Help bring Palliative Care to Indonesia's children

Naufal has been through many things that a child his age should never have to endure. At just aged 2, Naufal was diagnosed with Leukemia with a metastasis to the brain. Now at 8, he is at the final stages of the disease. Unfortunately, his current condition has rendered him without much strength and mobility. He can no longer enjoy many of the activities he used to love doing. Running and playing in the field with children his age are all things of the distant past.

Even as his condition continues to deteriorate, impacting much of his daily activities, Naufal’s personality shines through, his fighting spirit continues to burn bright. 

Nurse Ria, his primary nurse from Rachel House, often surprises him with little gifts when she visits. He absolutely loves this ritual, and even started to send text messages to Ria to visit more often, dropping hints of his little wishes. He once said to Ria, “the best way to make my pain go away is with either your special medicine, or the toys that you bring!”

Once in the middle of a terrible bout of pain, when the only response Ria and his mother could get from him was a little “hum” for an answer, Ria decided to cheer him up and asked if he would like a special toy the next time she visits. To her total surprise (and delight), Naufal answered almost immediately with a firm “yes”. Ria had to stifle a smile, as her heart was filled with gladness hearing a hint of excitement in the boy’s voice.

In his weakened state, Naufal harbors a dream, that one day he would be able to play Carrom Board Game again with his friends, just like they used to. Sadly, by then, he had started to lose his vision, and sleep had started to take over.

For Ria, Naufal’s mother is a source of inspiration. She is loving and strong, wonderfully encouraging of Naufal, and totally protective of his wellbeing.  She is actively involved in his care, asking questions, making suggestions, always wanted to make certain that she is giving the best to Naufal.

COVID-19 pandemic has not been easy for Naufal’s parents. They decided to stop taking Naufal to the hospital to keep him safe from the virus. This meant stopping all chemotherapy, understanding that the remaining chemotherapy sessions were palliative in nature. As Naufal’s condition slowly deteriorates, our nurses would sit with his parents as they contemplate the wisdom of their decision. Allowing both to voice their doubts, fears and guilt. Being the listening ears that they need as light begins to dim for Naufal.

They talked about the time when Naufal’s grandmother visited and insisted for them to take Naufal to the hospital to resume treatment. Naufal’s mother firmly said “no”. She said she knew it was important for Naufal that he could stay at home with his family, to not continue the treatment that had brought him pain for many years.

“I don’t expect my boy to be cured after all this time. But I hope that he can be comfortable with us at home, and live whatever time he has left without pain. That is our prayer.” she told Ria with a brave smile.

Nurse Ria is honored to have been part of Naufal and his parents’ journey, helping them in their wish to keep Naufal at home for his remaining days, in comfort and surrounded by their love.

As we post this story this evening, all of us at Rachel House remembers Naufal who passed away peacefully in his sleep this morning, surrounded by the love of his family.