Photos Reveal a Day in the Life of a Boy With Stage 4 Brain Cancer
By Carl Samson
November 27, 2018
How does a child living with terminal cancer spend their day?
Meet Tom, a 4-year-old boy diagnosed with stage 4 brain cancer. He lives with his family in Vietnam.
His story recently became part of “24 Hours of Cancer Patients,” a collaborative project between photographer Phuoc Van Nguyen (also known as Kim Banh Troi Nuoc) and Salt Cancer Initiative (SCI).
Kim sat down with Tom’s mother, Minh Ha, who shared about their family’s struggle and her determination to “be with him till the end.”
“When Tom was 33 months old, I discovered that he had stage 4 brain cancer,” Ha told Kim. “The tumor was at the back of his neck and at the top of his spinal cord, which is the most dangerous position for a tumor.”
Despite the odds, Ha describes her son as a “resilient warrior,” has undergone two surgeries and 16 chemotherapy sessions.
“Many people told me, ‘Don’t even try starting the treatments for him, it’s only a waste of money and time. This cancer cannot be cured. Be smart!’” Ha recalled. “But as a parent, even if I have to sell everything to get the money for him to be treated, I’ll do it. I cannot stop fighting the battle with him and I will be there with him till the end.”
Tom’s parents have since made sure that he gets to do everything he wants in a day.
“Children are not like adults. Adults will try to finish doing everything they want if they know they are dying,” Ha said. “Whatever Tom wants to eat and likes to do, wherever he wants to go, we will do it today. Because tomorrow is not something I think about anymore.”
Ha shared that her husband needed “quite a long time” to accept the reality of his son’s condition. Together, they have managed to stay strong.
At times, Ha finds herself thinking that it is all a joke. She could only wish Tom peace when he is in pain.
“My son is probably the baby of heaven, he made a mistake so he was sentenced to the mundane world, but because the error is so small, the punishment only lasts for three, four, five days which mean 3, 4, 5 years down here… then he will go back up there,” Ha shared. “I once prayed Budha for Tom to have the strength to overcome sickness. But then when he’s in so much pain, I only wish him peace so that he would not have to bear any more pain.”
Throughout his treatment, Tom found a friend in Tim, who is diagnosed with stage 3 brain cancer.
“Both Tom and Tim do not know what death means. Sometimes Tom says, ‘I just want to stay with Mom, Dad and Grandmom,’ but little does he understand that dying means separation,” Ha said.
While Tom has undergone a slew of treatments, Ha is thankful for the fact that her son still remembers her.
“I feel fortunate because after all kinds of treatments and surgeries, he still remembers everything. While asleep or when unconscious, he still calls for me.”
For now, the family is determined to make Tom the happiest boy alive.
“Not sure if in another life, would he have a happier life? But in this life, Tom is everything we have. It is our fate to be together. We love Tom so much!”
Images via Kim Banh Troi Nuoc / Salt Cancer Initiative
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