In 2015, Tabitha Njeri noticed something shiny in her two-year-old son, Austin Kagiri, left eye. She was pregnant with her third child at the time, so she thought it was the hormones making her delusional as she would only see it at night.

“I would go to the hospital and explain my fears to the doctors, but they could not explain what that was. One day, I asked my husband to take him to see an eye specialist, because deep down I felt something was off,” says Tabitha.

Indeed Tabitha’s concern was not misplaced. It was discovered that Austin had retinoblastoma, a type of childhood cancer that affects the eye.

He was rushed to Kenyatta National Hospital (KNH)  where surgery to remove his left eye, which had been claimed by the cancerous cells was done.

To Tabitha, everything happened in a flash and nothing made sense to her. One minute, her son was well and the next, his eye was being removed to save his life. “He went through six sessions of chemotherapy after the surgery because the cancer had spread outside the eye. I could not be with him at the hospital because I had just given birth and was nursing the newborn. I got help from my husband and house manager,” she says.

Declared cancer-free

“It was tough not being there for him physically, but the doctors would call me and update me on his progress,” she recounts.

In 2019, Austin, was declared cancer-free. After losing his eye Austin, 10 now wears a prosthetic eye. His mother says he is a confident boy and talented in football and drawing. “Some people are curious to know what happened to my eye. I have only told my best friends. It is not possible to tell everyone,” Austin shares.

His boldness has been cultivated over time as there have been episodes post-surgery, when his prosthetic eye has gathered undue attention much to his discomfort and distress.

Retinoblastoma is a rare type of cancer that affects children below five years old and more so those below the age of three years says Dr Kahaki Kimani, an ophthalmologist and retinoblastoma specialist.

In Kenya, at least 100 cases of retinoblastoma are diagnosed annually. Although the numbers could be higher.

“The main symptom of this cancer is a white reflection (glow) in the centre of the eye (iris), which is usually visible in low light or it can also be seen when the photo of the child is taken using a flash,” she says

Squint eye

“During the day the eye may look normal and the glow may not show then it becomes visible at night. By the time you start seeing it during the day, the cancer has really spread,” she adds.

Other symptoms include the eyes not looking straight or in one direction (a squint) or a change in colour to the iris (the coloured part of the eye).

The month of September is dedicated to creating awareness about paediatric cancer by celebrating children who have battled cancer and calling for more efforts towards better care and support of childhood cancers.

There are no known causes of retinoblastoma as is the case with most childhood cancers.

Dr Kahaki, however, says that Retinoblastoma is one of the earliest cancers to be found to have a genetic underlying defect. “Many of the children who develop this cancer do so because they have a genetic problem and this genetic problem may start early so that the baby is already born with the cancer. For this case, both the eyes may be affected,” the doctor explains.

She adds; “Or it can start later in life in which case it is only the cells in the eye that will have this abnormal gene and these (children) are the ones who will have retinoblastoma only in one eye.”

About 90 per cent of patients will be the first person in the family to have been diagnosed with retinoblastoma, however, when they survive into adults, there is a risk that their children could have retinoblastoma. Unlike adults

Unlike adult cancers where modifying lifestyle factors, such as smoking, dieting, and exercising can reduce  exposure to cancer, preventing paediatric cancer is not possible. Nevertheless hope lies in early diagnosis, which can afford children treatment options that can save the eye and vision.

Retinoblastoma is 100 per cent curable, but only if it is detected early and treatment intervention is initiated, the expert says.

According to the World Health Organisation (WHO), only about 20 to 30 per cent of those children diagnosed with paediatric cancers in low-income countries survive, compared to more than 80 per cent in high-income countries.

“In 2008 Kenyatta National Hospital did a study to find out how many children treated in the facility were alive three years from the time they were diagnosed with retinoblastoma and it was shocking to find only 26 per cent were alive. Over 70 per cent had died.

Diagnosis during neonatal visits

“But because of the things we have done to improve care treatment, our most recent study in 2021 shows that our survival rate is 70 per cent,” she says.

“If we have early diagnosis, strengthen care, and create awareness, we stand a chance to match the 100 per cent cure rate of developed countries,” Dr Kahaki adds.

Once the cancer cells have spread outside the eye, the chance of curing becomes very slim. One of the most promising pathways for improving early diagnosis lies in exploiting routine immunisation visits.

“The maternal health booklet, which contains immunisation details has a page that guides the health care worker on what to look out for in the eye of a baby. It is during such visits that an eye defect or irregularity can be easily picked,” says the expert.

“In Kenya, over 80 per cent of children are immunised, so that means when mothers visit health care cases we will be examining over 80 per cent of children for retinoblastoma,” she says.

This is a viable way of enhancing detection only that most healthcare workers are not sensitised on retinoblastoma, so they might not identify tell tales as was the case with Austin when the healthcare workers repeatedly failed to pick up Tabitha’s concern. “The child should be seen withing 72 hours. It is an emergency,” she says.

Treatment options for retinoblastoma vary depending on how the cancer presents. The veteran eye specialist says removal of the affected eye is one of them.

Others are chemotherapy and laser treatment. “If we lose the eye, we put an implant, so that it can hold a prosthetic eye. By looking at the child, you may not know the eye has been removed. The eye cannot be donated to replace an enucleated eye, because it is an extension of the brain.

What can be donated is the cornea (the transparent part of the eye) by a deceased person to prevent or reverse cornea blindness of a recipient.

The other common cancers that affect children, include leukemia, lymphomas (that affect the kidneys), and bone cancer (Osteosarcoma).

Swelling on any part of the body, loss of appetite, bleeding, and loss of weight are some of the signs of paediatric cancers.

Experts say these signs tend to mimic common ailments and thus parents ought to be thoroughly observant.

Treatment abroad

The prohibitive cost of treatment is one of the glaring impediments to the treatment of paediatric cancers. One cycle of chemotherapy regimen costs Sh30,000 to Sh70,000 in a government-sponsored hospital not to mention the cost of hospital admissions and medication. Patients are often referred for more specialised care outside the country, because cancer machines have broken down.

“We are currently not offering ocular plaque brachytherapy because the machine broke down. The facility has an overwhelming number of patients and the few machines tend to be overworked and repairing them is expensive,” said Dr Kahaki.

Ocular brachytherapy plaque is a type of internal radiation therapy where radioactive seeds are placed inside or close to the tumour(s). This means that the tumour gets a large amount of radiation, while nearby healthy tissue gets less radiation and is less likely to be damaged.

There have been sporadic reports of the breakdown of cancer machines at the country’s premier referral hospital placing patients in a precarious position.