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

COVID-19 pandemic has dramatically altered all our lives. Perhaps amongst the people most impacted are those providing care for people living with life-threatening illnesses. The “frontliners” as they are fondly called.

As we continue in this new reality gripped by the horrific tales of the pandemic, we speak to some of Rachel House nurses to ask them about their fears and worries, their hopes, and inspirations.

Through their eyes, we hope to share with you a glimpse of the reality they see as they continue to provide care to the children from some of the most marginalized communities in Jakarta, and the inspiration that keeps the light in their hearts burning bright.

This is the work of our amazing and courageous “frontliners”.

Please do join us on this journey to add life to the children’s remaining days. Especially now.

Your donation made on 15th July 2020 will allow us to benefit from GlobalGiving’s July Bonus Day.

Our grateful thanks in advance for your kind and generous support.

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Dear donors,

Rehan is a courageous 10-year old boy whose story has touched all our hearts.

Rehan is confronted daily with the challenges of an immunity compromised body, causing severe malnutrition coupled with maddeningly itchy skin fungal infections and ever-present diarrhea and oral candida. All combined would drive anyone into despair.

Both Rehan's parents have died, leaving Rehan in the care of his teenage stepbrother, with no other support system. They live in a tiny rented-room in heartbreaking condition. While his brother works as a motorcycle taxi driver from morning to night, Rehan has to fend for himself. This means that the 10-year old often misses his medications in the absence of adult supervision. Eating only 1 meal a day has also presented a challenge when medications often require a full stomach. 

Since Rehan came under Rachel House's care, Nurse Dadan has been like a father to these boys - attending not only to Rehan's medical symptoms, but also his nutritional, social, and emotional needs. He has rallied support from the entire Rachel House family to help clean and refit Rehan's home, provide nutritious meals to support the brothers' health and wellbeing. 

We hope the photo journal will help tell Rehan's story and how he has stolen all our hearts. 

 

“Please give us your support and make your donation on July 15th, 2020 to benefit from GlobalGiving’s July Bonus Day

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I first met Aldi* in early March 2020 with Dadan, the Rachel House nurse assigned to take care of him. Before the visit, I was prepared by Dadan about Aldi’s diagnosis; that he has nasopharyngeal cancer (or nose cancer) since 2017. Cancer has now spread (metastasized) to the tissues that cover the brain and his spinal cord (the leptomeninges). I was told that Aldi is referred to Rachel House to help manage the complicated symptoms at home.

I must admit I was totally not prepared for what I would encounter when we entered the house – Aldi’s uncle’s rented house. Aldi and his mother have been there since they arrived in Jakarta in search of treatment for Aldi’s condition. Aldi’s father and his brother remained in the Lebak Regency in Banten – about 140 km from Jakarta.

Aldi is 17 years old. Three years younger than my son. I can see how weak he is, lying motionless in bed. As Dadan speaks to his mother, I could see Aldi’s eyes open from time to time. His breathing is labored, aided by oxygen supply. His mother told us that Aldi is not able to open his mouth without experiencing pain and that the metastases of cancer to his spinal cord has caused paralysis of his lower body and legs.

We enquired about Aldi’s hopes and dreams. According to his mother, Aldi has been tossing between the desire to go home to see his father and brother, and the determination to fight on to get better. I remember leaving the house that day feeling the heaviness of impending sadness.

In the following weeks, I watched as Dadan develops a beautiful relationship with Aldi, a bond forged with a young man who is missing his father terribly. Slowly, Aldi began to voice his deep longing to be home. Initially, it was just a passing thought; but as time passed, these words carried a sound of urgency.

Dadan and I discussed this back at the Rachel House office. With the Covid-19 pandemic in the background and the increasing number of restrictions being imposed on people's movement, we realized that time may not be on our side. And the clock has been ticking softly but surely for Aldi. We made calls to countless ambulance and transportation companies, friends, and families with cars – checking if anyone would be willing to drive Aldi home. As more and more rejections came in, we realized the enormity of the challenge. The race against time was present in all our minds.

I could not shake off Aldi’s simple yet seemingly insurmountable wish from my mind; a rock sat heavily in my heart. When I got home I told my husband about Aldi, and his wish to go home to be with his father and brother. I was surprised by his matter-of-fact answer, “I can drive him – if someone can pay for the fuel.”

Without even stopping for a breath, I picked up the phone and called Dadan to let him know of the possible solution. Within hours, we found a donor for the fuel, informed Aldi and his mother, and with Dadan in the car, we made our way to Aldi. When we arrived, I was struck by the smile on Aldi’s face. First smile. A precious gift.

Dadan had prepared a bag with all the medications Aldi may need for the long journey and at home. I had prepared food and drinks for their car journey. As the sun was just rising in the east, Dadan and I bid Aldi and his mother farewell. Bittersweet feelings. I knew in my heart that we will not meet again.

Aldi made it home safely. He had 2 wonderful days of reunion with his father and his brother. He passed away on the morning of the third day.

*Name is changed for privacy.

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This is a story from the perspective of a Rachel House volunteer, written before Covid-19 pandemic occurs.


The thought of coming back to Jakarta during a break from studying overseas and doing absolutely nothing besides getting stuck in traffic trying to get to the malls or cafes seemed like a waste to me. Thankfully, I was fortunate to be able to volunteer my time at Rachel House, Indonesia’s first home-based pediatric palliative care service for children with serious and terminal illnesses, such as cancer and HIV.

My time was spent shadowing different nurses from the Rachel House team as they visited patients in their homes across Jakarta, Bekasi, Depok and Tangerang, providing home-based care to children living with serious and life-limiting illnesses, including the often forgotten psychological, emotional and spiritual support for the patients themselves and their carers.

Negotiating Jakarta

The first challenge was getting to the patient’s homes. We commuted by bus, motorbike, car, train or – most often – a combination of the above. Oftentimes it took hours to reach the patient’s homes as the terrible traffic slowed the journey down to a crawl. Even when we got to the right neighborhood, it was hard to find patients’ homes – many of which are in densely packed urban settlements (known as kampung) that have no streets, let alone coordinates on Google Maps. Most of the patient’s homes are tiny – some measuring as little as 5 meters squared to house a family of five or more, and constructed out of scraps of metal, plastic sheet and anything else that can be found. It was a world away from the glitz of Jakarta’s malls or University in the UK.

Once I entered a patient’s home, I was quickly exposed to the harsh reality of life, not only for the children that are living with serious and terminal illnesses, but for their (almost always) impoverished and marginalized families. Some days I would come home feeling absolutely drained and helpless, at the sheer unfairness of it all. I was also uncertain at the start about how I could be useful and not become a burden or just  a spectator – what would be the best approach to help or to talk with these kids? But the more time I spent with the nurses at Rachel House, and with the children, the more I realized that I could be there to listen, to support or to simply just play with the children. While I couldn’t cure their illnesses, or provide medical care like the nurses at Rachel House – I could be their friend. Which is something that these kids often lacked, as their illnesses either confined them to their home or had so much stigma as to make friendships really hard.

The very last patient I visited was the most adorable 3-year-old little boy, who simply made my day and warmed my heart. I was welcomed with smiles and hugs by little Ibrahim (name changed)  even though we’ve only just met. He ended up playing with my camera the whole time I was there, fascinated by both the camera and screen. Little Ibrahim’s photos were very good – he had a real talent for photos and I wish I could have stayed longer to teach him what little I knew about taking photos.

Big spirit during the hard times

Visiting children living with HIV and hearing their stories was the most eye-opening experience. I was previously unaware of how big a stigma exists around the illness, and how damaging this is for all concerned, as it forces the disease underground. It’s now become a goal of mine to tackle this stigma, by educating more people in Indonesia that although HIV is currently incurable, it is a treatable disease that does not easily spread to others.

Beyond this, having the opportunity to be welcomed into the homes of these children has redefined how I see the world. The profound strength shown by kids struggling with serious or life-limiting illnesses, but almost never giving in to anger or despair at their situation, is something I’m in awe of. They don’t let their health becomes the reason why they should stop living or at least, stops them from dreaming. I have also learned how much love, support, and communication can have a big impact, even on those living with serious or terminal illnesses.

The brief three weeks I spent volunteering at Rachel House have been the most insightful and humbling moments. Grateful for the experience, thankful to be given the opportunity to learn and grow, and for the stories that were shared and heard. I’m also most grateful for all the laughs, hugs, and love that were seen, shown, and given by the children I have met.

It has been an honor and privilege to volunteer at Rachel House, and to be welcomed into the homes of those facing challenge after challenge; I will value this experience for a very long time. I can only hope that I have left at least a small-atom-sized impact on the nurses at Rachel House and with the patients. That they know they will always have a friend in me.


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Think back when you were 18, what would have been your dream birthday gift?

For Fandi*, who turned 18 last week, all he wanted was food that he could share with his neighbors. No cake or gift was necessary.

Fandi was an active, and self-confessed “naughty” boy, until he was diagnosed with Rhabdomyosarcoma (an aggressive and highly malignant form of cancer) at 12 years of age. With multiple surgeries and chemotherapy cycles, the hospital became his playground. And soon, his world became smaller, and aloneness is the new normal.

Because of the wounds in the sacral area, Fandi’s mobility is limited and is bed bound. Both his parents work full time and his brothers in school. During the day, Fandi’s caregivers are his caring neighbors. They pop by to make sure he is alright and keep him company if he is lonely.

So, it did not really come as a surprise when he told Nurse Dadan that his wish is to be able to share a meal with his caring neighbors on his birthday.

When Dadan shared this story with his Rachel House colleagues, Hapsari - Rachel House’s HRD Manager - happened to be in the room. “I could not stop thinking about Fandi’s beautifully pure and generous wish. Nothing for himself on his 18th birthday! All he wanted was to find a way to thank his neighbors.”

Hapi (Hapsari’s nickname) took it upon herself to coordinate a simple celebration for this boy whose story had captured her heart. She rallied the support of her family to prepare “boxed-meals” for Fandi’s special friends and neighbors. These “boxed-meals” would be packed to resemble restaurant takeaway boxes.

Why the “boxed-meals”?

Apparently, Fandi harbored a secret dream of owning a restaurant, where his mother would be the chef and his father the cashier. That way, they will be together, every moment and every day. The very thing he has missed most, in his aloneness. A simple and earnest dream.

“I hope these “boxed-meals” will allow Fandi to live his dream of owning a restaurant, even if it is just for one day,” said Hapi. “It made me and my family so happy to know that we can put a smile on his face,” she added.

*name changed for privacy

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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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