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