Help bring Palliative Care to Indonesia's children

“Based on our assessment during her stay at the hospital, the main reason for the pain in her stomach is because she has been hungry for too long.” These words uttered by *Esti’s Immunologist was a shocking revelation for all of us. 

Esti is a sweet eleven-year-old, recently referred to Rachel House, with malnutrition and frequent episodes of shooting pain in the stomach that wakes her up at night.

Esti's mother died when she was only three, and she now lives alone with her father who lost his left leg and left arm in a train accident. 

Esti's father's disability makes it difficult for him to find work and a stable income. He works as a parking attendant, but only manages to be given work every alternate week. His meagre daily earning is barely sufficient to pay for their monthly rental.

In the beginning when Rachel House nurses visited, Esti had complained of not being able to eat more than a few morsels of food before pain in the stomach kicks in. After a few days of close observations, and with increasing frequency of severe bouts of pain, the nurses decided to request for hospital admission for Esti. Within a few days at the hospital, with regular care and scheduled nutrition, the pain in the stomach magically disappeared.

What can be done for a child like Esti?

Esti’s father goes to work from dawn to late afternoon. She has grown accustomed to sleeping through these hours when her father is away, cuddling a bolster on her stomach.

Is it to stem hunger? Or perhaps to avoid loneliness? Either way, this means Esti goes without food for about 20 hours each day. It is no wonder that when she finally eats, the acid that has built up in the stomach cause sharp pain.

Her father sits by her side and places his warm hand on her stomach. Wishing the pain away. Her scream and cry of pain is now a nightly occurrence. His heart hurts. But what can he do?

The excruciating pain comes whenever she eats in the evening. This makes Esti reluctant to eat. This vicious cycle causes her health to go spiraling down further. At 11, she weighs barely 14 kilograms. She is weak and too embarrassed to go out of the house.

It takes a village to care for a child like Esti

First, we found a neighbour who is willing to bring cooked meals every day to Esti. Supported by the generosity of our donors, we began the daily supply of cooked food and other high-nutrition food items for Esti.

Next, our nurses and community health workers made certain that daily calls were made to ensure Esti wakes up to take her meals, and her father organized her medication regimen before he leaves at the crack of dawn for his work.

Rachel House's team delivered some cooking utensils to allow Esti’s father to boil water to make warm drinks for them both. A new mattress and clean sheets were delivered to ensure Esti can be free from infections while her body battles on.

Children living with immunity-compromised illness like Esti need adequate nutrition, love and care. Bereft of these essential nourishments, these children could perish.

Rachel House is here for children like Esti, to ensure they are given all they need to live with the joy and quality of life that every child deserve.

We are grateful to all our wonderful donors and supporters for standing by us to help make this possible. For it takes an entire community to care for a child living with serious illnesses.

*Name changed for privacy

Hers is not an easy journey. And yet, she faced it with grace at each step of the way.

While her friends were celebrating joyous newness of youth, Jasmine’s world took a different turn. A relentless gastric pain that began in early 2019 led to the discovery of a cancerous tumour in one of the ovaries. The doctors told her then that there was a good chance for recovery as it appeared that they could remove the mass cleanly. A successful surgery to remove the tumour, followed by 5 months of chemotherapy treatment, won her a clean bill of health at the end of 2019.

For a few months after the surgery, life returned to normality; and Jasmine savoured each day with even more vigour, catching up for lost times.

In March 2020, less than a year after the surgery, she received the much-feared news of another mass found during a routine scan. Jasmine and her mother clung to one another, for hope as well as courage. Both determined not to show the other the terror in their hearts.

Another cycle of chemotherapy was prescribed. This time, Jasmine was determined to continue with life as normally as she could. Thankfully with the pandemic, classes are held virtually, allowing her to participate alongside all her classmates. She studied and sat for exams, even while undergoing chemotherapy treatment and other routine investigations. In fact, for Jasmine, the ability to be considered as “normal” like all her classmates is what gives her strength to battle on.

A year after the last confrontation with the horrifying news of a relapse, a routine ultrasound found another mass in her abdomen. When the mass in her stomach grew  frighteningly quickly within 7 days, the doctor had no choice but recommend another surgery to relief her of the rapidly growing mass.

At around that same time, Jasmine was introduced to Rachel House. Her doctor had suggested to Jasmine and her mother that they may need a team of palliative care-trained nurses to visit at home, to help Jasmine manage any pain and discomfort that may appear, whether post-surgery, or as the disease progresses.

During the first visits, Rachel House nurses were pleasantly surprised by Jasmine’s bright sunny outlook to life. She is determined to sit for her exams, even while recovering from the surgery. Fully informed about her illness and the various risks, it certainly did not appear Jasmine was in denial or avoiding the harsh reality of the roads ahead.

In fact, when Jasmine started encountering breathing difficulties and Rachel House brought oxygen tank to relief her of the distressing symptom, she calmly stated her intent in not being dependent on the oxygen tank.

This was the beginning of her journey to yoga – in search for peace and perhaps reclaiming some form of control when even the control of breath was slipping through her fingers.

Jasmine’s mother encouraged her daughter to search for yoga classes online. This led to a commitment of a daily practice. Every morning, she would appear on her yoga mat, starting the day with yoga movement and breath work. And when she felt the constriction on her chest, she would return to the space where she had learned to find peace every morning. Of course, there were times when breathing became so difficult and she had to hook up to the oxygen supply, but not for long. Only until the panic subsides.

Then there was the numbness that crept up from her toes, up her legs to her face. She quietly voiced her fears to Nurse Rina, “Is this the onset of paralysis?”

While Rina worked with her oncologist to provide medications to alleviate the symptoms, mother and daughter was determined to seek help and respite that could return them to a place of peace. This time, her mother called their religious leader (Ustad) to hold daily prayers at home. Jasmine found peace from these prayer sessions, just as she had found peace from yoga, and strength from the routine of school.

Slowly, her breathlessness eased and the numbness went away.  

There are days when Jasmine’s life is confined to her bed, when movement becomes painful and difficult. But even here, even when she is not able to do the yoga movement, the breathwork remains the cocoon she returns to.

Along with prayers, and the love of her mother, she finds peace.