Day 2, A Tour of the Pediatric Hematology/Oncology Unit: Steve Shares

DAY 2: July 2

It is the same in all nations and cultures everywhere: the look of fear in the face of a parent whose child has leukemia.

We began today at the Mother and Child Hospital.  Rita led us in through the back door and then down corridors that looked as if they had survived a war. While the wing she was leading us through is actually closed off and being refurbished, it was nevertheless a shock to the system.  When we exited that area and entered the hematology-oncology (“hem-onc”) unit, things were in better shape, but only slightly. Rooms were spartan in style, and the visible equipment was clearly outdated.

We entered the cramped office of the hem-onc unit, where Rita introduced us to the heroic staff, led by Dr. Chimgee. Along with a couple of residents and fellows, including Yamda, who has taught herself English, as translator, we held a first, informal introductory meeting. Eric took the lead as he conferred with Dr. Chimgee about the various treatment protocols that the hospital is using, the types of cancers that they are seeing, and how their patients are doing. When Rita first came to Eric 10 years ago, the survival rate of a child in Mongolia with leukemia was 0%. Now, thanks to the efforts of Dr. Chimgee and her staff, that rate is up to 50%, but it could still be much higher. In the U.S. it is about 80%.

We then began a tour of the hem-onc unit. Eric, Sally, and John entered each tiny, glass-walled room on the unit and spoke with Dr. Chimgee about each case (in some instances there were two children housed per room).  Meanwhile Paul, Justin, and I hung toward the back, rarely entering the room and catching only bits and pieces of the translated dialogue. As we progressed through the tiny unit, we seemed to add residents and other medical students along the way. On the one hand, we were all overwhelmed by the drabness of the facility; on the other hand, we were all amazed at the heroism of the doctors and nurses who manage to save children despite such limited resources.

What struck me most from the very first room, though, was the fear I saw on each parent’s face. On a visceral level, I knew that two years ago that face was mine.  From the moment you are told that your child has leukemia, you are gripped by fear–fear for the suffering of your child, fear that your are doing enough to try to save your child, fear of the potential loss of your child. That fear lives  constantly within until either your child dies (in which case, as I know all too well, a host of other issues are thrust upon you) or until you die and you can stop worrying that the leukemia will reappear. Eric knows this fear quite well himself, as his own daughter has had the disease, entered remission, relapsed, and entered remission again. She has now been cancer-free for over ten years and recently graduated from the University of Florida.

As we made our way through the unit, the same scene was replayed in each room: a very sick child, often with skin burns because they administer chemotherapy intravenously, accompanied by a stricken parent. Ages ranged from an infant whose mother was breast feeding the baby on the bed, to a 16-year-old girl with her father sitting anxiously alongside the bed. The patient who seemed to be faring best, ironically enough, was a little 8-year-old boy who two years ago was diagnosed with Acute Myeloid Leukemia, which has a lower cure rate. He was smiling and up amid about the ward, visiting with doctors and nurses.

After visiting a few different wards, many of them with the smell of fresh paint hanging thick in the air and all of them similarly overwhelming in terms of the quantity of unmet needs, we returned to the hem-onc office, where the staff graciously brought in chairs and stools so that all of us could sit. The office overlooked a stark courtyard with overgrown grass and, incongruously, a smiling sun painted on the wall over a door into the hospital. Rita’s fellow, Degui (sp?), disappeared into a side room and started making us coffee. Before bringing in the cups, though, she placed a bowl of sugar cubes and beige curly-cue items on the table. Rita jokingly encouraged me to try one of the curly-cues, then explained what they were: dried milk curd.

Every book about Mongolia mentions the dried milk curd. Since the steppe nomads never engaged in agriculture, they live(d) on meat and dairy products, and consequently Mongolia has a greater variety of dairy products (including the infamous fermented mare’s milk, or airag) than any other country.  Dried milk curd is especially effective for the nomadic life because it keeps and it’s portable. With a little trepidation I placed a curd in my mouth and chewed.  It tasted a little like vomited milk, but it was manageable. John, meanwhile, had been distracted when Rita explained what the curly-cues were, hearing only that they were a dairy product. Since the curds were mixed in with the sugar cubes, he logically assumed that they were the Mongolian version of coffee creamer, and, to the Mongolian medical staff’s amusement, proceeded to drop it into his coffee cup. Naturally it didn’t dissolve, and eventually he figured out that it wasn’t actually creamer. He fished it out of the cup and ate it, and the look on his face told everyone that coffee-soaked curd actually tastes worse than plain.  We all got a good laugh out of it, which helped break the tension in an otherwise grim morning.

After the coffee and curds we were able to tour a few more wards of the hospital. Rita, being the connector she is, spied the chief of the hospital down a hallway and raced over to him to arrange a meeting with our medical team. Shortly afterward Rita accompanied Paul, Justin, and me outside to the van she has contracted for the week, and we drove over to The Children’s Place orphanage to have a quick lunch of traditional Mongolian meat pies before heading to a nearby soccer field for the first session of our week-long soccer clinic. I will write much more about the clinic experience tomorrow, but suffice it to say that the session was a success and the kids had a blast.

-Steve Soud

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4 Comments

  1. Dorothy Barnette

     /  July 4, 2012

    I’ve enjoyed your blog very much. You are in my thoughts and prayers. Steve, practice some yoga, you’re in my prayers

    Reply
  2. Candace

     /  July 4, 2012

    That is so typical of John to miss out important information in a conversation. Continue to enjoy your trip & keep the blog going! – Candace

    Reply
  3. Jenny Puckett

     /  July 4, 2012

    Well, this blows up my “I love ALL dairy products” theory! Blessings as you go forward through this experience, Steve, and thank you for the vivid description.

    Reply
  4. Sheri Whinery

     /  July 5, 2012

    Thank you for sharing this experience with everyone. You are all doing something so incredibly special. Keep the blogs coming.

    Reply

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