A Kenyan first: Cancerous bone in boy's knee cut out, 'cooked', then placed back

On a Sunday evening last August, a boy in Githunguri, Kiambu County complained to his parents of unbearable pain above his knee, prompting a visit to the hospital.

“The doctor ordered an X-ray, and when the results came out, he said he had osteomyelitis: an infection in the bone,” says Mercy Kibiro, the boy’s mother

They left the hospital with a prescription for various medications. However, the pain persisted and worsened with each passing day.

They returned to the hospital and another X-ray was done. This time, the doctor’s tone shifted to one of great concern. “This is something serious: move quickly and do an MRI and a biopsy,” Mercy recalls the doctor words.

Throughout this time, the boy continued to suffer from the pain. As they waited for the biopsy results, which seemed to take far too long, he was hospitalised and placed on powerful pain medications, including morphine. “We were advised to go to Kenyatta National Hospital (KNH) for a second opinion. And so, we went,” Mercy says.

Dr Catherine Muendo, a paediatric haematologist-oncologist, welcomed them into her office. She advised the worried parents to start chemotherapy immediately, even while awaiting the biopsy results. That very evening, the boy, Nathan Kibiro began taking anti-cancer drugs.

A few days later, the parents received the biopsy report. The pathology results indicated no cancer.

Dr Muendo then brought in another doctor: “a complementary specialist,” Mercy surmised.

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Shortly after, the Kibiros met Dr Nicholas Okumu, an orthopaedic surgeon.

Both Muendo and Okumu were doubtful about the biopsy results. “The clinical picture and the radiology reports didn’t match the pathology report,” Muendo explains.

The doctors urged the parents to have another biopsy done, this time by Dr Okumu himself. “He went into the bone with a camera and noted several things: the bone was fractured, which explained the intense pain that followed.”

He took samples and advised the Kibiros to send them to their preferred laboratory. Five days later, the results confirmed what Muendo and Okumu had suspected: osteosarcoma, or bone cancer. This marked the beginning of their battle against the disease, Mercy recalls.

What treatment options were available?

The Kibiros diligently sought the opinions of multiple specialists in various hospitals. Every doctor they saw recommended amputation of the leg before the cancer spread. “Let’s cut it off now!” Mercy recalls hearing one doctor say.

“Here in Kenya, there is no limb salvage,” another doctor explained, referring to the surgery that preserves the limb in bone cancer cases.

At one Level 6 hospital, Mercy noticed many boys her son’s age with amputations, which reinforced the consensus among doctors.

Yet, both Mercy and her husband were reluctant to imagine their son living without a leg.

Nathan is a footballer, and the idea of amputation felt like it would destroy his future aspirations. Before the diagnosis, he had played for his school’s Grade Three team.

“I am a Manchester United fan,” Nathan says.

“Who is your favourite player?” he’s asked.

“Marcus Rashford,” he replies.

A week before that fateful Sunday evening, Simon Kibiro, Nathan’s father, had driven around town with his firstborn son, searching for a football academy for him to join.

The thought of amputation was, for them, the equivalent of cutting off Nathan’s football dreams. When they heard the doctors’ recommendations, Nathan even asked his parents, “What about my football dreams?”

In search of alternatives to amputation, the Kibiros planned to travel to India, a suggestion from close friends. “We applied for passports, got them ready, and even began communicating with a hospital in India,” Mercy says. This is a common option for many Kenyans facing cancer treatment abroad.

Having been told by all specialists they visited that amputation was the only choice, the Kibiros sought Dr Okumu’s opinion, careful not to disregard the information they had gathered elsewhere.

To their surprise, Okumu did not even mention the word ‘amputation’. Instead, he proposed a procedure that was as astonishing as it was technical.

“We call it a limb salvage procedure. We remove the cancer but leave the leg intact. We removed the part of the bone with the tumour, treated it with heat to kill cancer cells, then re-implanted it into the patient,” Okumu explains.

“This is called biological reconstruction. We use the patient’s own bone tissue to reconstruct the section,” he adds.

The tissue itself is dead, but the bone has a natural ability to regenerate. The purpose of re-implanting the bone is to provide a scaffold for new bone to form around it. “This procedure is ideal for children because they are still growing, and the biological material provides a frame for bone to continue developing,” he said.

Okumu further explained that the other option, reconstructing the removed section with a prosthesis, would have required future surgeries as the child grew, making the biological procedure the best option for a growing eight-year-old.

To the best of his knowledge, this was the first time the procedure had been performed in Kenya. “Kenyan surgeons do perform limb-salvage procedures, but for me, this is the first time a surgery has involved reconstruction with the patient’s own bone tissue,” Dr Muendo reflects.

The surgery took place on December 1, 2024, at AAR Hospital off Kiambu Road., which the Kibiros say they chose bacause of its modern surgical facilities. “The surgery lasted eight hours – the longest eight hours of my life,” Mercy says.

When asked what made the Kibiros change their mind from travelling to India to having the surgery in Kenya, Simon explains, “Okumu was the first doctor to tell us that the leg didn’t have to be amputated. He was confident he could remove the cancer without cutting the leg off.”

Mercy adds, “There were several factors. First, the surgery could only be done in Kenya after Nathan underwent four rounds of chemotherapy. The cancer had spread to his lungs, and surgery was only possible if the disease in the lungs cleared with chemotherapy.”

Fortunately, the nodules in Nathan’s lungs disappeared after chemotherapy, making the surgery possible. When the lungs cleared, the parents say they felt much more comfortable having the surgery done in Kenya. “But Dr Okumu’s confidence and knowledge reassured us. He made us feel that he was as capable as the doctors in India. He assured us he would be able to remove the tumour entirely,” she says. Nathan now has a cast on his leg as he continues to heal. When we met in December 2024, he was pain-free and had just been reviewed. He is currently undergoing chemotherapy to eradicate any remaining cancer cells.

For the next five years, he will have regular check-ups with his doctors. “We follow a cancer patient for five years after treatment, which is when we can conclude they are cancer-free,” his doctors say.

Had the Kibiros insisted on travelling to India, Mercy now believes they would have spent a substantial amount of money. “We would have spent hundreds of thousands on travel. We estimated that we would have needed at least six months in India, with accommodation costs of around Sh10,000 per day. The treatment would have been expensive too. she adds.

Since the diagnosis, Simon estimates that the family has spent between Sh2.5 million and Sh3 million. They used their savings and raised funds from family and friends. Despite being registered with the Social Health Authority (SHA), they did not receive any funds from the national insurer to offset the costs of the surgery.

“It only paid for bed occupancy in the ward,” Simon says.

Nonetheless, Simon remains positive; “Before the surgery, we were in a very dark place. Now, I am happy and much more hopeful.”