To the east of Jakarta in the city of Bekasi, a three-year-old boy lives with brain cancer. Deni* has been struggling with a tumour at the back of his brain and the side-effects of the intensive chemotherapy routine on his small body. Rachel House’s nurse, Dadan, describes some of the side effects as ‘semutan’, an ant-bite-like painful tingly sensation in the fingertips, coupled with difficulty in walking, fevers and headaches. Perhaps the most life-inhibiting part of Deni’s condition has been the surgical removal of one of his eyes and the increasing loss of sight in his remaining eye.
Upon meeting Deni for the first time, however, it’s hard to tell he is anything but your typical, joyful three-year-old. Deni greeted me with a kiss on the hand (a sign of respect shown to elders) and invited Nurse Dadan and I to play cards with him. When we played with his toy gun, while he was astonished by the sounds the gun made, it was clear that he really enjoyed playing with things that make sounds. He was smiling from ear to ear when playing the drums on a can of powdered milk with crayons. Thanks to the support of the Rachel House team – especially nurse Dadan, nurse Ria and nurse Marissa – and the unstinting love and support of his parents, Deni is able to enjoy life almost as any other three-year-old; carefree and finding joy and fulfilment in the simplest things.
Deni’s parents are grateful for every day that he remains healthy and happy. Sadly, his condition could change at a moment’s notice, and each day is a blessing for their family. Just recently, Deni was unable to walk and his oncologist was worried that he wouldn’t make it. Deni recovered, however, and explained away the situation as merely his foot being ‘bengkok’ or bent.
Despite the many challenges faced by Deni, he continues to live every day with a smile on his face. Deni’s parents shower him with love and affection every day. The Rachel House team, led by Nurse Dadan have been providing pain and symptom management for Deni, emotional and psychological support for the entire family, and practical support in terms of essential (but expensive) infant milk and diapers. Deni’s courage and resilience are an inspiration to all of us. Despite his physical challenges, Deni is really keen to start learning at home, so later he can go to school and join in the fun just like every other child.
*name changed for privacy
Story by Lucas Ong (a volunteer at Rachel House)
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