Miriam's Diary - Kampala

Introduction – On my previous trip to Kenya more than two years ago, I sent home e-mails at the end of each day recounting all that we had seen and my impressions. It was a way to empty my brain and deal with the emotional situations I encountered as we visited all of the places and people PATH supports. From HIV positive prisoners, to a nursing mothers support group, to a safe haven for children with all types of disabilities in a Nairobi slum, each left an emotional i impression.

As many of you now know, it was actually a final visit to the cancer ward at the Barack Obama children’s hospital in Kisumu that inspired the creation of what is today, Burkitt’s Lymphoma Fund for Africa.

I thought I would do the same thing on this trip – emailing back my experiences and insights, but that didn’t happen. This trip I was not observing, listening and taking photographs, on this trip I was an active player. I was doing, not watching and I went to bed exhausted every night. So no e-mails from the road, instead I am writing a “trip report” to share with you what happened with the benefit of a little hindsight.

KAMPALA, UGANDA -- March 1 through March 5 – Our Partner, UPCID Limited (a joint venture of the Uganda Cancer Institute and Fred Hutchinson Cancer Research Center) our host -- Erica Sessle, Managing Director of the Uganda Program on Cancer and Infectious Diseases (UPCID)

On our first day in Kampala, Erica arrives with Isma, the driver for UPCID, to get lunch and then on to the Uganda Cancer Institute campus. UCI is part of a larger medical campus set on a series of steep foothills connected by paths and stairways edged with deep trenches to carry off the torrential rainwater. These paths connect a wide array of buildings that include a hospital, administrative wings, clinics, chapels, kitchens, nurses’ dormitories, medical school classrooms and miscellaneous unspecified buildings.

There is no master plan or even, it appears consensus on which ways buildings should face. So the first impression is that this is a jumble of buildings built totally when need, available space and funding came together. There are patches of parking lots, cars, motorcycles, vans all vying for spaces and access. After more than two days we realize that we are seeing so much traffic whizzing by because the parking lot near the cancer clinic is also a right of way to a neighborhood situated just south of the campus.

So much hits home. When we first met Erica in Seattle we discussed how crucial it was that funds be spent in a way that made sense for Africa. Too often visitors from America or Europe see a problem and immediately envision of a new technology based solution that will “fix it”. Sadly, operational realities are left in the dust. She told us about a bright yellow mammography van (the size of a METRO bus) that, in theory allows the Ugandan doctors to perform mammograms in the field and find cancer patients more quickly. Two problems, the roads are too narrow and rough to accommodate this vehicle and its sensitive equipment and gas prices make operating the van cost-prohibitive. Here it sits in all its bright yellow glory, never having moved.

But of course we are not here to take a tour of facilities, we are here to meet patients, families, doctors, nurses and staff and get an introduction to the work UPCID is doing with funding from BLFA.

It’s an immediate immersion because our first stop is a visit the pediatric cancer ward where we are given a tour by the nurse on duty. The ward has two wings, each about the size of a portable classroom. The first wing we visit has 15 to 17 cots crammed in every available space with a narrow aisle down the center so one can walk through single file. Each cot has child with an IV drip with either chemo which is dark pink or saline or some other solution I can’t identify.   A couple of children have cardboard cones taped over one eye because, as we are told, they have swollen, weeping tumors that they are trying to protect from further injury. Others have gauze bandages over obvious tumors on their face or neck.

The bedding is a hodge-podge of what has been brought from home, no bedding is provided by the hospital. So this ward oddly resembles a sleep over with brightly colored bedspreads, blankets and sheets with cartoon characters scattered across some and nothing but a bare mattress on other beds. The medical staff later tells us that they often evaluate capacity to pay based on the "blanket test". If the child has decent bedding they feel they can ask the parents to pay something for treatment because the assumption is they must have some means.

The children each have to have a caregiver -- mother, father, grandmother or older sister. Nurses in this part of the world administer drugs, period. They do not have time to bathe, feed, bandage or dress patients. You bring a family member to do those “non-medical” tasks.   Some come from such remote, rural areas that the father must come with the child because the mother has no experience with money, traffic, medical concepts or English speakers. There are no separate quarters for the caregivers so they often share a cot with the littlest patients, or sleep under the verandah that encircles the ward and offers some shelter from the strong sun and afternoon tropical showers. They cook in a facility just behind the ward that contains a crude kitchen and bank of stall toilets.

Washing is done in basins brought from home using water from a spigot on another side of the ward. If you arrive early or later in the day you will see laundry drying on the lawn and families cooking and sleeping on any available patch of grass in the vicinity of the clinic.

The nurse takes us through and stops briefly at each bed and reels off the diagnosis – Wilm’s tumor (kidney cancer); Retinoblastoma; Kaposi’s sarcoma, acute leukemia and, of course Burkitt’s lymphoma – the most pervasive of the tumors being treated. Through a doorway is the adult side clinic, if there are too many kids they fill empty beds in the adult wing, here is advanced breast cancer, retinoblastoma, men, women, a couple of naked infants lying all in a row.   Many of these cancers are “late stage” something rarely seen back home because treatment would start so much sooner. I think every medical student should come here and see this. It certainly gives new meaning to the phrase, "this is what it means to be a doctor", dealing with ALL of this.

One of the staff points out that medical protocol suggests linens be changed frequently because these kids are immune-suppressed but that is hard to enforce because washing is done by parents in basins and there is so much else that must be done – cooking, bathing, tending and changing diapers, and, of course, they have no washing machine. I make a mental note, can we find someone who will donate a washing machine, or more precisely the cost of a washing machine because it is too expensive to ship one from here.

Erica says it’s ironic to worry about clean linens, did we happen to notice that the cancer clinic abuts the tuberculosis treatment center -- talk about a serious risk factor for immune-suppressed kids!

It is so hard being here that you have to box it up and step away. Empathy, as a mother and grandmother, imagining what it must be like to have your own child or grandchild being treated here is too hard right now. I can’t imagine having the fortitude to cope with the chaos and crowded conditions while comforting my child and convincing them that the pain, nausea, and other side-effects will ultimately be worth it. All the while being surrounded on all sides by strangers, also trying to cope.

That level of empathy is a luxury. If you let yourself give in to it you won't be able to do what you came here for and even the small part I play suddenly feels very important and I must keep my wits about me. Because the next item on the “progee” – a word Erica uses that means program and agenda is meeting the UPCID staff to sit down and discuss how they plan to make things better for these young patients, how BLFA can fit into that program of work most effectively. That ultimately is why we are here.

So I don’t stop and chat with patients or caregivers, I am afraid of making too much eye contact or letting myself feel too much right now. We will be back tomorrow with something to offer, stuffed cows and lions, soap and towels, stickers and toothbrushes. Then I can give myself to this place and these kids. I can grasp a hand, smile, make genuine human contact. If I do that now, I realize, I will only want to lock myself in the bathroom and have a good, long cry and there are people waiting to talk to me.

One important lesson I’ve learned is you must look beyond the here and now; to look to the horizon—or up a couple of hundred feet, it turns out! All day, I’ve focused on the pavement in front of me because there are so many obstacles, from broken paving stones, rain gullies, sleeping dogs, half-filled wash basins that it feels like an obstacle course. Occasionally I look around me because there are so many small, interesting tableaus of people coping with life (and death) while attempting to handle the mundane -- laundry, cooking, changing diapers, nursing all transplanted to this place often from very far away from what they know.

But I didn’t look up or I might have noticed the large building being constructed near the top of the hill behind us. It is the in-patient cancer center being built by the Uganda Cancer Institute. We are told the children in this overcrowded, depressing cancer ward we’ve just visited will be relocated to this new building within six months.  

Uganda is a religious place; people quote scriptures unselfconsciously and as naturally as we might ask, “what’s up?”. I think it must be contagious because a Psalm suddenly comes to mind, ”I will lift up mine eyes unto the mountains: from whence shall my help come? “ I cannot recall the last time I spontaneously came out with a biblical quote! However, the sheer relief that hits me, knowing that the next time I am here we will actually see little patients getting the space, privacy and modern facilities they deserve is intoxicating.

Time to move on to our meeting at the UPCID offices; a few steps from the cancer ward buildings. As Ned and I walk through Erica introduces us to the program pharmacist who has trained in South Africa, a really high energy guy who is very proud to show us the facility he is assembling to manage and store the chemo and other drugs appropriately.   Much of this, including a portion of his salary is funded with our BLFA grant to UPCID.

Ned and I are asked if we would like to attend a meeting of the senior staff. Of course we would, this is like watching a cornerstone being laid for both Ned and I, the two people at BLFA who are most involved in program funding.   People make small talk waiting for the group to gather. We must wait out a tropical rain shower, the room we are meeting in has a metal roof and the rain sounds like a dump truck is unloading pea gravel over our heads!   The agenda for this session is to review and critique the draft operational & protocol manual for the improved Burkitt’s lymphoma program we are helping to fund. It’s a real honor to participate as they sit and discuss and debate each point of protocol, patient care and record-keeping.

When they officially launch the new program in May they want to insure that it will be materially different and better for these kids. The team attending today includes the 3 of the four oncologists on staff( all trained at Fred Hutchinson in Seattle), the senior nurses, the nutritionist, the data manager, the pharmacist, Sarah who is an MPH student helping assemble & organize the manual and Erica, of course.

They all voluntarily stay until 7:00 pm on a Friday night for this session, and debate everything from patient bus fare vouchers to chemo regimens to supplementary feeding and it was all amazingly productive and collegial. For example there has been a lot of talk both in Seattle and Kampala about how to ship and pay for Ensure/Pedisure to address the malnutrition which can stop patients from getting chemotherapy treatments because there is a high risk their malnourished systems can’t handle the cyto-toxic drugs. It turns out the WHO (World Health Organization) supplies something called F100 or F75 that will work just as well and they can get at little or no cost in Kampala.

The discussion then turns to the role of the new outreach coordinator. Now I clearly see how a single gift can make a real difference. Currently the survival rate for children being treated for Burkitt’s is about 40 to 45%. Put another way, if there are 10 children receiving treatment, 5 or 6 will die. Why? There are several reasons – the patients come in too late, often at Stage 4 of the disease when there are few effective options left.   This is a very fast developing cancer and a delay of 6 or 8 weeks before seeking treatment is very serious.

The second issue is making sure patients complete treatment. Chemo is administered in 6 cycles with two week intervals between each cycle. Then there are follow-up visits to ensure the cancer has been eradicated. Each visit involves for many patient families a long, arduous bus ride from a distant rural location. They must leave other children, livestock and crops to fend for themselves as best they can while they are in Kampala. For some parents, when they see that the tumor has shrunk, they assume the child is cured and discontinue treatment, an often fatal misconception.

Other factors range from malnutrition, to complications from secondary infections to misdiagnosis. However, having someone on staff that follows up with patients and families, gets them into the clinic earlier and makes sure they complete treatment, even funding bus fare if need be, will make a major difference in survival rates, the group believes. We had a BLFA donor who was specifically interested in this aspect of the program and gave us a gift of approximately $20,000 to fund “patient follow-up”. It’s this gift that will fund the patient coordinator and his or her new follow-up program.

I finally see exactly how we, BLFA, are making a difference. We are funding key professionals’ salaries, soliciting donated medicines and supplies with our partners at Direct Relief International and providing a foundation for this work to succeed and create a truly comprehensive treatment plan.

In this moment, at this meeting, it truly feels like the most important thing I have ever done in my life. Yet it has all evolved so naturally from a promise I made to a doctor in Kisumu, Kenya 20 months ago, that six kids in the cancer ward shouldn’t be allowed to die because they didn’t have $2,000 for treatment.   It wasn’t that simple or straightforward and it took a lot of good, generous people to make this happen but here we are, doing so much more than I would have ever thought possible.

Finally, at the end of a very long day we go to visit Dr. Jackson Orem. It is his vision that built the Uganda Cancer Institute into what it is today. When I first got back from Kenya and was doing research on Burkitt’s lymphoma, because I had never heard of it, Dr. Jackson Orem’s name kept coming up in the medical literature. Clearly he is one of the foremost authorities on cancer in Africa.

Dr. Orem is glad to see us and admits when he first met with us in Seattle, it was like so many other meetings he has had with people who mean well and want to help but somehow it never materializes. He is somewhat surprised and pleased that we actually have come through for UPCID.

Then he pauses, and I swear he is looking directly at me and says, “I am a Christian and I think going forward you may wish to consider the biblical passage about “your hand to the plow…”.   It guides me, he says and I think it would be a good prescription for your organization as well. As soon as I have internet access I Google it, and it’s from the New Testament “ No man, having put his hand to the plough, and looking back, is fit for the kingdom of God.” And so ends my first day at the Uganda Cancer Institute…

Left to Right Dr. Abrahams Oboding, Erica Sessle, Dr. Jackson Orem, Ned Palmer, and Sarah Gerdts