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
Oct 6, 2016

NINETY-NINE

A Rachel House nurse comforting a patient's mother
A Rachel House nurse comforting a patient's mother

Grace, a young doctor volunteering with Rachel House, reflects on her relationship with one of our young patients living with cancer, and how this patient has touched her soul. It’s a story about empathy, sympathy, friendship and loss. About plans, wishes and regrets. And about not having regrets. It’s about gratefulness. And it’s about the role and value of palliative care. But most of all, it’s the story about the courage, spirit and zest for life of an amazing 14-year old girl, who touched the lives of everyone around her.

I am a great fan of routine. I get absolutely distressed when my well-laid plans are interrupted.  This is especially so when it affects my mornings, a time usually reserved for myself. My routine typically starts with prayers and meditation, followed by breakfast, during which I scan through the latest news. On 2 September 2016, though, things were different. My morning routine was brutally interrupted by sad news of a loss. “Mariam has passed away at 02:30 hours today. May her family be given strength, courage, and patience.”

I recall running to my father’s room crying out, “Mariam has passed away…” and collapsing beside him crying my heart out. There were no words. Thoughts of her laughter passed through my mind, but I could only cry. I so much wanted to believe that she had not left us. Overwhelming pain enveloped my heart, and it was as if a thick cloud of sadness was hanging over my head.

I called Mariam’s mother, Ibu Lidia. I know that as a medical professional, I have been taught to provide support to families, but I was unable do that for her right then. Instead, we cried together. That day, my heart was shattered.

I could not even be angry about all the well-laid plans for the day that were going to be aborted. In fact, fully consciously and willingly, I abandoned all my routines. 

But I am very upset! She left before I could fulfil her last request to me.
I am upset because she left before I could fulfil my promise to visit her.
I am upset. Not with Mariam, but with myself for delaying the plans to see her with “later, later”.
I thought we had more time. How could I have forgotten that she was someone whose every day is highly uncertain, and whose tomorrow might never come?

As medical doctors, we are taught empathy, which has a lower degree of relating to others compared to sympathy. In essence, we are taught to feel, but not to be affected.

So, it could be said that, on that day, I failed. I had in fact entered the territory of “sympathy” and let my heart be involved. But is that not reasonable given I regarded her not just as a patient? Because she was more than a patient to me. She was truly amazing, and she was my friend.

I still remember when we first met.

Mariam was a 14-year-old girl diagnosed with leukemia. When we first met, she had just regained her hearing after she had lost it for some time. She had asked the nurses from Rachel House if they could bring along some gospel music for her. When we played those songs, she sang along quietly, with a shy smile on her face.

The more we interacted, the more I realised what a special girl she was. She was bright and chirpy, and she loved everything that tasted and smelled of Korea. We traded and shared many stories – from remembering her favourite Running Man series, and the Korean dramas that we had seen, to the Korean artists we loved, and even the Song triplets that we adored. We enjoyed eating together at her home. Japanese cuisine or Korean cuisine, which she loved.

She was a young girl who loved to laugh, and knew a myriad of funny riddles she would quiz me with. Isn’t that amazing? Even in the midst of her troubles, she still loved making people laugh.

She was a girl with an amazing heart. Once, when we took her to a mall, she asked us to take her to the bookstore, Gramedia. We found this a little strange and wondered if she wanted to try to read, which seemed impossible to us at the time, because she had lost her vision a few months earlier. But it turned out that she wanted to buy a book at Gramedia, not for herself, but for her sister. Isn’t that incredible? She had to face many limitations, but still remembered to give.

She was also mature beyond her age. It would have been totally reasonable for her to blame everyone, including God, for her condition. But I learned from her that gratefulness should not be only for when we are happy. In the middle of all her suffering, Mariam remained strong in her faith. She was truly mature for a girl her age.

I remember telling her about the internship program that, as a doctor, I had to go through, while what I wanted is to truly race ahead chasing my dreams. I thought she would say, “Just go with the flow”, but instead she told me, “Pursue what you love.” Such courage, unlike me.

She really was a strong girl with great courage. I cannot imagine what it must have felt like going through all the therapies and treatments for her cancer, but she appeared stoic and patient throughout. There were just a few occasions when she’d moan, but I think that was totally reasonable. Even adults would complain, so you would just expect a young one to do that so much more. Incredibly, Mariam would always bounce back and be her chirpy self again. I still continue to wonder, what the source of her strength and patience was.

The last time we met, her smile was brighter than ever. A big smile despite the fact that her condition was deteriorating, and that she had begun to need morphine to help alleviate the pain she was beginning to experience.

Even though our encounter was brief, she has left me with many wonderful memories.  That explains the huge sense of loss I felt when I received the news of her death. A loss that, sadly, was accompanied by many regrets – there were so many things that I would have wanted to do or share with her. While strewing flowers on her grave, I whispered in my heart, “I wanted to tell you about the new Korean drama… I didn't have time to tell you that I will be sent to Sukabumi for my internship… I was about to bring you a Bulgogi meal… but you are gone…"

My biggest regret would be that I did not manage to fulfil her wish to share her journey at my church! That was her biggest and most important wish. Why are there always regrets at the end?

When I shared my regrets with my father, he comforted me saying “At least, you and Rachel House’s nurses have brought joy and happiness to her in her final days.”

I’m not sure why, but hearing those words helped calm my anguish and heal my heart.

I feel grateful now. Grateful that my decision to volunteer with Rachel House has turned out to be the right one. I am grateful for all that I have learned there about the importance of palliative care. And I am grateful for having been part of the palliative care team at Rachel House which has provided care for these children. I am grateful for having been introduced to Mariam by the nurses at Rachel House. I am grateful that, at Rachel House, I was shown that my role as a doctor is not only to take care of the disease, but that it’s important to learn to “communicate heart-to-heart” with “the diseased” – the person living with the disease. I am grateful that I was taught not only to medicate, but to understand. I am grateful that, although there were many things that I did not get to complete with Mariam, I realise that through palliative care, we have managed to do a lot for her. Without palliative care, a lot more of Mariam’s dreams and wishes would have remained unfulfilled, there would be many more regrets, and it would be highly likely that Mariam would have died in a sad and painful situation.

With palliative care, we have provided Mariam with something that is infinitely more important for her. We did not only take care of her pain and symptoms, but we also put smiles on her face. We did not only fuel her courage, we also nourished her heart. We supported her during the most challenging moments of her journey, and we helped make some of her dreams come true.

Many people assume that palliative care is not that important. “Not now,” they'd say, “let’s only consider it when curative treatment is no longer viable.” Sadly, this means that many patients who need palliative care depart before having had the chance to experience the benefits of this service. In the eyes of many, including  medical professionals today, the value of palliative care is perhaps only “one”, with curative treatment valued far higher, putting a maximum value of “ninety-nine” on it if they can.

There is no doubt whatsoever that curative treatment plays an important role for patients living with life-limiting or life-threatening illnesses. But we should not forget that “99” is not complete or whole. 

We often forget that, even if palliative care carries the value of only “1”, it has the potential to complete the “99”. We forget that without the “1”, there will be no “100”. 

And yet, every patient deserves to have the best service we can provide, one that is holistic (physical, emotional, social and spiritual), to the very end of his or her life. In other words, every patient deserves a “100”, not just “99”.
And if every patient is treated in this holistic and complete way, then there will be no regrets, or the feeling that we have not given them our best. 

I feel this is the case with Mariam. She deserved to receive a full and complete “100”, and we wholeheartedly believe and know that she received this from the palliative care team at Rachel House before she left us.

And because of this, there should be no regrets, for we know deep in our hearts that we have given our very best to her.

Farewell, Mariam. Thank you for all the lessons you have given me.

 “We are not here to add days to the children’s lives, but to add life to their remaining days.” (Rachel House)

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,145 raised of $120,000 goal
 
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