201309-survivor-githinjiNine-year-old Kevin Githinji is a jovial and active boy. He wears a woolen cap at home and in school to cover his baldhead – a side effect of the cancer treatment he is undergoing. His classmates often tease him, some forcefully removing the cap and laughing at his baldhead. Kevin has learnt to laugh it off and humorously says he is as unique as detective Kojak in the popular TV series. Kevin has learnt to cope with his disease, thanks to his doting family. His father, Joseph Runyora, narrates to MWAURA MUIGANA their struggles in search of a cure for their ailing son.

Kevin Githinji is the darling of his family. His parents, Joseph Runyora and Esther Njeri, admit they dot on him so much that initially they were apprehensive his siblings Edwin Kaniaru, Jane Wamuyu and the last-born Erick Muhoro would be jealous. Luckily, they equally dot on him and understand why their parents focus a lot of attention on Kevin, who requires special care. Sometimes, when Kevin is down and can’t go to school as often happens, his younger brother Erick, refuses to go to nursery school preferring to stay home and take care of Kevin. The two are inseparable.

Kevin was not born with any special needs. His predicament began in June 2012 when he was eight years old and up and about like his other siblings. His mother noticed a swelling on his neck and another one on the leg. She squeezed them expecting the boy to flinch but he didn’t. They were painless. She monitored them for a while hoping they would clear but they didn’t go away. Gradually Kevin lost appetite and at times couldn’t swallow solids.

This worried his parents who took him to the nearby Kiamariga Emmanuel Hospital in Nyeri for a check-up. After examination they were referred to Karatina District Hospital, where a chest X-ray and blood tests were done. The doctor recommended a biopsy (removal of a sample of tissue or cells so that they can be examined under a microscope for signs and extent of disease) from the swellings. It would cost them Kshs 6,000, money that they couldn’t afford at the time.

“We are peasant farmers with less than a quarter acre piece of land and we had recently spent Ksh 80,000 raised through a harambee to enroll our daughter, Jane Wamuyu, at Ngandu Girls in Nyeri country. Friends and relatives discouraged us from having the biopsy done using all kinds of scary myths and old wives’ tales. One parent told us her son died six months after undergoing a biopsy. Though we got the money for the procedure to be carried out, we put it on hold as we didn’t want to lose our son,” says Joseph.

The swellings would at times subside, giving the couple false hopes they would clear, and then flare up again. By November 2012, in addition to the swellings, Kevin experienced muscle and joint pains, often finding it difficult to walk. This interfered with his regular school attendance. Swallowing food became a problem and he could only feed on liquids. He was also became quite selective on what he ate, dropping out all his favourite foods. He lost weight drastically.

On December 29, 2012, Kevin developed a high fever and his father consulted a doctor friend at the Embu Provincial Hospital. He was advised to take his son to the hospital for examination. Several tests were conducted including an X-ray and an ultra sound scan of the swellings. Kevin was diagnosed with anaemia and put on drugs but the doctor still wanted a biopsy from the swellings. This time, Joseph called his relatives and friends for financial assistance and the biopsy was performed.

When the results were out, Kevin was diagnosed with Hodgkin’s lymphoma. The doctor didn’t tell the family what it was and instead referred them to a specialist at a clinic at the Kenyatta National Hospital’s Doctors’ Plaza. After analysing the results the specialist indicated that Kevin required treatment for six months. This would cost them Ksh 400,000. He also referred them to the Aga Khan University Hospital for another test.

“At the time I only had Ksh 300 on me for our bus fare back home. The specialist had prescribed a certain drug that cost Ksh 900 and again I called relatives to send me money and bought the drug in a chemist shop. The figure of Ksh 400,000 mentioned by the doctor as the cost of treatment felt like a death warrant for my son since I could not raise that kind of money. And so I held Kevin’s hand and trudged to the bus stop to take a matatu home,” Joseph relives the psychological and financial challenges he faced.

Joseph and his wife borrowed money severally from the women groups where his wife was a member, until they couldn’t be advanced any more. With medication, the swellings cleared and Kevin’s appetite was back to normal. However the swelling around the neck recurred and Joseph sought assistance from friends and relatives to raise Ksh16,500 to take him to the Aga Khan University Hospital for the test earlier recommended by the specialist. The test re-confirmed the Hodgkin’s lymphoma diagnosis and since none of the doctors clearly explained what it was, Joseph turned to the Internet from where he learnt it was a rare type of cancer.

“I didn’t know much about cancer at the time but I just couldn’t sit around and watch my son die. I planned to seek for cheaper medical treatment from public hospitals but at around that time, the doctor from KNH called me to plan for Kevin’s treatment after receiving the results from the Agha Khan Hospital. I didn’t even have bus fare to travel to Nairobi and told the doctor as much. Realising my predicament, she connected us with Cancer Care Kenya that runs Faraja Cancer Support project,” recalls Joseph.

A cancer specialist at the institution examined an emaciated Kevin who weighed only 24 kg at the time. Further blood tests, X-ray and an ultra sound scan needed to be done at the MP Shah Hospital before treatment could begin. The cost of Ksh 13,500 for these tests was another major hurdle.

“My daughter had been sent home to collect a school fees balance and here I was expected also to raise money for my son’s tests. As a born-again-Christian and a church elder, I could only hang on the hope that God would come through for us. The school allowed my daughter back on the promise I would pay later. I was able to raise Ksh 6,000 from family and friends to get the tests started and the doctor at Cancer Care Kenya scheduled to start treatment immediately after he noticed how sickly Kevin was. God had come through for us,” recalls Joseph.

The treatment plan included eight chemotherapy sessions followed by six radiotherapy sessions. The total cost of treatment would be Ksh 270,000. Joseph and his wife asked a friend to house them in Nairobi’s Embakasi estate to be close to their son as he underwent treatment.

Joseph stayed in Nairobi for a few days and left his wife to take care of their son while he returned to Nyeri to take care of the other children and also do casual work to raise money for the escalating hospital bills and also feed the family. After the first three sessions Kevin was scheduled for a session every two weeks for four months and this eased the family’s travel burden a little.

Joseph says they were lucky to get their son’s chemotherapy treatment sponsored by the Faraja Cancer Support at a cost of Ksh 25,000 per session. With treatment, Kevin’s appetite started to improve although he had a hard time after each chemotherapy session, as he often got sick with nausea. His hair started falling off and skin colour also changed to black charcoal soon after he started treatment. The chemotherapy sessions are now over and he is now undergoing radiotherapy.

“Faraja has become another home for Kevin and I wish there were more such institutions to assist cancer victims who are not financially endowed. I also wish such institutions could be more supported by the government, corporate organisations, NGOs and individuals. I recall when Kevin was diagnosed with cancer, we thought how would die and were distressed about it. It didn’t help that we had many financial challenges and my wife and I often quarreled and blamed each other. However, when we began to re-look at our relationship with a sober mind, we realised we had to work in harmony for the sake of our son, our relationship and our other children. We are happy that God continues to answer our prayers and we cannot thank the cancer center for making our son’s treatment possible,” says Joseph.

“With prayers and understanding, we’ve now grown even closer as a family. Failure to support each other especially when faced with such a crisis can be disastrous not just for the couple but also the ailing child. I thank God because my wife is calm even in times of crisis hence more reasonable and balanced. The doctors now say Kevin is doing fine and we have very high hopes that he will soon be okay,” concludes Joseph.

What is Hodgkin’s lymphoma?

This is a type of cancer of the lymphatic system. The lymphatic system is part of the immune system and includes lymph vessels that branch into all the tissues of the body. Lymph vessels carry lymph fluid that contains white blood cells. The lymphatic system also includes lymph nodes – small, round masses of tissue that are found in the neck, underarms, chest, abdomen and groin, that store white blood cells and trap and remove bacteria or other harmful substances that may be in the lymph.

Because the lymphatic tissue is in many parts of the body, Hodgkin lymphoma can start almost anywhere. Usually, it’s first found in a lymph node above the diaphragm, the thin muscle that separates the chest from the abdomen. Hodgkin lymphoma begins when a lymphocyte (usually a B cell) becomes abnormal. A person with Hodgkin lymphoma usually has large, abnormal cells known as Reed-Sternberg cells.

The most common symptom of Hodgkin’s lymphoma is a painless swelling in the lymph nodes in the neck, underarm, or groin. Other symptoms include fever, night sweats, fatigue, itching or weakness. Among the risk factors is a weakened immune system, HIV infection and a family history of the disease.

Treatment includes radiation therapy and/or chemotherapy. Chemotherapy uses drugs to kill lymphoma cells. The drugs travel through the bloodstream and can reach lymphoma cells in almost all parts of the body. Radiation therapy (also called radiotherapy) uses high-energy rays to kill lymphoma cells. It can shrink tumors and help control pain.

Published in September 2013