Husna is just an ordinary little girl – a playful and lovely child taking advantage of the joyful lens of the world afforded by her youth. When she was diagnosed with a brain tumor in early 2019, she was only 9 years old and at that time in her second semester of third grade. The tumor quickly progressed into a Stage 4 brain cancer.
When I visited last week with Rachel House medical team, with sembako and essentials in our hands, I noticed Husna was confined to her bed and unable to move most of her body. On the walls by her bed, fairy lights gleam onto polaroid photographs of her memories, with scribbles and drawings written in pen underneath each photograph.
The ambiance of the small house was quiet, with the occasional purr from the many cats the family has, some of which have been named by Husna herself. Her mother walked me through the severity of her condition while I was there, recalling how she could still walk and scoot around in December last year.
In fact, when she was first admitted to Rachel House on 3rd of January 2022 for palliative care assistance, Husna was still able to eat and drink normally. Now, she eats and drinks through the nasogastric feeding tube. What was once a chatty and outgoing girl is slowly succumbing to her illness, eventually losing her voice around 2 months ago.
She is now blind in her left eye, and her right arm and legs are paralyzed and unable to move, but she can still make small movements with her other hand and toes. She waved at me and the crew when we first arrived, and her frail hand shook my hand and gave me a thumbs up. Her diagnosis truly unveiled her resilience and strength. After some 3 years of battling cancer, she is still pushing through and finding solace in the company of her family.
After her parents put a temporary hold on their professional careers in order to take care of their daughter, they started to sell pre-cooked meals to support Husna’s medical bills, naming their small business “Husna Frozen Food”. This endeavor went on for some time but isn’t up to much now.
Regardless, her extended family would routinely visit and hold large get-togethers to cheer her up, even showing up on phone screens through a video call to catch up with her digitally. Her mother told us that being around people is what makes her truly happy.
Her condition had seemingly improved when we went to visit and she was even able to blurt out a short “Iya“, to my surprise as well as that of the Rachel House medical team. Her routine assessment went smoothly as the Rachel House nurse, Dadan, checked on her condition and found that she had stopped coughing.
After we had said our goodbyes, on the hour-long journey home, I was informed that her condition was incurable. This being my first patient visit at Rachel House as a writer, it was then that I fully realized the extent of what the organisation’s slogan actually means.
“We are not here to add days to the children’s lives, but to add life to their remaining days.”
That was the small text underneath my ID card. I read it when I first got the ID card and didn’t think much of it, but it finally clicked then and there. The struggles of children like Husna are barely represented in the media, so I figured that with a few words I could help in some way.
The donation of supplies and necessities are to help get Husna and her family back on their feet, but what I really hope for is a feeling of peace and tranquility in what may be her last days.
Even though we were only there for a little over an hour and a half to check on her condition and offer some company, this young girl’s infectious joy and enthusiasm were unmistakable as soon as you walked into the room. Her perseverance throughout this whole ordeal is a breathtaking demonstration of the undefeatable human spirit
*This story was written in October 2022, and in November 15th, 2022, Husna passed away peacefully in the comfort of her home and surrounded by her beloved family.
Click here for the Bahasa version.