Lala’s Story

What Rachel House Means to Me – A Mother’s Perspective

Lala, my daughter aged 6 and half, was diagnosed with advanced stage Neuroblastoma on January 12, 2009. At the time, we were still living in Canberra where I was pursuing further studies on a scholarship. When Lala had a relapse in April 2010, we (Lala, Chandra and I) decided to return home to Jakarta for family support. Through the assistance of some of our close friends in Canberra and the doctor who looked after Lala at the Sydney Children’s Hospital, we got to know about Rachel House and the palliative care services it provides to children like Lala. In mid June 2010, I met with the pediatric oncologist Dr. Edi Tehuteru at Dharmais Cancer Hospital (“Dharmais”), who introduced me to one of Rachel House’s nurses, Alisda Sihotang.

Our meeting at Dharmais was followed by an assessment visit from Alisda at our home. On that first visit, Alisda explained in detail the services provided by Rachel House, including the organisation’s vision and mission, and the admission criteria. Even though I had read the information on Rachel House’s website, I was surprised (and panicked) when Alisda explained that Lala actually did not fit into their patient admission criteria, as the service was set up to provide palliative care for children from families who cannot afford medical care.

At that time we had absolutely no idea about the care and treatments available for children with cancer (let alone palliative care) in the hospitals in Jakarta (at Sydney Children’s Hospital Lala was taken care of by a multidisciplinary team that consisted of an oncologist, clinical oncology/palliative care nurse consultant (“CNC”) and a social worker). And we could only imagine the ordeal we had to go through to explain to the new doctors, nurses and hospital staff about Lala’s condition, answering the same questions over and over again; Oh, is your child sick? Ah…with cancer… what? Neuroblastoma? What is that? It was exhausting. Especially as we were coping with the relapse of Lala’s cancer. Eventually we became a part of Rachel House’s family. And we are very grateful and thankful for it. It is a peace of mind for us.

During the 8 months that we have been under the care of Rachel House, we have had a lot of interactions with Nurse Alisda and Dr. Edi. I really feel the nurses at Rachel House understand and fulfil the Care Nurse Consultant role well. I have been able to discuss and receive practical input from the nurses when Lala had worrying symptoms from her illness; and often, Alisda would just call to ask how we’re doing. Lately Alisda has even become more of a play therapist for Lala; their relationship has bloomed so beautifully that Lala, who is usually quite fussy about people, would even happily go to the Rachel House Satellite Centre after school last week when she had some stomach problems.

Dr. Edi always answers my text messages, even in the middle of the night; and he gives us ample time for consultation at his Kencana Loka Clinic. We feel a lot more comfortable taking Lala to the clinic compared to Dharmais Hospital when we need a consultation, as the hospital is further away from our house and it also tends to get crowded.

Rachel House’s nurses and doctors have really helped soothe my worries and concerns, giving us peace of mind and a confidence knowing what we need to do when Lala has worrying symptoms. Thankfully, Lala is not a difficult child when it comes to a medical procedure.

She is still passionate about school and enjoys doing arts and crafts such as drawing and coloring. She has an amazing imagination. Her dream is to be an artist one day.

Even though Lala is currently under palliative care, Chandra and I have never lost the hope that our child will grow to be an adult and achieve everything that she is destined to be. For as long as she still breathes, there is hope. Only the Almighty determines life and therefore death.