On a recent Tuesday morning Dailiy Paing rose at 5:30am, and quickly found herself dreading the day ahead. There was the two-hour bus ride to Yangon and the very real possibility that she would vomit among the crowd of passengers. And then, once she and her mother reached the city, Dailiy faced a day of blood tests and chemotherapy. It was the first of four days she would spend at the Yangon Children’s Hospital that week. At least the next day she wouldn’t have the bus ride.
“I’m scared of the bus,” Dailiy tells me a few hours later, adding proudly that she managed to avoid throwing up. “And the hospital smells funny. I wish I could just stay at home.”
Then she smiles for what feels like the 100th time that day. A big, wide, toothy smile accompanied by a gentle drawing in of the shoulders and cock of the head that shows she knows the truth. When you are 12 and battling leukaemia, staying home is rarely an option. When you are 12 and battling leukaemia in Myanmar, a country whose health system has been left in tatters by decades of rule by a paranoid junta, it is even less within the realm of the possible.
In the rich world, her doctors insist, Dailiy would be on her way to an all-but-certain cure via a bone-marrow transplant. The relentless smile, the glint from the big brown eyes that comes at you from below her hairless head, would be one of victory over adversity. In the UK, US, or just about anywhere with a functioning, up-to-date, well-resourced health system childhood leukaemia is much more often than not a curable disease.
But bone-marrow transplants don’t exist in Myanmar. Nor, at least at a reasonable cost, do the sort of sophisticated diagnostic tests that help doctors identify which variant of leukaemia a child is suffering from, so that they can tailor their treatment. Nor, in the Yangon Children’s Hospital paediatric oncology ward, do bed sheets or pillows or steady meals for that matter. That means that, armed with rudimentary blood tests and the advice of a single overworked pathologist wielding little more than a microscope, the doctors at the hospital are doing their frustrated best to treat Dailiy with a chemotherapy cocktail that they adjust as best they can.
“She is another star.” That is how Doctor Aye Aye Khaing introduces Dailiy to me. Dr AK, as everyone calls her, is the head of the paediatric oncology unit where Dailiy is being treated. We are here because World Child Cancer, the charity chosen by staff for this year’s FT seasonal appeal, has nominated Myanmar as a country in which it would like to work.
A few weeks beforehand, a team from WCC had been through to determine the needs. Their report made for difficult reading. Now we are here and what had seemed daunting in print overwhelms in person. And then you meet a child like Dailiy and it becomes personal.
She lands in the blue plastic chair in front of Dr AK during the morning intake when patients take turns in the seat and their parents look on intently as the doctor works through a series of questions before laying out the day, or days, ahead for that particular child.
There are more than a dozen sad stories before Dailiy that day and many of the children in the ward have the worn look of children whose bodies are doing everything possible to rob them of their childhood. But Dailiy, who for more than a year has been battling leukaemia, stands out. Her eyes are livelier. She smiles shyly when Dr AK teases that she speaks good English. “Hello,” Dailiy responds, looking over Dr AK’s shoulder towards me. “How are you?”
When you speak with Dailiy about her illness she describes it in terms of what it has displaced in her life. She wants to be a teacher and is peeved that her battle with cancer has affected her school work. “I wanted to get an award at the school. But I missed it because I got this disease,” she complains. (It turns out that she finished second rather than first in the class, I learn later.)
You don’t have to look very far to see that Dailiy’s battle is taking place against the fading remnants of authoritarianism. Myanmar is coming in from the cold, a country of 60m reconnecting with the global economy and confronting political change at a remarkable pace. But at the Yangon Children’s Hospital you encounter the legacy of decades of mismanagement and the heavy hand of a regime that starved the country’s healthcare system of resources.
The hospital’s main building was built in 1970 with Canadian funding. It seems to have changed little since. The tropical heat bounces around the dimly lit, un-air conditioned corridors. Perhaps because of the heat, there is none of the urgency that most rich world hospitals carry. Instead it reeks of bureaucratic resignation, an impression that begins with the stray dogs lazing in its forecourt.
There are huge gaps in the system. A brochure I am handed lists 250 vacancies for doctors, nurses and technicians. Filling those positions would take two to three years, according to hospital administrators.
All of the support functions also seem to be missing. Computers or any other sense of modern administration tools are absent, or rare objects to be hidden away. In the oncology ward, patients’ records are kept in notebooks with green covers that are kept on a shelf in the hallway.
There is no pharmacy and parents often have to fend for themselves to track down medicines. In fact, parents have to fend for themselves for just about everything. Blood donors are tracked down by a group started by mothers fed up with the country’s unreliable blood supply. Parents have to provide the blankets, sheets and pillows for their children’s beds. They rely on food stalls next to fetid drains outside the main entrance for meals for their children.
The functioning bits of the hospital depend on individuals like Dr AK, the 49-year-old oncologist who has built up the unit from scratch. In 2003, encouraged by one of her old professors, she convinced the hospital to let her establish a small unit for children with cancer. What began as six-bed department has grown into a 34-bed operation staffed by Dr AK, three junior colleagues and a group of loyal young volunteers. There is a smaller paediatric oncology unit in Mandalay but that is it. Dr AK’s operation is Myanmar’s best, and patients from all over the country end up at her morning sessions.
Myanmar does not collect, or report to the World Health Organisation, the number of cancer cases it sees each year. But that is beside the point. Most childhood cancers in Myanmar are never diagnosed, or misdiagnosed, and only a fraction of children ever make it to treatment. The nearly 200 new patients Dr AK’s unit sees each year amount to only a tenth or less of the 2,000-3,000 childhood cancer cases Myanmar should be reporting according to the laws of statistics.
Dr AK has limited capacity to deal with the case load she has. She contacted World Child Cancer for help because, despite the hard work that she and her team do, too many of their patients are dying.
She adds that if she could convince the families of her patients to keep up treatment, the data show that they would have a 60 per cent chance of survival. It is far below the 80 per cent plus survival rates hospitals in the rich world record but creditable nonetheless.
But one in four of her patients ends up “defaulting” on treatment at some point, usually for reasons of family economics. With those taken into consideration the numbers shift dramatically. The reality is that less than a third of the patients who end up at the paediatric oncology unit will survive.
Like most of the children on the unit, Dailiy spends her days mostly around the fourth-floor waiting area. It isn’t air-conditioned but with the windows open and the fan that ticks away incessantly, it’s bearable. And all day, the television plays cartoons.
The actual treatments don’t take long. Most of the day is spent killing time. You are either waiting to be ushered away for chemotherapy or recovering and, if you can, it is better to wait by the TV than in the wards where the sicker children are sleeping with their mothers huddled close.
After her conversation with Dr AK, Dailiy has her blood tests. Then, just after lunch, she lies down on a bed in a repurposed isolation room, pulls herself into a foetal position, and winces quietly as one of the doctors inserts a needle into her spine and delivers the first dose of chemotherapy of the week. Afterwards her mother carries her face down to a gurney tucked into a quiet hallway at the back of the unit where she rests for a few hours.
Dr AK is blunt about Dailiy’s prognosis. Her age makes her a high-risk patient and her treatment is being held back by economics and Myanmar’s poor medical infrastructure. Dailiy’s mother, who runs a small shop and is raising her alone, can’t afford the $1,200 test she could get overseas that would help better pinpoint the type of cancer and allow doctors to tailor her chemotherapy. Myanmar also cannot provide the bone marrow transplant that might offer a cure, Dr AK says. “If she was in Singapore or somewhere else people would be preparing the transplant for her,” she says.
It is a line that Dr AK repeats often in the three days we spend on the unit. For as many as a third of the cases that arrive on her doorstep the cure would be a bone marrow transplant, she insists. Western oncologists say bone marrow transplants are intensely complicated. As few as one in 10 children with leukaemia will undergo bone marrow transplants in the UK, according to experts.
But the issue is important for Dr AK. The simple capacity to perform a transplant is a measure of the health of the overall system, she tells me. You need a good blood bank and donor registry, neither of which Myanmar has. You need good blood diagnostics and better scans, which Myanmar doesn’t have. Perhaps most important, you need the facilities to house patients with weakened immune systems, which Myanmar doesn’t have.
Dr AK has done the maths. A single proper isolation room would cost $100,000, she says. But it is money she does not have.
Spend any significant length of time on Dr AK’s unit and you find yourself confronting a procession of heart-wrenching dramas stuffed full of awkward decisions.
Shin Lagor Bartha, a young monk (he said he was 16, the doctors put him at 13) with leukaemia, turns up for his chemotherapy and is chided by the doctors. Despite his robes, the cheeky goyin, or young monk, as everyone calls him, acts more like a cocksure teenage tout than a serene moral guide. He is endearing and everyone smiles when they see him. Except for Dr AK. She calls him a serial offender. He might pray diligently but he is anything but rigorous when it comes to his treatment.
“As the adopted son of a monk I am kind of a spoiled brat,” he confesses.
The monk is a bit of levity in the ward but the real focus is a bed where Choo Choo Thin, a nine-year-old girl with terminal stage neuroblastoma, a rare cancer, is suffering. Her parents have brought her to Yangon from their home in the Irrawaddy River Delta region to administer a course of palliative chemotherapy. The hope is simply to reduce the pain as she slips away.
But she has been up most of the night vomiting and is dehydrated and yelling out in agony for her mother. Doctors, nurses and her parents are all gathered around her bed. A rare dose of morphine has been sent for. Watching the whole thing from just a few steps away is Dailiy, whose mother is getting ready to apply her thanaka, the fragrant paste many Burmese children wear on their faces, often in elaborate patterns.
Eventually the morphine arrives and Tint Myo Hnin, the doctor in charge that morning, administers it. She is the only one Choo Choo will let near her with a needle and is one of the heroes of the unit.
Dr Tint is the daughter of a doctor and has ended up as one herself because her father vetoed her bid to become an agronomist. But, it is clear that the 38-year-old has found a passion. She is Dr AK’s chief lieutenant and protégée and was sent away a few years ago on a fellowship to Singapore. Single, she lives in an apartment on the hospital grounds so that she can start work early and finish late and avoid the worsening Yangon traffic.
But Dr Tint is also frustrated. She knows that the care the unit offers lags behind what she saw in Singapore and feels conflicted by that. “I feel that I can do much better than this but I can’t do anything about it,” she tells me after Choo Choo has fallen asleep.
Her eyes begin to well up. “Frankly speaking, I don’t know why I am involved in this.”
She lists off the top of her head all the things that the unit needs so that she can do her job properly. Real isolation rooms and a better supply of antibiotics and other drugs top her list. But the unit also needs counsellors to help parents understand and cope with their children’s disease. She tries to do what she can. But there is a limit and “I feel like I am not doing enough,” she says.
Dr Tint seems to gravitate to the hardest cases and she and Choo Choo have developed a friendship. That carries emotional costs. “When those children pass away I suffer a lot,” she says, thinking of the weeks ahead.
Soon after she has administered the morphine to Choo Choo, she stands at Dailiy’s bed and tells the young girl and her mother that they are moving down to the day room two floors below for the rest of their stay. “Just find a bed away from the boy with a cough,” she tells them.
That afternoon, after the move, Dailiy, her mother and I sit down near her bed in the day room. The boy with the cough seems to have gone.
She is doing her best to get through the days but is “very bored”. She hankers for school and friends and normality and is annoyed at what lies ahead. Two more days of chemotherapy jabs and then a quick weekend home before she will be back in Yangon for more.
“It’s tiring,” she says. “I just want to be at home.”
The previous day she had nominated Burmese literature as one of her favourite school subjects. When I asked for an example of a poem or story that she liked, she paused, bit her bottom lip and squirmed in her seat in that classic sequence of juvenile embarrassment. And then she looked up confidently and recited a poem called “To the top”, a Burmese classic normally attributed to “Anonymous” that her doctors told me is an essential on the school curriculum. It is what a Robert Frost would be in an American school, a Keats or Kipling in the UK.
Once she is done Dailiy pauses. And then, again, she smiles.
“Over one mountain after another surrounded by higher ones still. After you overcome one mountain there is always one more. Forced to renew my strength again and again I have to press on with the walk. Sometimes it is so tiring that I want to give up on everything and just stop. However, once it has started, the road will lead me to the end one day. Don’t give up now, don’t give in. Try to release all the exhaustion by the lake, enjoying nature and listening to the birds sing. Renew your strength my beloved man.”
To read more stories on World Child Cancer’s work in the developing world, please visit FT Seasonal Appeal