*They are the unknown few, eaten up by a cancerous cell and abandoned by
government. These children live in agonizing pains, reports Seun Akioye
who spent time with many of them.*
Chioma Ukanwa. She was light in complexion with a big, prominent facial
features, black silky hair which some people say was unnatural for a
nine-year-old girl. Her eyelashes were big and black adding a touch of
beauty to her full face. She had large, clear eyes and when she focused
them on an object for a long time they got moisture. When she smiled, and
not too often in the last one year, she revealed a set of strong white
teeth. It was not unusual to remark that she was a beauty queen in the
making.
On the evening of Friday June 14, Chioma’s remains were released from the
morgue at the Lagos University Teaching Hospital (LUTH), Idi-Araba, Mushin,
Lagos mainland to her parents, Charles and Kate Ukanwa for burial. The
short ceremony was conducted under an ambience of extreme grief. Exactly a
week earlier, she had lost the battle she had bravely fought for five years
against childhood cancer. The afternoon Chioma died was one of the most
shocking in the Pediatric Oncology ward at LUTH. A day before then, she had
received the life saving platlet and had been on the road to yet another
recovery. Hours after that treatment her condition deteriorated and in the
early afternoon she died. Her death was sudden and shocking.
“I still can’t wrap my hands around this. I am still in shock. I cannot
just believe this had happened,” says Dr. Nneka Nwobi, the founder of
Children Living with Cancer Foundation, a non-governmental organisation
that caters for children with cancer. For some years, Nwobi had been
involved in Chioma’s case, providing counseling to her parents and
supporting them to offset her often heavy medical bills.
Two weeks before her death, Nwobi had been involved in different activities
designed to raise money for another round of chemotherapy for her. She had
planned to go round schools to raise the much needed funds to save her
life. On May 30, *The Nation* met Chioma and her parents at the
children’s ward. They stood dutifully by her bed at the pediatric ward at
LUTH. Chioma had exhibited no trait of someone about to die; she had
responded to questions and expressed optimism to live. Her father told her
story.
It started in 2008, she developed feverish conditions, there were rashes
all over her body, then her body began to swell, every external organ that
could accommodate more fluid did. She was taken to the Lagos State
University Teaching Hospital (LASUTH) after she was referred to LUTH. She
spent three weeks undergoing diagnosis, the result was crushing: Acute
Lymphoblastic Leukemia or cancer of the blood. Her treatment began in
earnest and after five months she was discharged with a warning to continue
to come back for treatment.
“Between 2009 and 2011, she was okay, she looked fine and we thought the
worst was over so we stopped coming for the treatment. Also, our family has
incurred a huge financial burden that we could not handle so we defaulted,”
Charles said.
But in January 2012, whatever hopes the family had evaporated. The rashes
returned and the swelling began in earnest. She returned to her bed at LUTH
and doctors say her condition had worsened due to her default. Chioma had
maintained a permanent bed at the Ward D since July 2012 until her death.
*Inside the cancer ward*
Nineteen months old Esther Shedrack laid in her cot at the paedratic
cancer ward at LUTH. She had just finished a session of biopsies and had
reacted violently to it. An oxygen mask was fixed to her head and there was
a drip fixed on her hand, for several hours she stayed still without giving
any indication that life was inside her. Her head was devoid of hair and
she wore no ornament to distinguish her sex. Beside her, another baby slept
peacefully in her cot, her mother also slept on a chair beside her. Ann
remained motionless and her distraught mother, Ann Shedrack sat beside her
cot, it was evident she had been crying.
“The cancer is eating her up,” she said painfully,” then raising her voice
she added: “ My baby’s condition is making me agitated, the chemotherapy is
eating her up gradually. You go for a test, they need platelet, the next
day it is plasma and red blood cells. Even as big as LUTH is, there is no
facility for platlet , we go all the way to Island Maternity to get it and
it’s not easy, that is where the whole of Lagos go to, look at her she
needs platlets, she needs blood. Since morning I cannot even get blood in
LUTH here, I have been going to blood bank like somebody going to the
bathroom.”
Esther’s troubles began in January 2013. Her mother discovered a side of
her abdomen was hard and swollen, when touched the baby cried out in pain.
She acted fast and took her to a private paedriatic clinic in Ikeja , a
scan was done and the result brought life to a halt for her parents. She
had cancer of the ovary. Subsequently, the family was referred to the Lagos
State University Teaching Hospital (LASUTH) and finally to LUTH in March,
but her problems were far from over.
In March, Esther was operated upon to remove the tumour in her abdomen but
the doctors “found out the mass is large and is lying over critical organs
in her body”. The operation failed and the patient had to be covered up.
Part of the mass was taken for biopsies and she resumed her chemotherapy
which caused a violent reaction. Then she stopped eating and had
experienced various degrees of dehydration, currently she is being fed
through a tube passed over her mouth.
The nurses in the ward work round the clock seeing to the wellbeing of the
children, for some of them who had been there long enough, they had seen
many of the children succumb to the cold hands of death. “ Our children are
doing fine, we do lose some of them but as you can see we are doing our
best to keep them happy while they are here,” a nurse who pleaded anonymity
said.
Timothy Olaonipekun was a known face to all the wards in the pediatric
centre, most of his time was spent cheering up other children too weak to
play and who are restricted on their beds. His journey to LUTH began in
July 2012. He was struck with fever and taken to Sacred Heart Hospital,
Abeokuta where he was treated for fever and tuberculosis. When he showed
no improvements, a cocktail of tests followed, eventually on November
2nd2012, a test result said: Axillary Lymph node-High grade non-Hodgin
lymphoma diffuse large cells or Acute Lymphoblastic Lymphoma. Two days
later, he was rushed to LUTH where he underwent three agonizing, but
successful chemotherapy.
Timothy is on course for his 4th therapy but has been hampered by lack of
funds. While waiting for a miracle that would enable him complete his
treatment and return to his friends at the Baptist Boys High School,
Abeokuta where he was a senior student, he spent his time spreading joy and
happiness among the children who happened to be in the same boat as himself.
The children’s ward at LUTH has been designed to give comfort to the
children. According to Adebola Akinsulie, a professor of Paediatric
Haematology and Oncology, who is also the Head of Paediatrics at LUTH, the
ward can accommodate about 20 children, a far cry from the demand as the
hospital admits between five and six children every week.
The rooms have between three and four beds and they are kept clean. There
is a reception area with a television and a playing section equipped with
toys. All over the wall, there are paintings of animated creatures which
lightened up the ward and brought some sunshine into the otherwise grim
circumstances of the children who lived there. The paintings *The
Nation*learnt has been done by children of the American International
School Lagos
while the ward has been furnished and equipped by Children Living with
Cancer Foundation. Out of the children admitted for cancer in the blood,
only 20 percent will survive the two year treatment period.
*An underreported malady*
Chioma was one of the hundreds of Nigerian children who die each year as a
result of childhood cancer. Although, childhood cancer accounts for less
than 10 percent of children’s illnesses, but for the children who have been
afflicted and their families, the consequences are dire. Unlike adult
cancer which has received worldwide awareness and funding, childhood
cancers are largely unnoticed, statistics scarce, treatment expensive and
equipments non-existent.
In Nigeria, over 95 percent cancer actions were focused on adult cancer. In
August 2011, the Federal Ministry of Health inaugurated a technical
committee that would draft Nigeria’s position on Non -communicable Diseases
(NCD) for the United Nations High- Level Meeting on NCD which held in
September 2011. While cancer was a recurrent feature in the technical
committee action plan of reducing NCDs, childhood cancers were ignored.
Consultant Paediatric at the Olabisi Onabanjo University Teaching Hospital
(OOUTH) Sagamu Ogun State, Dr. Folasade Adekanmbi said the neglect of
childhood cancers transcends government apathy.
“ The general attitude towards dependants is awful in Nigeria, many
parents are not totally committed to the treatments of their child with
cancer, some of them will say if this child dies God will bring another
one. But if it is an adult everybody will be running around.”
But it is not just the parents who generally disregard treatment for
cancer, very few government hospitals are adequately equipped to deal with
childhood oncology. For instance in the entire South West region of
Nigeria, only the Lagos University Teaching Hospital (LUTH) and the
University College Hospital (UCH) have dedicated wards to paediatric
oncology in Nigeria. The two hospitals also get patients from outside the
South West. Consequently, resources and equipments are put under tremendous
strain at the two hospitals thereby making them unable to meet up with the
demands for drugs and other treatments.
This situation has forced many parents into seeking alternative means of
cure-often from traditional healers- with often devastating and fatal
results for the children involved. In 2010, Chioma was reportedly taken to
the village to consult herbal healers and was only returned to LUTH when
her condition showed no improvements.
*Treating cancer*
No one could pretend that treating cancer is fun or cheap in Nigeria and
Dr. Akinsulie was not about to start. According to him, cancer can affect
any part of the body but the most common are cancer of the blood and the
kidney. The treatment for the two differ in time and cost, while kidney
cancer can be treated in six months and has a survival rate of about 80
percent, treatment of leukemia could prolong for two years with the
survival rate hovering between 20-30 percent.
Treating cancer is both emotionally draining and expensive. For Muyiwa
Olaonipekun, father of Timothy, a cancer patient, the one-year experience
has left him drained both financially and emotionally. “My wife died in
April last year just after that this sickness began, the money left by my
wife has been expanded on treating my son. I have had to go seek help from
my old school association. Till now, we have spent up to N2million and we
are on the 4th course of the chemotherapy, we still need N2.5milllion and
we have less than N50,000,” Olaonipekun said.
His work has suffered too. Since the sickness began, he has abandoned his
business and took up the full time job of sitting by the side of his son.
He slept each night on the floor by his son. This is no mean task for the
floor is bare and hard. “ It is the Lord that is keeping me strong,” he
said with a smile, clutching a tiny bible to illustrate his belief in the
supernatural.
Esther Shedrack, though has spent just a few months in the hospital already
raked up about half a million naira in hospital bills and the treatment has
just commenced. Her mother, a caterer has given up her job and has
exchanged her bed for the cold floor of the hospital ward. She has also
added another profile to her new occupation: endless tears.
“ I feel agitated all the time when I look at my child. There is no
assurance for kids how much more adults and we call ourselves freeborn. We
are all strangers in our fatherland that is why I don’t blame those who
leave this country for places like Ghana,” she lamented.
Charles Ukanwa said he had spent more than N5million treating his daughter
before she finally gave up the ghost, a transport driver by profession he
said he has tried his best to raise funds for the treatment of his child.
But according to some hospital sources, the hospital staffs have been
responsible for the upkeep and treatment of Chioma for a long time after
the father could not come up with any more fund. He was still looking for
about N20million to fund her treatment in India when she died. The mother
who was a full time housewife had become a full time nurse always by the
side of the child until the bitter end.
Prof Akinsulie said: “For the family that has one case of cancer, its
total. You discover you are spending N2million-N3million and how many
families can afford that? A family that cannot make N100, 000 a month will
need to cough out N300, 000, a month for treatment, they sell the
properties and in six months they are poor. The thing spreads because the
other children cannot feed well, sicknesses set in, unfortunately, there is
no guarantee the child would survive, and it can be very devastating.
Sometimes treatments can be up to three years and it may cost about
N5million,” he said.
To survive the crippling costs of treatment, parents have devised several
means of raising funds which include going cap-in-hand to corporate
organizations, media and others just hit the streets, going to the motor
parks and churches. One of such parent whose child is now late told *The
Nation* after an agreement to protect his identity: “ I was desperate, I
sold my car and all my properties, if someone was willing to by my cloths,
I could have sold them. I had to go to the streets, it was painful and
shameful but I had no choice. To make it worse, I did not raise N50, 000
before my son died.”
But if the scheme currently being worked upon by LUTH comes to fruition,
this agonizing search for funds may come to an end. According to Akinsulie,
the hospital management is currently trying a new campaign to involve
millions of Nigerian donating a fraction of their income monthly towards
the Save the Cancer children fund. A paediatric hospital called St, Judes
in the USA, it was learnt is ready to partner with LUTH to raise more funds
if the Nigerian partners can kick-start it.
“The aim is to get small money in large numbers so if we have one million
Nigerians donating N100 per month we would have about N1billion to play
with and we can give quality treatment for the children for free. Our
partners in the USA are ready, they just want us to run this thing for like
two years, we are appealing to Nigerians to help, it doesn’t have to be
your child,” Akinsulie said.
*Life saving platlets*
The cause of about 90 percent of the deaths from childhood cancers is laid
sorely on scarcity of platlets. According to one of the nurses at the
children’s ward, what many children are waiting for are platlets but while
waiting many succumbed to death.
“There is this crisis of platlets here, it has been hell getting it so we
start to look for it all over the place. Here in LUTH, it costs N5,000 but
outside in the private laboratories it is N17,000,” Olaonipekun said.
Ann Shedrack said she has been able to secure some platlets at the Island
Maternity on Lagos Island which is where most of the people needing the
life saving blood get it from. The LUTH management did not deny there is
shortage of platlets in the hospital; neither do they deny many children
have been lost due to that shortage. So what could have caused this
scarcity?
In a bag of blood, there are many components like the red blood cell and
platlets. Those needing blood transfusion do not need all of these
component so there is a separating method using a machine called Cold
Centrifuge for blood bag separation. This is how it works, a blood bag is
placed inside and the machine separates the different blood components. So
a patient does not need to get a full bag of blood if he doesn’t need it.
But it is this machine that would separate the platlets for use by the
children that is scarce. Without the platlets, children undergoing
chemotherapy will die, it is certain and many have died.
Only LUTH and UCH have a cold centrifuge machine and all the cases in the
South West are directed to these two institutions, which puts a lot of
pressure on the equipments. As a result the machine is overused and it
malfunctions, this is the exact case with LUTH.
Frustrated and upset parents then begin to patronize the ‘black market’.
But that also has its dangers as many unscrupulous sellers wanting to make
maximum gain mix serum with the platlets. The results could be devastating
as seen in the case of Chioma.
“They got the platlets outside LUTH and there should be a toxicology test
carried out on it, the thing is that one bag of platlets in LUTH is better
than six bags outside. I do not know if the girl reacted to the platlets, I
am also not sure of the source either,” Nwobi said.
The problem is replicated at all the teaching hospitals. At the OOUTH
Sagamu, sources said even though it does not have a dedicated paeditric
oncology ward, it nonetheless has the capacity to get platlets anytime it
is needed. “We have a professor here that has connections at LUTH, so we
always get it when we need it. We are also in the process of establishing
our cancer ward and in two years time we should be able to do that so that
we can fully treat our patients.”
According to Akinsulie, the problem of scarcity of platlets could be solved
if the hospital can get the machine. A single machine that is capable of
separating four bags of blood cost only N6million while one that can
separate between 10 and 12 bags of blood cost N10million.
“We are appealing to those with human kindness to help us purchase these
machines which are so vital to the treatment of these children,” Nwobi said.
“These children do not have to die needless deaths all the time, the
government can fund the purchase of this machine and highly subsidize the
treatment of Paediatric cancer. If corruption is eliminated in governance
that money can be channeled into treating those with cancer. Even Somalia
has made tremendous progress, why can’t we curb corruption and save the
children,” a hospital management staff said.
“I once spoke to a state government and I was shocked when they said the
money they will use to treat one cancer patient would be used to treat
5,000 dieahoreah or malaria. That is the way our government thinks,”
Nwobbi recounted to *The Nation*.
*Creating Awareness*
By 2002, Nneka Nwobbi has seen enough inside the horrid walls of caner
wards at the LUTH; she had seen many children die from childhood cancer due
to lack of financial resources to treat the disease or from sheer apathy
from the parents. She, therefore, decided to embark on an adventure such
that would attempt to save the lives of some of the children. She founded
the Children Living With Cancer Foundation (CLWCF).
The organisation she founded has gone ahead to provide services to these
children some of which include: Total or partial coverage of expenses
related to chemotherapy; support with medications; overseas travels when
needed; counseling for families and patients; creating awareness about
childhood cancers.
Nwobbi has worked with many of the patients at LUTH, a week before Chioma
died; she has been involved in the campaign to raise funds for her. Her
past chemotherapy has been partially funded by her organization. The
paediatric oncology ward had been furnished and equipped by her
organization. Most of the parents come to her for chemotherapy medications
which she gave free of charge. Her success stories have been more of kidney
cancer than leukemia. “We have had success stories mainly with kidney
cancer. We have what we call save 10 projects, looking for sponsors at
least to treat 10 children with the disease. Not as costly as leukemia,
roughly about N2 million for treatment,” she told *The Nation* in her
Anthony Village, Lagos office.
Nwobbi believes that childhood cancer doesn’t have to be a death sentence.
“ The cancer is curable if the children are brought in early enough to
start treatment and that is why awareness is involved. Parents need to know
the signs to look for in their children.”
She has therefore devised the SILUAN method. This method involves Seeking
medical help for persistent symptoms, check for white sports, squinting in
the EYE, looking for LUMP in the abdomen and pelvis and other parts of the
body, reporting UNEXPLAINED fever, weight loss and appetite, Aching bones
and joints should be reported and NEUROLOGICAL change in behavior, balance
and gaits in children should be reported.
But one of the factors inhibiting the work against childhood cancers
surprisingly is the attitude of the parents. Many parents simply refused to
believe their wards may have cancer. “There are several cases where the
parents have simply refused to believe in the doctor’s diagnosis,” she said.
The refusal of the parents to believe in cancer have had devastating
consequences for the children who are caught in the middle of this
unbelief, a situation which has led to the death of many of them. Closely
following this is the belief in the supernatural. “When the after-effects
of the chemotherapy start to occur like the loss of hair, many parents are
afraid and they say this cannot be cancer again, some evil spirits must
have been responsible, so they stop coming for treatment and take the
children to the village. Even Chioma went to the village that was when she
defaulted. Unfortunately, when they return to the hospital it’s always too
late,” Nwobbi explained.
It’s another week at LUTH and five more patients will join the ones who are
lucky enough to be alive, none of the doctors could guarantee which of them
would survive, but what they can assure is that they will be needing
finances in the millions. Maybe few can afford it many none can, except
kind hearted Nigerians come to their rescue. Ann Shedrack and Muyiwa
Olaonipekun are appealing to kind hearted Nigerians to save their children.
Donations are solicited through the following accounts: Muyiwa
Olaonipekun, Stanbic IBTC Bank, Account N0: 0005233079
*Box interview*
*Why we lose many children to cancer-Prof. Akinsulie, Head Paediatrics LUTH*
*How frequently do we have the cases of childhood cancer and what are the
various forms it takes?*
Cancer is just about one percent in children’s health problems. But there
has been a slight increase in some of them like cancer of the blood, called
leukemia; we have so many cases here because we have referrers from all
over South West. For the family that has one case of cancer, its total. But
when we consider it among other diseases, it’s still low. For those who
have, it can be devastating for the family.
Cancer in children if presented early is curable, but we need to educate
the parents on some of the forms cancer takes in children. When flashes are
coming in the eye of the child it could be Retino Plastoma; when the tummy
is growing more than normal especially when you can feel something hard ,
it could be a cancer of the kidney, likewise if any other part of the body
is hard. It is only the cancer of the blood that does not give us a lot of
signs, but you will still notice the child feeling tired, unfortunately a
lot of doctors will be treating malaria instead of looking at the blood.
When the cancer is in the blood, it is already all over the body because
blood goes all over the body and the more they delay the more damage it
does to the body organs, but cancer of the blood can also be diagnosed
early.
Fortunately, many of our doctors in private hospitals also know enough to
check the blood for signs of cancer. Most of these things are diagnosed
early in advance countries but are picked quite late here, but there are
some cancers that are quite merciful so to say like cancer of the kidney
called nefroblastoma. It must take a careless person to have this cancer
going to many places in the body before they come for treatment. Some
cancers start as a solid tumor, but our people will apply Robb and pray,
instead of coming straight to the hospital.
You need to see some of our children, one has the cancer of the jaw, it was
huge as a football but now she is looking almost normal because some
organizations were able to donate for her. She had almost five operations. *
*
*What is the most common type of cancer that you have noticed in Nigeria?*
We usually like to separate the one that affects the blood and the solid
one. In the blood category, the most common is Acute Lymphoblastic Leukemia
(ALL). The commonest solid one is Wilems Tumor. There are others too that
are common, retino plastoma.
*What are the causes of childhood cancer?*
In most cases we don’t know but from research, we know some viral infection
and malaria are associated with cancer of the jaw, if you are exposed to
heavy radiation, they can develop cancer, even the radiotherapy that we use
in curing cancer, if you are exposed to it for long, you might develop a
secondary cancer. Some drugs taken by mother can affect the baby, but this
is less than five percent of the causes. But to be honest, 90 to 95
percent of the time , we don’t know the causes, it occurred spontaneously.
Occasionally we know some abnormalities in parent; genetic abnormalities
too can lead to some cancer. The good thing is that the signs are there, if
you are the type that would approach a doctor early enough you stand a
chance to cure it. For the cancer of the blood, the child can be bleeding
and weak. It also affect their ability to fight infection so they can have
fever, these are the signs of the other normal ailments so if your child
have this sign and its not responding to the usual drugs you must come in
to the hospital.
*How much does it cost to treat these cancer and for how long?*
On the average we can treat them for upwards of two years especially cancer
of the blood. Those with cancer of the kidney can be treated in six
months. But you discover you are spending N2million-N3million and how many
families can afford that? A family that cannot make N100,000 a month will
need to cough out N300,000, a month for treatment, they sell the properties
and in six months they are poor. The thing spreads because the other
children cannot feed well, sicknesses set in, unfortunately, there is no
guarantee the child would survive, and it can be very devastating.
We also do radiotherapy for leukemia for as long as two to three years, if
you stop the cancer comes back, for the first 3 months they must be in the
hospital but after that they need to come to the hospital at intervals and
we give treatments for the next three years, the cost of it may be up to N5
million.
*How is the hospital helping regarding funding this treatment?*
What we need is education. Another thing we need is to treat it free; it
is possible. If every Nigerian is contributing N100 naira per month, we
will have almost a billion naira to use for treatment in a month. It is
awareness, people need to start donating freely, these children will come
and we will treat them free, we can give them the best of treatment.
But if people can donate just a tiny fraction of their income, something
they will not notice, we can call it friends of leukemia or friends of
children living with nefroblastoma etc, the money can be managed by an NGO.
We have been going to companies, which can donate like N10, 000 a month and
the more people buy into the idea the bigger the fund, we can buy more
equipment. St Jude’s hospital in the United States is promising us that if
we can start and run it well, we can become an affiliate and more funds
will come in. In that hospital, they admit hundreds of children with cancer
every day, they come all over the world and they are treated free. With a
facility like that why won’t the children come in early?
If you say I want to be donating N200 a month for the children living with
cancer, this project will move ahead, the group in America, wants us to
start running the free donation project for at least two years so they see
that we have capacity to manage big funds. But also we will appeal to the
government to make the treatment free or subsidize it heavily. It will be
wonderful if it is on the National Health Insurance Scheme, (NHIS).
*How many children do you admit here weekly?*
Here we see between five to ten children every week but our ward is still
small for them, our ward is for 20 patients and its always filled up, so
most of them are out-patient.
*There is so much noise about platlets, how important is it and why is it
scarce?*
Now platlet is what prevents us from bleeding. If the child bleeds in the
brain it is instant death so they need the platlet. In a bag of blood there
are different components and platlet is one of them. A patient that needs
blood may not need platlet or some other components and we would need to
separate what he needs from what he does not. The machine we use for that
separation is called cold centrifuge for blood bag separation. We have just
one machine at LUTH and I think there is another one in UCH. That is all
for the whole South West. Our own here is overused because we are not the
only one using it, it is not available all the time.
The children need platlets during Chemotherapy because they can lose a lot
of blood and if it gets to the brain the child dies .We lose a lot of
children just because we don’t have the platlets. That is one big appeal I
am making to the people to please help us with the machine that can help us
separate the platlet. A moderate one is 6 million, if we can get two or
three machines in this hospital it will save lives.
*What are the chances of survival for cancer patients?*
The prognosis for Leukemia is not encouraging. It is just about 20-30
percent that can survive two year. But for cancer of kidney, it could be
as high as 80 percent, if they come early.
