The forgotten monster called childhood cancer

Dar es Salaam. When Margret Magumba saw her two months old baby boy John with sparkling eyes on one morning early this year, sad memories were rekindled of how her previous child had suffered similar symptoms and ended up being diagnosed with eye-cancer.

“I got scared whenever I saw John’s eyes with a shiny spot. The eyes looked like those of a cat. They were sparkling. His brother, Kulwa, looked the same and doctors later discovered he had cancer,’’ she recalls.

Margret, 43, a peasant and resident of Chalamaiti area in Dodoma Region, spoke to Your Health recently as she recounted her ordeal of dealing with two of her children in the family—both diagnosed with cancer.

She was blessed with seven children—all boys. And they are all alive, she says. Her husband, who is also a peasant, has exhausted all his resources taking care of last two of the boys who have been diagnosed with—retinoblastoma.

Doctors say retinoblastoma is a type of eye cancer that affects young children, especially those under the age of six. It develops in the cells of the retina—the light sensitive lining of the eye.

Sadly, John’s condition was reported at a late stage. Cancer specialists have recommended that he undergoes chemotherapy as palliative treatment. His brother Kulwa , who was also diagnosed with the same condition more than two years ago, underwent eye surgery and recovered.

Their mother explains that Kulwa has remained blind after undergoing surgery at the Comprehensive Community based Rehabilitation CCBRT in Dar es Salaam. “He was given an artificial eye,’’ she adds.

Margret says she was convinced that her last born child—John, was also being haunted by the “monster” of cancer even before doctors back in Dodoma did all the necessary tests. “There was nothing I could do other than just sit around my child and cry.’’

“I decided to take John to Dodoma Regional Hospital but the doctors prescribed eye drops and told me to apply onto his eyes twice a day for two weeks,’’ says Margreth. “But there was no improvement at all, even after two weeks,” she adds.

Upon returning to the hospital in Dodoma, doctors said that John required the attention of eye specialists. “That sounded to me like John’s problem was bigger, as I had anticipated,’’ she says. John was then referred to Muhimbili National Hospital after some reviews and medical checkups.

“After receiving information that I was to take my son to Muhimbili, I felt like the clock was ticking too fast and I lost all hopes of seeing John recover. I just thought he would also end up blind like his brother. I accepted the reality.’’

“That reminded me of the tough experience I went through with Kulwa. I had financial problems. I stayed away from the my family in Dodoma for many months. That was about two years ago, I stayed for one year at CCBRT, where he underwent surgery due to a similar condition.’’

As she spoke to Your Health recently, Margret was at Tumaini la Maisha Center in Dar es Salaam, a home for children with cancer, where she is nursing her son John, currently undergoing chemotherapy.

According to a cancer specialist for Children at MNH, Dr Shakilu Jumanne, there is a small group of childhood cancers (about 2 to 5 percent) which can run in families.

He says they are collectively referred to as cancer predisposition syndromes. However, it is easy to predict the occurrence of the conditions in other family members if there is a clear family pedigree(tree).

He says that various studies have estimated that 2500 childhood cancers occur every year in Tanzania but less than a third of this number can manage to access health facilities.

“Unfortunately, the majority of these cases arrive to health facilities when the cancer is at an advanced stage, making treatment aimed at complete cure impossible,’’ says Dr Jumanne.

For Ms Farida Saidi, a resident of Mtwara Region, her son, Annuary (5) was wrongly diagnosed with malaria at a health centre near her home—not until it was proved months later at MNH that he was actually suffering from leukemia. That was last year.

“Annuary was crying most of the time, touching his joints. I realised he had joint pains. When I took him to the hospital, a medic prescribed pain killers for him but there was no improvement,’’ says Farida.

“A week later, I decided to go back to the health centre. By that time, the condition had become worse. Annuary was very sick, crying all the time. He could not sleep at night. I could not tolerate seeing him in pain,’’ she says.

Farida was then advised to take her ailing son to the district hospital in Mtwara, for thorough checkups.

“At the district hospital, doctors found out that my son’s blood levels had gone down. I didn’t even know what was causing it,’’ she says.

“Annuary could not walk anymore,” she says. “We were then referred to Muhimbili and that’s where my son was diagnosed with blood cancer.”

Annuary’s medical records show that he has lymphoma—a type of blood cancer that occurs when white blood cells that help protect the body from infection and disease begin behaving abnormally.

According to medical sources, the abnormal cells (lymphocytes) may divide faster than normal cells or they may live longer than they are supposed to.

Lymphoma may develop in many parts of the body, including the lymph nodes, spleen, bone marrow, blood or other organs but for Annuary, it’s the blood that is affected.

A matron at Tumaini la Maisha Centre, Ms Unice Mtui, told Your Health that the government has pledged to offer free care and treatment for children with cancer as most families cannot afford the cost.

“Some of them neglect their children at this care centre due to long durations of treatment and financial challenges.’’

She explains that women, especially those from rural areas abandon their children at the center due to pressure from their partners.

“I have witnessed cases where a number of women abandon their children at this care centre due to lack of funds and pressure from their frustrated spouses.’’

She further points out that it is difficult for men to cope with the situation thereby pressuring their wives to even take their sick children back home without getting full treatment or diagnosis.

Ms Mtui explains that it is always a painful experience to witness parents that run away from their children, some who end up dying on their way home.

However, she adds, there have been outreach programmes to spread cancer awareness messages to reduce numbers of children being taken to hospital at the late stage. This is a postive move towards change.

Tumaini la Maisha children’s cancer ward complex is the specialised children’s cancer ward in Tanzania, providing cancer care and treatment free of charge.

The majority of children who are admitted at MNH are from poor families and have travelled long distances from all over country to seek for treatment.

Reports say that among challenges facing childhood cancer in Tanzania, it’s lack of childhood cancer awareness, a 3-6 months delay in seeking treatment, and lack of cancer medications for children and supplies.

In the year 2012, MNH had received new cases around 400 cases of childhood cancers. There were around 200 cases at Bugando Medical Centre while Mbeya Referral received around 50 cases (2012), according to statistics from the Ministry of Health, Community Development, Gender, Children and the Elderly.

But the number of cases is reported to be rising each year, according to experts.

Burkitt’s lymphoma (BL) or cancer of the Jaw, is a common childhood cancer affecting young children in malaria stricken areas across Tanzania, according to experts.

BL most often appears as a cancerous tumor in the jaw, face, eye or abdomen and if misdiagnosed or diagnosed too late, a child could be disfigured or die, experts says.

“This cancer is highly linked with exposure to a combination of malaria and Ebstein Barr virus infection. It is frequently seen in patients from the lake zone, mostly from Mwanza, Shinyanga and Mara regions, partly explained by high malaria transmission rates in these places,’’ says Dr Jumanne from MNH.

“Using data reported from MNH’s Pediatric Oncology ward, Acute lymphoblastic leukemia (the most common childhood blood cancer globally) is the leading diagnosis followed by Lymphoma (cancer of lymph nodes and other lymphatic tissues).

“This is then followed by Wilms tumour (childhood kidney cancer) and retinoblastoma, the most common childhood eye cancer,” says Dr Jumanne, who is an oncologist at MNH.

The oncologist furthes notes, “Despite most childhood cancers arising from genetic errors (mutations) during early life, the majority of them occur as sporadic events with less to do with familial inheritance.”

Dr Jumanne says that children with cancer in Tanzania treated at MNH come from all over the country with different types of cancer.

“We are increasingly receiving children with retinoblastoma (childhood eye cancer) from the coastal regions and Zanzibar,’’ he says. This, he says, gives researchers a hint of potential presence of yet unidentified factors that might be increasing the occurrence of the cancers in these regions.