(by Annabel Maria Christina – Volunteer)

I still remember the first time I joined the nurses of Rachel House at a visit to one of their patients – Vie*, a 17-year-old girl who has to battle Leukemia at a tender age.

That day, there was a cheerfulness in Vie’s and her mother’s eyes when the Rachel House team arrived at their home. The first time I saw Vie, I was struck by her sparkling eyes hidden behind her trendy transparent glasses and her shy but sweet smile. Due to the chemotherapy ordeals she has been through, Vie does not have long hair like many girls her age. She is quite thin, but remarkably agile.

Vie’s mother was very enthusiastic and greeted the team warmly with a loud and happy voice. “Hello, I’m Abel,” I greeted Vie with a smile. Vie reached out for my hand and placed the back of my hand on her forehead, as a form of respect in our culture.

I had expected to meet a patient and her family with sad faces, or maybe with tears running down their faces. But as soon as I met Vie and her mother, I realized my expectation was completely misplaced. I had walked into a cheerful space; they were happy and excited, and Vie’s mother has a great sense of humor. I honestly was preparing myself to cheer them up and give them courage; but in reality, I was the one who was totally inspired.

A Teenage Girl’s Quandry

“I told her to wear a beanie or a shawl to cover her head and neck when she goes out,” said Vie’s mother. Vie rolled her eyes and replied jokingly, “Yea, and look like a country bumpkin!” that made everyone in that room roar with laughter. Nurse Muti gave a fashion tip to Vie on a trendy way to wear a headscarf or a hijab, which seemed more palatable to Vie.

Vie then turned very serious and told us that she wants to make her face ‘glow’, a trend that is currently popular among girls her age. She asked Rachel House’s young and trendy Dr. Stela what skincare regimen she would recommend. Concerned with Vie’s condition, Dr. Stela suggested that clean water would be best and the most natural, as commercial skincare may be laden with chemicals that could irritate Vie’s sensitive skin. Seems dissatisfied with Dr. Stela’s advice, Vie turned around to ask me for my recommendations. I gently encouraged her to follow Dr. Stela’s advice, recalling my experience with skincare that made my skin breakout in pimples.

The medical check-up

After the cheerful banter, Nurse Muti and Dr. Stela settled down to work and begun to conduct physical assessment on Vie, checking her vitals, recording her blood pressure, body temperature, heart rate, etc..

“So, how’s her condition, Doc?” asked Vie’s mother with hopeful eyes. “Her clinical condition is good,” said Dr. Stela. Vie’s mother replied as if she already knew the positive result with, “Good, right? But, her medical report is always red.” Dr. Stela and nurse Muti gave a sympathetic stare.

As Nurse Muti dispensed some medications for Vie, Vie’s mother told them that Vie had not been able to clean her teeth for the past 3 days as her gum bled easily. Nurse Muti gave Vie some medicated soft brushes and a mouthwash, to allow her to clean her teeth comfortably. Dr. Stela moved to show Vie how to brush her teeth gently with these brushes, and recommended the softest toothbrush and a suitable toothpaste for her. Dr. Stela also checked to make sure that Vie did not have bloody stool, and suggested that Vie eats papaya and drink mustard greens mixed with pineapple juice.

“Does it taste good?” Vie’s mother asked with a rather confused face.

“It’s like smoothies,” said Dr. Stela. Vie said she was keen to try them.

Nurse Muti reminded Vie and her mother of Vie’s next doctor’s appointment, to make sure they have the date on their calendar.

“Now, let’s open the box!” said Vie’s mother with excitement.

Vie reached for the box of groceries that Rachel House team brought for her. The first thing she pulled out was a high nutritional supplements milk with chocolate, her favorite flavor.

“Alhamdulillah,” said Vie gratefully as she continued to take the goodies from the box.

As I sat in the room and watched this wonderful scene of family togetherness, I realized that life is something that we should be grateful for; and our sorrows and problems are just part of life that we can embrace and know that it makes us stronger.

Vie is one of the many children living with terminal illness in Indonesia.

Head of UKK Hematologi Onkologi Ikatan Dokter Anak Indonesia (IDAI), Dr Teny Tjitra Sari, said that the number of pediatric cancer patients recorded in 12 large hospitals in Indonesia has almost reached 2,000 children in 2022. As for the HIV/AIDS case, there were 12,533 children that were infected in 2022 based on the data provided by Imran Prambudi, the Director of Infectious Disease Prevention or Pencegahan dan Pengendalian Penyakit Menular (P2PM), Ministry of Health of Indonesia.

Children are supposed to be learning and playing freely. However, for those living with terminal illnesses, they have to accept the fact that their world is reduced to that of between their homes and the hospitals. Not only are the children’s lives devastated by the illness, but so are the lives of their parents and the family.

Rachel House appears as a ray of hope in their world that has grown dark. Besides medical care, Rachel House also provides emotional and social support for the patients and their families. As in Vie’s case, before Rachel House came into their lives, Vie and her mother were alone and confused with no one to talk to and seek advice from about Vie’s condition. With Rachel House, a pop of color returns to their lives. Vie’s mother now has someone to speak to about Vie’s conditions, even as simple as the dosage of Paracetamol to give to Vie when she has fever.

Rachel House is not only a shoulder for them to lean on and a place for a child to confide in when they are terrified of their illness, but also a place of comfort for the entire family on this difficult journey.

*Name changed for privacy.