6 - 12 December 2001
Issue No.563
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Al-Ahram Weekly Online 6 - 12 December 2001 Issue No.563 |
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Hope springs eternal
As if it were not enough to have a child suffering cancer, parents of afflicted children are forced to take on the health care system as well. Gamal Nkrumah follows their plight
Parents of children with cancer are taking a stand, demanding less talk and more action from the medical establishment. One of their persistent complaints is that they are given the run- around by doctors and bureaucrats alike. If a child shows no signs of improvement after a few months of treatment by a specialist, the patient is referred to another, thus beginning a vicious circle of referrals, endless and often harrowing visits to clinics, hospitals and various Ministry of Health departments.
A cruel disease ravages children and scars their parents for life. Will a new awareness of children's cancer spell hope for both? photo: Khaled El-Fiqi
What the families so desperately need are doctors and bureaucrats who bring them solutions, not additional problems.
There are few health care safety nets for parents who cannot afford to send their sick children to private clinics; this is especially so for parents of children suffering from cancer. Proper treatment is ruinously expensive. Cheaper alternatives add to the child's torment and rarely succeed.
First these families have to come to grips with a continual sense of loss. If it is not the loss of a life, limb, eye or the education of their sick child, it is the loss of family and friends who do not quite know how to deal with the unfortunate situation, or prefer not to. Even close relatives do not always wish to be bothered by depressing predicaments.
In many instances the illness of a child leads to the loss of a parent, usually the father. Many fathers simply cannot cope with the emotional and financial demands that prolonged and prohibitively expensive treatment for children with cancer enjoins. Many husbands simply desert their wives when the crisis becomes too intense, leaving them to fend for themselves and their sick children. Such women, desperately poor and either illiterate or poorly educated, are by that point at their wits end. Most cannot afford to hunt for jobs since they cannot leave a sick child unattended.
Strong women survive the ordeal. One such abandoned wife is Zeinab who comes from an impoverished village deep in the Nile's Delta. She lost two children to cancer and is struggling to save the life of her surviving daughter. "Ali was a lovely boy," she told me, pulling the photo of an adorable four-year-old from her tattered wallet. She did not understand much about the disease that claimed the lives of her two elder children then. She says she understands a little more about it now and that had she been a little more knowledgeable perhaps she could have saved their lives. "It is God's will," she says in resignation. Her faith in a better hereafter gives her the strength to carry on.
But Zeinab also has to deal with deep-seated feelings of guilt and victimisation. She was told by several doctors that she carried the dominant, as opposed to recessive trait, responsible for the transmission of the deadly disease to her progeny. With the realisation that the tragedy in the family was genetic, all hell broke loose. "At that point my husband left me and married another," she explained. "He got fed up with me and our sick children. He blamed me for his misfortune and said he did not have to put up with me anymore. I lost my first-born soon after," she says.
Loving, conscientious and responsible fathers do exist, of course. "I had to withdraw my son Islam from a foreign language private school to pay for May's treatment," explained Nabil, whose daughter suffers from retinoblastoma, or eye cancer, the most common form of the disease among children. "Quite an advanced stage of the disease," her doctor told me. Nabil was having difficulty coming to terms with the situation. He was on his third cup of coffee after a harrowing evening at an expensive private clinic. He was asked to cough up LE5,000 the next day in order to remove his daughter's left eye.
May had a ready and infectious smile, which he failed to respond to. She had no idea that she would lose her eye the following day. May's mother, who came across as calm, collected and long-suffering, weakly smiled back at her.
"I am a man of modest means. I cannot afford this kind of treatment. I want the very best for my daughter, but I love my other children as well. They, too, deserve a better future," Nabil said, cupping his head with his hands. He faces difficult choices. The removal of the eye is relatively easy, but reconstructive plastic surgery is difficult and sometimes ruinously expensive.
There is a close correlation between the incidence of cancer in children -- retinoblastoma in particular -- and poverty. Lack of money is the killer -- not the cancer. It is in this context that concerned individuals and groups are formulating projects to assist parents with children suffering from cancer.
The Hope and Health Oasis, one such project nearing completion, is a camp that hosts the entire family of a child suffering cancer between courses of chemotherapy. The first of its kind in the country and the Arab world, the camp focuses on providing a soothing environment and boosting the afflicted child's immunity system during a six-month period of residence.
Faiza Abdel-Razek, the treasurer of Friends of Children with Cancer, a non-governmental organisation established in 1992, explained that efforts will be made to strengthen the families because parents tend to focus on the sick children to the detriment of their healthy siblings who often suffer from emotional and psychological problems because they see their parents fussing over the sick child.
Another aspect of the project is to draw the families' attention to the nutritional needs of children with cancer because the disease negatively impacts on the immune system, an effect exacerbated by treatments such as chemotherapy. The project also aims at improving the patients and families' knowledge of nutrition.
Poor families will also have the opportunity to learn a trade, such as making handicrafts, to augment their income. The entire project is designed to allow patients in wheelchairs to move about the camp freely. A plot of land has been secured in Wadi Al-Natrun and construction is under way. A non-governmental organisation called Care With Love will train staff, Abdel-Razek told Al-Ahram Weekly. "The land was donated and the architect supervising the project has waived his fee," she added. But there is a dire need for additional funding.
The absence of a national body that assists families of children with cancer underscores the importance of establishing such a project.
The prohibitive cost of treatment and the scarcity of resources complicate matters, Ihab Saad Osman, MD, tells me. "I spend many hours trying to convince parents that removing the eye is for their child's own good," he explained. Parents instinctively want to save the diseased eye. What is especially galling is that they have to pay through the nose for the child to lose an eye. Cancer can be contained if diagnosed early. Parents sometimes procrastinate when the costs of treatment seem prohibitive. This is primarily the case when the cost would hurt their healthy children's interests.
The parents of Safaa Mazen from Palestine are faced with additional expenses for travel and accommodations as their daughter undergoes cancer treatment in Cairo. But their ordeal does not end there, having been compounded by the tense political situation in Palestine and the periodic closure of the borders by the Israeli authorities. They braved dangers and overcame all obstacles to visit Egypt regularly because they are convinced that there is hope, that Safaa is not doomed to die.
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