Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
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Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children

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 9th 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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To our faithful friends, supporters, and donors,

We wish you a Merry Christmas, most joyful holiday season and a peaceful New Year 2020. Thank you for your amazing support this year and for continuing to walk together with us as we continue the journey towards an Indonesia where no child will ever have to live or die in pain.

We thank you for believing in our work, for keeping us in your heart, and for being part of our journey in bringing palliative care to the children of Indonesia.

With gratitude, joy, and hope,

Kartika Kurniasari, on behalf of the team at Rachel House.

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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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To all our friends and supporters who are celebrating today, we wish you a very Happy Thanksgiving! 

On behalf of the serious and terminally-ill children that we care for - and together with the dedicated team of nurses and community health workers here at Rachel House - I want to give thanks to you for walking together with us as we continue the journey towards an Indonesia where no child will ever have to live or die in pain.

We thank you for believing in our work and for keeping us in your heart - it is the expression of support such as this that keeps our team going, especially on days when the roads are bumpy and the patients' stories can be heart-breaking. 

With gratitude, joy and hope,

Kartika Kurniasari, on behalf of the team at Rachel House.

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Photo 1
Photo 1

Spend a day walking in the shoes of Nurse Susi as she travels across Jakarta to provide palliative care for children living with serious and terminal illnesses. The photo journals are by Rachel House volunteers Janel Ang & Jevon Chandra. 

 

“These are for Risa* and Nina*. I know they will absolutely love them!”, says Nurse Susi with glee after selecting two plush toys from the toy donation box. Selecting toys is part of her daily preparation ahead of visiting her patients. For many of Rachel House’s children, these fuzzy friends from the nurses will be their only toys, to hug and love. (Photo 1)

Lugging heavy bags, Susi and nurse Ria begin their day of visits to patients in their homes across Jakarta. Between them they are carrying a big bag with infant milk formula, diapers, and toys for their patients. On their backs are the medicines and medical equipment for the day. (Photo 2)

Today’s first patient is Risa - a little girl living in a neighbourhood by the water canal - where the streets are lined with colourful  bar fronts. By night, these quiet lanes turn into a buzzing scenes of nightlife and vices. (Photo 3)

Arriving at Risa’s tiny home, the nurses are glad to have brought a little fuzzy bunny to cajole Risa who had just woken up, and was a little grumpy. (Photo 4)

Nurse Ria gently eases a pulse oximeter onto little Risa’s finger to measure her oxygen saturation, as the little one moans and grumbles in her mother’s arms. The heat in the cramped and poorly ventilated room is suffocating for all, especially for Risa, who was unwell. While Nurse Ria takes Risa’s vital signs, Nurse Susi diligently takes notes of the patient’s condition. These medical records form a critical part of the care provided by Rachel House’s nurses, who work closely with the patients’ primary doctors to ensure that pain and symptoms are well managed at home, allowing them to live with optimal quality of life. (Photo 5)

Another key part of the nurses’ work is to check and count the remaining medication at home, to determine if Risa’s mother has been giving Risa the medication in the prescribed manner. This also helps the team understand how Risa has been responding to the medication. (Photo 6)

After two hours at Risa's home, the team stops by the Rachel House satellite office in North Jakarta for lunch. Nurse Susi points to a map on the wall showing the areas where her patients are located. (Photo 7)

For our second visit of the day, we travel to Adi’s house. On arrival, Nurse Susi finds her patient sound asleep. She gently tries to wake 12-year-old Adi from his nap, but today he is tired and not willing to be disturbed. Nurse Susi has to conduct her medical examination using a pen flashlight to guide her vision in the dark little home where Adi and his family lives. (Photo 8)

As Adi continues to rest, Nurse Ria gently slips the thermometer under his arm and Nurse Susi checks his pulse and breathing with her stethoscope. Adi has struggled with skin and ear infections - which are complications of his serious illness – since birth, and they require close monitoring. Before wrapping up the visit, the nurses count the medicines, calculating to ensure there is sufficient medications until Adi’s next visit to the specialist. (Photo 9)

Afterward, we journey to the third patient of the day, a lovely young girl named Nina*, in a tiny home just as cramped as the first two. Inside the house, nurse Susi finds a spot in front of a motorcycle parked inside the house, and examines her patient’s condition and takes notes. (Photo 10)

While the nurse kit contains essential medical equipment for the patients, toys are equally important part of the nurses' toolbox - to bring cheer and help the nurses build trust with the children. As Nina plays with her toy, the nurses take the time to be with her parents to find out how they have been coping, both emotionally and financially. The parents and caregivers' wellbeing is particularly important to ensure the ultimate wellbeing of the child. (Photo 11)

After her medical check-up is completed, Nina climbs onto Nurse Susi’s lap and asks to look at the colourful cover of the patient record notebook. The close relationships that Rachel House nurses have built with their patients serve as a beautiful reminder of the loving and dedicated work that they do to ensure that no child has to live or die in pain. (Photo 12)

 

*All patient names have been changed

 

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,221 raised of $120,000 goal
 
689 donations
$18,779 to go
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