Child Protection Indonesia Project #10284

Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')

Help bring Palliative Care to Indonesia's children

Project Report | Feb 14, 2020
Drops of Happiness in the End of Life

By Barry Dunning | Volunteer

Help seriously-ill children live free from pain and suffering

There are thousands of children living with serious and terminal illnesses in Indonesia, in pain and with little or no access to care. These children living with illnesses such as cancer, congenital heart and lung conditions, with complex symptoms, often live their days with little joy and suffering.

While curative treatment may sometimes be too late, it is possible to manage the children’s symptoms to allow them to live every day of their lives with joy that every child deserves.

This is the mission of Rachel House.

For the past 12 years, Rachel House’s nurses have been providing palliative care to children from some of the most marginalized communities in Greater Jakarta areas*, free of charge. Rachel House’s palliative care trained nurses to help manage the children’s complex symptoms to allow the children to live their remaining days with joy and dignity.

Irsyad’s story

Irsyad** is a 9-year-old boy. In 2018, he was diagnosed with leukemia, a blood cancer that attacks the bone marrow. For more than a year, Irsyad received aggressive chemotherapy treatment at the hospital. Unfortunately, the treatment did not stop the growth of the cancer cells through his little body. Irsyad is no longer able to walk, with cancer spreading to his spine; he struggles from constant pain, with open wounds in many areas of his body and kidney failure.

Irsyad’s parents have been told that the cancer is now at Stage 4 and that the treatment is no longer working.

Irsyad was admitted to Rachel House’s service at the end of 2018. Nurse Rina has been visiting him several times a week, making sure that his pain is being managed, the wounds on his back are being treated and that he is not suffering – physically and emotionally. Rina makes certain that Irsyad’s parents are equipped with the knowledge and skills to keep him comfortable at home, and that they are assured of her presence and her availability to be there for them.

Rina knows that Irsyad’s parents are afraid of seeing him suffer, and of the future. She is there for them – as the compassionate listening ear, and the shoulder to cry on.

When frightening symptoms appear, Nurse Rina is available to guide the family; or when needed, to speak to Irsyad’s doctor to make available medicines or treatments to alleviate his suffering.

Irsyad’s joyful moments

On his 9^th birthday, a beautiful cake baked lovingly by a volunteer brought bright smiles on Irsyad’s face. Visiting dolphins at SeaWorld? Why not? A special day at SeaWorld with other children was a dream come true, made possible with a contingent of nurses and caregivers on standby.

For as many days as Irsyad has left, Rachel House will make sure that he has every chance to live a life filled with joy and possibilities. Because at Rachel House, we believe that no child should ever have to live, or die, in pain.

Today in Indonesia there are many tens of thousands of children living with serious and terminal illnesses – such as cancer and HIV – whose days are filled with needless pain and suffering. Sadly it is not always possible to find a cure for their illnesses – but it is possible to make sure these children are living lives free from pain and suffering for as many days as they have left, and they and their families are receiving emotional and practical support.

Nurse Rina provided medicines and treatments to deal with Irsyad’s untreated symptoms, such as fever, paralysis, shortness of breath, infection, bleeding, and other symptoms. Nurse Rina also provides psychological and emotional support to Irsyad and his family. This psychological support can be anything from being a shoulder to cry on or an ear to listen, through to helping arrange a birthday party or enable Irsyad to see the dolphins at SeaWorld. And for as many days as Irsyad has left the team at Rachel House will continue to walk by his and family side. Because at Rachel House we believe that no child should ever have to live or die in pain.

*Rachel House’s service coverage areas include Jakarta, Depok, Tangerang, and Bekasi.

**Name has been changed to protect privacy.

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Dec 26, 2019
Season's Greetings from Rachel House

By Kartika Kurniasari | Yayasan Rumah Rachel

Dec 11, 2019
Rehan's Story - Courage in the Face of Adversity

By Anindita Rochili | Volunteer

The sun was peaking when we arrived. Amongst the sounds of a busy settlement, was one of a child’s glee. The little guy was in his school uniform, red and white. Even from a distance, I was drawn to his big smile and twinkling eyes. I would not have guessed that he had any care in the world until the nurse from Rachel House told me, “That’s Rehan*.”

We walked up the concrete stairs of one of the buildings. Mas Dadan, the nurse, guided us to Rehan’s room, where we sat on the floor. A gentle breeze was coming down from the fan above. Mas Dadan had told me that it was broken the last time he was here. My first thought was how frightfully warm it must have been then. Although, that might be the least of their concerns.

Rehan was sitting with his head down, almost the entire time we were there. He is 10 years old. To say that his immune system is failing him would be a great understatement. The disease has affected his lungs, his skin, his fingernails, his life. While the adults around him were getting familiar with each other, he was struggling to breathe.

“He has been coughing. Not as frequently now, but when it comes, it does not stop.” A high-spirited lady was telling us about how worried she was. She is a kind neighbor who has been looking after Rehan and bringing him dinner every night. Rehan’s 17-year old stepbrother, his sole remaining family member, was out during our visit. He works as a motorcycle-taxi driver to support them both. Their parents have passed away from the same disease. Between Rehan and his brother, there is such a heavy burden to carry at such a tender age. Thankfully, they are not on their own.

“His lungs are fine.” Mas Dadan told us as he was trying to talk to Rehan to check on how he is doing, but I can see that Rehan was reluctant. I would be too, with the new faces around me. Dr. Yew Seng, who was seated beside me guided my attention to how Rehan was breathing. The little guy’s nose must be stuffed, as he was breathing through his mouth. “That must be the reason for the coughing”, he said. We gathered that he was in pain – but I could see there was plenty that he did not say.

The little guy knew something is wrong with his lungs, but that was all he could tell about his disease. His skin was itchy too, from his arms to his back. “The itchiness and the coughing. Those are the two main concerns.” Mas Dadan told us. He then proceeded to try to engage Rehan on his medicines – what to take and when. “He cannot read, but he understands numbers” said Mas Dadan, as he was writing down instructions on the medicine container.

Dr. Yew Seng, on the other hand, was wondering about another kind of pain. “Is he happy? Does he feel strong?” He asked while using hand gestures on how small or big the feelings are. Rehan, once again, was hesitant. He was talking in a volume only Mas Dadan could hear. “Medium”, he said.

Something was making him feel sad. Something was making him feel weak. After some time, he hinted that he missed his mother, and would ask his brother to take him to visit her grave when he feels so. Then he slipped into silence again – into that other world that he did not wish to share with anyone.

As to what makes him happy, he likes to play with his friends. From what I was told, he is a popular kid in school. This gives me such relief and joy. Everyone has a world of their own, and this little guy deserves nothing less.

As the smile fades from his face, and energy drains, Rehan curls up on the floor. I could see emptiness in his eyes, a stiffness in his body, a tiredness in his soul. But my vision is limited because he is so much more. There is a whole life waiting for him with every breath that he takes. With all the hardship that he had gone through and is going through, he has managed to stay afloat. This proves to me that this 10-year old boy is a much braver and stronger person than I am. For a moment, I was so angry at life for all the tribulations thrown at him. But how could I? There is so much of life itself in this little body. He reminded me that our capacity to believe makes us capable of so much more. By the end of our visit, I was left wondering how anyone could ever cope, and how it would all turn out. Will life ever be kinder to him, and will there be light in every darkness he faces? I suppose it is his story to tell. The clock strikes 12. Rehan is ready for school.

*Name has been changed to protect privacy

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