Warriors and Survivors - 282

Children Cancer Stories by Rukh Yusuf - Blog # 282

I am Rukh Yusuf, Clinical Pharmacist, also specialized in Total Parenteral Nutrition and Bone Marrow Transplant. I have worked in the Pediatric Oncology unit of a public hospital. The mission of this blog is to bring to you the real-life stories of child patients suffering from cancer. Cancer is still a difficult disease to handle and treat. However, when it strikes the children, some so young that they cannot even speak, their agony is beyond expression and words. Let us pray especially for children suffering from cancer for early and complete remission. May Allah shower His Merciful Blessings upon them. Aameen. 

Mehak is five years old.

She should be running around chasing her cat without thinking about hospitals. But for Mehak, the hospital has become a familiar part of childhood. She was diagnosed with thalassemia major when she was only two years old.

Since then, blood transfusions have become a regular part of her life. In the beginning, she needed a transfusion about once a month. As time passed, her need increased. Now, there are times when she needs blood twice in the same month.

For a five-year-old, this is a lot.

Mehak may not fully understand what blood is, why she needs it, or why she has to sit quietly in a hospital while someone gives her blood through a small needle. She simply knows that there are hospital visits, familiar faces, waiting rooms, and days when she has to leave her normal routine behind.

Her family understands much more.

They know that blood transfusions are essential for keeping her healthy and helping her body receive the red blood cells it needs. They also know she becomes lethargic when she needs another transfusion and that regular transfusions come with their own challenges.

One of the major problems is iron overload. With repeated transfusions, extra iron can gradually build up in the body. Unlike many substances, the body has no natural way to remove large amounts of this excess iron. Over time, it can damage important organs. That is why children like Mehak may also need iron-chelation medicines to reduce the amount of iron stored in their bodies.

There are other worries too. Even with careful screening and safe transfusion practices, repeated blood transfusions can carry risks, including infections and transfusion-related complications. Families therefore live with two realities at the same time: the blood is necessary, and the treatment itself requires careful monitoring.

For Mehak’s family, treatment is not limited to the hospital bed.

It means arranging transport, taking time away from work and other responsibilities, finding blood when it is needed, paying for medicines and travel, and planning life around hospital appointments. For families who live far from a specialized treatment center, the journey can be even harder. A transfusion that may take only a few hours can require an entire day, or sometimes much more, because of the distance they have to travel.

And then there is the emotional side that is harder to measure.

A parent watches a small child receive treatment and learns to become comfortable with things no parent should have to explain so early in life. They learn about blood counts, transfusion schedules, medicines, iron levels, and possible complications. They learn to notice small changes in their child. They become careful planners because missing treatment is not simply missing an appointment.

Yet Mehak is still Mehak.

She is not only her disease. She is a little girl growing up around all of this. She has moments of happiness, curiosity, playfulness, and laughter. Her treatment is a part of her life, but it does not define her whole life.

Thalassemia is a chronic inherited blood disorder that remains a significant health problem in many parts of the world. For children with thalassemia major, regular treatment can continue for many years. How well a child does depends on many factors, including access to safe blood, appropriate medicines, monitoring, management of complications, the child's response to treatment, and the ability of the family to maintain long-term care.

Prevention is also an important part of the story.

Because thalassemia is inherited, carrier screening and genetic counseling can help couples understand their risk before having children. Knowing whether both partners carry a thalassemia gene can allow families to make informed reproductive decisions.

For families like Mehak’s, however, prevention is a conversation for another time.

Right now, there is a little girl who needs her next transfusion.

And there is a family that will once again pack a bag, make the journey to the hospital, sit beside her, and wait.

For Mehak, this has become part of growing up.

For her family, it is simply what they do because they love her.

Note: Patient name has been changed to protect privacy.