Survival, and more

By Gamal Nkrumah
We are often reluctant to speak of pain, but that does not make it go away. The idea of a childhood -- ideally, the most carefree time of an individual's life -- spent in hospital is one we shun almost instinctively. Yet children do get sick, some far more seriously than others. It is for such children -- specifically, children with cancer -- that a revolutionary project seeks to make a difference.
I met Patricia Pruden on Thanksgiving Day and, speaking figuratively, she told me about how she held the proverbial wishbone. Her goal is to improve radically survival rates for children with cancer in Egypt.
A Canadian national, Pruden left her hometown, Winnipeg, in November 1997 and took up a job with Egypt's National Cancer Institute (NCI). Her work entailed setting up an integrated health care system for children suffering from cancer. It had taken Pruden two years to set up a similar programme in Canada and she realised at once that it would probably take her even longer to get the programme started in Egypt. Was that cause to hesitate? On the contrary. "I've always liked a challenge," she says.
The NCI job was originally for three to six months, but Pruden stayed on in Egypt and has never looked back. She would not have done so without the help and support of Dr Sherif Abul-Naga, secretary-general of the Association of Friends of the National Cancer Institute (AFNCI), a non-governmental agency formally established in the spring of 1998. It is his dogged determination, in great part, that saw the project through.
"We are fortunate to have a dedicated group of volunteers, who are motivated to work round the clock," Abul-Naga explained. "Advances in medical science have made it possible to reduce mortality rates among child cancer patients. We want a better future for children with cancer. Raising enough funds and acquiring state-of-the-art equipment can ensure that children who have cancer do not see their disease as a death sentence. Cancer is curable, especially when it comes to kids," he told Al-Ahram Weekly.
This is because children, perhaps surprisingly, can withstand far higher doses of chemotherapy than adults. "Older cancer patients cannot take this kind of intensive cancer treatment. Children can tolerate the higher dosages far better, and so their survival rate is potentially far higher than that of adults," Abul-Naga said.
Perhaps one of the most inspiring of the AFNCI's mandates is its commitment to build an advanced hospital specifically designed and equipped to treat children suffering from cancer, the first of its kind in Africa and the Middle East.
"The proposed AFNCI Pediatric Oncology Hospital in Sayeda Zeinab will provide comprehensive services for all children with cancer. It is the objective of the AFNCI to ensure that the new Pediatric Oncology Hospital becomes the leader in setting the highest standards of care in Egypt, Africa and the Middle East," Pruden told the Weekly.
The AFNCI selected SLAM, a US-based consortium of professional planners, architects and healthcare consultants, after a request for project planning services had been sent out and extensive research completed, Pruden explained. "In August 1999, the SLAM team began an intensive six-month project which assessed the need for a children's hospital and developed a complete plan based upon the needs of child cancer patients," she said. The government has donated a plot of land in Sayeda Zeinab slated for urban renewal. "The government provided 10,000 square metres of land situated near the historic aqueduct region of Old Cairo, which is a stone's throw away from the National Cancer Institute. It is a model for urban planning and development," Pruden said.
She spoke with passion about groundbreaking achievements: "This is the first time an Egyptian hospital is being built with such extensive healthcare planning prior to construction. The unique needs of children with cancer and their families were carefully defined and molded into the design, so that the project is responsive to the concept of family-centred care, education, and research needs," she explained. It is tempting to focus all attention on the patient, but the families of children with cancer also suffer a tremendous amount of tension and strain, she added. "Our aim is to provide family-centred care."
The AFNCI pediatric oncology hospital project is designed to treat children with cancer, support the child patients' families and ease the pain and horror of cancer treatment for children. Until the hospital is completed, however, patients will have to make do with the treatment already available, which is not specifically designed to meet the special needs of children with cancer and their families.
The children's needs usually include medical attention that is prohibitively expensive even for relatively well-off families, as well as emotional support and an education tailored to their requirements and abilities. Leisure and plenty of play, which are vital for all children, are especially crucial for their well-being. It is important for them to remember that they are not alone. They are among many children suffering from an illness of which at least three quarters of patients can be cured. Certain types of cancer more commonly strike children such as leukemia, brain tumours, and bone cancer. "The most common cancer in children is acute lymphoblastic leukemia," Pruden explained. Retinoblastoma, a malignant tumour in the eye, is another cancer that is proportionately more common among children.
Although it is difficult to specify the exact number of cases in this country, research indicates that over 100,000 Egyptian children are suffering from cancer. The statistics are alarming. One in three people is likely to develop cancer at some stage in his or her life. First of all, however, we need to put such numbers into a human perspective. Cancer may be rare among children, but those who do have the disease have an especially hard time. Not only do they suffer debilitating pain and anxiety, but the treatment is equally harrowing, both physiologically and psychologically.
But all hope is not lost. The survival rate for children with cancer in North America is 75 per cent. In Egypt, however, where approximately 4,000-5,500 cases of cancer are diagnosed annually, the equivalent rate is estimated to be between 45 and 50 per cent.
Pruden spoke of the kind of medical facilities sorely needed in Egypt that are readily available in the West. Hospitals here often have the wrong sort of beds, and vital monitoring equipment is not always available. At the moment, some children die because sophisticated medical facilities are lacking. If they had been in intensive care unit (ICU) beds they would have been supervised more closely, and problems might have been picked up earlier. In the West, too, systematic staff assessment is pivotal, which is not always the case here. At the new hospital, however, only the most qualified nurses are to be employed. "We are looking for the cream of the crop," Pruden explained.
Given relatively low survival rates, and often inadequate facilities, treatment here usually focuses exclusively on healing the body, often at the expense of the child's mental well-being. Even medical staff and the patient's family can forget that children suffering from cancer yearn for the playground just as much as their healthy counterparts. They, too, want to swing, slide and sing. They want to build castles in the sand and swim in the sea. But perhaps even more, they want to be loved and understood. Their peers, if unaware of what the disease means, could taunt sick children suffering the visible side effects of treatment, such as hair loss. The practical value of a holistic approach -- involving not only the family but also the child's schoolmates -- is therefore enormous. "We have started to talk to schoolchildren in classrooms across the city, and schools were very receptive to the idea," explained Pruden. "Sometimes a child would talk to a class about his illness so that children his age would have an idea about how it feels to be a cancer patient and how they can help cancer sufferers."
Medical progress is stunning, although hard facts do not always bring comfort to patients' families. In a decade, however, great progress has been made. In the 1950s, less than 20 per cent of children with cancer survived in the industrially advanced countries of the West. The development of a multi-disciplinary approach to cancer treatment, including surgery, chemotherapy and other medication, has done much to improve this rate. However, while advances can be breathtakingly fast in certain respects, they are also exceedingly slow in others.
Pruden, Abul-Naga and others like them are working to improve the lot of cancer patients -- especially children. There is only one way to do that, they believe: by giving time and energy to the right cause.
Last Sunday, AFNCI organised a fund-raising dinner at La Bodega, Zamalek, but so far only L.E. 25 million of the L.E. 200 million needed to complete the construction of the new AFNCI hospital.
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