Aki Hayashi is a Japanese volunteer currently embedded with Rachel House. Aki, who works in the medical industry in Tokyo, is supporting the Rachel House team in Partnerships and Communications. Here Aki, describes one of her days in the field with the Rachel House team.
“I started volunteering with Rachel House in Jakarta at the beginning of August. Rachel House is not-for-profit providing a specialized form of medical care (known as palliative care*) to children from marginalized communities living with serious illnesses such as cancer and HIV. Their team of nurses provide this care to patients in their homes across greater Jakarta, free of charge.
Soon after joining with Rachel House, I spent a day with the nursing team in North Jakarta to see their work first hand. The areas I visited were very poor and a world away from the cities and towns of Japan. Most of the houses have only one very small room (about 5-7 square metres) with 4-5 people living in this space. These dense urban communities (known as “kampungs”) often have no streets names, and in many cases only narrow dusty paths, so it can be very hard to find a patient’s home.
In one of these kampungs lives Kia (not her real name). Kia is a very cute 6-year-old girl, with a shy and smiling face, living with HIV, lung tuberculosis and suffering from malnutrition. I was shocked to hear that her little brother had passed away from HIV in June, when he was only 10-months old. Because her mother was lost in grief after the death of her son, Kia has not yet started on the medications to help stabilise her many illnesses.
Together with Nurse Susi and Tania from Rachel House, I visited the family with some community volunteers from the Rachel House CNPC (Community Network in Palliative Care) Team. The CNPC members are not nurses, but volunteers from the local community who provide support for sick children and adults living in their neighbourhoods.
When nurse Susi discovered that Kia was throwing up her anti‐nausea medicines because of the nasty taste and the scary red color, she came up with a simple solution – mixing the medicine with honey! Kia’s mother also worried a lot about Kia’s weight and her nutrition. Kia weights only 12kg; the average weight for a girl her age is 20kg. Susi suggested a new menu consisting of Kia’s favorite food (eggs, fish, and chicken).
Kia’s mother often worries about her children at night time and cannot stop calling to her husband, even when he is working to earn the family’s sole income. On hearing this, the CNPC volunteer Eny told Kia’s mother, “Please know that you can call me whenever you feel grief, anxiety, and sadness”. This one type of important mental support provided by CNPC volunteers to families living will seriousness illnesses.
Kia’s father also had some worries. He asked Nurse Susi about the mosquito marks on her legs, which never seem to disappear. Nurse Susi told him that this is because Kia’s immune system had been compromised by the HIV, which is not being managed by the antiretrovirals (ARV), yet another reason why it’s so important for her to be on the medicines. By the time we had left the home, the family were reassured and determined to get Kia healthy again, knowing that they had Susi and the CNPC team there to support them every step of the way.
In the afternoon, I visited another patient with with Nurse Susi and another Rachel House nurse, Ribka. Nina (not her real name) is just 6 months old and the youngest patient of Rachel House. Nina was born with with HIV. She is living with her Grandmother and her 3-year-old sister in North Jakarta. Nina was referred from a primary health clinic (a “Puskesmas”) 3 months ago, but until recently Rachel House could not locate the family as their living situation was very unstable and constantly changing. Sadly, Nina’s father is currently in jail and her mother has totally neglected her care, leaving Nina in the hands of her grandmother. Nina’s mother had even left Nina’s grandmother uninformed that she was born with HIV. This was only confirmed when Nurse Susi brought Nina and her grandmother to the hospital.
As soon as we arrived at Nina’s house, Nurse Susi noticed that Nina’s grandmother has not yet started the ARV and other medications yet, even though she obtained the medicines from hospital on the previous week. Therefore, Nurse Susi taught Nina’s grandmother the difference between each medicine and demonstrated how to give the syrup to Nina and to apply ointment to the rash spots. After this Nurse Ribka separated the medicines into two groups; those to treat HIV and those to manage symptoms, and explained how and when each should be used.
Although Nina needs to go to hospital once a week, the family cannot afford to take a taxi. Nurse Susi and Nurse Ribka explored different options before deciding that Rachel House would support the cost of transportation through its hosptial transport and meals fund.
For me, the experience opened my eyes to truly understand the struggles of just two young children and their families living in a city of 10 million people. Experiencing the difference between this life and the lives of people in Japan, or even the lives of the people visiting the many glitzy malls of Jakarta, gave me a new perspective.
Rachel House’s Homecare and CNPC services are an essential service for children such as Kia and Nina. I hope the work Rachel House does can help them live long and happy lives together with their friends and families.
Aki Hayashi
* Palliative care is specialized medical care for people with serious illnesses and their families. It relieves the patient’s pain and symptoms, and provides emotional, social, and spiritual support for the patient and their family members. The goal of palliative care is to improve the quality of life of the seriously ill and to support their family.