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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 individu al'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
organized 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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