We first saw him sitting on the straw mat in his homemade brick and mud hut in rural Uganda, in a shaft of sunlight, his face passive and turned toward the warmth. Yet his tense stillness and the slightly too taut clench of his fingers betrayed the immense pain he was hiding from the mzungu doctor from the US visiting that day. Withered and weak from not eating for weeks, unable to walk on his spindly legs, his grandmother’s eyes glistened with concern and angst. What could the palliative care team do to steel her little Ibra from his continual suffering? What could she say when he asked “Grandma, why doesn’t God take me from my suffering?
As the doctor kneeled next to the boy, the palliative care team recounted the few lines of medical history they had obtained. At one year, the little boy started having problems with one of his eyes, and with no relief from drops, the doctors in the government hospital removed the eye. By age 3, the other eye was removed. No reason given. And now he had growths on his scalp that were diagnosed as cancer. “That’s all we know?” asked the palliative care doctor taking the boy’s bony fingers in hers, his skin coarse like sandpaper and speckled with a starry sparkling like flecks of mica in a granite rock. “Yes, that is all we know.”
Turning her attention to the boy’s scalp, she watched grandma peel away a thin layer of gauze revealing cotton batting stuck to the lumps underneath. With as much care as possible, the palliative care nurse moistened the cotton and teased away the fibers of cotton from the weeping lesions on Ibra’s head. With every gentle tug, a tightening grip of the boy’s hand on his chin, a tensing of facial muscles, and a muted whimper. Trying to distract him from his suffering, the doctor asked Ibra whether his friends ever come to play with him. “They used to,” he said. “We would pretend we were building with bricks, but they don’t come anymore. Now I’m mostly alone except for the thoughts in my head.” When each shred of embedded cotton and gauze had been dissected away, both the doctor and Ibra sighed as the full impact of what had laid beneath the crusty dressing was revealed. Tumors the size and color of rotten potatoes had burst through the boy’s scalp, weeping and draining, one invading from behind his right ear piercing through, pus oozing forth from what was once his ear canal.
“Ibra,” the doctor asked,” how are you?” A squeaky voice replied softly and swiftly, “Fine.”
Ibrahim was transported by the Palliative Care team to the nearby rural hospital in Naggalama the next day, his grandmother dressed in her finest clothing for the bumpy dirt road ride. Ibra, in a too loose polo shirt and shorts, with a bright orange terry cloth hat for the outing, winced with each rut in the road the van navigated and explored his surroundings with his hands. Soon, with IV in hand, he was on the pediatric ward in the corner bed, in a section removed from the other sick children. Whether the charge nurse was keeping him from the disruption of the other families and children, or protecting the other patients from the sight of this alien-like child, the palliative care doctors didn’t ask. But in his corner bed, with grandma kneeling on the floor mat at his side, he received his first dose of oral morphine, a test dose, intentionally lightly dosed, to see the response by his wasted little frame and to reassure even the palliative care team of the efficacy and safety of using morphine for this young, frail boy.
A smile. Not a wide grin but a little smile as the morphine chiseled away some of his pain for the first time. The next dose even better, and with some oral numbing medication, Ibra greedily slurped a box of mango juice after almost no food for weeks. A happy grandma. Eyes gleaming, this time with tears of happiness and not dread.
And now time for the dressing change. Pre-medicated but wary, Ibra heard the doctors come closer, the supplies gathered at the bedside. Grandma looking on with apprehension, Ibra started clutching his chin in what we came to know as his stoic pose of resolve to hide suffering and pain. The cotton teased off the rotten potatoes, shreds and threads scraped from the crevices of the tumors, Ibra’s hand gripping his chin tighter, his eyebrows furrowing with each peeling away of the stubborn cotton.
Two weeks before, prior to leaving, the US doctors had gone to the Americares Medical Outreach website as they do every year before their trips to rural Uganda. Like one of those reality TV shows where people would open a storage unit not knowing what they had won, the website would reveal what was available for the doctors to carry with them on their trip this time, different items each time they logged on. Picking and choosing from the available medications and supplies, always having to decline certain necessary items due to weight and space limits, the doctors would debate back and forth what would be most useful and would fit in their luggage. Never knowing what patient problems would be encountered on each trip, there was always a balance of guessing and gambling on what would be the most helpful on the trip. Antibiotics, diabetes and blood pressure medicines, those were easy to choose, small and definitely desperately needed, they always found their way into the doctors’ big duffels. But bulky items had to be chosen much more prudently. Do we have room? Is this too heavy? Will they be able to use it?
This year, for a reason they can’t remember, the US doctors decided to take Xeroform gauze, a Vaseline and iodine impregnated dressing, and Kerlix gauze. Never having a need for this type of wound covering on past trips, they decided to bring several boxes of it on this trip. What a lucky choice! The Xeroform dressings, heavy though they were, and the Kerlix gauze that was light and compressible enough to shove into our bulging duffle bags turned out to spare Ibra from one of the worst daily moments of his many tortured days, the dressing change. With the cotton removed, the raw scalp gently cleansed, the soothing Xeroform dressings were applied with care and wrapped in a turban of Kerlix. Crowned with his bright orange terrycloth hat, the young man’s body relaxed as he lay back in his bed to rest from the ordeal.
The next day’s dressing change was mostly free of pain, as the Xeroform was easily removed and fresh pieces were laid gently over the tumors. Barely a grimace, Ibra sucked down a mango juice while the procedure was carried out, his grandmother studying the process of trimming and fitting each piece to insure proper coverage and minimal waste of supplies. By the following day, she expertly copied the doctors’ technique and from then on managed her grandson’s daily dressing changes with loving care and without fault.
Like so many others in rural Uganda, Ibra’s cancer is so advanced that it cannot be cured, but the palliative care team is doing its best to help prevent and treat his suffering. Ibra left the hospital a week later, his pain controlled, his appetite improved, his strength returning with his replenishing reserves. The van dropped him off, and he got himself out of the vehicle’s seat, and walked through the rain, only lightly holding his grandmother’s arm, back to his mat. She carried a bag of Xeroform and Kerlix; Ibra carried the bag of plastic blocks we had gotten him so he could build the structures of his imagination.
Howard Eison MD
Randi Diamond MD
Palliative Care For Uganda