…Our experiences caring for sufferers – Patients’ relatives

Leukemia occurs when the Deoxyribonucleic acid (DNA -hereditary materials) of immature blood cells, mainly white cells, become damaged in some way and causes the blood cells to grow and divide continuously so that there are too many.

Leukaemia is a malignant progressive disease in which the bone marrow and other blood-forming organs produce increased number of immature or abnormal leucocytes (white blood cells which protect the body against diseases). This suppresses the production of normal blood cells thereby leading to anaemia and other complications.

A Consultant Haematologist with the Ahmadu Bello University Teaching Hospital (ABUTH), Shika-Zaria, Dr. Lucky Okpetu, described leukaemia as the accumulation of malignant white cells in the blood and or bone marrow. The diagnosis is by examination of the peripheral blood and bone marrow aspirate by a specialist medical doctor (haematologist), he said.

Dr. Okpetu explained that leukaemia could be acute or chronic as it affected all age groups, but that it was more common in males.

The doctor said while the exact cause of leukemia was not known, some risk factors that could cause it include continuous exposure to cancercausing agents such as benzenecontaining products, ionising radiation (high tension electricity wires), as well as some anticancer drugs. People born with congenital abnormalities such as Down syndrome appear to have a higher risk, possibly due to certain chromosomal changes, familial tendencies, which means, it may run in a family, but this is rare.

The symptoms of leukaemia according to the haematologist include fatigue due to anaemia, bleeding due to low platelets, recurrent fever due to infections, bone pain, joint pain, gum swelling and bleeding, among others.

He added that because of the symptoms and signs, patients might need regular blood transfusion, noting that it was difficult getting blood because people hardly donated.

Management of leukaemia is through cytotoxic drugs and stem cell transplant, but the haematologist noted that the cytotoxic drugs are very expensive while the treatment could take months or years. He, however, urged government at all levels to help patients by making the drugs free as it was obtained in other climes like Egypt.

He also confirmed that stem cell transplant or bone marrow transplant could cure a patient suffering from leukaemia. The cost of the transplant he said ranges from N20m and above.

Dr. Okpetuthen gave a hint that, “Stem cell transplant is now done in Nigeria at a private facility located in Benin City. If government can assist the private facility, the cost of stem cell transplant will be reduced.”

On preventive measures, the doctor said some of the causes could be prevented, particularly when they were known, and therefore advised the populace to avoid exposure to cancercausing agents like benzene products, ionizing radiation, chemicals like petroleum products, fertiliser, among others. He also warned against giving birth at old age to prevent the rate of congenital abnormal babies.

According to the National Cancer Institute (NCI), 94 per cent death rate occurs among patients diagnosed with leukaemia in Nigeria, meaning that only one out of every 20 Nigerians with leukemia survives.

Managing leukaemia is stressful and keeps you living with mixed feelings and uncertainty, says Mummy Bobo (not real name), mother of a fouryear-old leukaemia patient.

She said, “Leukaemia takes away everything from both the sufferer and the family. It is really tough and overwhelming watching your child go through pain, and it is very expensive to manage the ailment.

“My son was diagnosed with leukaemia in June this year, and since then, we have been managing it. The chemotherapy section takes days, averagely one week for my son, but then there is the pre-chemo that prepares his body for the chemo, while the post-chemo sometimes takes three weeks; depending on how his body reacts to the chemo.

“The first time he had the chemotherapy, his entire system crashed with mouth sores, stomach ulcer, among others. Drugs for each cycle of chemo on the average cost about N250,000. The cost of pre-chemo ranges from N50,000 to N70,000, while the post-chemo, including running of tests, costs about N200,000; depending on how his body reacts to the chemo. Sometimes, there is need for blood transfusion. All of these do not include money for admission and other consumables, because you spend over 20 days of each month in the hospital.”

While lamenting that the ailment drains the family of its finances, Mummy Bobo stressed that there was need for government, NonGovernmental Organisations (NGOs) and Nigerians with the wherewithal to support people suffering from the deadly disease.

The story of Mrs. Janet M. Oyedele is also a pathetic one as she lost her only child to leukaemia. According to her, in December 2009, Timilehin, her only son, complained of pain on his left leg, after which he began to have bouts of malaria. She said he was taken to the Lagos State University Teaching Hospital (LASUTH) where he was diagnosed with anaemia.

Mrs. Oyedele explained that, “He took his first blood transfusion on January 4, 2010, when all his body parameters were down and he needed blood. For a while, he was fine, but then relapsed. Series of tests were carried out and doctors finally said he was suffering from leukaemia. After the diagnosis and subsequent chemotherapy at the Obafemi Awolowo University Teaching Hospital (OAUTH), Ile-Ife, doctors told me how vital it was for my son to be flown abroad for bone marrow transplant.

“Before then, we had exhausted all the money we had on series of diagnosis and tests. At a point during the battle with leukaemia, discrimination against my son at the school he was attending became intense, so much so that the management eventually ejected him despite protests from me. Then my husband delivered the killer punch by fleeing; abandoning his ailing son and his mother. I did not allow the situation to weigh me down, instead, my love for my child grew stronger.

“As advised by doctors, I sought for funds everywhere and was able to take Timilehin to a hospital abroad where he was on admission for a month. He appeared to have survived the ailment, so we returned home. It seemed victory had been achieved, but an unusual relapse occurred, sparking a fresh round of treatment. This time, Timilehin succumbed to the ailment on December 25, 2014, in my arms at home.”

Rather than allow the death of her only child throw her into depression, she decided to establish the Timilehin Leukaemia Foundation (TLF) to promote assistance for children suffering from the monster; cancer of the blood.

Meanwhile, as part of effort towards supporting patients suffering from leukaemia, spare part dealers at Agidingbi in Lagos State recently came out en masse to donate blood.

TLF, with support from the Lagos State government had in conjunction with the spare part dealers organised a voluntary blood donation exercise to create awareness on leukaemia and voluntary blood donation.

The Chairman of Agidingbi Spare Parts Market, Andy Udoka Ome, called on government at all levels to carry out massive campaigns and sensitisation exercises on the importance of voluntary blood donation, and also advocated for creation of blood banks in localities where people could easily walk in to donate blood.