Tyas is almost 15. She was just seven years old when she first heard the word “tumour”, back in 2010. She didn’t understand the meaning of the word back then, nor the impact it would have on her future. The agonising treatment, paralysis and the eventual amputation. Tyas’ story is one that tells of the desperate choices an impoverished family often have to make between getting a sick child to the doctor and literally putting food on the family table. But despite everything that life has thrown at her, Tyas remains positive, warm and happy. Her courage in the face of adversity is both awe-inspiring and humbling.
Meeting Rachel House
When nurse Dadan first met Tyas a few months ago, he was struck by her sunny outlook on life. For a young girl who has been paralysed from the waist down for several years, with open wounds all over both her legs (pressure sores) wrapped only in old cloth, Tyas was far from glum. She described the ordeal she had been through with smiles, eyes burning bright; when asked how she was coping emotionally, she simply shrugged her shoulders and laughed.
The only time that Dadan caught a glimmer of sadness was when Tyas told him how her friends have all stopped visiting; it seems they were afraid of the wounds on her legs, and repelled by the smell. With only old cloth to wrap the wounds, infections have become her constant companions.
A tragic medical history
When cancer was first diagnosed back in 2010, Tyas underwent surgery to have a mass removed from around her spine, followed by radiotherapy. But the family soon ran out of funds to pay for the transportation, and treatment was abandoned. Tyas’ mother is the sole breadwinner for the entire family of five; she earns less than $10 a day from selling fried snacks on the street. Tyas’ father died from cancer several years ago. Her 21-year old sister has recently been diagnosed with cancer; like Tyas, she hasn’t been receiving treatment.
Last year Tyas was admitted to a hospital close to her home with yet another infection. Without the prior history and medical records from her first hospital, which were lost in a flood, the oncologist admitted that she was groping in the dark trying to understand the treatment that had been explored previously, as well as the reasons behind some of the procedures.
At this new hospital, Tyas’ doctor recommended amputation of her legs to reduce possibilities of infections from the open wounds. Tyas agreed. She was given an epidural and was awake for the entire procedure. She related the entire incident of seeing her leg being sawed off before her eyes, remembering the sights, the sound and the smell. With a stoic smile.
A helping hand from nurse Dadan
was referred to Rachel House by one of the government district hospitals in Central Jakarta, to help manage Tyas’ symptoms, both physical and emotional. From the very first visit, Nurse Dadan has been working with great dedication to improve Tyas’ plight. He has been visiting the family multiple times per week, helping to check for infection, dress wounds and check on Tyas’ overall health, physical as well as emotional. He understood that Tyas really wanted to have the ability to sit outside and be part of the world, rather than being cooped up indoor. So he brought her a wheelchair from Rachel House – which puts a huge bright smile on Tyas’ face! Dadan would accompany Tyas on her visits to the specialists, to help Tyas in her communication with the doctor and to make sure that she gets all the medicine she needs.
Dadan has also been making sure that Tyas’ mother and sister are supported; at times, helping them access the care and support they need for their own health concerns.
Tyas’ story is one of individual tragedy and heartbreak, but it is also a snapshot of the immense challenge of being seriously ill when you are poor. And a story of a courageous young girl, with the determination and a sheer will to live.
Dadan is a dedicated and compassionate palliative care nurse. He is committed to ensure that Tyas has an optimal quality of life, for whatever the journey ahead holds for her. We often ask ourselves, what is the fate of so many others who do not have access to palliative care at home?
If you would like to help give sparks of joy to the children we care for at Rachel House, please donate to support our work.