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

“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.