Beyond the Diagnosis: A Child, a Mother, and Cancer in Eastern Congo

Abstract

RAK is 4 years old. He does not understand what is happening to his body. His belly has grown swollen. His bones ache. His eyes protrude unnaturally, dark rings making his small face look older than his age. He no longer plays with the other children in the camp. He cries often from pain, from fear, and from exhaustion.

It began slowly, like many childhood illnesses: a fever and fatigue. Then, the signs worsened with enlarged lymph nodes, bone tenderness, and distended abdomen. We suspected a malignancy. Tests confirmed neuroblastoma, likely stage M (formerly stage IV), not stage II as initially thought. A disease treatable in high-resource settings, but here, the chances are faint. RAK was born in a place where illness rarely leads to possibility.

His mother, NYK, tells me she did not want to love him at first; not because he was not beautiful, which he was, but because of how he came into the world. He is a child of war, of violence, and of a night NYK would erase if she could. Four years ago, she lived with her husband and five children in Masisi territory, North Kivu Province, in the Democratic Republic of Congo (Figure 1), a fertile region known for its cattle and milk. Life was hard, but stable. Then, came the M23, an armed group that has terrorized eastern Congo for decades [1, 2]. That night, they entered her village and killed her husband before her eyes. Then, one of the men raped her. She was 31 years old.

She fled with her children to Goma. Weeks later, she learned she was pregnant. At first, she thought of ending the pregnancy. But something perhaps faith, perhaps fatigue, led her to carry it to term. She gave birth in the refugee camp. She named the boy RAK. She tried to separate him from the trauma of his conception. She told herself that he was innocent. Yet, every time she looked at him, she remembered her husband's death and that man's face. And still, she kept him close.

Now, 4 years later, this child born of suffering is the one who needs her most. He is fragile and sick, and she is broken. Her body survived the violence; her spirit barely. Her heart bleeds still, now even more. I remember the first time I saw them. NYK sat on a plastic chair, RAK asleep in her lap. She did not speak for several minutes. When she finally did, her voice trembled. “I think god is testing me,” she whispered. “I have nothing left. Why is He taking my child too?”

There is no easy answer. In the camp, cancer is not only a disease but also a sentence. Access to chemotherapy is extremely limited. Pain control is often inadequate; opioids are scarce. Palliative care is minimal. Every diagnosis feels like a betrayal. We do what we can to relieve pain, offer emotional support, and sometimes arrange referrals to distant centers. But often, it is not enough. RAK is still fighting; so is his mother and so are we. Yet it feels like standing in the tide, with waves too strong to hold back. This story is not only about one child with neuroblastoma. It is about what it means to be a child in eastern Congo to be born of violence, raised in displacement, and then forced to battle cancer. It is also a story of a mother who, despite everything, chose life and now must watch that life suffer.

As a clinician, I carry this story with me. I wrote it because I could not remain silent. Bearing witness matters. In places where suffering is immense and resources scarce, our duty is not only to treat, but also to remember, to tell, and to honor. We cannot always cure. But we can make sure that children like RAK, and mothers like NYK, are not forgotten.

The authors declare no conflicts of interest.