Help bring Palliative Care to Indonesia's children

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.

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 18^th 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