The journey of childhood cancer: when only medicines are not enough

​"Fever started 10 days ago, and then he started complaining of leg pains; since then, he hasn't been himself. He has stopped eating and playing…I am also noticing bluish marks on his body."

This is the typical history of a child later diagnosed with leukemia, a form of blood cancer.

"We noticed a white spot in her left eye in the photograph."

This telling observation from parents or carers usually indicates the presence of a retinoblastoma, a tumour of the back of the eye that generally affects babies and children under five years old.

Such stories are repeated at least a thousand times a day as children around the world are diagnosed with some form of childhood cancer. That equates to an annual global average of around 400,000, with the vast majority, about 90%, living in low or low-middle income countries like Pakistan.

This geographic disparity can dictate whether a child survives their diagnosis, as outcomes depend heavily on where they receive treatment. The chances of a child with low-risk Acute Lymphoblastic Leukemia (ALL) being cured fall from 90% if treated in the US or Europe to 60-65% in Pakistan, and even further in Malawi or Nicaragua. It is this survival gap, and what it means for children and families in Pakistan specifically, that the rest of this article explores.

Why Geography Decides Survival

It would be simplistic to assume that the high survival probabilities associated with Western or developed countries are merely the natural consequences of better hospitals, facilities and treatments. Instead, they are the result of a combination of factors. These include obvious ones, such as earlier diagnosis due to better healthcare infrastructure, as well as access to research trials and experimental treatments. But there are also less obvious factors: emotional, physical, and community support. Children and their families are often assigned a team of support staff, including social workers and child life specialists, who help them with everything from explaining the disease and the implications of the diagnosis to a child in an age-appropriate manner, to providing emotional support to the family, to offering advice and information on arranging lodging and resources for those who may have travelled long distances for their treatment.

The existence of such systems allows families to concentrate their energies on their children, freeing them from the stress of juggling multiple demands – whether arranging appropriate medical care, appropriate lodging (if, as often happens, they have travelled long distances to access medical treatment), or, just as importantly, the emotional and mental toll of nursing a child through the pain and suffering of cancer treatment.

A Different Kind of Cancer Care

While the knowledge and expertise required for childhood cancers differ from that required for adult cancers such as breast, lung or colon cancer, treatment modalities are broadly similar and can include chemotherapy, surgery as well as radiation therapy. However, paediatric cancer treatment can be far more resource intensive, requiring frequent hospital visits and admissions. More frequent blood tests and medications also mean that treatments and medications often need to be administered through cannulas or central lines, which remain in the body for long periods of time. This puts not only the child and their family, but also the medical teams responsible for their care, under extreme stress. The demands of a paediatric oncology unit therefore require a unique combination of medical competence and personal qualities.

The Team Behind the Treatment

The healthcare team is led by the paediatric oncologist, who is responsible for devising the treatment plan and coordinating care with other members of the team, including surgeons, radiation oncologists, radiologists and pathologists. Palliative care doctors support families by alleviating suffering and managing symptoms including pain, fear and anxiety, while trained nurses with expertise in administering chemotherapy to children, as well as comforting them, form an integral part of the team.

The shortage of most of these experts in countries with high mortality rates for paediatric cancers plays a considerable role in these outcomes. Pakistan Society of Paediatric Oncology (PSPO), an organization of healthcare providers working in the field of paediatric cancers, is working to promote awareness about childhood cancers, develop treatment and diagnostic standards, and advance research to improve the outcomes of childhood cancers.

A Widening Gap in Treatment Options

The disparity in clinical advancements is widening just as quickly. Newer treatment modalities such as Blinatumomab, chimeric antigen receptor therapy (CAR-T), and various immunotherapy agents for brain tumours and cancers like neuroblastoma remain out of reach, not only in Pakistan but across the wider region. Even morphine, an essential and commonplace drug in many countries for managing pain in children with advanced disease, is scarcely available because of strict regulations.

The Hidden Cost of Distance

The shortage of specialised paediatric oncology units means many families must travel from far-flung areas to the handful of larger cities where specialised hospitals and treatment centres are concentrated.. This adds a layer of socioeconomic strain to an already difficult journey, as families now need resources not just for treatment, but also for accommodation and transportation too. Parents often lose income and livelihoods during the months they spend away from home. In wealthier parts of the world, organizations and NGOs have recognised this need and built dedicated accommodation for such families, usually offered at a nominal fee, sparing them at least one financial burden among many.

Beyond the Physical: The Emotional Toll

The emotional and psychological toll on the child and the family is immense. Long, disruptive treatment can cost children months or years of schooling and play, and it is too often assumed that this is simply the price of surviving a life-threatening illness. Yet the evidence tells a different story: maintaining a child's education during cancer treatment measurably improves their well-being and their ability to reintegrate into ordinary life once treatment ends.

Siblings feel the strain too, often living with anxiety and fear for a brother or sister they watch go through treatment, while studies have repeatedly found that parents can experience symptoms of PTSD long after their child's therapy has ended. Psychological and emotional support throughout the cancer journey is not a luxury; it is a necessity. Play therapy and music therapy are increasingly recognised as valuable tools for easing pain, nausea and anxiety in young patients, yet Child Life specialists, trained specifically to deliver this kind of care, remain absent from many paediatric oncology centres.

Even in the world's most advanced hospitals, corporations, welfare organizations and NGOs step in to provide these services. In Pakistan, where government resources are limited, the responsibility falls even more heavily on civil society and charitable organizations to fill this gap.

Caring for the Whole Child

A child with cancer needs more than chemotherapy, surgery, or radiation. They need pain relief, psychological support, education, play, family support, safe accommodation, rehabilitation, and the opportunity to return to a normal childhood. Improving childhood cancer survival in Pakistan therefore requires us to look beyond the treatment of the disease and invest in the care of the child and the family as a whole.

Role of AKUH

At the Aga Khan University Hospital, children with cancer receive comprehensive, family-centered care. The extended team, beyond oncologists, oncology teams and surgeons, includes cardiologists, infectious disease specialists, intensivists, nutritionists, psychologists, physiotherapists, and many other specialists who contribute to the child’s care. Close communication and frequent multidisciplinary team meetings allow us to develop individualised treatment plans and respond promptly to the many complications that can arise during the cancer journey. This collaborative and integrated model of care minimises delays in decision-making and ensures that children receive the expert care they need, when they need it. Importantly, families do not have to travel to another facility for essential aspects of treatment, as radiation therapy, surgery, and bone marrow transplantation are all available within the same institution. And when, unfortunately, cure is no longer possible, we do our best to ensure our families do not feel abandoned.

The spirit of moving science forward, and of providing better treatment for the children who come after, is what has allowed continued improvements in outcomes for paediatric cancers. That same spirit must now extend beyond the disease to the whole child and the family. None of this can happen without the wider community of families, donors, volunteers and civil society organizations that help address the needs that extend beyond the hospital. Organisations such as Umeed Parr, a parent-led nonprofit founded by families with lived experience of childhood cancer, are helping provide support with accommodation, education, nutrition, psychosocial well-being and the hospital experience. The Dawood Foundation, in collaboration with Umeed Parr, is also supporting educational programmes for children receiving cancer treatment in hospitals, like AKUH, while the Child Aid Association has, through its public-private partnership with public sector hospitals, provided free diagnostics, treatment and psychosocial support to children with cancer.

Such partnerships and initiatives are an important part of building a stronger ecosystem of childhood cancer care in Pakistan.

At the Aga Khan University Hospital, we believe that caring for a child with cancer means bringing together the expertise, resources and compassion needed at every stage of that journey. From diagnosis and treatment to rehabilitation, survivorship and, when cure is no longer possible, compassionate end-of-life care, the focus remains on the child and the family as a whole. Advances in science will continue to improve how childhood cancers are treated, but the measure of progress must also be how well we protect a child's childhood, support their family, relieve their suffering and help them return to the fullest life possible. The journey of childhood cancer is therefore not simply about treating a disease; it is about giving every child the best possible chance to survive, heal, grow and reclaim their childhood.

About Author: Dr Sadaf Altaf, Associate Professor, Paediatric Oncology, Department of Oncology, The Aga Khan University Hospital, Karachi.​