In Kenya, when a child is diagnosed with cancer, what follows is denial, blame game, fear and tough decisions. Is it witchcraft? Was the mother’s blood toxic that it caused cancer in the child? Can the child really be cancer-free?
Prof William Macharia, the head of paediatric oncology at Aga Khan University Hospital, says in Africa there are many myths about childhood cancers.
However, most do not have known causes and may be unpreventable. Some few types are hereditary, for instance, retinoblastoma (eye cancer) in children under one year.
About 3,000 Kenyan children get cancer every year and many die yet most of them could be cured. The most common types are lymphoma and leukaemia, followed by cancers of the kidney, eye and the brain.
Despite the dire situation in cancer wards, where children are brought in after years of misdiagnosis and chemotherapy drugs run out, these children have defied the odds.
Morisson Mburu, 7, Wilms’ Tumour
Little can show that cancer had burrowed deep into Morisson Mburu’s tiny body and damaged one of his kidneys. The seven-year-old has a full head of course hair even after undergoing 20 sessions of chemotherapy treatment, which causes hair loss.
Morrison was diagnosed with Wilms’ tumour, a form of kidney cancer three years ago. It started like a urinary tract infection (UTI), a common disease among school-going children.
“One day, he went to the toilet and he came out calling me to go see his urine. It had blood,’’ says Susan Mburu, his mother.
“I asked him to pee again on the corridor so that I could if it was truly blood.’’
The bloody urine gushed out, settling down on the floor as big clots. The boy did not experience pain or high fever. She took him to a nearby clinic and he was told he had UTI. He was given antibiotic injections.
“A few days later, I told him to pee again and I saw the blood, I decided to take him to another hospital. He was admitted, apparently with severe UTI,’’ she says.
Morrison started losing weight, but his mother thought it could be that his tonsils had not been taken out, a common myth in Africa.
Five days later, he was discharged from the hospital. He reached home and started experiencing pain on the right side of the abdomen.
“He said he felt as if he was being burnt, he wanted me to put my cold palm on the stomach for relief,’’ she says.
Ms Mburu took her son to another doctor who asked her to do a CT-scan. The tests showed that Morrison had Wilms’ tumour, a type of cancer that starts in the kidneys.
“We took him to Kenyatta National Hospital where they found that he had insufficient blood so he could not start chemotherapy treatment immediately. After two weeks, they did 10 sessions of chemo spread over many months and then did a surgery to remove the diseased kidney,’’ Ms Mburu says.
The surgery took eight hours and a day later, the doctors went on strike while they were still in the hospital.
“We were told to go home. I went with a child who had one kidney, a wound that had not healed and cancer. I was very devastated,’’ she says.
She decided to take the child to a private hospital for 10 more chemotherapy sessions and 14 radiotherapy sessions.
“We just did a CAT scan a few days ago and he is OK.
Lemuel Ebale, 4, Leukaemia
When Joyce Wairimu kept asking well-wishers to donate blood for her son Lemuel Ebale who had acute lymphoblastic leukaemia, she was told that the devil or a bad spirit was sucking him dry.
Others said that he had been bewitched. Others asked Ms Wairimu to stop wasting money on a disease that would just disappear on its own. Others advised her to visit a traditional healer.
Lemuel’s cancer started with a myriad of symptoms. He lost his appetite and seemed dull.
One night his mother was woken up by the dreadful sound of a child choking on vomit.
They rushed him to a clinic and they were told that he did not have enough blood. His temperature was 41 degrees Celsius.
He was transferred to Kenyatta National Hospital. The next morning, Lemuel got a blood transfusion and after the third pint, he started playing.
“I thought he was OK, but we were told to stay in the hospital for a bone marrow test,” says Ms Wairimu.
After two weeks in the ward and a battery of tests, doctors finally confirmed that he had leukaemia.
“I had never heard of acute lymphoblastic leukaemia. I thought the doctor was crazy. We were transferred to the paediatric cancer ward. There I met parents who had stayed in the ward for six months, others one year, taking care of very sick children,” says the 38-year-old.
Out of fear of the side effects of chemotherapy, which she had heard from people, she decided that her son would not have the treatment.
“I asked the doctors to discharge him so that I could take him to India. I used to sell second-hand clothes. I didn’t know much about India. I didn’t even have any money to take him to India. But I was ready to beg on national radio just to get money to save my son,” she says.
She later decided to take the child to a local private hospital. Armed with faith, minus the Sh70,000 admission fee, she started chasing for a miracle. She begged from friends, the church and luckily, she got Sh100,000 and Lemuel was admitted to the high dependency unit.
On October 20, 2017, Lemuel finally started chemo. The side-effects kicked in pretty fast.
He quickly withered — he was just skin and bones. He could not eat. His stool was blood-stained.
“I had gone to the hospital with a walking child but chemo turned my son into an infant. He used to get a blood transfusion on a Monday and by Wednesday he had none,” she says.
“Then people started talking. They said the devil was feeding on Lemuel’s blood.
But in January last year, Lemuel got better and started playing, just like a normal child.
I ask Lemuel’s mother what his son wants to be when he grows up, her eyes light up, and then she speaks with a voice loaded with expectation.
“A professor, a doctor,” she says.
At four years old, Lemuel’s voice is brave and older as if cancer has hurriedly matured him. He has fought a disease that many know little about.
Christian Mbugua, 6, Eye Cancer
As a nurse, Grace Mbugua is well-educated about cancer. But the first time she saw a white spark in her one-year-old son’s eye, she hoped it was a cataract.
“I could see a white glow in his left eye when he looked sideways, but it could disappear when he looked straight ahead,’’ she says.
But she still had the inherent worry that it could be cancer of the eye, known as retinoblastoma. A visit to the first doctor did not confirm her suspicion.
“An ophthalmologist nurse dismissed my fears. She told me it was all in my mind,” says Ms Mbugua.
Two months later after seeing the glow again, she took her son Christian to an ophthalmologist.
The doctor saw the white spark inside the left eye and after an ultrasound; he came back and told her “it did not look good.”
The cancer had holed deep into Christian’s eye. Yet when he was diagnosed, he showed no signs of sickness, just a glow in the eye.
The doctor immediately wanted the eye surgically removed to reduce the chances of cancer spreading to the brain. But friends and relatives wanted Ms Mbugua to seek a second and a third opinion and even fundraise to take him to India.
“I was racing against time to save my child. When some relatives were contemplating India or second opinion, my baby was in theatre.
“Surely why would a doctor decide to remove my child’s eye if it isn’t a desperate case?’’ she says.
Two days after the surgery, Ms Mbugua went home with a child with a gaping eye socket and spent her days ‘Googling’ about survival for retinoblastoma. Retinoblastoma has almost no effects on a child’s health; therefore spotting the disease almost entirely depends on the keenness of the parents or caregiver.
“He was still seeing clearly with that eye yet cancer had advanced to Stage Four. A tumour was on the side of the eye making it hard to see the glow,’’ says Ms Mbugua.
After the surgery, he started chemotherapy, six cycles, and 34 sessions of radiotherapy.
“What I didn’t know is that when you have a sick child at KNH, you stay in the ward until he gets better because some mothers never bring back their children to hospital if discharged after the first course of treatment,’’ she says.
“The first thing the doctor did was fix a prosthesis in Christian’s eye. I could not believe it.
“He looked so handsome. The doctor told me that there was a 96 per cent chance that Christian would beat cancer. I told him I didn’t care about the four per cent,’’ says Ms Mbugua.
After finishing chemotherapy, life threw him another curveball. He was too young to undergo radiotherapy.
Christian was one year and 10 months and radiotherapy has serious side effects on children under two years.
“I followed the oncologist to her private clinic and asked her if her child had cancer if she could wait for him to turn two.
“She asked me to take Christian to a private hospital, which had a new radiotherapy machine, whose radiation levels could be regulated,’’ she says.
Four years after the cancer treatment, I meet six-year-old Christian wearing spectacles. He does not like them. Sometimes, he removes them and fashionably places them on his forehead.
When he has no spectacles, he forgets to apply artificial tears and his non-functional eye prosthesis turns or sticks on to the eyelids and other children ask him why he looks different.
He tells them: “My mother said I am fearfully and wonderfully made.”
Collins Muchiri, 12 Leukaemia
When Dorcas Gachira first got her son’s leukaemia diagnosis, she wept uncontrollably. However, the feeling was more of relief than sadness.
She had visited many clinics in Nyeri and no doctor seemed to know what her son Collins Muchiri was suffering from. His health had deteriorated as cancer slowly nibbled on his bone marrow cells. His cheeks had swollen, he had never-ending fevers and his breathing was raspy.
“He was so sick that when we got to Kenyatta National Hospital, he was immediately transferred to Aga Khan University Hospital paediatric ward which is better equipped,’’ she says.
A few days later, the 12-year-old started chemotherapy treatment. All of a sudden, his body began to swell more, including his private parts, his mother says. After the second cycle of chemotherapy, he got worse and he was transferred to the high dependency unit (HDU).
“Blood seemed to come out of every opening. His urine had blood. His stool and saliva were bloody. His eyes turned yellow,’’ says Ms Gachira.
Most children with leukaemia, which has many varieties, require blood transfusion. Collins who has acute myeloid leukaemia stayed at HDU for one month, receiving blood.
Afterwards, his health improved and he was transferred to the general ward to continue chemotherapy treatment. After the first chemo injection, his health plunged further and he was taken back to HDU.
“It was an emotional roller-coaster. I wanted my son to live but he was in so much pain. He was barely moving. He could vomit all the liquid food fed through a pipe. I asked God to take Collins,’’ the 32-year-old mother says.
Ms Gachira began to prepare for her son’s death. Then one morning, Collins, the boy with nine lives, woke up. After a few days, his energy and appetite grew and he was discharged from the hospital three months later.