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The recent brouhaha over whether some teenage girls should wear a wig in school after shaving their heads for a cancer cause would be worth it if it drew attention to the real heroes - child cancer patients.
SINGAPORE - Maeve Low and her parents would do "leopard crawls" into the hospital ward for treatments for her cancer. This was to spring a surprise on the "bad guys", which were the cancerous cells.
Her mother, freelance drama teacher Joanne Poon, had created a story to help Maeve, then 31/2, better understand her condition and what she needed to do in order to get better.
Ms Poon, 39, says: "We wanted to be in charge of the process. We didn't want to passively wait for things to happen." Her way was to tell a story to Maeve, who was diagnosed with stage 2 Burkitt's lymphoma, an aggressive abdominal tumour.
The story was turned into a book this year, published free of charge by Landmark Books and given free to every child cancer patient.
In October, Maeve, now six, will act in a play based on the book to raise awareness about child cancer and to raise funds for the Children's Cancer Foundation and Viva Foundation for Children with Cancer.
Ms Poon says: "I explained to Maeve that lymphoma was a poisonous stone in her stomach. The chemotherapy drugs were the good soldiers to fight the bad guys.
"Sometimes the battles are fierce - the side effects - so that's why she gets fevers and diarrhoea, and vomits.
"Every parent knows his child best. Since Maeve loves stories and books, and I was always making up stories anyway, I wrote out the story on foolscap paper in the hospital and she drew the pictures."
To "prepare for war and look very fierce", Maeve, Ms Poon and her husband Bernard Low shaved their heads in anticipation of Maeve losing her hair during chemotherapy.
That took place around July 2010, as soon as Maeve was diagnosed and about to start an intensive 41/2-month chemotherapy cycle. Before Maeve became the heroine in the story her mother spun for her, it was a different picture.
Ms Poon recalls: "Maeve didn't know that X-rays and scans don't hurt. She freaked out and screamed initially. It was so devastating."
Later on, she and Mr Low, 41, who teaches economics at Anglo-Chinese School (Independent), also put up a rewards chart in Maeve's single-room ward at the National University Hospital.
For instance, for every five finger pricks, she got an individually wrapped sweet. After fasting and a painful jab from a lumbar puncture, the prize was a book.
"It was something for her to work towards," says MsPoon.
They brought her favourite pillows, bedsheets and even a potty. At the end of each week's stay for her chemotherapy cycles, "we had two suitcases of these items to lug home", says Mr Low, who was always with his wife and daughter at the hospital.
Taking charge of the situation also meant unabashedly asking for help whenever they needed it, says MsPoon, a former drama teacher at Victoria Junior College. Her sister-in-law and uncle were her "milk maids" for about four months, collecting her expressed milk to deliver to her apartment in Simei. She was nursing her four-month-old baby, Paige, at the time.
Ms Poon also "shamelessly" broadcast her needs on maeviebaby.blogspot.sg.
Her former students from the junior college, church mates and close friends pitched in when they could, with some even taking leave to babysit Maeve at the hospital.
Ms Poon used those times, such as the mornings they visited, to brush her teeth, wash up and grab a bite.
How it began
Stomach surgery to "pull the intestines apart"
Maeve's illness first surfaced as stomachaches around the time Paige was born. So her parents thought that it was either constipation or she was seeking attention.
To diagnose the problem, she twice had to undergo an air enema, a procedure to push out her intestines that had folded inwards into one another.
The girl felt "betrayed" because her father and some male nurses had to hold her down during the procedure.
Maeve recalls her feelings at the end of the ordeal: "I kicked daddy because he didn't protect me from the horrible people who were doing this to me."
Worse to come was the stomach surgery to pull the intestines apart after the enemas failed. Doctors found a tumour and a biopsy confirmed the cancer.
Ms Poon says: "Nobody taught me what to say, and after she awoke from her stomach surgery, with tubes all over, she lost faith in us. She didn't speak to us for days."
The tubes were to deliver an arsenal of drugs pumped intravenously into her hands and a portacath, a medical device inserted under the skin, on her right chest.
Ms Poon adds: "It was like sending many machine guns simultaneously."
Going back to normal
Protected by angels
Maeve's last check-up was in November 2010, and life went back to normal the following month.
She needs to see her oncologist only once a year and does not need any medication, says her happy mum.
Mr Low says insurance covered the total cost of about $100,000 for the surgery and treatment.
Of the treatment and procedures Maeve underwent, she was most afraid of the painful injections to the lumbar.
"That required a huge needle, the size of an epidural needle, that goes into the spine to deliver drugs to the brain and wipe out any cancer cells there," says Ms Poon.
But Maeve was comforted after coming out of sedation all seven times from the procedure.
She says: "I saw angels. One was beside mummy, two at the top of my bed and, at my feet, another two. They had huge wings. "I smiled at them and they smiled back."
Her mother says: "She was so annoyed I didn't see them. When she was coming out of sedation, she said, 'They are just there. How can you not see them?' "
When a child has cancer
When a child has cancer
The National University Hospital says it has seen an average of 115 new childhood cancer cases each year for the past three years among children up to 16 years old.
KK Women's and Children's Hospital says that while the incidence of childhood cancers has remained constant, the number of patients it sees every year has "grown because of the growth in population".
Its Associate Professor Tan Ah Moy, senior consultant, haematology and oncology service, notes that KKH handles about 120 newly diagnosed childhood cancer cases each year.
The three most common childhood cancers are leukaemia, brain tumour and lymphoma, both hospitals say.
How aggressive can treatments be, especially if a child is young?
Associate Professor Quah Thuan Chong, head and senior consultant of the paediatric haematologyoncology division at the National University Hospital, says "young children can tolerate chemotherapy better than older children and adults".
He says: "Young bodies are more resilient and they tolerate drug side effects better and recover better and faster. This is a general property of the human body. Just like new cars break down much less than old cars."
But he adds that chemotherapy "may affect fertility and also may cause secondary cancers", depending on the drugs used.
As for radiotherapy, this has "more side effects on young children compared to older ones". That is a reason why it is given "very sparingly" to children.
Prof Quah says: "Radiotherapy affects the growth of the organs that are in the field of radiation. For example, if radiation is given to the brain, it may cause mental retardation, apart from a risk of secondary cancers."
Psychological hurdles
Another big challenge is the psychological one. Prof Quah says: "The toughest time is the initial few days or weeks."
Regardless, parents must be "psychologically tough and resilient".
"Don't dwell on potential problems such as side effects, chances of relapse and so on. Focus on what can be done," he says.
Ms Jessie Ooh, lead psychologist of the department of paediatrics at NUH, says: "The way a child usually responds to the news of a cancer diagnosis often reflects that of his parents' response."
Adult caregivers can soothe a child's nerves by explaining to him the "routine for the day or week". Ms Ooh adds: "Holding on to routines gives the child comfort and bridges the 'new world' from the old, encouraging security."
Ms Serene Hong, KKH's senior medical social worker, notes that "parents may get so overwhelmed by their own emotions that they... have difficulties being objective about the treatment required".
But it is important that parents "remember that the child undergoing the suffering is the true hero".
eveyap@sph.com.sg
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