Hope Kagoro was born in 1962 in Kampala, Uganda. She was the third daughter in a family of eight children—five girls, followed by three boys. Her father, Bon Kavutse, was the manager of Kampala’s Mulago Hospital Orthopedic workshop. His vocation was helping disabled patients learn life skills to care for themselves and earn money by mastering a handicraft. His daughter, Loi, remembers him often reminding her to always try to see the best in people. His passion was changing the trajectory of the lives of the disabled by providing them with a trade—a livelihood—to help them be self-sufficient. His youngest daughter, Lorna, recalls, “At his funeral, when we came back from the church, the compound was filled with people in wheelchairs. That image has remained with me.”
Hope’s Mother, Rita, was an elementary school teacher who guided first grade students and instilled a love of learning within her own children. Hope’s younger sister, Loi, recalls important family values that permeated their childhood: learning was to be cherished and service to other people—particularly through caregiving—was the highest form of human connection. This message explained why the home their father built was in a constant state of ‘becoming complete’ while, at the same time, the children attended the best and most expensive schools in Kampala. Floorboards and windowpanes could wait-- education was non-negotiable. Four siblings became doctors, one an Optometrist and two became attorneys. Simply put, striving to be your best and to help others was expected.
Hope had a brilliant mind and while in medical school in Kampala, she became bored with the slow pace of her instruction. She could skip classes and still have the highest marks on her exams. One professor resented this and decided to dismiss her from the program. She appealed the decision, but one of the people on the panel later told her family that the Professor threatened to leave if they let Hope stay in medical school. Hope then decided to follow a different path. She turned her attentions to business school, and after attending college in Britain, she began facilitating trade and exports throughout the Middle East. However, in her early forties, Hope discovered a bump under the skin of her breast. She thought little of it and believed it would pass.
It didn’t pass, and eventually it became alarming enough that she went to a doctor. The news she received was enough to convince her to come home to Kampala and into the care of her youngest sister, Lorna. Lorna now was working as a Doctor in the same hospital where her father had worked. Hope’s breast cancer treatment began without delay at the Uganda Cancer Institute (UCI).
Loi, who lives in the US, heard from her sister and family in Kampala as often as their schedules would allow. The information she received was worrying. Sometimes Hope would miss chemotherapy treatments and Loi was confused about how and why this was happening. Didn’t Hope understand that chemotherapy was her best chance of beating the disease? Loi knew cancer treatments in Uganda would be less sophisticated than those available in the United States, but she had no idea to what extent that was true.
Hope’s condition worsened to Stage 4/5 Breast Cancer, and so she sought better care in South Africa. Eventually, Hope came to the U.S. to be with Loi, and receive treatment that would extend her life for several years. It was during that time that Loi became aware of the dismal state of cancer treatment in Uganda. Cancer is considered a low-priority problem in a country with a struggling economy and limited resources for fight devastating infectious diseases such as malaria and dengue fever. Cancer is a slower killer…deadly, mysterious, and often thought of by Ugandans as being brought on by demons or witchcraft. Often, due to fear and misinformation, people who have cancer wait until the situation is so dire that little can be done before they seek help. If they do seek care, there are very few hospital beds available, and those are designated for only the sickest patients.
Chemotherapy is the best option for those patients who are in the middle. They are ill but are able to receive monthly outpatient therapies. The Uganda Cancer Institute attracts patients from not only Kampala, but also the rest of Uganda and neighboring countries including Ethiopia, South Sudan, and Tanzania. The need for treatment is overwhelming and UCI is the last hope for many patients-- a beacon of hope in an ocean of despair. But, as Loi learned through her sister Hope, this highly coveted treatment has a steep cost both financially, and in delivery. However, Hope was fortunate enough to have connections. She was offered appointment times, while other patients were made to line up at dawn and wait outside on benches to receive care. There were no infusion pumps, so the chemotherapy medicine was “gravity fed” into the arms of the patients.
Chemotherapy drugs that in the US are administered drop by drop over several carefully monitored hours, in Uganda were fed directly from an IV bag into veins without any regulation.The bag would be empty in five minutes. The rush of these caustic and strong medicines into the bloodstream at that rate made a patient’s body feel like it was engulfed in flames. For those who could afford the expensive drug therapy, there was no medical choice other than to accept this terrifyingly painful treatment and to be grateful.
Hope dreaded receiving the treatment and found it beyond her conscience to accept the privilege of having her dose administered at a set appointment time. She instead showed up at dawn, and would wait until 4pm to have her dose administered, just like the other patients. While waiting for her treatment, she heard the plight of other patients. Most of them had travelled very long distances over several days. The lucky few came by bus or taxi. The rest came by bicycle, boda boda vans, lorries, or on foot.
When you are a chemotherapy outpatient at UCI, there is no bed to rest on after treatment. Only the earth and grass between the medical buildings. At that time, UCI was doing the best they could do with the resources they had, and even today there is no shelter for its patients. The treatments are expensive, and many patients cannot afford the taxis to take them home in the afternoon. Buses to the outskirts of town run only in the morning, and by the time the treatment has been administered, there are very few ways to return home. Many patients, too poor, too weary, and in too much pain to go elsewhere, simply lay down on the ground and spent the night outside the center. In the morning, if they have regained their strength, they walk a quarter mile on a red dirt roadway to where the buses can pick them up. Many patients stay on the ground outside the Hospital for days, until they felt ready to travel. They need to repeat this awful cycle each month after their treatment. Many cannot afford to continue, or simply cannot bear the draining journey home after each dose of treatment. Some, lacking funds for any travel, stay until their next treatment, living as best they can in a hospital can cannot even provide them with shelter.
The Uganda Cancer Institute never turned away those seeking treatment, but resources were limited and the number of new patients waiting for the doors to open each morning continued to grow. Dr. Orem Jackson, the Uganda Cancer Institute’s Director, worked tirelessly to improve conditions, and yet people continued to sleep outside the hospital. They waited for their chance on the out-patient bench, to feel rested enough to return home, or till their next dose of treatment. Hope herself was caught up in the cycle. She felt intensely connected to all of the other patients, and refused to be given any special accommodations. She was raised to live in service to others and, even though here condition was worsening, she would not even consider putting herself first.
At the urging of her family, she moved the United States to receive a more advanced treatment. This lifeline was not available to most of the people she shared the bench with. She vowed to beat her cancer and return to help transform the standard of care that Ugandans would receive in the future. She decided that she would go to medical school and bring back with her the resources and knowledge that her country needed. In the United States, she received cancer treatment in a state-of-the art facility with comfortable reclining chairs, drugs that were administered slowly, and with support and guidance from her doctors. This way of treating cancer greatly exceeded expectations after her treatments in Kampala. She grew adamant that she could bring this experience back to the patients fighting the same battle at home.
With this care, Hope went into semi-remission for many years. While still receiving treatment, she studied to return to medical school. Along the way, she shared her story with her sister Loi, who could comprehend the horrific experience her sister had endured. Loi, her husband Ivan Lumala, and their four children loved having Aunt Hope live with them for over five years. She fought hard to regain her good health, and she was determined to get back to Uganda and to make a difference. Her determination was inspiring to the many students and professors she worked with during her difficult path to medical school.
Unfortunately, shortly after being admitted to a medical program, Hope became too ill to continue. She lost her battle with cancer in 2008, six years after her initial diagnosis. Loi shared Hope’s story with all who would listen, and many people, who had never met Hope, were moved. This was the beginning of “House of Hope Uganda.” People who knew of Loi’s loss banded together to visit Uganda understand the hardships that those fighting cancer had to endure. On that first trip, four adults and five middle-school students went to the Uganda Cancer Institute, saw the conditions, met patients, fed them meals, and brought them water. The gratitude was overwhelming and it proved to that group that they really could make a difference.
The visitors were amazed at the way their small kindnesses were received. They felt like they were doing so little, and yet the effort was met with gratitude and joy beyond their expectations. They could do much more for these strong people. But making change halfway around the globe is hard work, with many setbacks along the way. Just when Loi had given up, her children wondered what they could do to relight House of Hope’s spark. Loi’s daughter,Mukisa, who was then in fifth grade at Open Window School in Bellevue, decided to invite her friends to help her start a charity. Those students (now in high school) began to form the core of House of Hope Uganda.