There are a lot of ways to tell this remarkable story. Let me start with Feleke. The first patient.
I had been treating patients at a Catholic mission in Addis Ababa for over 15 years, first as a simple volunteer and later as an official JDC project, when the nuns asked me to evaluate an 11-year old boy named Feleke. He spoke Oromo language; I do not.
I found another patient who spoke both Oromo and Amharic, the national language. His dad explained that Feleke had cancer, he had received chemotherapy with several cancer medicines. He was not cured, and they had run out of money. His father had sold so many animals – he listed, 2 goats, 3 sheep, 5 chickens, 2 cows… and they ended up at a Catholic in Addis Ababa which aims to help “Sick and Dying Destitutes.”
I looked at this boy who seemed slightly chubby, with a marked moon face, indicating that he had been taking high-dose steroids. Many cancer treatments include steroids, especially lymphomas.
He had a full medical file with him in English. I carefully went through his file. “When you get a new patient,” I was taught in Rochester, “look at every page in the chart.” I took my time, I took photos of each page – my poor man’s digital medical records, which I add to my password-protected iphoto files.
At first glance it seemed that Feleke had Hodgkin’s Disease. His chemo was not the gold standard for Hodgkin’s, but it could possibly work. Hours of work online that night could find no study, which exactly fit his drug combination, but many included these drugs.
I continued my search through the file. There were several key documents: a fine needle aspirate (FNA) from September, 2010 was suggestive of Hodgkin’s Disease. The doctor analyzing wrote: “Smear shows cytologic features of Hodgkin’s lymphoma.” He did not comment on the specific features. I knew that Hodgkin’s patients have multinucleated Reed-Sternberg cells. They were not mentioned. And he concluded “biopsy confirmation advised.” Another FNA done at a different clinic found “…hetrogenous (sic) lymphoid tissue featuring Hodgkin’s lymphoma. Biopsy recommended.”
That night, I did more research. The pathologists’ advice was well-founded: I found a study which concluded “the study demonstrated no real benefit from Fine Needle Aspirate” in Hodgkin’s lymphoma.
I wanted to be sure what my patient had. I continued my search through his chart.
And he had a biopsy in September, 2010 read at a different center which removed a 3 cm x 3 cm x 1 cm encapsulated lymph node. A good specimen. The results? “Consistent with a medium grade non-Hodgkin’s lymphoma.”
He did have another biopsy in November, 2010. That biopsy of a lymph node, read at a different center, concluded “atypical lymphoid hyperplasia.” I interpreted this as abnormal cells, but not malignant.
I made a list by date:
9/2010 Needle aspirate – Hodgkin’s
9/2010 Needle aspirate – Hodgkin’s (2 days later)
9/2020 biopsy – Non-Hodgkin’s lymphoma
10/2010 bone marrow biopsy – no disease
11/2010 biopsy - atypical lymphoid hyperplasia
I had to make a decision. Flipping a coin was not my idea of precise medicine. Ideally, I’d like to do a biopsy and send it out for analysis. Modern pathology is based on molecular markers. In 2010, and even today, there were limited molecular markers available in Ethiopia. I did some research. A marker called CD15 is positive in Classical Hodgkin’s. Only in Classical Hodgkin’s. It is negative in such things as anaplastic large cell lymphoma and mediastinal large cell B-lymphoma.
The next day, I sat with Feleke’s dad. “It is likely that your son has cancer,” I explained. “But hard to tell what kind. Each cancer has different treatment. A different mix of medication.” I used the analogy of cooking. “Doro wat” (chicken stew, the national dish) has a different recipe than tibs (roasted meat). And I don’t know what he has, so I don’t know how to treat him. I need to figure out what he has, then figure out a drug combination to use. Right now, there is nothing I can test.”
After several cycles of chemotherapy, his nodes had shrunk and I could find nothing to biopsy. “Take him home,” I said, and bring him back if he gets sick. I mean that. Don’t disappear.” I left him with my cell phone number.
They returned to their village hours away, where they live in a mud home. Seven months later, they returned. Feleke seemed to be a different boy. He was thin. He had big lymph nodes present under his left chin. “Now we have something to examine,” I explained.
I sent him to a nearby surgeon, who removed a node. The biopsy cost $25. A friend was flying to the US that weekend, and he carried the biopsy, about the size of a marble, a piece of whitish tissue floating in formalin, in a secure plastic biopsy container.
Years before, I had started treating cancer patients, and I needed a reliable way to make a precise diagnosis. I went online and looked up the pathology department at my med school, the University of Rochester. In 2008, I sent a blind letter to the chair. I pointed out that bright and dedicated Ethiopian pathologists did not have the equipment to make proper diagnoses:
We cannot be sure of the quality of our pathology support here. There is a dearth of molecular markers. A patient with the myxoid variant of dermatofibrosarcoma protuberans was diagnosed with neurolemmoma, a patient with a reactive node was diagnosed with chronic lymphcytic leukemia, a patient with sebacious carcinoma of the eyelid was diagnosed with squamous cell CA, a patient with desmoid of the mandible was diagnosed with "salivary gland tumor" and sometimes we get reports back which say "malignancy."
I asked if his department might be interested in helping me. I had no money to pay. I was asking for thousands of dollars of testing, to be done for free, for poor Africans. Dr. Ryan wrote back and said he had consulted his department faculty, and they were willing to help. He stipulated though “we want to give the same quality of care, and same quality of reports as we would any other patient.” I could not believe my good fortune. Yet another reason choosing the University of Rochester was a great decision.
Dr. Ryan mailed me American-quality plastic biopsy containers. I started having biopsies done, and sending them to Rochester for analysis. We became very adept at wrapping them in multiple ziplock bags and sealing several times, in case of a puncture. They went in the luggage of the passenger flying to the states, then would go overnight to Rochester. I checked the FDA website – this was legal. I joke during speeches “I never leave Ethiopia without carrying body parts.” Actually the “body part” was usually a piece of tissue the size of a small marble in formalin. I did bring a whole mandible (jaw bone), at a time when we were doing surgeries on disfiguring jaw tumors.
We developed a system – the sample would arrive in Rochester, they would contact me, then I would then email them the history and x-rays of the patient, and they would email me the report about a week later. Some of the poorest patients on the planet now had access to world-class pathology. In my quarterly reports to the Ethiopian authorities, I would document every biopsy, as an example of the care we were giving our patients.
So in late October, 2011, we put Feleke’s sample in a friend’s suitcase. The first report came back on October 27, 2011. They diagnosed “Classical Hodgkin’s Disease.” Some days later, the molecular stains came back as an addendum. CD15 positive. Yes, Classical Hodgkin’s. So now I was sure what he had.
I listed all the meds he had received, consulted experts, and tried to come up with a treatment. One of the drugs he received, doxorubicin, can be toxic to the heart. I learned that the drug’s toxicity is both cumulative and it is dose-dependent. I calculated that we did not have a lot more to give, before the possibility of heart damage occurred. But we needed to get rid of his cancer.
Instead, I opted to start radiation therapy. There is 1 cobalt machine in Addis Ababa, which had a long waiting list. Cobalt radiation was invented in 1951 and I knew that more precise radiation therapy was available outside Ethiopia. However, I did not know any radiation oncologists, so I did not know anyone to even ask for help. I explained to the nuns: “Feleke needs radiation therapy, let’s see what I can find.”
On December 7, 2011, I got an unexpected call. The Sherman Leadership Mission had come to Ethiopia from the Detroit Jewish Federation, and they invited me to meet them for lunch. I chuckled and said to my assistant “they must think I have lots of time, they gave me 3 hours notice.” But in fact, I was available, and showed up at the restaurant.
Whenever I am addressing a group, I ask “Any doctors in the room?” This gives me an idea about how medical I should make the talk. In this case, 1 person raised his hand. “Hi,” I said, “welcome to Ethiopia. What’s your name?”
“Jeff Forman,” he replied.
“And your field?” I asked.
“Radiation oncology,” he answered.
I replied: “Jeff, after lunch, I’m going to steal you for a couple of hours. I need a free consult.”
I marveled at the circumstances: the final report with molecular stains had come back on 21 November, 2011. 16 days later, a Johns Hopkins-trained radiation oncologist arrived. As someone said about a different circumstance in my life “these things are not arranged by human beings, they are arranged by the Almighty.”
After lunch at the Italian restaurant and a talk about my work and the work of JDC in Ethiopia, Jeff got into my used Suzuki and we drove to the mission. We walked into Feleke’s room, with images of Jesus on every wall. There were about 30 beds, all perfectly made, with some occupied and some empty.
Jeff later described this:
For lack of a better word, this “hospital” was for the poorest of the poor.
Had I not seen with my own eyes, I would never imagine all I would see there, diseases I had only read about in textbooks, and ward-after-ward where patients slept 2 to a bed.”
Jeff did not mention but I must add: the home is highly organized, meticulously clean, and patients really care about each other and are very helpful to each other. The nuns are pure and caring. I love the place.
I pulled out Feleke’s x-rays and scans. “He has Classical Hodgkin’s” I said.
“How do you know?” Jeff asked. “We did the biopsy here. Flew it to America. Pathology done at the University of Rochester.” “Wow,” he said, “so we can be confident.”
I explained my evaluation: “So I am approaching the limit for doxorubicin, so my idea is to give him radiation therapy for the remaining tumor. But what do I know? Your opinion, doc?” “Rick,” he said, “I agree.”
“Any chance, you can treat him in Michigan ?” I asked. “Keep in mind, we have no money to pay anything. We have to beg for an air ticket.”
Jeff was the statewide director of a private radiation therapy group. “Rick,” he replied, “you do all this without charging patients a dime. Get him to Michigan, he’ll get the rest for free.”
There are many variables, and free treatment is 1 of many. In this case, I needed money for an air ticket, I needed a visa, and I needed a host family. I did not know anyone.
My 23 year old volunteer, far-more adept at social media than me, put together a brochure, and posted it on Facebook. We got 20 replies in the coming days. American generosity was at its best when families in Ohio volunteered to host Feleke and drive him 3 hours each way to his radiation sessions. One of the volunteers from Ann Arbor, a family of an academic dad and nurse mom, seemed perfect.
I had to be in Canada on 23 January. I suggested we fly out a few days early, so I could be with Feleke for a couple of days and “plug him into the US system.”
On 24 December, we got his passport. That day I drafted a letter to the US Embassy:
Consular Section
Embassy of the United States
Addis Ababa, Ethiopia
Re: Feleke Age 11,
To the Consular Section,
On a recent trip to Ethiopia through the Detroit Jewish Federation, my friend and colleague Dr. Rick Hodes, medical director of the JDC in Ethiopia, introduced me to his patient Feleke, an 11 year old boy at a Catholic mission in , Addis Ababa.
Based on my exam of Feleke with Dr. Rick, hispathology report (done at the University of Rochester, New York) andhis recent MRI (done in Addis Ababa), I can say with assurance thatFeleke has recurrent Hodgkin's lymphoma, limited to his neck region.This is best treated with radiation therapy. In Ethiopia radiation therapy is more rudimentary. With modern radiation therapy, Feleke has an 80% chance of cure.
I am a radiation oncologist and National Director of Clinical Researchfor 21st Century Oncology, a large specialty practice. I have accepted Feleke for treatment of his Hodgkin's lymphoma at no cost to him, or to thetaxpayers of the State of Michigan. Treatment will be done in 15 - 20sessions (about 5 per week) at one of our facilities in suburbanDetroit.
Housing with a local family is being provided as well. Dr. Rick is arranginghis travel, and has funding for this. Rick would like to bring Feleke with himto Detroit in mid-January, 2012.
We ask that you issue a visa for this.
Feel free to consult me with any questions you might have.
Sincerely,
Jeffrey D. Forman, MD, FACR
I brought Feleke and his dad to the US Embassy on January 4, 2012 and they issued the visa without problem. His dad signed permission for travel and permission for treatment, notarized by the US consul. This is important – upon entering America, they always check. I gave him 1 cycle of ABVD in the meantime, to restart him on his chemotherapy.
We flew out on KLM the night of January 17, and arrived in Detroit the following day. I remember how cold it was. I rented a car and headed to the rural home of Kyle and Ruth Ann Logue. We were exhausted, but delighted to be in the states, and excited to start therapy.
On the 19th, we drove to Dr. Forman’s office, accompanied by an Oromo language translator. Dr. Forman did the official history and physical exam, then he took Feleke into the room where he’d have radiation. They molded a face mask, so the beams would be precise, and we did a practice session. He also did a CT scan, to have a baseline of his cancer at that moment. For several weeks, they drove to Dr. Forman’s office 5 days a week.
In 2013, I got another patient, a 15-year old named Bef, with a droopy right eye. He had lost his eyesight 2 weeks before. His CAT scan came back with a cross-marking measurement, showing a tumor a bit smaller than a golf ball behind his eye. I needed a biopsy. My fear is that this was SNUC – sinonasal undifferentiated carcinoma, which is often incurable.
Ethiopian doctors felt the biopsy was too dangerous and required a complex procedure outside their expertise. I called around, looking for a visiting ENT surgeon. At 10PM, I was informed that there was an ENT doctor from Minnesota in a local hotel. “She’s leaving soon,” I was told.
I called the switchboard, and they put me through to her. I explained the situation. “I’m booked up tomorrow,” she said, “and then I’m leaving. But send him to clinic at 7AM, and make sure he’s NPO” (empty stomach). She was able to perform the under local anesthesia, through his nose. She brought the biopsy to the US and sent it to Rochester. It arrived on March 8, 2013. Bef’s mom phoned me every day to ask for the results.
Over the following month, I exchanged 25 emails with the department of pathology as they analyzed the specimen. Their first impression was nasopharyngeal cancer. However, some of the stains were unusual, and they asked the hematology section to check for lymphoma. They ruled it out. Realizing that rhabdomyosarcoma was a possibility, they stained for myogenin, which took several more days. It came back strongly positive. I got a note from the pathologist: “Rick, we’ll be signing this out as a rhabdo in the coming days. Just want you to know so you can start planning.” That’s the advantage of having friendly relations with your pathologists.
His oncologists put together a chemotherapy regimen. I flew to India to purchase Actinomycin D, and Bef started chemotherapy at the university hospital in Addis Ababa. But he needed a combination of chemotherapy + radiation. In America they could be done together, here they would do a “sandwich protocol – radiation in the middle.”
I contacted Jeff Forman, and told him I have a 15 year old boy with “rhabdo of the orbit” who needs radiation. “Send him over,” Jeff said, “we’ll take care of him.”
In June, I prepared another letter from Dr. Jeff to the US Embassy. They approved, and on 28 July, we flew from Addis Ababa to Rome to Detroit. The Logues found a family in their church to host Bef, and he started his therapy. Feleke showed up at the airport to meet the new kid and help him through the process. As we unpacked his bags in America, we came across a raw chicken, his mom had put in so he’d have something to eat in America! I could not believe that had passed the sniffer dogs in the Detroit airport.
Bef had several months of radiation, then returned to Ethiopia to finish chemotherapy. His Michigan family sent him $30 every month – a dollar a day, and he used that for tuition in a private high school. He lived with an aunt and commuted to school. He was #1 in his class.
A year later, his aunt announced she was getting married, and ordered him out of the house with 1 week notice. He called me in a panic. “Do I have to go back to my parents 2 hours away? Change school in the middle of the year?” The next day I gave Bef a bed in my home, and he commuted to school from there.
Jeff Forman became a friend. We stayed in touch. He told me later “Rick, treating Feleke and Bef was the most meaningful thing I’ve ever done as a doctor. There are other good oncologists around, and if someone in Detroit doesn’t come to me, they can find a doctor in this area and get good care. But Feleke and Bef? It was me or nobody. They are my joys.”
Jeff developed a blood cancer called myelofibrosis, and was at risk of death. He opted for a bone marrow transplant, the only possible cure. In May, 2016 he flew to City of Hope Medical Center in California for this difficult procedure. He developed a massive infection, and was put into a medically-induced coma for more than a week. His liver failed. His kidneys failed. They had almost given up hope when his new marrow started working 18 days after the transplant, and he recovered.
Jeff returned to Michigan to heal. The following year, he left his practice, changed his scope, to provide hospice and comfort care. He became medical director for the Jewish Hospice and Chaplaincy Network, helping provide in-home nursing, nutrition advice, help with social networks and family support, as well as spiritual support. And liaising between patients and their doctors. This came naturally. For decades he had given his patients his home phone number and said “call me, no problem.” Every time he went to a restaurant, people came up to introduce themselves and say “you saved my brother.” His kids called him “mayor of the world.”
In 2018, 2 years after Jeff’s transplant, the Jewish community of Detroit had a dinner in his honor, and flew me in to be the speaker. Feleke’s American parents proudly sat with Dr. Forman and truly beamed when I introduced Feleke and told his story.
Jeff worked as a fundraiser for the Karmanos Cancer Center where he was also a patient. He had “GVH Disease,” graft vs. host, and his doctor was a world’s expert. Every year on the anniversary of his transplant, (“my transplantiversary”) he sent emails to everyone he knew, asking us to donate to Karmanos to support GVH research. It’s the least I could do for someone who had saved 2 of my patients.
Jeff emailed me a few months ago. “Can you get here?” he asked. “I want to introduce you to a potential donor. In December, I flew to Detroit and we met with a businessman who expressed interest in my work. Jeff and I had lunch, and agreed to work closer in the future. We were planning a medical fundraiser.
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And our patients? Feleke is in Michigan, legally adopted by his host family with the blessings of his original parents, and the US court system. He went through “extreme vetting” for his citizenship, which revisited many of the facts about his case yet again, including whether he actually had cancer. He is a healthy, long-haired high school student with a bent towards science.
I sent Bef to cancer camp in Rochester, NY where my friend is the medical director. He finished high school in Rochester and volunteered in the pathology department of the University of Rochester, which did his original pathology to come up with the proper diagnosis. He is now a full-time student at the University of Rochester, majoring in biomedical engineering. Aiming at medical school.
Jeff Forman recovered from the bone marrow transplant, was feeling well, working in palliative care. He had been to Florida before Coronavirus hit. On 8 April, he was quietly reading at home, and suddenly died, without warning. I got the call later that day. I phoned the Logues and Bef to let them know.
There are no words to express our shock, our sadness, and our sense of emptiness.
In this time of social distancing, we will all attend Jeff’s funeral by zoom, and honor him for his work and his life. It is my second zoom funeral in a week.
Jeff, you have left us too soon. Your memory is a blessing. Rest in peace, my friend.