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

Today is a very special day for Ruli, it is his birthday.

Rachel House nurses have been busy preparing for this special day; a birthday cake has been especially ordered, along with his favourite food. Even in the midst of this incredibly challenging year, our nurses are determined to create happy memories for Ruli on his special day.

Life has not been easy for this 12-year old. His mother died when he was just 2. Growing up, his grandmother had been the pillar of security for him, and his sole source of loving tenderness. Sadly, she passed away suddenly a few days after his birthday last year. 

Ruli was left under the care of his aunties after the death of his grandmother. They are busy with their young family, and Ruli knows he is not welcome there. Whenever he is sick, everyone argues about who will take him to the hospital.

Slowly, Ruli stopped taking his medications; even as our nurses begged and cajoled him. Ruli lives with an immunity-compromised condition where he is susceptible to various infections. Non-adherence to medicine makes him vulnerable to infections and slow the healing process. 

On the day of his birthday, a picture of a beautiful woman carrying a little boy with a beaming smile was on the face of the cake. Ruli had sent the only picture he has of his mother to our nurses and asked if we could have a cake made of this. Our wonderful cake artist, Tiar, was only too happy to accomodate this request.

When the cake was unboxed, Ruli was overjoyed and was smiling from ear to ear. The first smile our nurses have seen from Ruli since the death of his grandmother. What a gift to be able to bring a spot of sunshine and a slice of happiness to this boy’s life.

While the path ahead may continue to be rocky for Ruli, and his lung infection and breathlessness may continue to plague him, our nurses have assured him that we will always be around to take care of him. This is our commitment at Rachel House, the vision that no child should ever have to live or die in pain – and that includes emotional pain.

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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.

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The scorching heat and humidity this morning is causing a downpour of sweat down my forehead. I desperately wanted to wipe it off, but remembered the infection control protocol Nurse Erna drilled in my head on our car ride here.

"It's good thing that it is hot today. When it rains, it is almost impossible for us to access Lisa's house."  Erna explained as we walked carefully down the crowded narrow path towards Erna’s patient's home we are visiting today.

Lisa lives with her grandmother in one of the most densely populated areas in Jakarta.  To reach their house, we had to walk quite a distance through narrow alleys with no car access. When it rains, the sewer bubbles up quickly submerging the path in dirty muddy water.

Upon reaching the house, we could see Lisa's grandmother waiving at us from her front door, beaming with smiles. "Please come in." she said as she ushered us through the open door.

As the door closed behind us, we put our bags down to quickly don our PPE (personal protective equipment). Lisa’s grandmother is accustomed to this infection control practice since March, the beginning of the COVID-19 pandemic in Indonesia.

In the background, we could hear Lisa's grandmother murmured softly, "Lisa, Nurse Erna is here. You must be very happy now."

"I am very happy too! Can't wait to see you, Lisa” Erna called out. “I will be there in a minute. Just need to change my clothes first." But of course, we are not expecting a reply from Lisa.

Lisa is 15 years old with a body so small that she barely looks like a 10-year old girl. Lisa has been living with an illness that affects her immunity since she was a baby. Sadly, a virus that developed into a brain infection left her paralyzed from the neck down when she was 12.  Life for her and her grandmother, her sole caregiver since her mother died when she was 1, took a drastic turn then.

It was around then, in 2018, that Lisa was admitted to Rachel House for palliative care.

After wearing her PPE, nurse Erna rushed over to Lisa and knelt beside her.  She stroked Lisa's head gently as she greeted her.

"Grandma, has Lisa had irregular bowel movements these days?"  asked Erna, as she ran her hands over Lisa's stomach.

"Yes, she has for the past few days." Grandma answered.

"I brought some medicine for her constipation. Will give them to you after the examination." said Erna.

"Lisa, let's change the NGT (feeding tube) first, ok? You will be much more comfortable with a new one."  From the distance, I saw Erna swiftly changing Lisa's NGT tube. During our car ride here, Erna explained that it is very important for us to change the NGT tube regularly to prevent infection.

This pandemic is a real threat for children like Lisa, who needs regular medical attention but face great challenges in getting to the hospital, not to mention the heightened risks of getting infections during this pandemic. The presence of Rachel House nurses means children like Lisa have access to medical care at home, and their caregivers have access to 24/7 support when needed.

Again and again, I heard Lisa's grandmother posed her concerns and questions about Lisa’s condition, all of which were answered patiently and gently by Erna.

I am constantly in awe of our nurses, who devote themselves to provide the best care for the children. Amidst all the constantly changing landscape of risks in the community during this pandemic, I have never heard our nurses complain about their work.   

As a Communications member of the team at Rachel House, while this is not the first time I have visited our patients, it is my first since the pandemic. I can really feel the immense change! The donning of the full PPE, mask and face shield in patients’ homes, in extreme heat and often with little ventilation, was like being in a sauna for me. To see how Erna could focus intently on the care for not only Lisa, but also how she attended patiently and gently to all the questions posed by Lisa’s grandmother was totally beyond me.

At the end of the 30-minute visit (a limit put in place since the pandemic), Erna handed Lisa's medicines to her grandmother, along with clear instructions for the administering of the medicines. We also left some powdered milk and diapers for Lisa.

"Grandma, please don't forget to give the medicine to Lisa, and let me know later if her constipation is relieved with the medicine. Please call if you have questions or need help ok? "

"Thank you so much, Erna and Rachel House for helping us through these years. We are so grateful for your help."  said grandmother wholeheartedly.

Even though my body felt like it was in a steam bath under the PPE, I felt a soothing relief in my heart. It is moments like these that made me realize how much Rachel House’s support is needed by children like Lisa, and their caregivers.

After the visit ended, I walked out from the house with lighter steps; all the worries I had before the visit now evaporated, leaving only an incomparable spark of happiness in my heart.

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In the middle of the hot sunny day, nurse Ribka walked hurriedly along a small alley in one of the most densely populated areas in Jakarta. Her medical bag slung over her shoulder packed with the tools she needs for her patient today, while on her hand is a bag filled with milk powder and other daily necessities for the same patient.

As she is walking, Ribka shares her worries about the patient she is visiting today. She hopes El* is in a good mood and willing for her to examine him. El is a 9-year old boy who has endured great trials at a tender age. He was diagnosed with leukemia in 2017 when he was just 7. A boy who used to be cheerful and full of smiles has been transformed by the illness to be an emotional, easy-to-anger, and closed-up boy. This is particularly challenging when interacting with members of the medical team.

The first time Ribka visited El, she was faced with a shocking bout of anger from El as soon as she entered the house. Eventually, Ribka had to leave to allow El’s mom to calm him down. It was not until Ribka was almost arriving back at the office that she received a call from El’s mom to let her know that it was safe for her to return.

El’s emotional outburst caught Ribka completely by surprise. The experience led Ribka to delve deeper into his past, to try to understand what he had been through. What she uncovered made her realize the immense suffering El had gone through that caused this deep suspicion and distrust towards the medical team.  When El first learned about his illness, he was too young to understand what would happen in the future. The people around him kept telling him that with the doctor's help and the battery of tests and sleuth of treatment, El would recover and that all will be well again. This is what El believed during his many years of treatment.

But the reality is far from that picture painted for him by the adults. Years have gone by, El is still sick and his condition continues to deteriorate. By the time he was referred to Rachel House, his prognosis was not good at all. He had a large festering wound on his left leg that caused intense pain whenever he tried to move the leg. The pain had so traumatized him that he would scream and shout when anyone made an attempt to get near it.  This also meant that he was unable to stand nor walk, too terrified by the pain.  For a boy who used to play football with his friends in the neighborhood, this was the last straw.

As Ribka learned about El’s journey, her heart went out to this little boy who is lashing out from pain and disappointment that he could not express. "In palliative care, we learn about total pain –  the pain that is experienced not only from the physical aspect, but also from the emotional, psychosocial, and spiritual aspects. El is experiencing all of this at such a tender age. His only way to express his pain is through this outburst" said Ribka.

Understanding El’s plight better, Ribka knew that in spite of all the challenges ahead, she would not allow herself to be discouraged. On subsequent visits, armed with the knowledge of El’s favorite food and activities, she would pack her bag with food, and crayons and coloring books for him. Ribka found out from El’s mother that besides football, his biggest love is to draw; El had even won a drawing competition.

As time went by, the ice of distrust slowly melts. Although sometimes El still gives her the cold shoulder, he has started to look at Ribka and keep eye contact with her. On a good day, he would even respond to her questions with a nod or a short answer. After the third visit, a wonderful breakthrough – he finally allowed Ribka to clean the wound on his leg and change the dressing for him! This is a very big step for their relationship, according to Ribka.

The journey with El has taught Ribka many valuable lessons. It has highlighted how the pandemic, with the need for masks and protective garments, has created a physical barrier between her and her patients. Previously, she would enter the home of her patients as part of the family, dressed in her normal attire. Now, in her protective garments, she is immediately identified by the children as a medical professional, there to cause them pain and distress.

However, with the pandemic limiting patients’ ability to access care in the hospitals, Ribka knows that her presence is needed even more now; playing her role as the patient advocate to ensure her patients get the medication and opioid they need, and as the educator to help patients’ parents administer the care the children need at home - just as she helped provide guidance to El’s mother in the cleaning and the dressing of the wound on his leg.

After two months of loving care and attention from Ribka, the wound on El’s leg is healing well, allowing El the confidence to straighten his leg. He is even attempting to stand up now.

“Thank you for not giving up on our son, and for trying to look through his anger,” El’s mother said with a sigh of relief and gratitude. “Your presence has been such a blessing for our family. Not only do we now have someone to call when El needs help, but you have also provided our family with a pillar to lean on – especially when we are at a loss on how we can support ourselves financially with all these expenses.” El’s mother added, referring to the financial difficulty the pandemic has brought upon the family after depleting all their resources to find a cure for El.

For Ribka, El has taught her an invaluable lesson – that in order to provide the best care for her patients, she must first try to understand them as a whole person, with their total pain. Seeing El, not just for the physical symptoms, but also his emotional pain from trauma, disappointment, and the loss of his childhood. "I may not be able to heal El’s trauma, but I can promise to be his friend and accompany him and his family through these challenging roads ahead," Ribka said with a quiet smile.

*name changed for privacy

Please support us in GlobalGiving’s Little by Little Campaign, by make your donation throughout September 14th - 18th, 2020. Your donation for up to $50 during that period will be matched by 50% by GlobalGiving, thereby bringing more smiles to our little patients with your generosity.

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At the tender age of 13, Aisyah* has experienced more trials than most children her age.

Aisyah knows she has an illness that makes her different from her friends. To begin with, she has to take medications every single day for the rest of her life. Aisyah is living with a severe immunosuppressed condition that makes her body susceptible to opportunistic infections. One such infection landed her in the hospital for almost 2 months, which brought her to Rachel House.

Since being admitted to Rachel House’s palliative care service, under the loving care of Nurse Dadan and Ibu Riswati, Rachel House’s community health worker (“cadre”),  Aisyah’s condition has greatly improved. A glimmer of happiness begins to show in her eyes.

As her health returns, Aisyah finds a safe haven in the mosque near her home. Here, she has the opportunity to study the Quran with a teacher and other students. While learning to read the Quran with her friends, Aisyah could feel the resemblance of a “normal life” – something she has rarely experienced. Aisyah who never dared to dream before, now for the first time has a dream that she would like to pursue. She wants to get a scholarship to Cairo. This dream makes her even more eager every time she visits the mosque.

Late last year, Aisyah started experiencing some discomfort in her left eye that affected her vision. In a matter of a few days, her right eye began to exhibit the same symptoms. And rapidly, the vision in both eyes was compromised. After several long and extensive medical investigations, Aisyah was finally diagnosed with Ocular Tuberculosis.

Little Aisyah has to swallow the bitter pill that she might not be able to get her vision back and that she must now learn to live with these new limitations. Despite this latest setback, her desire to continue to study the Quran has not decreased. Every day, Aisyah continues to visit the mosque to listen to the recitation of the Quran read by her friends. Aisyah even has a new dream of becoming a Hafiz (memorizer ofQuran.

Moved by her daughter’s undying love for the Quran, Aisyah’s mom shared her feelings with Ibu Ris. During that conversation, Ibu Ris found out about Aisyah’s wish to learn to read Braille, so that she can continue to recite the Quran with her teacher and her friends at the mosque.

Determined to find a way to help, Ibu Ris relayed Aisyah’s story to everyone at Rachel House. The “ball” was immediately picked up by Hapsari (also known as “Hapi”), Rachel House’s Resource Manager, who contacted her cousin, who is a member of a pesantren  (Islamic Boarding School).

When the Al Quran in Braille was delivered to Aisyah’s house, Ibu Ris was greeted with happy tears. “Thank you, Bu Ris, for always helping me,” said Aisyah, holding the Quran tightly to her chest.

Aisyah’s tears of joy bring happiness to us all. Not only to Ibu Ris, but to everyone at Rachel House who wants so much to help make her dream come true.

At Rachel House, we do not only provide medical care for our patients, but we also strive to help keep our patients’ dreams alive. We firmly believe that every child’s dream is worth fighting for because through these dreams, spirit, and hope can emerge.

* Name changed for privacy

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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
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