As a parent, you never imagine hearing the words “your child has cancer.” But for some families, this nightmare becomes a reality. When that cancer turns out to be rare, the journey becomes even more challenging. The story of Viet Tai, a young boy from Vietnam who battled a rare cancer, serves as a beacon of hope for parents facing similar struggles.
What Is Rare Cancer? Why Does It Feel So Personal?
When we think about childhood illnesses, cancer is one of the most terrifying words we can hear. It’s natural to feel that tug of fear, especially when you hear the term “rare cancer.”
These cancers are not only difficult to diagnose, but they often come with fewer treatment options, creating an uphill battle for both children and their parents. For Singaporean parents, this struggle hits hard, knowing that their child may face treatments that push the limits of what medicine can currently offer.
But rare cancer doesn’t just affect the body. It tests the emotional and mental strength of the entire family.
The Shock of a Rare Cancer Diagnosis
When your child complains of pain, you might brush it off as growing pains or a minor injury. However, sometimes these seemingly innocuous symptoms can be the first sign of something far more serious. In Viet Tai’s case, what started as a sharp pain in his little finger quickly spread throughout his body.
Source: Viet Tai’s family via CNA
Initially misdiagnosed with arthritis, Viet Tai’s condition worsened despite treatment. It wasn’t until further tests were conducted that doctors discovered the devastating truth — he had acute lymphoblastic leukaemia, a rare cancer that would change his life forever.
As a parent, receiving such news can be earth-shattering. You might feel lost, scared, and overwhelmed. Remember, it’s okay to feel these emotions. The journey ahead will be challenging, but you’re not alone.
Navigating Treatment Options for Rare Cancer
When faced with a rare cancer diagnosis, standard treatments may not always be effective. Viet Tai’s parents learned this harsh reality when chemotherapy failed to slow down the disease.
In such situations, you might find yourself at a crossroads, desperately searching for alternatives. For Viet Tai’s family, hope came in the form of an experimental treatment in Singapore. They made the difficult decision to sell their house and assets to give their son a fighting chance.
While not every family may have this option, it’s crucial to explore all available avenues and consult with specialists who have experience with rare cancers.
The Emotional Rollercoaster of Rare Cancer Treatment
Watching your child undergo gruelling treatments can be heart-wrenching. Viet Tai’s mother, Madam Nguyen Thi Kieu Anh, described feeling “heartbroken” and “useless” as she watched her son suffer through chemotherapy. These feelings are common and valid.
Moreover, the uncertainty of experimental treatments can add another layer of stress. Viet Tai became the first patient in the world to undergo a new cell therapy at the National University Hospital (NUH) in Singapore.
The anxiety of not knowing the outcome can be overwhelming, but it’s important to hold onto hope.
Coping with Isolation During Rare Cancer Treatment
One of the most challenging aspects of rare cancer treatment can be isolation. Viet Tai spent a month in a sterile, isolated room as part of his treatment.
Source: CNA/Ili Nadhirah Mansor
For a child, this separation from family and friends can be particularly difficult. As a parent, you might feel helpless watching your child go through this alone. However, your presence, even from a distance, can provide immense comfort. Stay connected through whatever means possible — video calls, letters, or even just your voice through a phone.
The Financial Burden of Rare Cancer Treatment
The cost of treating a rare cancer can be astronomical, especially when seeking specialized care abroad. Viet Tai’s family faced this challenge head-on, with bills quickly mounting during his stay in Singapore.
However, their story also highlights the power of community support. Through a crowdfunding campaign, strangers rallied together to raise over S$115,000 for Viet Tai’s treatment.
While not every family may experience such generosity, it’s worth exploring all financial assistance options available, including charities, grants, and crowdfunding platforms.
Celebrating Milestones in the Rare Cancer Journey
Every step forward in your child’s rare cancer journey is a victory worth celebrating. For Viet Tai, going from the brink of death to remission in just a month was a monumental achievement.
These milestones, big or small, provide much-needed hope and motivation to keep fighting. Today, five years after his treatment, Viet Tai remains cancer-free. He’s back to enjoying activities he loves, like cycling and playing basketball.
These moments of normalcy are precious reminders of why the fight against rare cancer is so important.
Life After Rare Cancer
Surviving a rare cancer can profoundly change a child’s outlook on life. Viet Tai emerged from his ordeal with a newfound determination. He now views any difficulty as minor compared to his battle with cancer.
As a parent, witnessing this transformation can be both heartwarming and inspiring. Your child’s resilience in the face of such adversity is a testament to their strength and your unwavering support.
Supporting Your Child’s Dreams
Source: Viet Tai’s family via CNA
After overcoming a rare cancer, your child may develop new dreams and aspirations. Viet Tai, now 15, dreams of starting his own fashion brand. Encouraging these ambitions, no matter how big or small, is crucial in helping your child move forward.
Remember, your child is more than their cancer diagnosis. They have a future filled with possibilities, and your role is to support them in pursuing their passions.
The Importance of Follow-up Care for Rare Cancer Survivors
While celebrating your child’s recovery from rare cancer is important, ongoing medical care remains crucial. Regular check-ups and monitoring can help catch any potential issues early. Stay vigilant and maintain open communication with your child’s medical team.
Navigating a rare cancer diagnosis with your child is an incredibly challenging journey. However, stories like Viet Tai’s remind us that there is hope, even in the darkest of times. With love, support, and access to innovative treatments, children can overcome rare cancers and go on to live fulfilling lives.
As a parent, your strength and advocacy play a crucial role in this journey. Remember, you’re not alone in this fight against rare cancer.
The Power of Resilience
After months of gruelling treatments and near-death experiences, 15-year-old Viet Tai is now living proof that there is life after rare cancer. He dreams of starting his own fashion brand and continues to live a normal teenage life—something that seemed impossible just five years ago. His story is a testament to the resilience of children and the unbreakable bond between parents and their kids.
As Singaporean parents, it’s important to remember that even when faced with the hardest of challenges, there is always a way forward. Whether it’s through the latest medical advancements or the collective power of community support, you are never without options.
And while rare cancer can seem like an unbeatable foe, it is not without hope. As long as you keep fighting, there’s always a chance for a brighter tomorrow.
ALSO READ
Breast Cancer Awareness Month 2024: Key Events in Singapore
How Family History Affects Your Breast Cancer Risk
This mum of 4 is a caregiver to her cancer-stricken grandma and dad with dementia
