Six-year-old Alisa* had been suffering from fever on and off, and her legs were hurting. As it became clear that over-the-counter medication was not helping, the girl’s mother, Wong*, knew she needed help.
When the pair arrived at a paediatrician’s office, the doctor looked over Alisa before telling the housewife that her daughter had to stay in hospital right away.
This was in March 2020 when Covid-19 first broke out in Hong Kong. Thus, as Alisa was admitted to a ward for further examination, Wong wasn’t allowed in.
“She had never stayed in any place without me,” the 38-year-old mum said. Through a monitor, she watched helplessly as Alisa lay in bed alone and cried.
“There was nothing I could do to help ... why all of a sudden was she so sick?”
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The girl was later diagnosed with acute lymphocytic leukaemia, a type of cancer that affects white blood cells and progresses aggressively, so it requires immediate and constant treatment in hospital.
Frequent infections, bone pain and chemotherapy treatments are just a fraction of what Alisa endured.
“Whatever treatment they did to her, she would cry instantly. But since she is a quiet child, you’d only see tears dripping down her face,” Wong shared.
Her daughter would ask, “Mummy, why do I have this sickness?” but Wong did not know the answer.
A month after the diagnosis, a social worker introduced Alisa to a child life specialist, trained to help the girl make sense of what was happening to her.
As Alisa went through treatments, Carmen Ma, a senior child life specialist at the Children’s Cancer Foundation, was there for her, helping the girl cope with the emotional, mental and social challenges of cancer.
Wong witnessed the effects of Ma’s intervention. “[Alisa] used to look depressed. You would talk to her – no response,” she shared. “[After Ma came along] she became happier and laughed more. She started to tell me more about what she wants and thinks.”
How specialists help young patients cope
When Ma first arrived at Wong’s home, she immediately noticed how quiet Alisa was: “She does not speak to you unless you are very close to her.”
Nevertheless, the girl quickly opened up. “[Her mum] said she never saw Alisa chatting so much with a stranger in such a short time before,” Ma said, smiling.
In that one-hour home visit, Ma, who has been a certified child life specialist for six years, brought books and toys that helped Alisa learn about her disease and understand why she was in pain.
“The biggest reason she [Alisa] wouldn’t open up to people was she felt like no one could understand her,” Ma explained.
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This is where the specialist’s expertise is useful. The trained professionals use age-appropriate methods to help children with serious illnesses or injuries by preparing them for treatment, promoting their social and mental development, and supporting their families.
For instance, Ma brought Alisa a doll with a long flexible tube in its chest, similar to what is used in chemotherapy treatments.
“As she plays with the doll, she feels familiar with it as it looks like her. She can perform all the treatments on the doll as the doctors have done to her,” the specialist said, explaining that these methods aimed to alleviate young patients’ fear of their diseases.
Ma also provided Alisa with companionship. Apart from the home visits, the specialist would have online meetings with Alisa when she was in hospital but visitors were not allowed due to the pandemic.
“Kids need more than medicine to get well,” said Ma. “Health is a state of complete physical, mental and social well-being, not merely the absence of disease.”
Now, nine-year-old Alisa is recovering from her leukaemia. Though she has finished her treatment and resumed school, Ma still checks in with her and her family to make sure they are adjusting to normal life.
Why child life services are key for treatment
Currently, Hong Kong only has about 10 certified child life specialists, according to Ma.
In 2017, the Children’s Cancer Foundation became the first NGO qualified to provide internship supervision to train the next generation of child life specialists.
“We believe hospital play is a great tool to address the psychological needs of sick children, something they need to march through their patient journey with a better mentality,” said Vera Chin, the charity’s CEO.
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Dr Li Chi-kong, an honorary consultant at Hong Kong Children’s Hospital, added that this service also helped medical staff connect with patients’ families.
“They help to explain and convey messages from doctors in a way that parents can understand,” said the paediatric professor at the Chinese University of Hong Kong.
“When the parents are more confident about the treatment process and their kids are more cooperative during treatment, their acceptance of treatment will certainly improve, the procedure can be performed more smoothly, and the quality of the end result will be much better.”
*Full name withheld at interviewee’s request.
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