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

Little Didi* has been living with HIV and serious lung infections all his life – but thanks to the tireless support of nurse Rina and the team at Rachel House he can now breathe easy and focus on his homework. A story by Avril Delgado, who spent a few weeks of her summer holiday with Rachel House on July 2019.

Deep in the narrow backstreets of a densely populated North Jakarta area lives Didi, a shy and very special 11-year-old boy. At first glance, he looks just like any other child, especially if you can coax a smile from him.

However, look a little closer and you will notice how slight he is, so much smaller than other boys his age. Move a little closer and you will see a thin plastic tube running under his nose and behind his ears, connected to an oxygen tank at his side. Living with HIV since birth, and complicated by tuberculosis, Didi’s lungs are damaged to the point where he now struggles to breathe without the assistance of this essential external oxygen.

Step inside his humble home and you will see the walls are ringed with four-foot-tall oxygen tanks, some full and some empty, but all there to ensure Didi has enough oxygen to breathe. You’ll also notice the shelf of medications in his home, to keep the HIV at bay and manage the other serious complications he now lives with – including pulmonary hypertension and cardiovascular disease.

Didi shares this small house with his grandmother, his brother and his uncle. Both his parents have sadly passed away.

Despite all of these challenges, Didi is quick with a smile and generous with his laugh once he is comfortable with you. He loves to learn, play games like any other child his age.

“Nurse Rina, come take a look at my homework” 

As soon as I entered Didi’s home together with nurse Rina – one of Rachel House’s senior nurses – his little face lit up.

All excited, he cried out “Nurse Rina, nurse Rina, come take a look at my homework!” proudly showing us his maths homework, while joking about his learning progress. Because of his condition, he hasn’t been able to attend school. But he remains curious and keen to learn. So Nurse Rina has been giving him maths homework, as well as helping him learn to read and write.

Nurse Rina always makes sure that Didi is absolutely comfortable and relaxed before starting her thorough medical examination. While keeping a conversation going with Didi, she listens carefully to his breathing and checks his vital signs to get a full update on his condition. It has been an uphill struggle to get Didi to take his medications daily and in a disciplined manner. As the years progress, Didi has begun to question why he should continue to take his medication. The rebel in most teenagers is appearing in him. Sometimes it takes many long negotiations and extensive explanations on the importance of the medications to keep the illness at bay to convince Didi. Sometimes this works. Other times, it takes a serious infection to convince him. Sadly.

Didi’s grandmother and uncle work very hard to put enough food on the family table and to keep a roof over the family’s head. His grandmother has a small food stand in their neighborhood, where she sells Indonesian snacks. However, whenever serious infection develops and Didi requires 24-hour care or hospitalization, the stall would close and the family will rely on only the measly income from Didi’s uncle.

Didi’s dependence on oxygen, not covered by the Government Insurance scheme, adds to the mountains of worries for his grandmother. Thankfully Rachel House donors have stepped in to ensure Didi has enough oxygen to breathe without this bankrupting the family.

A Shoulder of Support

Beyond the physical symptoms, addressing the emotional, social and psychological issues of someone living with a serious or life-limiting illness is central to palliative care. On every visit, nurse Rina spends time with Didi and his grandmother, discussing the issues and the challenges they face. The stigma around HIV remains strong in Indonesia and Nurse Rina is one of the very few people who Didi’s grandmother can speak to openly about the challenges and frustrations she faces every day.

On my visit, I caught a glimpse of tears when grandma told Nurse Rina about Didi’s condition and the challenges faced by the entire family. It was only then I understood the significant emotional burden on patients’ families, and the extent of impact of Rachel House’s service on people’s lives. Nurse Rina’s visit, her attentiveness, and openness was a soothing salve not only for Didi but also for his grandmother, giving her an outlet to share her worries and her fears and help make her frustrations disappear even for a moment.

As we left the house, Didi was busy with his new homework given by Nurse Rina; comfortable, relaxed and breathing normally. Grandmother had a smile on her face, thankful for the shoulder of support. I was moved by what I witnessed.

*Name has been changed for privacy

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On a beautifully sunny and clear day, 21 children aged between 2 – 15 and their families gathered with great anticipation outside Ocean Dream Samudra in Ancol, Jakarta’s largest waterpark. The children, all patients of Rachel House, have looked forward to this day with great anticipation; for many of them, it would be their first trip to the Ocean Dream and Seaworld. The trip was made possible through the kind and generous sponsorship of Kate, a volunteer who ran in Canberra Half Marathon to fundraise for Rachel House patients.

The day started with a group photo, with so much glee and fun as everyone – the patients, their families, the nurses and caregivers – all posed in the midst of bubbles of excitement everywhere. There was a sense of anticipation in the air as the patients were super excited to see what was coming. One little girl was running all over the place in excitement as she just couldn’t contain it! Luckily she did not have to wait too long as the Ocean Dream opens up before her eyes of wonder.

After the initial buzz of being at Ocean Dream, the group headed towards “Scorpion Pirates”, a live action show by the water with stunts and jet skis. The children were thoroughly fascinated by the jet ski stunts, especially when it went under water. One little boy was so mesmerized that he did not blink once, eyes glued to the show.

Following “Scorpion Pirates”, the children were treated to the sea lion/otter show and the dolphin show. Laughter was never far from the children’s lips as the seals leaped through hoops and the dolphins performed tricks in the air.

Then we went to a penguin show. During the penguin show, one of the children wanted to get close up to see the penguins that she sneaked over the barrier! She had the most amazing time of her life watching the penguins being fed, and diving in and out of the water. Rachel House’s nurse, Ribka, accompanied her throughout the show, taking her by the hand to see the fish display nearby, much to her delight.

The adventure at Ocean Dream was capped off with a group photo of all the children with the dolphins. For almost all the children, it was their first time seeing dolphins up close and touching them. A truly unforgettable experience they will cherish for a long time.

The last stop for the day was Seaworld, where the children were treated to a smorgasbord of colorful life in the sea, through a giant aquarium. Even though many were tired by then, having walked many hours, the sheer delight and wonder were still shining bright in their eyes. In the end, it was this – the ability to bring a little slice of fun and play in their challenging journeys – that give us all joy. For we may not be able to add days to their lives, but we definitely aim to add life to their every day. Our grateful thanks to all our donors and supporters for helping make this wonderful event possible.

 

 

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To the east of Jakarta in the city of Bekasi, a three-year-old boy lives with brain cancer. Deni* has been struggling with a tumour at the back of his brain and the side-effects of the intensive chemotherapy routine on his small body. Rachel House’s nurse, Dadan, describes some of the side effects as ‘semutan’, an ant-bite-like painful tingly sensation in the fingertips, coupled with difficulty in walking, fevers and headaches. Perhaps the most life-inhibiting part of Deni’s condition has been the surgical removal of one of his eyes and the increasing loss of sight in his remaining eye.

Upon meeting Deni for the first time, however, it’s hard to tell he is anything but your typical, joyful three-year-old. Deni greeted me with a kiss on the hand (a sign of respect shown to elders) and invited Nurse Dadan and I to play cards with him. When we played with his toy gun, while he was astonished by the sounds the gun made, it was clear that he really enjoyed playing with things that make sounds. He was smiling from ear to ear when playing the drums on a can of powdered milk with crayons. Thanks to the support of Nurse Dadan and the unstinting love and support of his parents, Deni is able to enjoy life almost as any other three-year-old; carefree and finding joy and fulfilment in the simplest things. 

Deni’s parents are grateful for every day that he remains healthy and happy. Sadly, his condition could change at a moment’s notice, and each day is a blessing for their family. Just recently, Deni was unable to walk and his oncologist was worried that he wouldn't make it. Deni recovered, however, and explained away the situation as merely his foot being ‘bengkok’ or bent. 

Despite the many challenges faced by Deni, he continues to live every day with a smile on his face. Deni’s parents shower him with love and affection every day. The Rachel House team, led by Nurse Dadan have been providing pain and symptom management for Deni, emotional and psychological support for the entire family, and practical support in terms of essential (but expensive) infant milk and diapers. Deni’s courage and resilience are an inspiration to all of us. Despite his physical challenges, Deni is really keen to start learning at home, so later he can go to school and join in the fun just like every other child.  

*name changed for privacy

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Last year, photographer DIlla Djalil Daniel embedded with Rachel House, as part of a collaboration project with the Como Foundation.

Dilla followed in the footsteps of nurse Dadan and nurse Ria, visiting patients and families from some of the most marginalised communities across the sprawling mass of greater Jakarta. 

Dilla’s photos capture the circumstances and the challenges of our work, providing palliative care to children living with serious and terminal illnesses. They also capture the fierce love and unwavering support given to these children by their families - whether that is a parent, a sibling, a grandmother or a neighbour. Because every child deserves to laugh, to draw, to dream and to live free from pain.

It's thanks to Global Giving donors that Rachel House nurses like Dadan and Ria are able to continue supporting children living with serious and terminal illnesses. So thank you for your ongoing support. 

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Headaches and nausea have plagued Bima* for countless days and months. Waking up with blinding headaches, which often measure 3 or 4 out of 5 on a pain scale, is his daily reality. Standing in the morning assembly in school fraught with nausea or vomiting is often the tragic shame he wears.

Bima, 11 years old, lives with his grandmother after losing both his parents to a disease that he now lives with. He has a loving and attentive grandmother, the only family member he has left. But Grandma tires easily now; exhausted in part from the battle every morning and night with Bima, the coaxing and cajoling to convince Bima to take his medications. Persuading a teenager to do anything is trying at the best of times, it is even more challenging when faced with a teenager in pain, and angry with life. Bima does not understand why he has to live with this reality, why does he have to take these medications that he believes make him sicker? And nobody can guarantee him that the headaches and nausea will go away if he takes his medications every day… so why should he obey?

When Rachel House’s nurse, Dadan, first met Bima and his grandmother, he immediately noticed the absence of food in the house. Dadan later found out that Grandma earns only Rp. 80,000 (US$ 5.50) a week. While working methodically and systematically with Bima’s specialist at the hospital to determine the source of the chronic headaches and nausea, Dadan rallied support from Rachel House’s team of community health workers to provide assistance for Bima’s grandmother.

It took patience and persistence, both to convince Bima to undergo the various tests at the hospital, and in advocating for doctors to persist with the investigation and not cast him aside. 

Earlier this month, 5 months after Bima’s admission to Rachel House, something extraordinary happened – Bima agreed to go to the hospital accompanied by our community health worker - Diah, without any resistance.

While the day started with a boring old visit to the hospital, Bima was promised a delightful excursion after the hospital visit. Once the tests were completed, Bima and Diah began their adventure. They first made their way to lunch, followed by the exciting ride on Jakarta’s brand new mass rapid transit (MRT) to experience the incredibly speedy train around town! After the giddy experience, Diah and Bima managed to squeeze in an ice cream treat, before taking the bus to go home to a worried Grandma. All this, without one moment of headache!

For Diah and Dadan, it was an immense joy for them to see Bima play and explore life like any boy his age. To see wonder and excite, not pain and sadness, in his eyes. We are grateful for every moment when these little ones are able to play and enjoy life as they deserve, for every moment is precious for these young lives.

It's thanks to the support of Global Giving donors that Dadan, Diah and all our team at Rachel House are able to support patients like Bima. So thank you for your ongoing support. 

*All names have been changed to protect the privacy of patients and their families.

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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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