Local 3-year-old eye cancer survivor defies odds

The little boy furrows his brow in concentration then takes aim before confidently kicking his red ball across the wooden floor of his mother’s apartment. Even though he’s in the lounge she’s not mad at him for kicking a ball inside their home.

In fact, Lebo Dhlamini is rather proud of the football-mad three-year-old.

Lesedi is the leader of his group of friends in their complex – taking charge, directing and instructing even the older kids on the rules of the beautiful game, she tells DRUM.

“Back home, in the Free State, they call him Teko Modise because he loves football so much,” Lebo (29) says when we meet her at her flat in Springs, Gauteng.

The relief and love in her voice is noticeable. Just over a year ago she heard the terrifying news that Lesedi had cancer in his eye and she didn’t know what his future held. But now he’s much better and Lebo is sharing his story during childhood cancer awareness month.

Lesedi was a few months away from his second birthday when doctors told his mom he had retinoblastoma, a rare but malignant tumour of the retina of the eye that almost exclusively affects children under the age of two.

There is no known cause although genes could play a role, says Prof Janet Poole, principal paediatrician and head of paediatric haematology and oncology at Charlotte Maxeke Johannesburg Academic Hospital.

“If the parents had retinoblastoma as babies, and it was both eyes, then there is a high chance their child will inherit the gene mutation and develop it too. The spontaneous unilateral type [which affects just one eye] can occur in any child, but is very rare.”

Lebo’s daughter, Thandeka (10), wears spectacles and had watery eyes but an eye specialist assured Lebo her daughter was perfectly healthy.

“The specialist told me all Thandeka needed were eye drops and a pair of glasses to help her eyesight. She’s been fine since then and I try to take her for regular eye checks.”

Lebo noticed Lesedi’s right eye would occasionally water and she assumed he would also need glasses. But she got the shock of her life when she took him to a specialist and found out he had cancer.

When I arrived at the clinic the doctor told me to immediately take Lesedi to Charlotte Maxeke Hospital because he might have cancer.

”She couldn’t get her head around it, she says. Lesedi wasn’t in pain – if anything, he was his normal playful self, his mom says, struggling to hold back tears. It all happened so quickly. They told me his cancer was in the first stage.”

Doctors told Lebo they had to remove Lesedi’s eye to stop the cancer spreading to his brain and to save his life. Giving doctors the go ahead was the hardest decision of her life but counselling sessions gave Lebo the strength to do it.

“I couldn’t deal with the fact that my son would only have one eye,” she says. “How was he going to see, walk and play with other kids? Children can be mean. “Why was this happening to us?” Lesedi’s eye was replaced with a prosthetic eye and he had to stay in hospital for two months after the operation.

He had chemotherapy for nine months and it was a dark time for the family. Lebo gave up her job as a cashier. “I had to sleep with him at the hospital for two months. I would lose my mind when I heard about children who didn’t make it and died.”

She feared the worst, especially as the chemotherapy took a terrible toll on his little body.

“Chemo was tough. His hair would fall out when I bathed him and he refused to eat. He wasn’t his usual friendly self,” she recalls.

The love and support of her family and her partner – the children’s father, Tlado Mahlophe (32) – helped them pull through the traumatic time.

“Tlado was there for us. He is a great father.” Lebo is fearful Lesedi’s cancer will return, but she’s doing her best to ensure he’s eating healthily, is happy and goes for regular check-ups at the hospital.

“If he gets a fever I get scared and think the cancer might be back and he’ll go blind,” she says.

“At his monthly check-ups Lesedi is assessed to see if the cancer has come back. They advise I remove his prosthetic eye and clean it. I’m not yet ready to do that because I am scared. But I know I need to be strong for him. They’ve given us drops to help keep the eye clean and we have to wipe it regularly as it tends to water.”

The support she’s received from Cupcakes of Hope has been immeasurable, she says. The non-profit organisation works to raise awareness about cancer and to raise funds for families in need of assistance.

“I found out about Cupcakes of Hope when Lesedi was in hospital. They assisted us with food and transport. We also have a support group where we usually chat about our challenges as parents with children who have survived cancer.”

“I’ve seen how cancer can affect and break families,” says Sandy Cipriano, the founder of Cupcakes of Hope.

“In 2017 we were able to raise more than R300 000 for children in need of stem cell or bone marrow transplants.” Meanwhile, Lesedi is back to being a cheerful little boy and Lebo couldn’t be happier.

“Look at him now. He amazes me because he’s very smart and doesn’t look different to other children. He even started crèche two months ago and he loves school.”

Lebo says her dream for Lesedi is for him to become a motivational speaker. “He can help other kids to stay strong and never lose hope.”