The Ugly Ugly Face of Cancer

Everything we do in life is meant to be in pursuit of happiness, right? We work hard to earn more money so it could buy us the stuff we want, we go to those exotic holidays, not to look for the dark spot in life, but to be happy, we have terms like retail therapy which, apparently, makes a sad heart giddy with happiness. All the above is well and good, but methinks, the human heart is also designed to look for ways to feel sad once in a while - probably to tip the scales. How else would you explain the fact that, some people, like me, constantly make myself sad everyday just by the fact that I am involved in a charity that gives me more heartache than satisfaction?

For those who do not know, here is a little back ground on Hope for Cancer Kids. It was started in 2008 by family and friends of children admitted at Kenyatta National Hospital with Cancer. The aim was to have a support group, and to raise funds from friends to help pay for NHIF cover and atrocious and mammoth hospital bills. To date, HCK helps over 50 families in KNH, and there are future plans to spread to other government hospitals.

Charity should make me happy, shouldn't it? It should, except the fact that 80% of the children, due to a combination of several facts, die. True story. This is how bad it is - in the developed world, cancer survival rates amongst children is 80%. In Kenya, survival rates is 10%, meaning, every ten children who are admitted into the wards, nine of them die. How terrible is that?

I have stopped crying for those children we loose, I realized my crying does not help, but actually, I deceive myself. I might not cry physically, but my insides tear into tiny shreds every time I am informed that we have lost another one. A couple of weeks ago, we lost a little girl called Margaret. Margaret and Lucy are sisters, a year apart (9 and 10). They both had leukemia, and were both admitted at KNH. Margeret lost her battle, Lucy is doing very badly as we speak.To highlight the plight of childhood cancer in Kenya, I had done a feature for Nation's Living magazine that featured the two angels - the response was good, but we humans have a way of forgetting things pretty quickly - nobody asks about them anymore. Sometimes I wonder what the point is....

A couple of days ago, another boy I had done a feature on Passion Magazine passed on. His name is (I cannot bring myself to write was) Sammy Isenjia. Sammy is a special case, and part of the reason I am awake at 3am updating a blog I haven't touched in months. Give me a few minutes as I enlighten you on why Sammy hurts me more than other deaths;

Below is some excerpts on the feature I did for Passion Magazine. Please read on, make sure you have a hankie handy.

"Sammy Isenjia is only seven years old. He should be full of energy, running around chasing footballs and playing hide and seek in his back yard or at the estate like other kids his age, but Sammy is not like other children his age. He loves to play football, but he quickly runs out of energy and needs regular breaks. Also, Sammy is holed up at Kenyatta National Hospital Ward 3A; he has leukemia, cancer of the blood that affects 25% of children diagnosed with cancer the world over. During the interview, his mother, 27 year old Selina Mutile watches him helplessly as she narrates their story; there is little she can do to lessen her son’s suffering.

Selina noticed abnormalities in her son’s body in January 2011. “The lymph nodes on his neck were swollen, so was his stomach.” She recalls. “As soon as I could, I took him to Shika Adabu dispensary in Likoni where they diagnosed and treated him for tuberculosis.” The only problem was that there was no improvement to her son’s condition even after taking the strong TB drugs. In fact, Sammy’s woes seemed to increase as he started complaining of ear ache. “Soon, he lost his hearing, so I took him back to the dispensary.”

Selina might be unhappy about her son being misdiagnosed the first time, but she is one of the lucky ones because, when she took him back to the dispensary, they referred her son to Coast General Hospital. “The doctor on duty gave my son one look and admitted us immediately. The following day, they ran some tests, including x-rays that revealed nothing, but after a week, of which we were still admitted at the hospital, the bone marrow test came back positive for acute lymphocytic leukemia.” Why Selina is one of the luckier ones is because most children cancers are diagnosed when it is too late, but the fact that they caught it when it was still in incubation, as it were, gives her son a chance of quick recovery.

That she was lucky in some people’s books did not make it easy for her to accept her son’s fate. “I did not even know the details of the disease; it is just the fact that they mentioned ‘cancer’. I went into denial – why? Why me? Why my son at such a tender age, what had he done to deserve this?” The doctors at Coast General wanted her to immediately go to Kenyatta National Hospital for treatment, but for two days, she would not listen or even discuss her son’s diagnosis. Finally, they convinced her about the urgency of her son’s condition – the sooner she went to KNH, the better chance her son had of recovery. She did not know anybody in Nairobi, but she took the bus and asked for directions to Kenyatta National Hospital.

Sammy, who has undergone six chemotherapy sessions, was doing fine until two weeks ago when he started having serious headaches. They had to stop the chemo as they investigated the headaches and are still running tests, but the doctors have had to drain some water from his backbone to ease pressure from the brain, which gives him some relief. Unfortunately too, the chemotherapy did not seem to have worked because he still has cancer cells in his blood. He has to go through the same routine of chemotherapy.

Sammy is shielded from the enormity of the situation by his innocence, as long as he can play for twenty minutes, he is a happy boy, but the same could not be said for his mother. She is a single mother of two; her daughter is nine years old. When Sammy was baby, she separated with her husband who left her and her two young children in Ujamaa, Likoni and went back to Kakamega where he was born. They never kept in touch, and she survived by washing clothes for people to keep food on the table; she is lucky too as she gets assistance from her elder sister and younger brother. “If it weren’t for them, I do not know what would have happened to me and my children.” Laments the standard four drop out.

When her son was diagnosed with cancer, she got in touch with him and informed him. “His sister came to KNH several times to see us, but she started insisting that Sammy did not have cancer, that it was witchcraft. The family wanted us to discharge ourselves from the hospital and consult witchdoctors of their choice – I refused, especially because I could see the big positive changes in my son’s condition.” Her refusal earned her further ostracizing – she was told not to contact them under any circumstances, and that was the last she saw of anyone from that family.

Some well wishers, through Hope for Cancer Kids, an organization that works with KNH to provide National Hospital Insurance Fund (NHIF) cover for families such as Selinas, were willing to pay for her cover, but that is looking impossible by the minute. “I have never held a national identity card which I need to process my son’s birth certificate, which is mandatory before you get an NHIF cover. When I tried to get one last month, they asked me for my parents’ identity cards, but my parents are both dead, and in 1997, our house burned down with every document including their identity cards and burial permits. I have nothing. The people in id offices told me I could use my husband’s card, but I am no longer married to him and he is not cooperative. What am I supposed to do?”................END OF EXCERPTS


- In the feature, I had indicated that Selina and Sammy are lucky, clearly, not anymore because Sammy is no more. This leaves Selina with a bill of Ksh4,000,000 - yes, four million Kenya Shillings, to settle to KNH. It gets worse; it means they cannot release the body to Selina because she has not identity to proove she is the mother - don't ask, I know they admitted her but I guess red tape sets in when you are in the hospital, not before you are admitted. This also means, in three months, Sammy, along with other unclaimed bodies, will be burried in Langata is some unmarked graves, mass graves. I am terribly sad, and I am just hoping that out there, there is someone with Ksh 4,000,000 to spare....is it too much to dream?