Sunday, January 13, 2013
Little Hero - a story from China
Little Hero is ten years old. Both her parents are farmers in the beautiful Raging River Valley, two large river valleys west of Beautiful River. This area has been called the “much wayward world of the non-Chinese, the world of those who have been
incorporated into the Chinese Empire, but who live irredeemably and steadfastly beyond it.” Raging River Valley is squeezed between the Gaoligong Mountains to the east and Myanmar to the west. It is said that the region holds nearly a quarter of China’s flora and fauna. Warm air laden with moisture from the Indian Ocean travels up the
river valley, resulting in heavy monsoon rains during the spring and summer. The Raging River (Nu Jiang) becomes the Salween in Myanmar (Burma), traveling 1,500 miles from where it coalesces in the Tibetan highlands to the Gulf of Martaban, where it streams in to the Andaman Sea.
Little Hero is Lisu, a people group that heard the Good News over one hundred years ago. Her family members are believers in a geographic area and people group where everyone more or less is a believer, at least culturally. The local people think she is pretty, maybe because of her well-defined upper eyelid crease, or her eyebrows that arch highest at just the right place.
In January 2012 fluid started leaking from her right ear canal, and within weeks a soft red and pink mass emerged. Her parents, alarmed, took her to a hospital in the closest big city, the gateway city of Six Storehouses. Six Storehouses is nestled between the mountains, on the banks of the Raging River. It is a gateway city in that the only
road north up the river valley passes through Six Storehouses. The city’s name has been changed to Lushui (River Water), but everyone still calls it Liuku (Six storehouses).
The doctors in Six Storehouses operated, taking what was visible of the tumor out, and sent her home. Within weeks the tumor recurred, and when she came to the provincial capital in early November the tumor again filled her entire external ear canal.
Nobody, perhaps, arranged it like this, but following an unspoken and ancient triage, she was the last patient seen. She had a purple, blue, green and yellow scarf draped over her head. She wore a white-tinted-purple fuzzy lined jean jacket, and a thin gold necklace. Her hair was cut short and she looked like a boy. She looked down, unsmiling, and her sallow face seemed to reflect the horror of what was growing in her ear. It is always a confused rush, trying to get the story, trying to understand. It seemed impossible that the tumor had been excised just months ago, the feculence
sickening, even when we have seen so much, so many times. I kept asking, feeling that I was not understanding; them speaking Lisu, us speaking Mandarin. Yes, she had already had surgery. Yes, it had been gone. Yes, it was really only three or four months. Obviously, now, it was back. She had some palpable lymph nodes in her neck, all less than one centimeter, but the thing smelled so bad, and drained pus, and it was hard to tell if the nodes were reactive or worse. Help us if you can.
It is also hard to know what to think. Unfair, yes; unequal worlds: a ten year-old in Philadelphia or Toronto would never get to this. But then there was that guy at Lankenau, the basal cell eroding a hole in his cheek, hidden under a white square of cotton gauze. Access alone doesn’t guarantee proper treatment. Little Hero herself, standing there in the screening room, is so somber, ever-grave, serious and sad. The whole room seems dirty intermediate tones of gray, a cold November day, through tiredness, age, and illness; I sigh; we’re back, now three.
Well, we will do what we do: get a CT scan—look for bony invasion—schedule her for surgery, and take out what we can. We will send it for pathology, and go from there. The team from Canada is coming and we will be able to send the specimen back with them.
On the last day of surgeries, a plastic surgeon from Edmonton, took the tumor out from her ear, opening the mastoid area behind her ear as well—better surgery, undoubtedly, than she had had the first time—and we began the waiting for the pathology report.
Her mood changed, almost overnight. Now she was smiling and happy, running up and down the hallways, grabbing onto our legs, not wanting us to leave when rounds were finished. Maybe it felt good to get the tumor out of her ear canal, Maybe she had just been nervous about surgery. She played with the kids wearing splints on their arms;
Little Hero appearing normal, no wound to speak of, but serious still. Still we waited.
The first report came back from the hospital. It said they were sending the specimen to the sovereign-ly named Kunming Kingmed Institute for Clinical Laboratory. More investigations were needed; they wanted to run a bewildering array of extra tests: CK, CKH, CD31,CD34, Ki-67, HMB45, Melan A, CD68 and MPO; all various tumor markers,
helping to rule-in or rule-out various types of cancer. Every day on rounds we would tell her and her father we were still waiting for the results. It took so long we finally let them go home. You never see anyone happier than when we tell high mountain home people they can leave the provincial capital and go back to their villages, to their families. We made sure we had her father’s cell phone number, made sure they understood Little Hero might need to come back for further treatment, and then said goodbye.
It was actually a little more complicated than that because there were several other Lisu patients and families from the Raging River Valley—all in various states of readiness to leave the hospital—and they chiseled away at me, incessant, finally negotiating some sort of group package grand bargain hospital discharge. I shook my head, slightly smiling, feigning reluctance, and inwardly admiring their desire for home, normalcy. They celebrated like they had won a battle, overcoming the prison warden, rushing off to the bus station to buy the earliest available tickets.
Still we waited. Finally the report came back: highly differentiated squamous cell carcinoma; in Chinese, linzhuang, scale-like, scales of a fish, etc. Not totally unexpected, it was, at any rate, highly differentiated, meaning the cells more closely resembled normal cells, and might be more likely to respond to radiation than poorly
differentiated cancer cells. Arrangements were made for Little Hero to come back to the capital for gamma knife radiotherapy, which is more focused and therefore has fewer side effects than conventional radiotherapy. She would need ten sessions, once a day, for ten days, and it would cost two wan, 20,000 kuai ($3,175). Of course the money
could be found. One of our Singaporean friends, also a doctor, made the necessary hospital arrangements. About two weeks later she was ready to leave the hospital, returning home for the second, or third, time. She was eating well, with no side effects to speak of. Our Singaporean friend sent us an email, wondering whether she got enough radiation.
He said there were two residual lymph nodes, less than 0.5cm over the right neck region. He said Little Hero was going home today. He asked if we could all be praying that the disease not recur, and said we can only trust that the Lord is in control. He thanked us, and you, for helping her, and said we would be able to keep in touch with her father by cell phone.