Bayu’s story

Patient Name  Bayu
Age  7 years old
Patient admission date  6 December 2008

Patient History

Bayu was an adorable 7-year old girl who was admitted as the first patient in our inpatient facility in December 2008. Bayu’s family came from Magetan in Central Java. She was the 3rd child from a family of 4, with 3 other brothers.

She was diagnosed with Retinoblastoma in her hometown, Magetan, a year before she arrived at Rachel House. At the time, the doctor in the hospital had removed her right eye, with recommendation for radiation therapy following the surgery. Unfortunately, due to limited financial resources (Bayu’s father is a contract labourer and her mother a domestic helper), her parents could not afford the treatment.

By the time she arrived at Rachel House, the mass of tumour on her right eye had grown to the size of an orange, and the cancer had metastasized to her brain and liver

At Rachel House

Despite that, Bayu was a cheerful and playful girl. Always singing and full of life. She was extremely meticulous about the wound on her eye, being careful to make sure that the bandages were changed when bleeding had shown through with strong odour of blood. She was also adamant that no one, but our nurses, were allowed to see her wound without the bandages. Not even her parents were allowed in the room when bandages were being changed!

Bayu was doted on by the nurses and showered with love and attention by our faithful donors. Bayu’s every wish (most of it revolving around food) was fulfilled.

Even a grand wish was eventually granted! 2 weeks prior to her death, Bayu expressed the desire to return to her hometown to see her brothers and grandparents. The donor, who felt that the 15-hour journey would cause too much suffering for Bayu decided to fly her family to Jakarta instead! The reunion was truly moving for all, with Bayu lovingly wiping the tears on her brother’s face when they finally met. We even overheard her saying to her brother that he should look after their grandmother as she was the one who cooked every meal for them.

Around Christmas, our team received an order for blood tests to be done from Bayu’s oncologist, followed by an instruction that Bayu was to be re-admitted to the hospital for blood and platelet transfusions. In the hospital, Bayu and her parents waited for days for the platelets to arrive. In the meantime, Bayu begged every day to return to the hospice.

We knew that the end was near for Bayu. Heavy bleeding continued relentlessly from the tumour mass on her face, her appetite was waning fast, sleep and lethargy appeared to be winning over her cheerful spirits. However, at the time, our team (and the team of oncologists we were working with) was still learning about the role of transfusion in palliative care for terminally ill patient, such as Bayu.

We sought advice from the hospice community in Singapore. They suggested that in making the decision, we should be asking the question “would blood transfusion alleviate symptoms of discomfort currently experienced by Bayu?” If not, then Bayu should not be put through the painful ordeal of the transfusion. In fact, this same question should be posed on the purpose of the blood tests before they were ordered.

Soon thereafter, Bayu was allowed to return to Rachel House as transfusions were not in fact alleviating any symptoms. We were fortunate to be working with a team of oncologists at the hospital who were willing to learn alongside our team.

Bayu returned to Rachel House on January 9th. Although weak and without much vision (as the tumour had begun to grow from the left eye), she demanded proof that she had indeed returned “home”. She ran her hands over the rail of the bed and asked her mom to peel open her left eye to allow her to see for herself that she was indeed “home”. The little pumpkin was an intelligent girl!

Bayu’s last days & the family’s journey

Bayu’s relentless begging to “go home” made us realize that our role in palliative care goes beyond the nursing role we were administering, but that we needed to stand alongside Bayu’s oncologist and question if treatments being proposed were appropriate. It is a long journey, but we are blessed with an amazing team at the pediatric oncology ward at RSKD that is willing to consider palliative care for the sake of the children.