(by Moza Adilen — Communications & Fundraising Officer)
On this Childhood Cancer Awareness Month, Bagas’s story is a reminder that children with cancer need more than treatment. They need round-the-clock care and comprehensive support, and importantly, people who can stand beside them and their families throughout the journey – especially at home. Because, the need for care does not end at the hospital.
Rachel House helps bring care closer to children and their families, supporting them at home through the physical, emotional and practical challenges that come with a serious illness.
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When Bagas* could no longer speak for himself, his older brother, Chikal*, became his voice.
At 12, Bagas is the youngest of three siblings and has been living with T-cell acute lymphoblastic leukemia (T-cell ALL) since 2025. Today, much of his time is spent being cared for at home, where even simple things such as eating, drinking and walking require assistance.
His family’s journey has been made more difficult by financial hardship. His father works as a daily laborer, while his mother has become Bagas’s main caregiver. His older sister works as a live-in household assistant; she helps the family financially when she can, but she rarely comes home. At just 21, Chikal has taken on much of the responsibility of helping his family navigate Bagas’s treatment and feels strongly that he needs to be involved in the care decisions for his brother.
In June 2025, after months of fluctuating fever with odd bruisings and pain in his legs, Bagas received the diagnosis of ALL. He then underwent a cycle of chemotherapy. But treatment was interrupted due to challenging situations at home. For Bagas, those were several happy months where life returned to something resembling an ordinary childhood—going to school, playing with friends in the neighbourhood and spending precious time with his family.
Sadly, in March this year, the much-dreaded symptoms returned. This time, his condition deteriorated rapidly, with seizures, confusion, hallucinations, and reduced consciousness. At times, even responding to his mother’s voice seems like a distant past. His blurred vision makes eating and drinking difficult, and although he is able to move his limbs, he can no longer walk.
When Help Arrived In The Darkest Hours
As his condition worsened and he became increasingly dependent on his family for daily care, his oncologist determined that Bagas and family needed support at home. This was when Rachel House entered their lives in August, where the focus of care shifted to helping Bagas live as comfortably as possible, and providing support for his family. Rachel House’s team of palliative care nurses visits Bagas at home to manage his symptoms, such as seizures and pain, and support the family emotionally as they navigate this worrying time.
The support also extends into the family’s daily life. As Bagas spends more time in bed and has become increasingly dependent, Rachel House provides essential supplies such as diapers and high-nutrient milk to support his nutritional needs. The team also equips his parents and Chikal with skills and information to help them understand Bagas’ condition & his needs, to allow them to better manage his care and feel more confident in making decisions on his behalf.
Bagas and his mother are currently staying at a cancer shelter near the Dharmais Cancer Hospital in the capital city Jakarta, hundreds of miles away from the rest of their family in Bogor. Every two weeks, Chikal would make the journey to Jakarta by train to be with them. He accompanies Bagas to hospital visits, speaks with the doctors, helps with the administrative matters and makes sure he understands how to best care for his brother. Sometimes, he would travel to Jakarta even before an appointment is scheduled, simply because he wants to be with Bagas. When he does, he sleeps at a nearby mosque so he can stay close to his brother for as long as possible.
He Ain’t Heavy, He’s My Brother
Chikal and Bagas are close. And as Bagas has become less able to speak for himself, his older brother has become his advocate.
It is a responsibility that changes what it means to simply be an older brother. At 21, Chikal is carrying the weight of his parents, asking the hard questions at the hospital and making sure Bagas’ needs are always heard; and balancing his deep love for his brother with doing right by him.
His parents hope that Bagas will be able to resume chemotherapy treatment, regain consciousness and recover from leukemia. For Chikal, advocating for Bagas means making sure he has the best quality of life, while keeping his parents’ hope alive. And alongside him, Rachel House provides Chikal with information he needs to advocate for his brother, continues to stand with the family, providing care, practical support and guidance through this incredibly difficult time.
But Bagas is not the only child facing a serious illness.
We need your support to ensure other children like Bagas has access to palliative care and support at home. Your contribution can help provide compassionate care, essential supplies and the support families need to face these difficult journeys together.
Help Rachel House make sure that children like Bagas are heard, cared for and never left to face serious illnesses alone.
*names changed for privacy