The morning was announced with a torrential downpour that began well before sunrise with a deafening clatter on the tin roof as if thousands of marbles were striking it in succession. The rain continued as we all had our coffee and tea while trying to decide the exact mode of transportation to the clinic – would we drive the short distance to remain somewhat dry or tempt our fate during a short pause in the deluge. Rivulets were launching off the roof onto the rock barrier below designed to prevent erosion and flooding that was clearly doing its job despite the continued onslaught of precipitation. Amazingly, these are not the monsoons, but merely a taste of what’s to come over the following months. Thankfully, the rain let up just before our departure and allowed us to successfully reach the clinic before becoming waterlogged.
The weather will often dictate how the morning goes in regard to the flow of patients as the main road to FAME can easily turn into a river of mud with little difficulty, and although passable, it is not the most conducive for a morning jaunt without some level of trepidation. And considering that many patients either walk, ride a piky piky (motorcycle taxi) or a take a bijaji (a small contraption that is half car and half motorcycle), all modes of transportation that would cause anyone to think twice about trying to make it to the doctor here. Given all of this, we usually expect the clinic to be quite slow on these mornings.
The morning was quite soggy and it rained off and on. Luckily we had some patients showing up for us, though, and it was back to business one they were able to drain “Lake FAME” in front of our clinic which wasn’t necessarily prohibiting us from seeing patients, but would have become a quick breeding ground for mosquitos had it remained any longer than it did. We were able to sit through morning report and most of rounds which is something we don’t get to do on most mornings, except for Nan, who has been rounding with the ward team daily to follow up on her pediatric patients. She has been an incredible help to FAME in this regard as they have so many pediatric patients here on a regular basis that include not only their premies, but also more general pediatrics with asthma and similar problems.
Ståle Anda is a Norwegian gentleman who has been here for many years living in Mto wa Mbu and who has an orphanage where he often takes in neurologically impaired children or helps Maasai families whose children have these problems. I’ve written about him several times before when he has brought children with old poliomyelitis, muscular dystrophy or epilepsy. Today he brought two patients for us, the first who had epilepsy and was a situation of converting them from a medication we no longer have a supply of here to another medication that we do.
The second child was far more interesting and, in the end, problematic. Paskalina is a 22 year-old Down’s syndrome patient who we hadn’t seen before, but had been admitted to FAME in January with a sore throat and was found to have a white blood cell count of 112 thousand incidentally. They were told that she most likely had leukemia and should see a hematologist at KCMC where they subsequently went and were given a provisional diagnosis of AML, or acute myelogenous leukemia. This is a blood cancer that is seen in a higher frequency of Trisomy-21 patients and related to the extra chromosome they have similar to many other disorders that we commonly screen for in these patients. This certainly wasn’t a neurologic problem, but since we have seen many of Ståle’s patients in the past, we offered to see Paskalina and, besides, we had the only pediatrician for miles around whose knowledge on this subject far exceeded anyone else’s here.
Paskalina is a delightful person who is functioning at a four year-old level is just a sweetheart. She doesn’t like seeing doctors and was very resistant to being examined, but quickly warmed up to Nan whose style and empathy would put anyone at ease in short order. She found no associated physical findings on her examination related to the blood cancer and she continued to look incredibly well. Unfortunately, when we checked her blood counts, her WBCs were still elevated at 68K, meaning that this was definitely leukemia, though we couldn’t confirm whether we were dealing with AML or ALL (acute lymphocytic leukemia), which would make a difference in the prognosis and whether they could be successfully treated. Her blood smears were sent to the US by email and we heard back rather quickly that it could not be differentiated between the two on the smear and would require flow cytometry, a test that is only available currently in Dar es Salaam at Muhimbili Cancer Hospital where all of these patients are treated in Tanzania.
To make the trip to Dar would be very expensive (but certainly not out of the realm of possibility) and very difficult for Paskalina, who would not only have a hard time with the 10-12 hour bus ride to Dar, but would have a very tough time seeing the many doctors there, some of who might have an amazing demeanor close to Nan’s, but many of who would not. We spent the next day or so sending emails back and forth to the US in attempt to determine what the next step for her would be and to help make the decision as to whether it was feasible and reasonable to send her to Dar to be evaluated and possibly treated. We finally heard back from the person who really counted, though, the head of pediatric hem/onc at Muhimbili who is the one who would be making the ultimate recommendations. What we heard from her was certainly not what we had hoped for by any means and was rather devastating to us all. Essentially, AML was not treatable here in Tanzania (treatment elsewhere like the US could likely be offered, but the prognosis would be grim regardless) and ALL was treated primarily in children, where they would be admitted to the hospital for six months during this time, and that this was not something she would recommend or offer in this situation.
Once again, the reality of caring for patients here was brought the forefront and, though, very difficult for us to accept in this case, we all came to grasp with it in our own way. I know it was very tough for Nan given her short attachment to the patient and the work she put into getting the answers we needed. The reality, of course, is that her prognosis had she been in the US would have been horrible just the same and the decision not to treat could have been just as easily made at some point during her care. It was still a blow to all of us and one of the many experiences of practicing medicine here that will forever remain with each of us.
On another note, the gentleman with the abnormal CT scan and HIV who we are planning to treat for CNS toxoplasmosis did return today for a discussion about the cost of the treatment we are recommending. It will cost over $300 for the six-week course of treatment and he will then have to be on chronic therapy for a minimum of six months. And remember, we are treating presumptive toxoplasmosis, which means that he may not improve if this is something else like CNS lymphoma. We discussed it with the patient and offered to assist him by covering half of the cost of the medication (this was primarily Jamie’s gracious offer) for the initial treatment. We would have to order it and our hope was to start it shortly so we could see him again before we leave to determine if the treatment was helping as 90% of patients have some radiographic and clinical improvement within two weeks if it is indeed toxoplasmosis. Repeating CT scans will be difficult, unfortunately, due to the cost, but we may try to get one before we leave and will all have to pitch in to get it. We’re all in agreement that it would be a good use of funds to manage his case.
Meanwhile, we have been waiting all day for Glen and Sarah to arrive. Glen Gaulton, who is the director of the Center for Global Health at Penn, had planned to spend time with us here (a week to be exact) to get an idea of what FAME is all about, what we do here and what potential there is for additional cooperation between Penn and FAME. Prior to arriving to FAME, though, he was spending a few days with Sarah Tishkoff who has been doing incredible genetics work in Africa for years and has a site at Endulen Clinic, which is in the Ngorongoro Conservation Area not to far away. Their plan had been to come here in the afternoon so Sarah could also spend the night and see FAME. With the heavy rains of the morning, though, it took them many hours to drive through swamps and rivers, getting stuck multiple times, and eventually arriving at around 9pm after their harrowing ordeal. Glen described one event while crossing a swollen river and getting stuck after being caught in the current when he wasn’t sure whether it was safest to stay in the vehicle with the rising water or make a run for shore. Luckily, they had to do neither and made it out somehow. I was happy when they finally arrived as it would not have been very good for all involved to have somehow misplaced them somewhere in the Conservation Area.