Upon learning of his daughter’s rare neuroblastic tumor diagnosis, Carson learned to cherish each moment and determined to create joyful experiences for their daughter with his wife throughout the treatment. To this end, they have relocated to Ronald McDonald House to provide their daughter with a nurturing environment.
Despite a rare stage 4 neuroblast tumor, 6-year-old Mavis retained her lively, active spirit. Two years ago, her father Carson rushed her to the ER when she suddenly collapsed. Doctors at Hong Kong Children’s Hospital later confirmed her diagnosis, following a history of unexplained abdominal and foot pain.
“Doctors say it’s hard to detect the disease early, and it’s usually stage 4 by the time it’s diagnosed.” Carson said. After being admitted to the hospital, Mavis underwent major surgery to remove the cancer cells that were pressing the nerve to relieve her leg pain, followed by a series of chemotherapy and radiotherapy.
It was the height of the epidemic, and Carson, vaccinated for work, had to accompany Mavis to the hospital daily for her various treatments. He even quitted his job to become her full-time caregiver. “Mavis usually prefers her mother, so she was a bit uncomfortable with me at first. But she’s very sensible and knows her mother will visit after getting vaccinated.”
Neuroblastoma is a rare disease, with limited medical data available. Yet that did not deter Carson and his wife. Driven to treat their daughter, they relentlessly sought insight from other affected families, hoping to better navigate this challenge.
Sadly, the respite was short-lived. While the condition of Mavis had initially improved, last year brought the devastating news of a relapse, crushing Carson and his wife. “Mavis has always been a cheerful, vibrant girl, never allowing her illness to dampen her spirit. Her unwavering courage to undergo treatment has been the greatest comfort to us,” Carson shared. “Even knowing her relapse must have been heartbreaking, we refused to show our sorrow in front of her. Fortunately, my wife and I have steadfastly supported each other, maintaining a positive outlook even in our darkest moments.”
Mavis, with her compromised immunity due to the illness, is about to begin a new round of treatment for a haploidentical transplant. To prepare for this crucial procedure, she must limit her exposure and remain at home as much as possible, shielding herself from potential infections.
“Seeing her confined to the house day after day, unable to venture out, the vibrant smile we once knew was faded,” Carson recalled. Fortunately, on the recommendation of a medical social worker, they have relocated to the more hygienic Ronald McDonald House in Kwun Tong. “Here, Mavis is surrounded by other families in similar situations, allowing her to find companionship among the children. And the spacious environment gives her more space to move.” Carson shared with relief.
The House provides a variety of activities, such as music, English phonics, and handicraft classes, to help the children continue learning and develop social skills during their stay. To support the parents, the House also regularly organizes workshops, like massage sessions, allowing them to find physical and mental rejuvenation while caring for their children.
Carson and his family have been staying at the House for over two months and have actively participated in nearly all the activities. Carson enthusiastically shared that his daughter wakes up each morning excited to play with the other children. She eagerly participates in the diverse array of interest classes and stays active and engaged throughout the day.
Despite the challenges of fully treating their daughter’s condition, Carson and his wife have remained steadfast in their hope, believing that advancements in medical technology could bring about a miracle. This perspective has helped them appreciate the importance of living in the present moment.
“In this nurturing and supportive environment, we’ve begun to see the light of hope,” Carson shared. “After her illness, Mavis was very afraid of the looks from others, perhaps because she had lost her hair. However, once she has moved into this caring place, everyone treated her just like any other child, which allowed her to regain self-confidence, and her innocent, cheerful smile finally reappeared. At the same time, I could also sense my wife becoming more relaxed.” He expressed deep comfort in knowing that as long as their daughter is healthy and happy, all will be well.