Commentary: What I learnt from watching a mum come to terms with her child's cancer diagnosis
Throughout Ethan's struggle with acute lymphoblastic leukaemia, his mother says: “He has taught me so much about what it means to be grateful — and to live.”
“When I received the blood test results, I knew something was wrong. My husband and I both didn’t want to believe it — but we knew it was true.”
Ethan is an Indonesian boy diagnosed with acute lymphoblastic leukaemia (ALL), a pediatric hematological malignancy where the bone marrow is unable to synthesise fully mature and functional white blood cells, increasing his risk of infections.
In addition to ALL, Ethan also has mild autism spectrum disorder, which causes him to fumble in social interactions and exhibit repetitive, stereotyped behaviour.
In one of our conversations regarding patient care and the medical humanities, my mentor, a professor in paediatric haemato-oncology, suggested I accompany him on a house visit to meet Ethan and his family.
“I want you to speak to Ethan’s parents,” he said, “and have the chance to appreciate what it means to care for a child with special needs.”
STRUGGLE TO COME TO TERMS
The first thing I realised when I stepped into the household was how everyone was masked. It felt unusual keeping my mask on in a home environment, but it soon made sense: It was to protect Ethan, who is immunocompromised.
We sat cross-legged on the floor of the sparsely furnished living room, where Ethan played with his Lego set. Hugging her knees to her chest, Ethan’s mum admitted how she and her husband had initially struggled to come to terms with their son’s diagnosis.
“We kept on hoping the doctors had made a mistake, that this was all just a very unfortunate and elaborate misunderstanding.”
Ethan’s pediatric doctor in Surabaya, Indonesia, recommended that his parents bring him abroad to seek further medical treatment.
“When we boarded the airplane, he was touching all the seats and remote controllers, thrilled by the prospect of flight.” Her voice trembled. “It didn’t dawn on him that we were going to Singapore only because he was sick.”
She had to be creative to help her young son understand his condition: “I told him he had ‘dragon blood’ in his body, and we needed to travel to Singapore to find the magic ‘potion’ to cure him.”
Ethan is a cheerful boy, she shared. He enjoys gaming on his devices, building Legos, and playing make-believe with his sister.
Yet there were also moments where he revealed that he knew more about his condition than he let on. “He prays that the ‘dragon blood’ won’t come back,” she confided. “He is anxious and scared as well.”
HEART AND HUMANNESS OF DOCTORING
The intimate nature of our conversation made this case history feel different than any I’d taken before, and I was filled with gratitude to Ethan’s mum for sharing about her rawest, most vulnerable moments so openly and honestly.
Here she was, the main caregiver of her two children, navigating an entirely new healthcare system in a foreign country with her husband as her only support, entrusted with helping her son battle a strange and complex disease.
This was the kind of patient interaction I had imagined when I signed up for medical school — the kind of experience that allowed me to understand the heart and humanness of doctoring.
“In a way, Ethan has been stronger than me,” she reflected. “He’s the one dealing with the pain, the needles, the side effects of the chemotherapy, but he never lets it get to him.
“He has taught me so much about what it means to be grateful — and to live.”
When I left, I gave Ethan’s mother a tight hug, the firmest embrace I’ve given anyone in a long time. We smiled at each other behind our masks, the tears that flowed freely during our conversation wiped dry.
In her, I saw the steel of a mother’s stubbornness, an insistence to push back against fate and the willingness to problem-solve. “I had to give my best shot for him to have his,” she declared.
In Ethan’s mum, I also saw tranquillity in the face of heartache, a quiet acceptance and grace to be at peace with all that has happened, no matter the circumstance. Throughout our conversation, there was no mention of unfairness or ill fortune, nor any despondence or discontent.
Instead, she only spoke of gratitude towards the medical team and my professor for taking care of Ethan, and extending their warmth to the whole family.
Her hope was radiant and luminous, her positivity palpable yet grounded. She reminded me how happiness, love, and joy were decisions you made consciously, over and over again. By turning her face towards the sunlight, she chose to let the shadows fall behind her.
A MATTER OF PERSPECTIVE
A diagnosis is not an ultimatum, but rather a challenge to reorientate the way one lives. With limitation also comes imagination: new ways of seeing and doing things, and new methods of thinking and perceiving. Resilience is a commitment to pilot your life instead of letting its turbulent waves bring you down.
Ethan’s story and his mother’s unwavering care for him made me reflect on how I’ve handled the various setbacks and disappointments in my own life.
Of course, it is futile to measure one set of experiences against another — many of us will never have to experience anything close to what Ethan’s mum has — but all of us will, at some point, encounter adversity in our lives.
In these instances, it is not what happens but rather our responses and reactions that make all the difference.
The tale Ethan’s mum told was that of a myth — of dragon blood, magic potions, and the quest to find a durable cure. Yet within that myth is a story of steadfast love, an anecdote of resolute faith and unencumbered hope.
ABOUT THE AUTHOR:
Faye Ng Yu Ci is a fifth-year student at the Yong Loo Lin School of Medicine, National University of Singapore.
All names and personal details have been changed to protect patient privacy and confidentiality.
