Occupation Medicine

The reason Ethan and I chose to come to Palestine has many facets, but perhaps the biggest draw was the effect of the political situation on medicine. We have come to see how Occupation (the Israeli presence in Palestinian territories) has affected every aspect of medicine here: from the infrastructure, to available treatments and medicines, to the emotional mentalities of patients and physicians, and even causing some injuries directly. This situation is unlike anything we have in the States, but at the same time medicine transcends all of it. Doctors here, just like everywhere else in the world, do the best with what they have giving the best care to their patients. It is this scenario that makes shadowing here such a unique experience with a small amount familiarity all at the same time.

There is one patient who portrays this balance between medicine, culture, and politics in a beautiful, heartfelt tragedy. Her name is Rahaf. She is a shy, beautiful curly haired two year old whose smile lit up a room when she accidently let one slide onto her face. We first met her at the beginning of the summer. We walked into her room during rounds, and Rahaf immediately began to cry as the doctors entered. Her cry echoed throughout the room, and she wouldn't stop until after the doctors left. She despised white coats. The site of any doctor caused her giant eyes to begin to swell with tears and the howling began shortly after. Ethan and I were immune from this "white coat syndrome", and thus we eluded the blubbering and wails.  At this first visit, she was diagnosed with relapsing acute lymphoblastic leukemia (ALL).

A bit of background on ALL. It is the most common form of cancer in pediatric patients, but also the most curable. Remission is met in typically 80% of all pediatric patients. It is a cancer of the white blood cells (WBCs) caused the accumulation of immature, thus ineffective WBCs. This overproduction limits the production of normal health WBC (immune fighting cells), red blood cells, and platelets. It is easily treated with chemotherapy. The treatment consists of initial induction (rapid killing of the cells), followed by consolidation (an intense short treatment to help rid the body of any remaining tumor cells, especially in the central nervous system), and ending with maintenance (several months of low dose therapy to rid the body of any residual cells). The patient is typically on treatment for 2 years total, and then watched for another several years after.

Rahaf was no stranger to the pediatric cancer department upon our introduction. When she was just several months old, she was first diagnosed with ALL. She immediately began therapy completing both induction and consolidation. From the beginning, there was trouble with her family. Her mother, the only parent to ever be present, never quiet understood what was going on her with daughter. Despite the doctors, nurses, and social workers, things never seemed to click. She didn't understand the dangers of cancer or how the medicine worked. She only saw her seemingly healthy baby girl get sicker as the doctors gave her more and more medicine. To make matters worse, Rahaf never did well on chemotherapy. She had every negative side effect possible, but despite that the treatment was working. Her parents just couldn't see it. Her parents stopped the maintenance therapy and took Rahaf home to die, despite being no where close to death. Taking her off the medicine and bringing her home was its own death sentence.

After many long debates and interventions, the mother took Rahaf back to the hospital to continue therapy. She finished her maintenance therapy under the careful observations of the doctors, and the ordeal was seemingly over. Several months later, the doctors noticed something wrong with her blood tests on one of her check-ups. They admitted her and ran the whole gamut of tests: full blood work ups, bone marrow biopsies, and lumbar punctures. There was no good news. The doctors diagnosed her with a relapsing ALL on our first meeting. This diagnosis has a much worse prognosis, with mortality rates much higher than the initial cancer.

When we went back to the office after meeting Rahaf and her mother, the doctors were in a bit flustered. They knew they would be dealing with a more aggressive cancer, difficult and stubborn parents, and the normal problems associated with Occupation. They needed more aggressive chemotherapy, which was sometimes difficult to get, and they needed her parents to be cooperative no matter the outward signs. It was going to be an uphill battle, and the doctors weren't sure what would be waiting for them at the end of the journey.

Throughout the last month, Ethan and I made it a point to spend extra time with Rahaf any time she was in the hospital. We often would go into her room without the physicians, avoiding the tears, to play with her. She was extremely shy at first, clinging to her mother's arms. She rarely gave us more than a smile. Slowly but surely, her armor began to crack, and she began to enjoy our company. Thanks to antibacterial soap bubbles, matching hair bows, and E's ability to juggle, we got her laughing. She became a constant in our daily routine: rounds, listen to the doctors discuss patients, play with Rahaf, go home. We held her hands as the doctors performed routine physical exams. We distracted her during her therapy. Any smile she gave us brought me instant gratification.

Her time at the hospital was anything but a smooth ride. The last several weeks, Rahaf began a steep decline. The chemotherapy was always being interrupted by some type of complication. First, it was tumor lysis syndrome. It is a common side effect of the intense chemotherapy caused by the rapid breakdown of cells.  All their waste products build up in your system and cause a multitude of problems that need to be dealt with before chemotherapy can continue. Next came a fungal infection, due the immunosuppressive drugs she was currently taking. Again, they waited for that to be cleared before continuing with chemotherapy. All while these side effects are occurring, the cancer is still the biggest threat, and it wasn't getting the treatment it needed.

Rahaf went home and things looked to be getting better. Suddenly, however, she was back with a rash. She now had herpes zoster. From that point, it seemed like an avalanche of side effects came pouring on poor Rahaf. The doctors needed her on the chemotherapy to prevent the cancer from getting worse, despite the complications it would cause. They moved her to isolation to prevent any further infections. Despite all the precautions taken, she developed enterocolitis, a dangerous colon infection with a survival rate of only 30%.  She then developed hepatomegaly, an enlarged liver. In simple terms, Rahaf was fighting a losing battle. If the cancer didn't kill her, the side effects might.

Ethan and I left on a five day vacation in the midst of tornado that was overtaking little Rahaf. Upon our arrival back to the ward, we learned of Rahaf's death. She died on Eid, the end of Ramadan and biggest celebration of the year. Towards the end, her poor little body began to shut down organ by organ. She had a potassium balance that incompatible with life, but she fought through it. She then had a venous thrombosis in her liver that caused her liver to fail, and poisons to be spilled to the rest of the body. Eventually, she developed total body shock and passed away.

Rahaf was the first patient I truly connected to as a future physician. I learned how to comfort a patient, calm them, and allow necessary work to be done. I learned the power of a smile and a soft voice when treating their ailments. I learned the importance of explaining what is going on, even if they cannot understand. Most of all she convinced me beyond all doubt that pediatrics was my home. She never once spoke to me but that made her all the more interesting. The interweaving of her parent's lack of understanding, her inability to communicate her symptoms, and the delicate nature of her illness made this the most fascinating and disheartening case I have ever seen. It is these challenges exactly that make me sure that I fit in a department where I can find patients just like Rahaf.

Her case was also infuriating. I have never been so genuinely upset at other human beings than I was (and still am) at her parents. Their lack of understanding is a large part of the reason their child is dead. It kills me to lack empathy for the parents, but I cannot wrapped my head around their decision making. Nor do I think, as of this moment, I can alleviate them of their guilt. I am positive there are cultural norms, family dynamics, and extenuating circumstances at play that I do not fully grasp. At the end of the day, Rahaf's life doesn't compare those factors. Additionally, Occupation made this entire situation worse. At one point, a major chemotherapeutic drug was out in the hospital. This situation is fairly common due to the political situation. Add in difficulty getting permits to better hospitals, lack of appropriate imaging equipment, and the list of difficulties surmount anything I have seen. So many extenuating circumstances: poor decisions by her parents, Occupation limited drug availability, cultural norms made this case harder than it need to be. From my limited knowledge, it cost this girl her life.

Rahaf is one of four patients to pass on in the Huda Al Masri Cancer Department in its two years of existence. It is the only public hospital available for children in Palestine with cancer, and it does so with limited costs to the families. Their survival rate is unmatched by even hospitals in the United States. Rahaf's death shook the department to the core, and made all the staff more aware of the battle they fight everyday. Despite the cheery wallpaper covering the halls, the sounds of children laughing in the playroom, and the red nosed clowns that roam the patients' rooms, every patient in that department is fighting for the chance at a full life. They are doing so against circumstances beyond their control and against incredible odds. For every kid inside the ward, there are several in the West Bank and Gaza who simply can't get treatment at all.

So while at times this summer has been frustrating with the lack of medical activity, this experience has been one for the books. Ethan and I have achieved one of our goals and have come to appreciate the difficulties that doctors face every day in the West Bank. The difficulties weren't always quite what we were expecting and they aren't always out in the open, but they were present each and every day. Every patient is somehow affected by Occupation. We only hope in the future we can do something about it.