Children With Cancer: A parent’s worst nightmare

Young parents Ringku Mia's and Shifa Akter's world had turned upside down when their four-year-old daughter Farha was diagnosed with stage-4 cancer that originated from a tumour in her kidney.

Ringku, 35, and Shifa, 26, along with their entire family, have been living through a nightmare for the past four months.

They had to mortgage their only cultivable land in Habiganj's Baniachong to pay for Farha's treatment.

In an unfamiliar city with no relatives to turn to, Shifa, mother of three, left her eldest daughter in the care of her sister, while she and her youngest daughter, just two years old, spend their nights on the floor of the paediatric surgery unit-5 of Dhaka Medical College Hospital. Meanwhile, Ringku stays in the hospital corridor.

Shifa's two-year-old has also gotten ill from spending her nights on the cold floor of the hospital, while Farha herself is having to share a hospital bed with three others.

Remembering the diagnosis, Shifa said when her child had abdominal pains around four months ago, they did not initially take it seriously. However, when Farha showed signs of jaundice and continued pain, they took her to a doctor, who, after an ultrasound and a CT scan, referred them to the National Institute of Cancer Research and Hospital (NICRH) in the capital's Mohakhali.

"We couldn't believe his words and sought a second opinion from a private hospital in Dhaka. But we had to accept the reality and shift to NICRH as Farha's stomach had begun swelling," Shifa sobbed as she spoke.

"They gave her six rounds of chemotherapy there to shrink the tumour, before referring us to the Dhaka Medical's tumour board for surgery. The doctors at Dhaka Medical performed the surgery on February 5 and removed the tumour and a portion of her kidney to prevent the cancer from spreading. She still needs to receive 27 more doses of chemotherapy and two doses of radiotherapy."

Shifa added, "The whole process has so far cost us Tk 2 lakh, which we had to arrange without any help from others … We are somehow getting by."

Farha's father Ringku, a farmer, said, "This reality was beyond my worst nightmares. I've never experienced the streets and roads of Dhaka. My phone was even pickpocketed right before the surgery, and right now, we are living without communication with anyone."

The situation is similar for four-year-old Imamul Hasan, a cancer patient from Sunamganj, who is suffering from a malignant kidney tumour causing blood to flow through his urine.

Imamul had already come to the hospital late.

Once his family was told about the expenses, they had to go back to the village to mortgage his grandparent's land off to arrange the money.

The delay only further deteriorated his condition.

Prof Shahnoor Islam, unit chief of the paediatric surgery department at DMCH, who excels at paediatric surgical oncology, said, "Although early detection can go a long way, a lack of awareness and information leads to late detection, as patients travel many long winding paths before finally reaching us."

She also reported a severe shortage of beds in her unit, with three to four patients sharing a single one. The unit has only eight beds, mostly occupied by cancer patients.

Besides, DMCH's paediatric oncology and haematology departments have only 30 beds, and a few cabins, making it difficult to accommodate the nearly 200 children with cancer, including outpatients.

"Cancer treatment is expensive, ranging from Tk 2 lakh to Tk 12 lakh, depending on the stage and nature, making it difficult for families to afford. Although we are concerned about the risk of infection, abandonment of treatment due to high costs cannot be an option," Shahnoor said.

She added that they try to reduce investigation costs by admitting the patients, and if patients don't need hospitalisation during chemotherapy, they are allowed to receive treatment at home.

Besides, as parents often struggle to accept their child's cancer diagnosis, the tumour board at DMCH offers counselling from a psychiatrist to offer hope and support.

World Child Cancer, the leading international children's charity dedicated to addressing the global inequality in childhood cancer care, through its Bangladesh office, has been offering psycho-social support and financial aid to such poor patients and their families in six hospitals in Bangladesh.

This includes funding for diagnostic tests, medications, chemotherapy, transportation, food and accommodation. On average, each family receives Tk 5,000, based on their specific needs and treatment requirements.

"We have family support officers in six hospitals -- DMCH, Bangladesh Shishu Hospital, BSMMU, SSMC Mitford Hospital, NICRH, and Chittagong Medical University. From October to December last year, they provided finances and counselling to 1,368 families," said Jewel Ahmed, country representative of World Childhood Cancer.

Although there are no official cancer statistics for Bangladesh, data from DMCH showed that on average, almost 600 children receive cancer treatment per month at DMCH alone, due to the high number of patient referrals there.

The lack of paediatric onco-surgeons for solid tumour management has also been an obstacle to managing the flow of patients at DMCH -- the only facility with a tumour board for children.

Jewel suggested that if the government's project to establish dedicated cancer hospitals in eight divisions is implemented, it would greatly improve the situation for grassroots children with cancer, as each hospital will have 20 beds designated for them.

On the other hand, Prof Shahnoor emphasised the need for the position of paediatric onco-surgeons at those hospitals to reduce patient flow at DMCH.

"Unlike developed countries, we need adequate shelter facilities for both children undergoing cancer treatment and their guardians."

She also stressed the need for a higher number of molecular labs to reduce delays in returning urgent medical reports, along with more research and training for healthcare professionals to improve childhood cancer treatment in Bangladesh.