01.02.09 Bayu's Story

Bayu (2001-2009)

Bayu was an adorable 7-year old girl who was admitted to our inpatient facility in mid December last year. She was diagnosed with Retinoblastoma in her hometown, Magetan, a year before she arrived at Rachel House. Unfortunately, due to limited financial resources (Bayu’s father is a contract labourer and her mother a domestic helper), Bayu was not administered the therapy recommended by her doctor after her right eye was removed. 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.

Despite that, Bayu was a cheerful and playful girl. Being the first patient at Rachel House’s inpatient facility, she was doted on by the nurses and showered with attention by our faithful donors. Bayu’s every wish (most of it revolving around food) was fulfilled. Even a grand wish was granted by one of our generous donors! 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.

Around Christmas, our team received a blood test order 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 patiently for the blood to arrive, and transfusions to be carried out. When our nurses visited Bayu at the hospital, she begged to return to the hospice. But we had to tell her to be patient.

We were convinced 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, we did not know if we, the palliative care team, could or should question the appropriateness of blood transfusion for an obviously terminal case such as Bayu.

We sought advice from the hospice community in Singapore and were told that we should discuss the matter with Bayu’s oncologist. Questions that we were told to ask ourselves and Bayu’s oncologist in order to determine if blood transfusion was appropriate included:

·         Whether transfusions would alleviate the symptoms of discomfort for Bayu?

·         And, questions should be posed on the purpose of the blood tests before they were ordered.

From the discussions with Bayu’s oncologist, it was decided that Bayu should return to Rachel House as transfusions were not in fact alleviating the symptoms. We were fortunate to be working with a team of oncologists at the hospital who were willing to learn alongside our team what is the best possible care we can give to the patients, when their end is near. 

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 hand over the rail of the bed and asked her mom to peel her left eye open just enough to allow her to see for herself that she was indeed “home”. The little pumpkin was an intelligent girl!

 

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 group of oncologists who are willing to consider palliative care for the sake of the children.


*Names have been changed for reasons of privacy

Lynna Chaandra
Absolute Partners
lynna@absolutepartners.com