Did you know that childhood cancer is on the rise? It is the leading cause of death in children after infectious diseases, which means that parents need to be on the lookout, writes NJOKI CHEGE

Little Raphael Okwako is a jovial little boy with bright shiny eyes and an infectious smile. He is very easy to get along with, and very camera friendly. He does not shy away from visitors and more so the camera.

It is probably this bubbly personality and headstrong spirit that has kept him going, for at just 13 months, little Okwako has been fighting with Wilms tumor, also known as cancer of the kidney.

Three months ago, his mother noticed a palpable mass in his abdomen and shortly after that, he started having fever, diarrhoea and vomiting. He was treated for an array of diseases, including malaria and pneumonia, but he wasn’t improving, until his parents decided to get a second opinion.

His mother, Linet Akumu, notes that the results of the second opinion were not good at all, and it has been a long journey ever since.

“After it was established that the mass was cancerous, he had to undergo an operation to remove the mass, which cost us Sh300,000. The next step was seven weeks of chemotherapy, which cost us Sh400 per session,” she says.

So far, the family cannot give an exact figure of how much they have spent, but nothing can be compared to the life of their dear child.

Bone cancer

It’s the same script, but different players in the Wamache’s family.

We find 14-year-old Wilberforce Wamache sound asleep in his bed at the Texas Cancer Center ward in Hurligham, Nairobi. From his parents, we learn that Wilberforce loves to play football and drive his father’s car. At 14 years, Wilberforce is fighting Sarcoma, also known as cancer of the bone. He is currently on the fifth dose of the second line of chemotherapy.

As his mother, Praxides Wamache narrates, it all began in July 2010 when he fell off his bicycle and hurt his knee.

“A few weeks later, in August of 2010, he started complaining of pain in his knee and we took him to hospital in Kakamega. An x-ray revealed a fracture and the leg was plastered.  The plaster made everything worse,” she says.

A Magnetic Resonance Imaging (MRI) — a form of scan in radiology — and a biopsy conducted at Kikuyu Mission Hospital revealed that Wilberforce was suffering from cancer of the bone and the long journey began.

He started his treatment in October 2010, when he had his first dose of chemotherapy. In January last year, Wilberforce had his right limb amputated after which he went back to school.

“When he learnt that his limb would be amputated, the first thing he asked me was if he would still be able to play football and drive. Slowly, but surely, he regained his normal life; playing football and driving the family car, until the cancer struck again,” says Wilberforce’s father, Bill Wamache.

In February this year, Wilberforce complained that his other limb was also painful. A second test revealed grave news; that all the joints in his limb (ankle, hip and knee) were also affected. The cancer had also spread to his lungs.

But the family is not about to give up hope, for his parents are still hopeful that Wilberforce will pull through and go back to playing football. After the chemotherapy, doctors will determine if Wilberforce is to go through radiotherapy.

CAUSES UNKNOWN

Dr Catherine Nyongesa, a leading oncologist at the Texas Cancer Centre confirms that childhood cancer, besides infectious diseases, is a leading cause of childhood deaths.

Says she: “The commonest cancers are leukemia (blood cell cancers) followed by Wilms tumours (kidney cancer). In older children we see Hodgkin Lymphoma, a cancer that affects the lymphocyte cells. Other common tumors are retinoblastoma (eye cancer), brain tumours, sarcomas and Burkitts Lymphoma.”

Unknown causes

By and large, the causes of these cancers remain unknown, but a few conditions such as Down Syndrome, other specific chromosomal and genetic abnormalities and ionising radiation exposures, explain a small percentage of the cases.

“For example, retinoblastoma is linked to mutation in retinoblastoma genes; Burkitts Lymphoma and some throat cancers in children are caused by EBV (Epstein Bar Virus). Children with HIV infection have increased risk of developing non-Hodgkin’s Lymphoma, Kaposi Sarcoma and Leiomyosarcoma (a type of muscle cancer)” she says.

In most cases, childhood cancers arise from non-inherited mutations in the genes of growing cells. Unfortunately, because these errors occur randomly and unpredictably, there is no effective way of preventing them. But this doesn’t mean that parents have their hands tied.

Parents can avoid early-life exposures to infectious agents, parental, foetal or childhood exposures to environmental toxins such as pesticides, solvents, or other household chemicals. You can also help prevent this by avoiding exposures to ionising radiations.

Cancer, whether at childhood level or adulthood, is bound to take its toll on the caregivers. This is why you need all the help and support you can get if and when you find yourself in this difficult situation.

Bill Wamache, father to Wilberforce, can attest to this fact.

Says he: “Childhood cancer is vey involving. It requires you to take loans and dispose of property in order to cater for the costly treatment. We have practically exhausted everything, but we are not about to give up.”

Cancer patients are delicate and in most cases, this requires you to restrict yourself to one specialist, which is extremely taxing.

DEALING WITH IT

It has been established that dealing with childhood cancer is an uphill task, but what you need to know is that it is possible for you to successfully pull through.

Dr Nyongesa advises that older children should be involved with their own cancer treatment. However, when cancer affects younger children — toddlers and those under the age of four — simply telling them that they are sick and need some medicine to get better is often enough explanation.

“For all age groups, the goal is to prevent fear and misunderstanding. Many children feel guilty, as if cancer is somehow their fault. Psychologists, social workers and other members of the cancer treatment team can be of great help in reassuring and helping them with their feelings,” she says.

Wamache also advises parents to move fast to encourage early detection in order to arrest the problem at an early stage.

“Move fast, because cancer also moves very fast. Early detection goes a long way in containing the disease,” he notes.

In such situations, family unity is of prime importance, because it creates a warm and peaceful environment for the child to recuperate. Cancer patients are very delicate and sensitive and any emotional turmoil could jeopardise their recovery.

STIGMA

Many parents with children suffering from cancer will attest to the fact that there is a lot of stigma associated to cancer. Society may fail to believe your child is suffering from cancer and instead choose to believe they are suffering from HIV.

But as Akumu notes, accepting your situation is key in overcoming this situation.

“Accept the situation, love your child as he or she is, in spite of it all. Otherwise, you will be overwhelmed with stigma and your innocent child will suffer,” she advises.

It is also important that such parents join cancer support groups to encourage and share their stories with each other.

“Watching your child go through chemotherapy is heart breaking, but you need to put up a brave face and be strong for them,” says Akumu.