’s community health worker, to call on, should she need help or simply someone to talk to or confide in. As a listener and a companion, Ibu Yus has helped ease Grandma’s worries tremendously, especially with her fears and worries about Hans and the illness that plagues him. Nurse Muti and Ibu Yus have become the dependable shoulders to lean on for Hans and his grandmother.

This is Rachel House’s reason for being. To ease the suffering of children living with serious illnesses, and to provide support for their families. To take care, not only of their physical and clinical challenges, but also to ease their emotional, economic and social challenges - to be their lifebuoy in the turbulent seas. 

*name changed for privacy

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Rachel House as GlobalGiving Project of the Month

Rachel House is thrilled to have been chosen as the GlobalGiving’s Project of the Month in April.

Out of more than 5,000 life-changing nonprofit projects in 170+ countries, we are truly honoured that the GlobalGiving team decided to feature Rachel House’s work, that brings palliative care to the children of Indonesia, in the Project of the Month Club.  

This tremendous support means the world to us, especially for our patients and their families. The phenomenal contribution we received from the Project of the Month members has bolstered the funds we need in order to provide the much needed home-based palliative care, at free of charge, for children living with serious illnesses from financially disadvantaged families. This vouch of confidence has also buoyed our spirit (after a challenging 2 years of the pandemic) and renewed our commitment to ensure access to pain and symptom management for all children to alleviate their suffering and improve their quality of life. 

Our sincere and grateful thanks to the GlobalGiving team and all the wonderful members of the Project of the Month Club, for your generosity of spirit and the trust you have bestowed upon us. We hope the stories of our work (see below) can provide you with an example of how your donation will make a difference and a huge impact on the lives of the children living with serious illness in Indonesia.

Stories of Our Work in the Times of the Pandemic 

The pandemic has created major disruptions in many of our lives, especially those working in health care. For Rachel House, while the past 2 years have been turbulent of epic proportions, it has also strengthened our team spirit and our commitment to ensure better access to palliative care for all children living with serious illnesses in Indonesia.

In 2020-2021, while the hospitals were struggling to cope with COVID-19 cases, we worked closely with the pediatric wards across major hospitals in Jakarta to provide care for the children (living with cancer, HIV and other congenital illnesses) in the safety of their own homes. This saw the doubling of new patient admission numbers last year, but sadly, also the increase in the complexity of the cases in the children we received. Many of the children were admitted too late into the healthcare system due to the challenges of the pandemic, leaving them with severe and devastating symptoms by the time they presented at the hospitals. 

Homecare Impact numbers:

  • Patients under care (2021): 80 children (plus parents)
  • Total Hours of care (2021): 1245 hours (excl. travel time)
  • Referral Partners: 27 hospitals & health facilities

Improving Access to Palliative Care in Indonesia

In line with our vision that “no child should ever have to live or die in pain”, ensuring better access to palliative care for all children in Indonesia is our reason for being. 

In 2020, we published “Palliative Care: A Handbook for Caregivers” to help families provide care with confidence for their children living with serious illness at home. This is especially critical for those families who live in the smaller cities and rural areas with difficult access to health care. We distributed the books widely through our partner NGOs and hospitals throughout Indonesia, and also made the book available in e-book format via our website.  

While the pandemic has put a stop to travel and physical classroom training, it did not dampen our mission to improve palliative care knowledge in Indonesia. In 2021, we launched our very first Palliative Care Virtual Training Series for Pediatricians and Pediatrics Nurses led by palliative care experts from around the world, including Cincinnati Children’s Hospital. Adapting to the challenges of the pandemic and leveraging available technology allowed us to bridge the knowledge gap and bring international experts to the doctors and nurses in Indonesia – taking us one step closer in our mission to establish a palliative care ecosystem in Indonesia, ensuring palliative care is available and accessible for all children living with life-limiting illnesses.

Our Nurses’ Work Featured by BBC StoryWorks

Last year, BBC StoryWorks featured the inspiring work of our nurses in a video produced for the International Council of Nurses. The video tells the stories of nurses’ inspiring work, from rural America to the urban-poor setting of Jakarta, the community served by Rachel House nurses. The camera followed our nurse Rina as she goes about her day providing love and care for her patients, many of whom would have been bereft of medical care at home and social assistance without her dedication and commitment. (you can watch the video here: https://www.youtube.com/watch?v=45NINeO3oCU)

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Alesha with her favourite Nakano Miku cake
Alesha with her favourite Nakano Miku cake

With the sand quickly running out from the hourglass of her life, every remaining moment with her family is precious. So when Alesha's birthday appeared on the horizon, all of us at Rachel House knew we had to seize the moment and celebrate the gift of these precious lucid hours she had left.    

The appointed day

Today is that specially appointed day of celebration for Alesha. After an initial brief moment of hesitation, Alesha had quickly embraced the idea of celebrating her birthday one month early. Because, why not?

When Rachel House’s nurse, Dadan, arrived at her house that morning, he was relieved to see a bright beaming smile on her face. It was like the entire sun is shining brightly in Alesha’s room that morning.

This 13-year-old girl, who had been through the most trying 2 years in her journey with Osteosarcoma, is at last given a few days of reprieve from the severe pain and other complexities that had plagued her.

But first, Dadan had to perform the usual task of physical assessment; examining the cancer mass that has left a gaping wound on her shoulder, checking the catheter to make sure all is clean and functioning well.

Today, Alesha showed no discomfort or pain throughout the examination. Her eyes kept darting outside, in anticipation of the promised excitement of a birthday celebration.

"Are we done yet?" Alesha asked for the second time.

Dadan smiled, delighted and relieved at seeing Alesha so full of cheer and life, even while the cancer is eating her body away.

"Just checking one more thing and we will be done,” Dadan assured her.

The girl nodded, while her eyes darted back to the hallway outside her room.

Alesha's actual birthday is slightly more than one month away. When Dadan first suggested that we celebrate her birthday early, she was hesitant.

“Are we allowed to do that?” She asked her mother quietly. 

Amidst the many uncertainties and as Alesha continued to have more difficult days than good days free from pain, we wanted to make sure that she and her family could enjoy the celebration of what could be her last birthday.

As soon as Alesha and her mother said “yes” to Dadan’s suggestion, Rachel House team and volunteers went into full gears to fill the day with everything that Alesha love.

Our wonderfully generous pastry chef, Tiar Vafilin, who has for years put glorious smiles on the faces of Rachel House’s patients with magical cakes of their dreams, worked her magic again this time, at a short notice!  

"Ok, we are done!”  Dadan's words immediately brought a smile to Alesha's face.

As if on cue, Alesha's family came into her room singing a birthday song. Her mother walked in holding the birthday cake all lit-up with bright burning candles.

Even though she could not get up, the joy was clearly shown on Alesha's face. She looked with glee at the cake and the various gifts on Dadan’s arms.

"It is Nakano Miku, my favorite anime character!" Alesha squealed when she saw her birthday cake. Very happy to know that her request for the special birthday cake was fulfilled.

Dadan could see the look of sadness in the eyes of Alesha’s parents, even as they sat on the floor to cheer Alesha on as she blew out the candles. Both knew in their hearts that this may very well be the last time they get to see their little girl blow out the candles. This is the harsh and heart-breaking reality.

But on this very day, Dadan hope that he could at least carry a little bit of their burden and help bring cheer to Alesha and her family.

What we do to help

Alesha was diagnosed with osteosarcoma (bone cancer) at the age of 12. By the time she was admitted to Rachel House’s service, the cancer had metastasized to her lungs and the cancer was no longer responding to the treatment.

The cancer mass had broken through her skin leaving gaping wounds on her leg. While the cancer wreak havoc in her system, it has also caused bowel obstruction causing pain and severe discomfort. With limited movement, anime is the only thing that can cheer her up.

Refusing to return to the hospital in the middle of the ongoing pandemic, Dadan’s visits is the only medical assistance Alesha can rely on to help manage her increasingly complex and challenging symptoms. Dadan had to jump through many hurdles in order to get Alesha access to the large doses of morphine she needed to keep her comfortable and free from pain. Luckily for Alesha, her oncologist and the team at the hospital remained available to work closely with Dadan to keep Alesha comfortable.

We cannot even begin to imagine what Alesha's final days would have been like without Dadan’s presence by her side. For every child Rachel House cared for, we know that there are many more that are left to endure untold pain and suffering at home, without access to care.

This is what keeps our nurses going, braving the streets against all odds to reach the children who needs us. The smile on Alesha's face is what fills our hearts with gratefulness knowing that in that moment, she is well.

*named changed for privacy

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Optimal quality of life for cancer children
Optimal quality of life for cancer children

Dear faithful supporters,

February is a special month - to celebrate, to remember and to dedicate.

On 4th February, we commemorate World Cancer Day and on 15th February, we commemorate International Childhood Cancer Day. These days are dedicated not only to raise awareness of cancer and encourage its prevention, early detection and treatment, but also to raise awareness about childhood cancer, and to rally support for children and adolescents living with cancer, the survivors and their families.

As a pioneering force in pediatric palliative care in Indonesia, our service has alleviated the pain and managed the symptoms of hundreds of children living with serious and terminal illnesses (a great majority of whom had cancer), from some of the most marginalized communities.

For more than 15 years, our team of palliative care trained nurses have faithfully walked alongside the children living with serious illnesses, and their families, across the Greater Jakarta areas, to deliver not only clinical care to alleviate their symptoms, but also emotional and psychosocial support. Embracing them in a cocoon of care, so that they are not alone on their difficult journey. 

Support courageous little fighters on Cancer Awareness Month

In Indonesia, the prevalence of cancer in children (aged 0-14 years) is estimated at 16,291 cases per year, and 50% of these children arrive at healthcare facilities at an advanced stage of their disease. The situation is even worse during this pandemic, with hospitals inundated and families choosing to stay at home for fear of catching the virus.

This is perhaps one of the reasons why we are seeing the highest number of cancer patients admitted to our service in the 15 years since our establishment; and more patients arriving with difficult and complex symptoms than ever before. 

As the pandemic continues to change our lives in unimaginable ways, we witness the devastating consequences on the lives of our patients and their access to healthcare. One example is the requirement of PCR tests for the patients and their caregivers prior to hospital admission. At a cost of IDR 275,000 (or USD 19) per test, this is prohibitive for most of our patients whose family earn merely IDR 30,000 (or USD 2) a day. This requirement, not covered by the National Health Insurance, is now another barrier to access and treatment for these patients. 

In this special month, we would like to invite you to join us in our mission to bring palliative care  to children living with cancer, to help alleviate their pain and suffering, in the comfort and safety of their home. 

Show your support and love, and be a LIFE SPONSOR! Help us add life to the remaining days of these courageous children - the patients at Rachel House. 

Delivering love & care, anywhere and at any time
Delivering love & care, anywhere and at any time
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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.

--

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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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$124,833 raised of $250,000 goal
 
801 donations
$125,167 to go
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