Lemuel Ebale, 4, (Acute Lymphoblastic Leukemia)

Lemuel is four years old, but he is too mature beyond his years. Dressed in a petite combat suit, he walks up to us, stands at a distance and says. "Mum, kuja ukule" As if that’s the most natural thing that can come out of a small child.

He looks so tiny to me but his voice is brave and old, maybe cancer has hurriedly matured him. At that young age, he has fought a disease that many know little about -- Acute Lymphoblastic Leukemia (ALL).

In August last year, he lost his appetite and seemed dull. Before that he was playful and a very healthy child. The pregnancy was uneventful.

One night his mother, Joyce Wairimu, was woken up by the dreadful sound of a child choking on vomit. She woke up and found that Lemuel had splattered vomit and loose stool almost everywhere. She woke up Lemuel’s father and they started praying for their child. When he got worse, they rushed him to a nearby clinic. The doctor said Lemuel didn’t have enough blood.

His temperature had risen to 41 degrees Celsius.  They were told to take him to a public hospital. At the gate, the security guards turned them away.  The doctors were on strike and the hospital was not admitting patients. They took Lemuel back home.

“We didn’t have any money, but luckily a neighbour offered us his car and we took him to another hospital. When they did a blood test, his haemoglobin level was 2.6 grammes per deciliter (normal haemoglobin level ranges from 12 grammes per deciliter.) The lab people looked shocked. I didn’t know why they were shocked. I didn’t know anything about haemoglobin," says the mother-of-three.

The next morning, Lemuel got a blood transfusion and after the third pint, he started playing.  

"I thought he was okay, but we were told to stay in the hospital for a bone marrow test," says Joyce.

As if the news of his low blood count wasn’t bad enough, Lemuel had to battle an infection resulting from the bone marrow test. Fortunately, antibiotics cleared it. And after two weeks in the ward and a battery of tests, doctors finally confirmed that he had leukaemia.

“I had never heard of ALL. I thought the doctor was crazy. We were immediately transferred to the paediatric cancer ward. Then I met parents who had stayed in the ward for six months, seven months, others one year, taking care of children with cancer who seemed like they would not get well,” says the 38-year-old.

After two weeks of taking blood boosters, Lemuel was to start chemotherapy. Out of fear of the side effects of chemotherapy, which she had heard from people, she decided that her son would not have the treatment.

“I asked the doctors to discharge him so that I could take him to India. I used to sell second-hand clothes. I didn’t know much about India. I didn’t even have any money to take him to India. But I was ready to beg on national radio just to get money to save my son," she says.

In her church, she met a woman who had survived leukaemia.  She recommended one private hospital. Armed with faith, minus the Sh70,000 required before Lemuel is admitted to the hospital, she started chasing for a miracle. She begged from friends, the church and luckily, she got Sh100,000 and Lemuel was admitted to the high dependency unit.

On October 20, 2017, Lemuel finally started chemo. The side-effects kicked in pretty fast. He quickly withered, he was just skin and bones. He couldn’t eat. He couldn’t walk. He vomited. His stool was littered with blood.

“I wondered. I had come to the hospital with a walking child but now chemo has turned my son into an infant. They used to give him blood on Monday and by Wednesday, he had none," she says.

“Then people started talking. They said the devil or a bad spirit was sucking Lemuel’s blood. Others said he had been bewitched.  Others said that we were wasting money on a disease that would just disappear on its own. Others even advised us to visit a traditional healer,” she continued.

“I cried to God to heal the only son that He had given me. Finally, I decided to listen to the doctor and wait on God," she says.

After three months stay in the hospital with her son, they were discharged. But Lemuel was neither walking nor eating.  After more chemotherapy and radiotherapy and more chemotherapy, in January 2018, Lemuel started playing. His haemoglobin now oscillates between 12 and 14 grammes per deciliter.

I ask Lemuel’s mother what his son wants to be when he grows up, her eyes light up, and then she speaks with a voice loaded with expectation.

“A professor, a doctor," she says, her face beamed.

Standing a few metres from us, Lemuel is in a t-shirt written ‘Supreme’. He has been waiting for his mother even if his elder sisters have already picked their food. Just as his mother starts walking towards the room where food is being served, he walks ahead as if leading her, with an air of supreme authority, oblivious of his age and extremely small figure.

 

-- Written by Diana Mwango

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