(by Yolanda Tasya Amalia – Communications and Fundraising Officer)
It is perhaps a natural refrain in children to be reluctant to share their mother’s affection and attention with another. Yet, in the case of Syafa and her cousin, I am being shown a beautiful and awe-inspiring expression of shared love.
Syafa is a bright-eyed 5-year-old girl who has been battling leukemia since the tender age of 2. However, this cruel reality of the diagnosis is not the only hardship the little girl has had to endure. Shortly before the diagnosis, Syafa’s parents had decided to divorce. Then tragically, when Syafa was 3 years old, her mother passed away from tuberculosis. The little girl who has experienced so much loss in her short life is now living with her father and her aunt’s family.
In her journey with cancer, Syafa’s body did not respond well to the chemotherapy treatment. She was terribly sick after each treatment, and at times, her father was not certain if she would live through those post-treatment nightmares. This prompted him to make the difficult decision to discontinue the treatment, even when he knows that this decision carries with it the huge uncertainties about Syafa’s future.
Syafa was referred to Rachel House by her attending physician when she was struggling with post-chemotherapy challenges. She was weak from diarrhea, nausea and stomach cramps. The chemotherapy treatment had left her body frail, and her full head of hair was not bald.
Yet, despite these challenges, Syafa appeared much like any other children her age when I first met her. As Nurse Dadan, Nurse Tyas, and I arrived at their home, navigating through narrow and dimly lit alleyways, we were greeted by two little girls playing together in the living room. One of them, whom I believed to be Syafa, welcomed us with bright eyes and a shy, endearing smile. With her sweet voice, she responded to the nurses’ questions about her day and how she was feeling.
Syafa’s petite frame and pale complexion betrayed her true age, yet she seemed well that day, aside from the lingering redness in her nose from a recent nosebleed. She chartered away, especially to the little girl beside her, who I later learned was Jil, or “Mbak Jil” as Syafa fondly called her.
Prior to our visit, the Nurses had told me about the beautiful friendship between Jil and Syafa. Jil is the daughter of Syafa’s aunt, who is the primary caregiver for Syafa now. The girls’ close bonds are perhaps due to their proximity in age. While this feels natural, it is profoundly significant that Jil does not seem to have a single thread of jealousy or anger towards Syafa, even as her mother lavishes all the attention on her young cousin. The girls’ beautiful closeness, and Jil’s generosity of love defy all the textbook warnings of a jealous sibling.
“Syafa is now constantly snacking. I am sure these oranges will disappear quickly,” Syafa’s aunt said as she peeled a mandarin orange she had just received from Rachel House’s nurses. Drawn by the scent of the freshly peeled orange, Syafa shuffled closer as the oversized white flower pendant necklace around her neck swung wildly.
During the physical examination, Syafa eagerly handed Jil a handful of the tools the Nurses were using, like a small flashlight, a piece of colorful paper, and a pulse oximeter. Not wanting Jil to be left out, Syafa begged the nurse to examine her cousin also. And when she saw Nurse Tyas give Jil a colorful pen and paper, she exclaimed not wanting to be left out, “I want some too!”
I have been to numerous home visits with Rachel House nurses. However, our visit to Syafa was particularly lively and cheerful thanks to the antics of these two little cousins, taking turns requesting examinations, sharing drawings on paper, competing for snacks, and laughing while watching cartoons on TV.
Anyone could see how Jil genuinely cherishes and loves Syafa. It was evident in how the little girl would yield when Syafa snatched the drawing paper or the wafer biscuits from her hands, how she smiled every time she responded to Syafa’s chatter, and how she willingly shared hugs in her mother’s arms alongside Syafa.
Jil, though still a child herself, displayed a remarkable level of understanding and compassion beyond her years.
I believe that the presence and affection from her family is what has enabled Syafa to endure the arduous cancer journey. While our nurses manage the symptoms and the side effects that arise from the chemotherapy treatment and the progression of the cancer, I believe their presence means much more to this family than the mere medical assistance.
The care and support provided by Rachel House nurses alleviate the family’s worries, allowing them to feel safe in the knowledge that they are never alone in this challenging road of caring for a child living with cancer. With the nurses’ support, the family can focus on spending precious time together, making cherished memories in their little family unit; importantly, allowing Syafa to enjoy her days with joy and happiness like any children her age.
I truly hope and believe that this is something they will be able to successfully accomplish. This journey, where Syafa takes the center stage, is a testament to her resilience in the face of adversity. She refuses to let her circumstances define her, embracing each day with the innocence and joy of a child.
All thanks to the loving support and companionship of Jil, the selfless embrace of her Aunt, and, of course, the unwavering love of her Father, who greets her with open arms upon returning from work.
It was time for our departure when the tired-looking man arrived home. But he was incredibly gracious towards us, and I vividly recall the genuine sparkle in his eyes and the hope-filled warmth in his embrace as he held his precious little girl close.
With heartfelt sincerity, he expressed his gratitude, “Truly, I cannot repay them enough! Only Allah can repay the kindness of the Rachel House nurses. I simply cannot imagine where we would be without them; they have become like family to me …”
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For some, the love and attention of the family may seem like a natural part of life. Yet, for others, the gestures and expressions of care and affection are the very essence that fuels their spirit – the unwavering presence during the most challenging of times. In the embrace of our family we find comfort and, importantly, the strength to endure and overcome life’s trials, safe in the knowledge that we are never alone.
And for Syafa and her loving cousin, I truly hope that their intertwined heartstrings will continue to serve as a source of strength and companionship, guiding them through every twist and turn in life. In the beautiful bond they share, may they find solace and strength, drawing comfort from each other’s unwavering support and love.
*name change due to privacy