Hostel for children with serious illnesses provides recovery after hospital treatment
 KAMPALA, UGANDA – Her cancer wounds smell so bad she must sleep alone in a single room.

A month ago Brenda Nakisuyi was transferred from Mulago Hospital to the New Hope Children’s Hostel (NHCH), a recovery facility funded by Kindern Eine Chance, an Austrian organization.  The Mulago treatment put her on the path to recovery and NHCH cares for her now.

Brenda is a seventeen year old with Burkitt lymphoma cancer, a form that has left her with a wound – larger than her fist – on her left cheek. As Brenda recovers, her wound hardens and falls off. It sometimes reforms, but it consistently emits a rotten scent.

The smell brings with it an undeniable stigma and that only compounds the sadness the girl must bear. Luckily, the hostel is as much about fighting stigma as it is fighting disease.

When Nakisuyi came to the hostel, she was not well enough to walk, but today she is free to move around the hostel. Although her freedom is constrained by the necessity to support her wound, she often joins other children for meals and to watch TV.

The hostel is located just behind Kawempe Home Care (KHC), a clinic that treats patients infected with human immunodeficiency virus (HIV), tuberculosis and cancer. From the entrance of KHC –  a metal gate surrounded by columns of brick – playful shouts and the laughter of young children can be heard.

The hostel is home to thirty-five children, ages one month to eighteen years. Most have cancer, and many are HIV-positive as well. Other children have degenerate diseases, such as eye masses and low melanin. Many of them are subjected to stigmas associated with their illness.

The hostel was opened in September 2016 as a collaboration between KHC and the Uganda Cancer Institute (UCI). Patients are referred to the hostel by medical professionals at the UCI. If a child needs to visit Mulago every couple of weeks or more—but is well enough they do not need admittance to Mulago—they are referred to the hostel.

Dr. Sam Guma, Executive Director of KHC, said they hope the NHCH is the first of more free hostels that will open for children with severe illness.

The children where treatment living in the hostel are from villages outside of Kampala options are limited. Many children come from the Western edges of Uganda and there are even patients from Kenya and Tanzania.

Because the hostel is located much closer to Mulago Hospital than the children’s homes, treatment is both accessible and less expensive for their families.

The children are taken to the UCI at Mulago for medicine and routine checkups. UCI is the only facility in Uganda where patients can receive some of their necessary medicine and treatments.

“Many people are actually very poor, and they may come from different parts of the country,” Guma said. “When they come here – especially children – they cannot afford to stay in town.”

Guma said it is not uncommon for patients to start the initial two-to-three-month treatment period but are forced to go home before completion because they can’t afford to live in Kampala. Sadly, these patients sometimes die because they don’t receive necessary treatment upon return to their villages.

Because seventy-five to eighty percent of childhood cancers are curable, Guma said the death rate for children infected with cancer should not be as high as it is.

Childhood associated cancers in the United States have more than a 90 percent cure rate, compared to Ugandan cure rates – which are less than 30 percent – for the same cancers, Dr. Corey Casper, Co-Director of the UCI/Hutchinson Center Cancer Alliance, said in a video published by Fred Hutchinson Cancer Research Center (FHRC ). FHRC is a facility based in Seattle, Washington that works to prevent, diagnose and treat cancer. Eight years ago FHRC and the UCI created an alliance to enrich services and treatment at the UCI.

Social worker Aloyo Palmer, who counsels the children at the hostel, said they would like the survival rate for children with cancer to be 100 percent.

In the hostel’s grass yard, two young girls play on a multi-colored swing set. On the porch, slightly older children play a game of Ludo, a board game in which players roll a die and move their tokens to the finish line accordingly. Just inside, more children watch cartoons on a TV in a dimly lit living room. Some of the children, tucked into their beds, take an afternoon nap.

Bright hand-colored pictures are displayed along the back wall of the dining room. The children are given art materials because drawing has proven therapeutic.

Palmer said they think it’s important to focus on more than the children’s physical health. She said much of their recovery in the hostel focuses on the children’s emotional and mental health.

She said this is done through ensuring all the children are engaged creatively and socially. The children also meet with Palmer to discuss their plans for the future when they are fully recovered and leave the hostel.

“The planning is just to give them hope that their life is not ending here,” Palmer said.

The emotional healing process has been difficult for Nakisuyi.

Florence Namwasye, Nakisuyi’s mother, gestures to her daughter’s wound. “She is beautiful, except for this,” she said.

Nakisuyi was diagnosed with cancer in December. Before then she and her mother had never heard of cancer.

When she was at Mulago, Nakisuyi felt isolated and stigmatized because the strong smell of her wound made staff and visitors uncomfortable. She was given less attention than other patients and was separated from the other children.

Cissy Ssuuna, a counselor at Baylor College of Medicine (BCM) located on the Mulago Hospital campus, has worked with patients who are co-infected with HIV and cancer. She said there is hope for HIV patients on treatment, but less hope for cancer patients, and when a patient has two of these life threatening conditions, Ssuuna said it’s a double tragedy.

“Even when someone has started on cancer treatment, it’s not an easy thing,” she said. “They would rather have HIV. The side effects of the cancer drugs really put them off – they think ‘OK, maybe God has forgotten us.”

It’s not coincidental that many of the children at the hostel are HIV-positive.

The relationship between HIV and cancer is direct. According to the National Cancer Institute, people living with HIV are several thousand times more likely to contract Kaposi sarcoma, seventy times more likely to contract non-Hodgkin lymphoma and five times more likely to contract cervical cancer, compared to those who are uninfected by HIV.

Moses Waiswa, a fourteen-year-old with both HIV and cancer lives at the hostel with his mother Marriam Bugeyo. Waiswa said he is often sad when he goes home to his village in the Mayuge district because he is no longer able to play football with his friends like he did before.

Now whenever he sees his friends, seven months after his diagnosis, they laugh at the rashes on his left leg that are the markings of Kaposi sarcoma.

“I’m very tired of life, but I have no option,” Waiswa said.

He is the youngest of Bugeyo’s five children and the only one with HIV. Waiswa was born with HIV after his mother contracted it from his father, who Bugeyo said was cheating on her.

After Waiswa’s father died, Bugeyo’s land was stolen from her and her children. Even if Waiswa recovered from Kaposi sarcoma, he would have nowhere to call home.

In a low voice, with his eyes fixed on a metal spoon he fidgets with in his lap, Waiswa said he worries about his future often. He wants to go back to school to become a math teacher, but there is no money for him to do so.

His mother, who financially supported their family before Waiswa grew ill, now devotes her time to taking care of him at the hostel. They have no source of income. Waiswa blames himself.

“I get so upset and sad whenever I think about it,” he
said.

Despite Waiswa’s infortunes, he smiles generously and maintains hope for his future. Again, his eyes fix on the metal spoon, but this time a timid smile sets across his face. Waiswa said he dreams of many things: playing football with friends who no longer laugh at him, having a home to stay in with his mom and wearing shoes without irritating his skin rash. He hasn’t worn shoes since his diagnosis.

Waiswa has reason to be hopeful.

Over the past fifteen years, the widespread availability of antiretroviral treatment (ARVs) has decreased the number of new HIV-positive cases, and increased the average lifespan of people living with HIV.

But despite government efforts to decrease the price and increase the availability of cancer medications for patients at the Uganda Cancer Institute, they’re still costly and – at times – unavailable due to their high demand, Guma said.

“The treatment for cancer is really good at the Cancer Institute, but occasionally we hear about stock-outs of different medicines,” Guma said. “Not all medicines are available for the patients and that presents a problem for the cancer patients as they receive their care.”

During stock-outs medications that accompany chemotherapy treatment are often unavailable. These medications help to manage pain and control symptoms.

Without cancer medications, the rate of people dying of HIV related illnesses will continue to increase, Guma said.

But plentiful medication isn’t the only solution to helping people who are living with both HIV and cancer. It’s not uncommon for co-infected individuals to have a negative reaction to the combination of their medications.

Dr. Nobel Mugisha, head of the comprehensive community cancer program at the UCI, said co-infected patients often suffer from side-effects of their medication.

“HIV drugs are supposed to lower the HIV viral load, control the HIV infection and help improve the immunity of the patient,” Mugisha said. “Cancer drugs, instead, are depressing the immunity.”

The harmful side effects are sometimes painful, sometimes stigmatizing and often both.

Waiswa’s CD4 count is low, which means his white blood cells that fight infection are sparse, an indication that his HIV viral load is not adequately suppressed by his medication. Over the past two weeks, Waiswa has developed a cough. It could just be a cough, but because of his weak immunity, he must be monitored closely.

It’s this uncertainty of Waiswa’s future that worries him and his mother. For others – such as Nakisuyi – their single illness is easier to monitor. Their treatment is working, or their treatment is not working.

In this way, Nakisuyi is fortunate. Since she was transferred to the hostel, doctors have seen improvement in her health. Her chemotherapy is working, her wound has decreased in size and she is taking no other medication that could deteriorate her health.

Although Nakisuyi is still sick, the knowledge that – for now – she is recovering may contribute to her frequent laughter, despite the pain it causes her.

Because her treatment lacks many of the inconsistencies Waiswa’s treatment has, Nakisuyi can dream of opening her own hair salon without worrying that her medication could increase her illness.