Fathers and Sons

Monday
May 15, 2017
4:30 p.m.

Late-afternoon sunlight slips through the leaves of a jackfruit tree, splashing across the red-dirt playground.

Outside, motorbikes and pedestrians bustle by in Uganda's largest city. Sometimes, Kampala's noise creeps over the walls of the Bless A Child Foundation. But the playground is mostly quiet now. Just the groaning of a well-worn swing and a small boy pumping back and forth, back and forth.

Soon, the 5-year-old slides off the swing and wanders over to his father, sitting nearby. The older man moves onto the swing and carefully lifts the thin child onto his lap. As they begin to swing together, a small smile flashes across the little boy's face.

For the last two years, it's always been this way: father and son, father and son. The rest of the family waits patiently in their mountain village far to the east.

It's been a mostly good day. The boy wanted to play and so he gave his gap-toothed laugh over and over.

But it never lasts.

Suddenly, his eyes well up. He clutches his belly. The father begins to gently massage the little boy's stomach with his thumb.

Shadrach winces in pain while his father massages his stomach in the Bless A Child Foundation's sitting room in Kampala, Uganda.

Playtime ends.

Mafabi Shadrach has only one question, the same one he asks over and over. He's asked it three times already.

"Daddy, what is this inside my stomach that's making me feel pain?"

Shadrach sheds a tear while his father holds him at the Bless A Child Foundation playground in Kampala, Uganda.

His father has been to the hospital, he's talked to the doctors, he's seen the CT scans. But his answer is always the same: "I don't know."

Ten days ago, the doctors said they could leave Kampala.

So tomorrow, father and son will go home.

Tuesday
May 16, 2017
11:30 a.m.

It's nearly noon. The sun sizzles down from high in the sky. Life explodes outside the Qualicel Bus Terminal in a thick cloud of exhaust.

Hundreds of travelers surge through Kampala's narrow streets toward rows of idling buses. Each day, they shoot down rickety roads to all corners of a country slightly larger than Minnesota but with seven times its population. It's the only way most can afford to travel in Uganda, where the average worker earns about $650 annually.

The father weaves in and out of the crowd, Shadrach balanced on his hip, the boy's arms dangling around his father's neck.

Together, they knife through the clamor of chatter and honking, ignoring salesmen draped in phone chargers and tarps piled high with peanuts, their eyes scanning the jumble of buses ahead.

Suddenly, the father spots the one heading east, toward the city of Mbale. They pay and board, but the bus is so crammed, Shadrach slips onto his father's lap for the five-hour journey.

Outside the window, the capital's concrete slowly fades to a wide swath of green - bean fields, rice, mango trees. More than a century ago, struck by its lushness and life, Winston Churchill described Uganda as the "Pearl of Africa."

Shadrach stares out the window while going for a drive in Kampala, Uganda.

Today, however, this East African country is growing in a different way. The landlocked nation of 39 million, where life expectancy is 55, is a young country—one in which more than half its people are children.

But the father thinks of only one child now, his mind circling back to the news from days earlier, to the piece of paper in the plastic bag at his feet.

The doctor had sat him down before giving it to him. By the time their conversation ended, James Michael had received the worst news a father could hear.

About two years ago, June 2015, Shadrach kept tossing and turning in his sleep. The father reached over to rub his stomach. He felt something hard, like a stone.

They got no answers from the village clinic. No diagnosis from the doctors in the nearest city either. But CT scans showed a lot of swelling. Something was wrong.

The father began to worry.

"My heart was unsettled," he said.

A doctor in Mbale referred father and son to the country's finest hospital in Kampala. It was good to seek help so quickly, he said. They could still save Shadrach.

But in Uganda, there is only one hospital bed for every 2,000 people. At Mulago Hospital in Kampala, they waited in a ward for two weeks, the boy sleeping in a bed, his father beside him on a mat on the floor.

Soon, the doctors had a diagnosis: kidney cancer.

In the hospital, doctors with the Uganda Cancer Institute, the sole cancer treatment center in the country, began pumping the little boy with chemotherapy. Then they removed his kidney.

In early 2016, Shadrach got a third type of treatment, radiotherapy. But some days, the boy and his father were told the radiation machine, the only one in Uganda, was broken. They were told to come back another time.

Two months after Shadrach's treatment, the radiation machine broke down for good. The 2,000 other patients awaiting radiation treatment were then directed to the next closest machine—in neighboring Kenya, 400 miles away.

After the radiation treatment, the boy was told to go home and rest. But the pain persisted. The crying got worse.

The family was already out of money, so the father pulled his four older children out of private schools, using the money he had set aside for their future to save his youngest boy's life. Then father and son headed back to Kampala for a new CT scan.

It showed a new tumor.

Another operation, then more chemotherapy.

On May 5, the doctor handed the father a piece of paper.

Diagnosis: Wilms Tumor Relapse.

Treatment: Hospice. Palliative Care.

Medications: Morphine.

"That's when it broke my heart," the father said.

James Michael rubs the head of his son, Shadrach, while resting at the Bless A Child Foundation in Kampala, Uganda.

Brian Walusimbi, founder of the Bless A Child Foundation, says cancer is little understood among Ugandans. Many don't know children can even get the disease. Tumors often go unnoticed until they can be felt or seen, so doctors receive patients in the last stages. Even if a child gets treatment, it often bankrupts the family.

And, there's a final complication: "The biggest challenge is death."

When children die in Kampala, families want to give them a proper burial at home. So the most desperate gently pack the children's bodies in their luggage. They try to conceal the dead children in their bags with food in case they are searched. The parents must not cry, or they will attract suspicion. They know they are breaking the country's biggest taboo by loading the dead on the busses headed for home.

As the bus jolts along, the father looks down at his son. Shadrach sits quietly in his lap, sucking his thumb.

They get off in Mbale, 140 miles from where they began their day. The father finds a taxi van to take them to their village. As the sun melts lower behind the banana trees, the van winds higher into mountains shrouded in fields and jungle.

The setting sun trickles out behind the trees as the taxi pulls up in front of a mud hut.

James Michael holds his son, Shadrach, while children play outside their home in Mahululu Village in eastern Uganda.

In the village of Mahululu, not far from the Kenyan border, children scatter to spread word of the father and son's homecoming. The family hears the commotion and rushes outside. James Michael passes Shadrach to an older brother so he can scoop up his 3-year-old daughter, the one who has her brother's big, dark eyes.

Soon, the mother passes through the home's flower-printed curtain door and gives her son a gap-toothed grin. The little boy walks over and hugs her leg. She lifts him up and rests him on her hip, his arms wrapped around her neck.

In the fading light, the eyes of the father and mother meet.

Wednesday
May 17, 2017
10:30 a.m.

The earth is damp from an early morning drizzle. Clouds cling to the gray sky overhead.

Behind the family's hut, a small crowd of neighbors sprawls on the ground. They came to check on the boy as soon as they heard he was home.

The mother sits on a stool, chatting with the visitors, Shadrach on her lap. As his eyes flutter open and closed, she kisses the top of his head.

The boy hardly sleeps. If he is set down, the pain grows until it's unbearable. So all day and into the night, the parents and siblings take turns carrying him.

Soon, the mother passes the boy to his father and gets back to tying bundles of beans to dry on the sheet-metal roof. She has five other children to feed, ages 3 to 16.

Already this morning, the 35-year-old has gardened, fed the cow and prepared tea packed with spoonfuls of sugar. Last night, the parents tried to disguise morphine in the drink to dull the boy's pain. But Shadrach turned away the moment he smelled it.

Shadrach struggles against his mother, Jackline Nakowa, as she tries to give him morphine outside their house.

The doctors have increased his dosage three times, but the medicine doesn't seem to work anymore. The father thinks he'll soon need to go back to Kampala to ask for something stronger.

The mother does not understand the disease. But she sees what it has done to her son. When he burps, it smells like something inside is rotting.

Last night, the father told her what the doctors had said, what they wrote on the piece of paper.

Although the jungle village is primitive, it's rare for a child to die. There's only one recent case. Two weeks ago, a boy near Shadrach's age died of malaria. Near the end, the little boy became mute, paralyzed.

The mother often thinks of him.

But she's too busy to dwell on it for long. The family's about out of money, so if she stops working, there will be no food. She has completed many of her chores today with Shadrach clinging to her back.

As long as the family has faith, the mother believes, there's no point planning for a future they cannot control.

The father agrees. They have done everything they can. Since he got the piece of paper from the doctor, he has repeated the same phrase, over and over: "It's all in God's hands now."

Early that morning, the father's sister-in-law arrives from Mbale. A pastor, she's been fasting, asking the Holy Spirit for visions about how to help the boy.

In the family home, she holds Shadrach, the mother beside her, a few more visitors nearby. The room's only light filters in through the thin curtain door.

After a while, the pastor closes her eyes and starts to sing and then everyone joins in.

Shadrach begins to struggle in her arms. As the small room swells with sound, his whimpers quickly turn to wails.

The song rises. The boy keeps screaming, louder and louder.

The father rushes into the room and grabs him. He slips his thumb under the little boy's shirt and begins to massage his stomach. His cries grow softer and softer and then they disappear. Shadrach pops his thumb back in his mouth.

The father's sister-in-law and a pastor, Nanteza Justine, prays for Shadrach while he sits on his father's lap in the family home.

In their native Lugisu, the pastor begs for God to intervene, to succeed where the doctors have failed. In English, she shouts "Yes, Lord!" and "Thank you, Lord!" until she loses all words and starts speaking in tongues.

In a minute or two, the prayer ends. People begin to leave the room.

The father and son sit silently together for a little bit longer.

Sunday
July 9, 2017
6:00 p.m.

Evening rain pitter-patters off the metal roof as the faithful file into the family home.

Shadrach lies on a long wooden chair in the sitting room, his mother by his side. He struggles to murmur a few words, but all the father can make out are "daddy"…"mama."

For the last few weeks, the little boy has scarcely eaten, throwing up blood and a black bile whenever he tries. His skin is stretched tightly across his bones. Too frail to walk, he's asked his father to carry him. Too weak to talk, "he would just look at me and move his eyes."

And now he has asked that his family pray for him. So in the fading light in the small room, the parents and their friends and the other villagers gather around him, asking for God's healing.

As they pray, Shadrach begins to violently shake. The mother grabs him and wraps him tightly in her arms, trying to stop the shaking. But she cannot and she begins to cry.

The room falls silent. Still shaking, the little boy begins to vomit, over and over. His eyes are wide open, frightened. He opens and closes them, once, twice.

Then they close.

The shaking stops.

The father reaches out to his son.

"I touched his chest and noticed the heart had stopped pumping."

***

In the tradition of the Bagisu tribe, everyone is expected to attend the burial of one of its members. So the next afternoon, more than 300 relatives and friends, tribal members and villagers gathered across the road at the grandfather's house, where the ground was dry enough to dig a proper grave.

On that Monday afternoon, the clan members had asked the father to tell all the mourners the story of his son – from the time he first fell sick until the night before and so he did.

"It was a challenging time for my children. They all cried and I think it even got worse when they saw me crying."

Since that afternoon, the father has avoided the grave. To honor his son, he asked his wife to wash his clothes and to keep them. But to his surprise, she sometimes lets their 3-year-old daughter wear them, the one with her brother's eyes.

So every now and then, he'll see the little girl dart around a corner or flash across the road and just for a moment, for a fleeting instant, he'll think…

"I think of Shadrach a lot and I remember him when people come to visit and console me. I remember him when I see young kids he used to play with talk about him. I hear them saying ‘Shadrach died, and he was buried there!' while pointing at the grave. Sometimes, when I am seated alone, I remember the times he spent with me, especially because I was with him most of the time. I remember the things we talked about. I remember the times he never wanted me to leave his sight while at the hospital. I remember all the times he wanted me to carry him. I would tell him I was tired and he would joke with me, saying I would eventually carry him whether I liked it or not. I remember him a lot when I am in the bedroom because we slept together and I always rubbed his stomach. I also remember the times we went to church and he would never finish a service without crying because his stomach hurt. With all these memories, I just find myself crying.

"All these things make me ask why God created death, because it feels like Shadrach was just with me a few moments ago – and now he is gone."

Shadrach laughs with his father on the playground of the Bless A Child Foundation in Kampala, Uganda.