Sharif was 2 years old when he was first diagnosed with Retinoblastoma. The cancer was first discovered on his right eye, and later spread to the left. Sharif was a very cheerful boy, who loved to talk to everyone around him, including Rachel House’s nurses. On one of the visits Rachel House’s nurses made to his home, Sharif begged to be taken to the beach. He said he wanted to feel the water on his hands.
Rama is a 12-year-old boy who was completely immobilized from neck down. Unable to move, Rama spends his entire day in bed. Rama was often troubled by constipation, fever, and a severe cough accompanied by a lot of phlegm largely caused by his immobility. In spite of all these, Rama has the most infectious smile that brightens up like the sunshine on a rainy day.
His name is Ardi. He is seven years old. The HIV virus had compromised his immune system and caused neurologic complications. By the time Ardi was admitted to Rachel House, he had lost his ability to see, to hear, to speak, to eat and to walk.
In a 1-room house measuring 3 x 8 meters shared by 5 adults and 3 children, lay a little boy on a thin blanket on the floor. The room had no windows other than an open door that let in the hot dusty air, and sometimes a wandering rooster from the streets. For Sani, the skinny little boy lying on the floor right at the doorway, this is his whole universe.
Ira is seven years old and has a cancer called neuroblastoma. She has recently been discharged from hospital and Dadan, Rachel House’s newest nurse, has come to see how she is doing at home. Sitting on the floor beside her, he reaches into his bag and pulls out two books about princesses. Ira accepts them with interest. A princess crown decorates her pink shirt.
Budi was five when he started complaining of headaches and blurred vision. He was also vomiting four to five times a day. When the symptoms continued and he started losing his sight, Budi’s mother took him to the hospital. After several tests, Budi was diagnosed with a neuroblastoma.
Karina is a three-year-old girl who has lost her mother and brother to HIV. Karina’s father is a gentle spirit, also suffering from HIV: now, they only have each other.
Miki was 6 months old when problems began. It started initially with a simple cough, that degenerated into a more serious TB. For this little soul, life has been a long journey of in and out of the hospital. Medical expenses are draining his family’s resources of US$4/day, his condition a constant worry and distress for his young mother of 22.
“Mom, I know I am dying. What is the point of spending more money on chemotherapy when we know it will not make the cancer go away! Please save the money for a business you can start when I am no longer here.” These words, spoken with such wisdom from a 14 year-old, finally brought home the brutal reality of the battle that was lost, young hopes dashed.
Siti was the only child of a young couple from West Jakarta. She was first diagnosed with cancer in July 2007, a year after she had fallen in the shower while still learning to walk. According to Siti’s parents, the fall had resulted in a bad wound around her coccyx that never healed, and all bowel movements were increasingly obstructed and painful.