Things continue to go well here in Almaty. We are anxiously awaiting our interview at the US Consulate this afternoon. According to our Almaty coordinator, Oleg, everything is OK with the paperwork, meaning that if all goes well, we’ll have our walking papers before too long. I have decided that if there is enough time to make it to the KLM office this afternoon, I’m actually going to see if it is possible to get onto the Thursday morning flight. Despite the fact that this would mean rushing to get packed up and off to bed in time to wake up at 4:00 am (not a problem for Anika) tomorrow, it would be entirely worth it to get out of this hotel room and into our home.
Truth be told, for what this is, we’re actually very lucky. The hotel has a restaurant in the basement and the room service isn’t half bad (although you only get an English speaking person on the line about half the time). The location is also good: close to restaurants and stores. Plus we have two queen-sized beds, a bathtub (not Anika’s favorite, yet), and a crib with enough room to be able to walk around. However, as I mentioned before, the tiny fridge, no microwave or teapot, only sporadic internet access (one-time, one hour connection for 700TT), and the fact that Anika still requires 3 naps/day means that we’re stuck in the room for most of the day. We’ve been working hard to figure out her routine and her cues. We’ve definitely learned when she’s hungry, and that we had seriously underestimated how much food she could hold for the first couple of days. Now we know that she needs a substantial breakfast, a mid-morning snack, lunch, a mid-afternoon snack, and a substantial dinner in order to be happy. We definitely her good mood emerge once her belly is full.
Sleep-wise, we’ve managed to get her to sleep through the night, with occasional late-night arousals. Last night we got her to sleep around 7:00 and she stayed mostly asleep until about 6am. Then, to my surprise, she hung out in bed with us for about 45 minutes more before wanting to eat. I don’t think that’s so bad given that it’s only our 4th day with her. Figuring out the nap times when we have different things to do during the day is bit more of a challenge. For example, as I write this, we’re probably going to have to pack her up and leave in about an hour, but despite an hour’s walk around town and some quiet play, she’s standing in her crib pretending to be Galileo as launches every pacifier and toy over the side of the crib while happily babbling away at us. We’re hoping that she’ll sleep now so that she doesn’t lose it completely when we are traveling to and from the consulate (not that it isn’t entirely entertaining to listen to, and watch her, do all of these things). As I said, it would be worth it to get home as soon as possible, just so that we can begin to recover from the jet lag and get her on schedule.
She definitely seems to be re-attached to us. From the way that she’ll sit and stare out our faces as we hold her in the carrier, to the way that she stands at the crib and smiles back at us, and especially the way that she’ll crawl into our arms while we’re playing with her, it seems that she’s truly happy around us. This doesn’t mean that I think that she’s completely recovered from the separation from the orphanage and her regular caretakers, but I’m a lot less worried about her being comfortable with, and bonded to us as her parents. As promised, I finally had my hands free enough to get some good pictures of her in all of her glory.
If we don’t leave until Friday, then I’ll go and visit the Almaty Postgraduate Medical Institute tomorrow. Yesterday I had a fascinating (and unexpectedly long) visit at the Scientific Center of Pediatrics and Children’s Surgery. The trip was arranged by Dr. Azhar Nugamanova who works for the ZdravPlus project, which is a medical assistance project organized through USAID. The hospital was outside of Almaty in what looked like a poorer residential district. I was picked up by a USAID driver and the trip took about 45 minutes. On arrival, I was greeted by Dr. Alzhan Salpynova, who is one of the hospital’s pediatric gastroenterologists. She had fairly good command of English, and served as my translator and guide for the trip. After dropping off my bag and coat in the physician workroom (a very small office with 4 desks and a couple of computers), I was told that the head of the hematology department was busy and was offered a tour of the hospital. Much to my surprise, the hospital was less modern than I expected, but not surprisingly, I was told that it was “undergoing renovation”, which is what I’ve been told about every other hospital that I’ve visited here. I was shown a number of wards, including the hematology ward. In Kazakhstan, the hematologists treat malignancies of the blood and bone marrow (leukemia) as well as non-malignant conditions (aplastic anemia, ITP, hemoglobinopathies, etc.). This is different than in the US where oncologists treat leukemia. The ward I was shown was pretty big, and very crowded. Between the two hematology wards, they had the capability of holding about 40-50 patients – the entire hospital has about 250 beds. Most of the rooms on the hematology ward were doubles or triples, with beds for the parents along with beds for the children. There were a small number of laminar-flow isolation rooms. Interestingly, there was a community dining area, as opposed to the in-room dining that is standard in the US. I was also shown their activity room which was well-equipped and very crowded. Outside in the hall I came across a group of boys who were playing with a miniature pool table. Theirs was the one and only picture that I took (with the boys’ permission) during my time at the hospital since I ended up being busy talking to so many people.
This hospital is one of two pediatric hematology centers in Kazakhstan that is equipped to treat children with leukemia. As such, children from all over the country, as well as from nearby countries, will come and stay for the duration of their therapy, which can sometimes be many months time. This facility sees about 80 new diagnoses of leukemia per year, and about 600 new patients per year (all blood disorders combined). The government covers the cost of both the hospitalization, the medications, and the transportation. Parents (usually the patient’s mothers) stay in the hospital with their children. Kids with leukemia who complete their induction therapy and go on to receive outpatient treatment can be cared for by pediatric hematologists in the larger towns and cities in their home region (oblast). I asked about the numbers of pediatric hematologists/oncologists in the smaller cities and towns, and was told that while there weren’t enough, there was some available in the larger regions. With regard to solid tumor patients, I was told that children with solid tumors are cared for at a different hospital in Almaty.
Kids with acute lymphoblastic leukemia (ALL) here are treated according to the German BFM protocol. When I enquired about survival rates, they told me that their 5 year survival rates were about 70-75%. For acute myeloid leukemia (AML), their survival rates are only about 50%, but this rate is higher than I expected given the more intense chemotherapy required, and the fact that AML patients are at much higher risk for relapse. Right now there is no capability for either autologous or allogeneic stem cell transplantation, but I was told they hope to have this capability in the next year or two. From what I understood, doctors here will often travel to other countries to learn these techniques – for transplant, they will probably go to Israel to learn.
I was subsequently taken to the radiology department where I was introduced to their “CT doctor” and shown the CT scanner (Toshiba). I was told that in the new hospital building that’s being constructed, they’ll have a new CT scanner (Philips) with a digital imaging system instead of their current film-based system. They also told me that when this new building opened in 2009, they would also have an MRI machine as well. From radiology we next went to the neonatal ICU where, pleasantly, conditions were much better than in Kostanai. There were a number of brand new isolettes and ventilators, and I was told that this hospital had the ability to support premature infants as small as 600 grams. Surprisingly, I was told that in the near future, Kazakhstan will adhere to WHO guidelines and attempt to resuscitate and save premature infants as young as 22 weeks gestation. While I didn’t have a chance to see them, the hospital also has wards for gastroenterology, trauma (including burns), general surgery, and two “reanimation” units (ICUs). Alzhan, my guide, took me to meet her mentor, Dr. Mashkeev, clearly one of the senior doctors in the hospital. Both doctors are very interested in celiac disease and are looking for any international collaborators to assist with their research and the care of their patients. They peppered me with questions about celiac disease, which is about as far from pediatric brain tumors as you can go, and as such I felt bad that I had little to tell them about what was available in the US in terms of diagnosis.
Before long, it was time for me to give my talk. For reasons that remain unclear to me, of the topics that I offered to speak on (based on the previous tumor boards and talks that I’ve given over the past few years), they asked to hear about Langerhans Cell Histiocytosis (LCH), an uncommon disease that is only somewhat like cancer (it’s an interesting disease where a certain type of immune cell proliferates in bone or skin). I had a chance to describe the current treatment protocol that we use for treating this disease, and despite the fact that this hospital sees only 3-5 cases per year, they seemed very interested based on the half-hour long question and answer session that followed the talk. From what I gathered, one of the bigger problems here is the limited laboratory capabilities. While they have CT and ultrasound imaging, doing cytogenetics and immunohistochemistry is a problem due to lack of access to specialized reagents. Hopefully, when I get back to the US, I’ll be able to dig around and see if there’s any assistance to be offered by companies that make some of the antibodies used for diagnosing this disease in tissue sections.
After the talk, I had a long visit with Dr. Kulyan Omarovna, who is the director of pediatric hematology. We spoke at length about the treatment modalities available here, the types of diseases they see, and the directions they want to go in the future. Then, to my surprise, she ended up presenting me data from three very challenging clinical leukemia cases, seeing my opinion. One of the patients – a 15 year-old girl from the southern region of Kazakhstan who has been impossible to diagnose over the past month of her hospitalization – sounded to me like like she needed a bone marrow biopsy to make a definitive diagnosis. You can imagine, then, how shocked I was when Dr. Omarovna asked me if I wouldn’t mind doing the biopsy on the patient myself. She even went so far as to bring me the needles and the anesthesiologist! Having been previously told that it was not possible for me to see/treat patients here (not that I would’ve minded doing it), I demurred as best I could, and was ultimately saved by the anesthesiologist who told me that since the patient had already eaten, it wouldn’t be possible to anesthetize her until much later. I sincerely wish that I had better command of Russian, because there clearly is a great deal of need her for additional expertise and assistance with some of the more difficult cases. Nevertheless, I told detailed notes on all of the cases and told Dr. Omarovna that I would contact the leukemia experts at my program and see if they had any advice to offer, and then relay that information to her by e-mail.
By the time I got out of there, it was nearly 2:30pm and I still had a long car ride back. By the time I got to the hotel, I’d been gone for 6 hours, meaning that Julie had been single-handedly taking care of everything for that entire time. When I got to the room, I could tell that she needed some relief. She must’ve really had her hands full, because I learned later that after ordering room service she inadvertently gave the waiter a 2000TT tip (about $16) instead of a 200TT tip (about $1.50) for her 1000TT lunch.
For the afternoon, we packed Anika into the carrier and took her for a walk, and then fed her and took the post-meal good mood as an opportunity for us to head down to the restaurant for an early dinner. It’s amazing how quickly we’ve gone from the dinner-reservations-for-8pm couple to the alone-in-the-restaurant-at-6:00pm family in 4 days. Nonetheless, Anika was in a great mood during dinner, and we both managed to eat a proper meal and have a much-needed drink. We were happy to eat in the bar area but were moved by the hostess to the main dining room because the bar area because the bar area could be a little cold and was “not good for baby”. At dinner, we realized that Anika was beginning to understand the concept of gravity as she began to purposefully launch her toys onto the floor with obvious delight. Afterwards we decided to try the bottle/book/bath/bed routine, leaving out the bottle and the book for now. She wasn’t particularly thrilled about the bath, but she tolerated it, and once she was fed, washed and changed, she was feeling good and we enjoyed her playfulness and managed to get her to sleep in short order.
The next installment will hopefully be stories of packing our suitcases, or even better, will come from Schiphol Airport as we begin to make our way home.