It has been a while since I posted the last blog. Nothing much has transpired since then. Momo has had three more stem-cell transplants (SCT), all via lumbar puncture and with no side-effect – he seems to tolerate lumbar punctures pretty well. Meanwhile, one day, we visited West Lake, a large lake on the western fringe of the city surrounded by expensive hotels, restaurants, and shopping, and the heart of Hangzhou’s tourism district. I also had an opportunity to visit Zhejiang University, the largest university in Zhejiang province, with 39,000 students five campuses in the Hangzhou area. Dr. Jin Chen is the Associate Dean at ZU’s Yuquan campus and the Director for the Research Center for Science, Technology, and Education Policy at this university. He and his doctoral students research in the area of innovation management, and I presented a seminar in Dr. Chen’s class discussing strategies for publishing in premier research journals, based on my personal experiences as an author and editor.
Momo had his sixth and final SCT yesterday. This was done intravenously, and as with his first SCT, he had a mild fever at night. The temperature continued to fluctuate throughout the day today, and once became so high that Momo was put back on IV. I’m worried because we are scheduled to catch a long flight back home in two days, and I hope the fever subsides before then.
Our job here is finally done. Dr. Mike said that we should hopefully start seeing some improvements in Momo within three months. So all we can do now is wait. We also plan to do follow-up hyperbaric oxygen therapy in Florida to maintain a high blood oxygen level for the new stem cells to grow, and continue with the physical therapy regimen that we started here. If we see significant improvements six months from now, we may want to return to China later for a second series of SCT.
China is a beautiful country with rolling hills, serene lakes, and abundant scenery, centuries of history, archeology, and tradition, and all the amenities of the modern world. However, given Momo’s limited mobility and our hectic schedule, we didn’t get much of an opportunity to tour the region. Hopefully, if we return to this place and Momo is physically more able, we can get to tour the local area some more and the neighboring city of Shanghai.
That’s it for our visit to China. Until next time, ciao.
Hangzhou downtown from West Lake.
With Dr. Chen and his students at ZheJiang University. Dr. Chen is the gentleman to my immediate left.
Momo with doctors at ZheJiang Hospital. From left: James (physical therapist), a Chinese doctor whose name I don’t know, Dr. Mary, Dr, Mike, Dr. Drew, Dr. Jack, Kitty (nurse), and Christine (nurse).
May 7th, 2008
Today was Momo’s second stem-cell transplant, this time by lumbar puncture (spinal tap) instead of intravenously. The lumbar puncture is a more invasive but also more effective delivery mechanism than IV for injecting stem cells into the spinal canal for more direct transit to the brain. This procedure will be done under anesthesia in the Operating Room, since Momo won’t tolerate a spinal injection. Momo was sick for the last couple of days from ear infection and an upset stomach, and so I was worried that this SCT could be canceled or rescheduled. However, the doctors gave him antibiotics and medicines, and said that the SCT will proceed as planned at 3:30 pm in the afternoon.
Momo skipped the morning therapy sessions under Dr. Mike’s advice, and was pretty much confined to his room all day. He was homesick, and repeatedly talked about his Florida home and his school. The spinal procedure required no food or water for six hours before the procedure, and lying flat on bed without a pillow for another six hours after the procedure (though he could take some liquids during this time). Thankfully, Momo had a heavy breakfast at 8 am. He was put on IV at 2 pm to add some fluids to his body, and was wheeled out in his bed to the OR a little after 3:30 pm.
Five kids were scheduled to receive SCT via lumbar puncture under anesthesia that day, and Momo was the last kid on that queue. It was pretty much an assembly line operation. We watched as one elevator was reserved for moving kids back and forth between the 20th floor (patient rooms) and the 3rd floor (the OR), and kids were wheeled in and out of the OR one by one with remarkable efficiency. All five procedures were completed in a couple of hours.
Dr. Mike, the head doctor, was waiting at the OR when we arrived. He said that he would do the SCT himself, and asked us not to worry. Momo was administered anesthesia, and was moved into the OR before he was asleep. We returned to our room, and in about 20 minutes, Momo came back, awake and having tolerated the procedure well. He continued to remain under IV for another 1.5 hours or so until 6:30 pm.
Momo was under constant watch for the rest of the night. Fortunately, he did not have fever, nausea, vomiting, or any of the other possible side-effects of anesthesia, though his ear infection continued to hurt him. I gave him his antibiotic, and he slept well throughout the night, as did we after many sleepless nights, and woke up refreshed the following morning.
Two days later, Momo started having severe back pains in the area of the spinal injection. Dr. Mike indicated that this was a common side-effect of the lumbar procedure, and is essentially a muscle pain, not a nerve-related pain. Momo was given Motrin and electrical massage therapy, and occasional infra-red heat treatment to reduce the pain. The pain subsided, but kept coming back with lower intensity. Our third SCT via lumbar puncture will proceed as scheduled on Friday.
Fireworks display outside our hospital. There were fireworks pretty much during all hours of the day and night, and there doesn’t seem to be any noise ordinance.
A busy KFC at a Hangzhou street corner. Does not look like the KFC’s back home, does it?
The Best Western Inn in downtown Hangzhou. Looks a lot more impressive than the Best Westerns in Tampa!
February 26th, 2008
Today was the momentous day when Momo received his first stem-cell transplant (SCT). Here, they do SCT on Mondays, Wednesdays, and Fridays, but not more than two transplants per patient per week. The stem cells are harvested from umbilical cord blood, purified to eliminate diseased cells, cultured in the lab, added to a nerve growth factor, and delivered in the morning of the scheduled procedure. Each transplant involves a transfer of 10 million fresh stem cells. For Momo, today’s transplant was done intravenously, and the next four transplants will be done via lumber puncture (spinal tap), and the last one again via IV.
Dr. Drew, the chief radiologist, explained us his interpretation of Momo’s MRI during the morning tour. He said that Momo’s brain showed lower blood circulation than normal. Since blood is the sole mechanism for delivering oxygen and nutrients to the brain, the lack of blood affected oxygen supply and caused nerve death in those areas of the brain that were responsible for vision, hearing, and balance. He was optimistic that SCT will help regrow some of these nerves, though he could not guarantee anything. The SCT was scheduled for 2:30 pm, and we were advised to be there by 2 pm. I had already signed the medical disclosures the previous afternoon.
Momo was a little cranky during the morning therapy. After a light lunch and rest, we headed for the big event. An IV was stuck into his hand, and he was surprisingly less agitated than we had expected. A tranquilizer was administered to calm him down before the stem cells were inserted through IV. The 10 million stem cells mixed with nerve growth factor were only about 100 ml, similar to about half a bag of saline solution. I had expected that to be a lot more. Dr. Mary was there throughout the procedure, as were several nurses, to calm Momo and make sure that he did not pull out the IV. The entire procedure took about 30-40 minutes.
We returned to our room and rested for a while. Momo had a light dinner and went to sleep early. We were advised to watch out for rashes or other allergic reactions. Nothing of that sort happened, but Momo had fever, nausea, and vomiting around 2 am. The nurse on duty came in and Dr. Mary followed, and gave him some Motrin. I don’t think this was due to his dinner, which was taken eight hours ago and should have been digested by this time. However unpleasant this was, I was actually glad that he had a fever, which meant that his body was reacting to the stem cells introduced in the blood stream. The following morning we found that Momo also had an ear infection. What an awful time for an infection! Momo stayed awake for the rest of the night, as did I. But beyond the pain, there were no other complications and the temperature subsided. The nurse checked on him every couple of hours throughout the night and the following day. I’m not sure whether this was because we were high-paying foreign patients, but I’m very impressed with the care and quality of service.
Momo doing physical therapy with James.
Momo on a wheelchair with his Mom.
Momo in good mood after a stem-cell transplant.
February 23rd, 2008
I woke up again at 2 am, but Dr. Jack won’t see Momo before 9 am. So I used this opportunity to catch up on e-mails, browse online news sites, and flip through the twenty or so TV channels. To my dismay, BBC World News and Wikipedia, two of my most favorite web sites, were blocked, though I could browse Google News, New York Times, LA Times, and other sites. I’d like to know what criteria the Chinese censor board uses to decide which web sites to block.
The cable channels ran an assortment of news, music, sports, slapstick comedies, soaps, movies, and even teletubbies, but it was all in Chinese. The soaps were pretty melodramatic, much like the “masala†Hindi movies some of us grew up with. The sports channel was showing a recent Lakers vs. Suns basketball game. The commentary was in Chinese, but the video feed was directly from ESPN (with English text and scores), and so it was easy to follow. Another channel showed a trailer of an upcoming telecast of Tom Hanks’ “Forest Gump†dubbed in Chinese. A different channel was showing a TV series of the Olson twins (which I had never seen in the USA), also dubbed in Chinese. The music channel was not the traditional Chinese music with colorful costumes as I would have expected, but mostly Western-influenced pop, boy band, and hip hop routines in the Jessica Simpson, Justin Timberlake, and Eminem style, but in the Chinese language. I also saw Tracy McGrady in an Adidas commercial and Jessica Simpson in a Nokia commercial. I guess that American culture have had a stronger influence in this non-English speaking country that I had presumed. Later on in the morning, I caught a portion of a movie with English subtitles about the last heirs of the Ming Dynasty trying to recapture Taiwan from the Dutch. Now I don’t know anything about the Ming Dynasty, but I promised myself to read up on it.
Dr. Jack came with his entourage of doctors and nurses at 9 am, and gave us our entire schedule for the week. It was packed with physical therapy, a CT scan, and (shudder) acupuncture sessions. The acupuncture later turned out to be a typo, and was replaced with electrical wave therapy. One of the interns took a video of Momo walking. We were also told that his first stem cell transplant (SCT) will be on Friday via IV.
At 9:40 am, we went to physical therapy with James. James had a whole bunch of activities lined up for Momo, including catching a ball, walking through an obstacle course, balancing, stationary biking, and some mental exercises that involved following complex sequences of acts. Most of these exercises made sense, given the deficits that he has, but we haven’t done most of these (except the biking and the balancing) in any of our PT sessions in the USA. I was pretty impressed, and Momo had a lot of fun.
Next was a standing bed, where Momo was strapped to a bed with his ankles positioned straight and bending forward and made to stand in that posture for 30 minutes. I can imagine how uncomfortable this was, but I can also see that we need this to correct his wide gait and improve his walking. Momo was visibly distressed, and I did my best to take his mind away by having his draw pictures in that position.
After our lunch, we went for a CT scan ordered by Dr. Jack. Momo was initially cooperative, but got scared when he saw the moving red beam in the scanner. He cried and moved and I know that the CT images won’t come out good, but I hope that we don’t have to redo it.
Our last appointment for the day was electrical wave therapy, where they strapped electrical stim pads on Momo’s legs and arms, and stimulated them for 40 minutes. Momo is not used to anything like this, and was initially quite uncomfortable. But I have had this before for my own back pain, and I know that it does not hurt and is actually quite rejuvenating. So, I’m hoping that Momo will get used to this in due time.
Our long day was over at 4 pm. My back was hurting after a day of standing, and had to lie down for a while. Before I knew it, I was sound asleep.
Momo in front of XiaoShan ZheJiang Hospital. His room is on the top floor.
Momo at a local park near the hospital.
An urban park in Xiaoshan.
February 21st, 2008
We woke up at 2 am the following morning without a lot of sleep. Apparently we had not yet adjusted to the jet lag. It was a nippy morning, with temperature in the high 30’s (Fahrenheit). Our room had a nice view of the Xiaoshan district with mid-rise rickety apartment housing on one side and fancy high-rise office complexes on the other, and a riverfront park and a mountain in the distance. Our room was comfortably equipped with a TV, a DVD player, a small refrigerator, a water purifier, and most unexpectedly, a 100 Mbps LAN Internet access. I guess the information age has finally caught up with the developing world!
I took a stroll through our floor, and saw the stem cell treatment facility, a physical therapy unit, the nurses’ station, a small kitchenette, and a “amusement roomâ€, which is actually a game room with a large screen TV, comfortable sofas, two computer workstations, a play area for kids, and a place to host parties for patients. There was also twelve or so patient rooms with patients’ names on the door: one person from Australia, one from Italy, one from Romania, and the remaining 5-6 from the USA. Of course, everyone was asleep in that early hour, except the nurse on watch at the front desk. I introduced myself to the nurse, who was very nice and pleasant and spoke some limited English. She informed me that they needed to draw some blood from Momo and get urine and stool samples to run some tests for infectious diseases, as mandated by the Chinese government. As needle-phobic as Momo is, good luck with the IV!
The first time the nurse tried to draw blood, it was a disaster. It was hard to control or calm down Momo. After I spoke to him about why we need to do this and applying some lidocaine cream (a topical anesthetic we had brought from the US specifically for this purpose), with the help of three nurses, we were able to draw 10 cc of blood. The nurse asked us his weight and birthweight, and it took some mental arithmetic to convert pounds to kilograms. Apparently, the FPS metric system we use in the USA is not very popular in the rest of the world. The thermostat on our AC was calibrated from 10 to 30, and without a calculator, it takes a little while to figure out that 72 F is actually 22 C or so.
Just about when we were able to grab a quick breakfast of cookies and hot cocoa, Dr. Mike, the “head doctor†came in. I gave him Momo’s medical records and MRI on a CD – digitization has done wonders for carrying and sharing medical images. A group of doctors came in a short while later, which included Dr. Jack, Dr. Tony, Dr. Drew, and Dr. Mary, along with a couple of nurses and an interpreter Jerry. Dr. Jack is Momo’s attending physician. Dr. Mary, spoke good English as did Dr. Mike, but we talked to Dr. Jack through the interpretor. They did a physical exam, asked a series of questions, discussed among themselves (in Chinese), took notes, and left.
Next on tap was a therapy evaluation, which had to be juggled a couple of times to accommodate other patients. As Momo went with his mom to see James, the therapist at 11:00 am, Johnny came and took our lunch orders from a local restaurant, and asked me to accompany him for a tour to the local supermarket, RT Market, where we can get most of our daily necessities.
RT Market was a short five minute walk from the hospital. On our way there, we passed an old building with tall ornate architectural columns similar to the federal buildings in Washington DC. Johnny said that it was a government building owned by the Communist party. We also saw a McDonald and a KFC in the near vicinity, and Johnny indicated that there were some 200 KFC’s in the City of Hangzhou, and that they are always crowded. Colonel Sanders would be proud!
RT Market is a multi-storyed retail store, sort of like a scaled-down version of a Walmart Supercenter. The second floor sells groceries and the third floor has electronics, clothing, small appliances, detergents, and such. The entry is on the third floor and the exit is on the second floor. Hence, you have to go through the third floor to get to the second floor. The choices are somewhat limited. For instance, you won’t get all of the different kinds of cheddar, Romano, and Mozzarella cheese that you can get at a US grocery store, but you’ll get the basic American cheese singles, Philly cream cheese, and such. There were also some exotic items, such as live eels in a shallow tank. As crowded as the store was, it was interesting to see that the supermarket had several staffed weighing stalls throughout the store, where clerks weighed, priced, and bar-coded items that were sold by weight, such as fresh produce or unpackaged meat. This distribution of labor helped the crowded check-out counters move faster. Another thing that struck me was how small some of the package sizes were. For instance, the largest bag of Lay potato chips I could find were not the 12 or 16 oz that you can get in the USA, or even the standard 6 oz, but only 4.5 oz. Further, to our dismay, microwave-ready meals, which are standard in many busy American households, are not available here at all. Maybe the Chinese don’t like junk food or instant meals.
Our lunch was delivered to our room around 12 noon. Momo had fried rice with eggs, and we had fried noodles with pork and shrimp. The food looked greasy and unhealthy, but it was warm and a welcome respite from two days of bland airline food. All of our appointments for the day were over, and we were still so tired from the previous night, we spent the rest of the day sleeping, and then stayed awake for much of the night. I guess that it will take us a few more days to adjust to the 13-hour time difference.
Downtown Hangzhou from our hospital floor. RT Market is the second (5-storied) white building in the middle. In an interesting contrast, high-rises and agricultural land (the green swath in the foreground) coexist in the city – maybe it’s just a matter of time before all agricultural land is replaced with high-rises.
Rows of lower-end multi-colored apartment buildings behind our hospital
A street in Hangzhou. It looks just like that in any major US city. Notice the feeder lanes on both sides of the road, separated from the main road by medians. These lanes are used by two-wheelers, three-wheelers (mopeds customized with a cab in the rear), and bicycles – there are a lot of these on Chinese streets.
February 21st, 2008
After months of eager anticipation and planning, we boarded a United Airline flight from Tampa in the early morning hours on Feb 17, 2008 for Momo’s treatment at the Stem Cell Transplantation Center at Zhejiang Xiaoshan Hospital near Hangzhou, China. The treatment, accommodation, and other arrangements were handled by Beike Biotech, a private company based in Shenzhen Province, China and supported by a consortium of leading regional research universities including Beijing University and Hong Kong University of Science and Technology. Beike has been doing stem-cell treatment for people with spinal cord and brain injuries for two years now, but started treating optic nerve atrophy patients only recently.
Our flight to Chicago O’Hare Airport was uneventful. It was a bright chilly morning in Chicago with temperature in the teens (Fahrenheit), but little did we know that our nightmare at O’Hare had just started.
Upon landing at Chicago, we were informed that the United flight to Beijing was delayed until the next day due to non-availability of crew. I have experienced airline delays due to bad weather, engine malfunction, and such, but never because the crew did not show up for work! In fact, the customer service person said quite nonchalantly that such delays happen once or twice every week on the Beijing flight. We were given hotel and meal vouchers, but being stranded in the sub-freezing Chicago cold with a hyperactive child with limited mobility was challenging and stressful, to say the least. With no assistance from the airline or the airport, it took us several hours to navigate through the terminals, gates, and ground transportation to reach our hotel. To top it all, the United customer disservice staff rebooked our connections to Hangzhou on a flight that would have departed Beijing before we reached there, then booked us on the right flight but forgot to issue tickets, and finally got us the tickets at the third attempt. Then it took them 40 minutes to get a wheelchair for Momo, apparently because the wheelchair assistant was waiting at the wrong place. What a display of incompetency!
The following morning, our 8:00 am flight to Beijing departed at 10:20 am because of water dripping from a door that was not shut properly. The airline gave us a written apology for the 21-hour delay with a promise of sending us a “friendship kitâ€, which I hope is not a bag of body lotions, baby oils, and hair gels. The crew was asked to be “extra nice†to passengers, which they were. And finally, after 13 hours of flying in cramped economy-class seats, over the North Pole at -72 F, we finally arrived at Beijing. A wheelchair was waiting for Momo at the gate when we landed, and we were whisked through immigration, baggage claim, customs, ticket counter (where we were issued new tickets and baggage tags), security, and to our departure gate, all in under an hour. Now that’s probably why Asian airlines consistently rate higher than most North American or European airlines in customer service and satisfaction.
Beijing airport was not only huge, but also incredibly clean and with all the modern amenities expected of a large international airport. There were over 30 immigration counters to check travel documents for incoming international passengers, which I had seen at Newark, JFK, and other US gateway airports, but not in other Asian airports. Surprisingly, all airport employees seemed to be in their 20’s or 30’s. Is this age discrimination? Further, all airport employees, from our wheelchair assistant to the elevator staff, were dressed impeccably in formal dark blue suits. I’m not sure if this is the real thing or window dressing for the upcoming Beijing Olympics, but it was very professional and refreshing!
Our connection flight to Hangzhou Xiaoshan International Airport was a 2-hour flight on Air China, which reached the destination 15 minutes ahead of schedule at 5 pm local time. Johnny, an international liaison for Beike and a vivacious and friendly young guy who spoke broken English, was waiting to pick us up at Hangzhou airport and drive us to the hospital. I converted some foreign exchange at the airport (1 USD = 7.15 RMB), and I was so relieved to find that the denomination of each bill was in English. I had earlier noticed during our Beijing flight that even when they showed the text in the Chinese language, the numeric quantities (e.g., temperature, time to destination, etc.) were always in English. I guess that there are no numbers in the Chinese language. Also, interestingly, unlike US bills bearing pictures of various US presidents, all Chinese bills of all denominations bore the picture of only one person: Mao Zedong, the first Premier of the People’s Republic of China.
We then drove 25 minutes from the airport to the hospital in downtown Xiaoshan, through a multi-lane highway lined with old mid-rise apartment buildings painted in an assortment of colors, zigzagging between traffic and jumping a couple of red lights. It seems that people in China have little regard for traffic rules than in most Western countries. We passed billboards bearing the picture of Yao Ming, the NBA superstar, who is apparently a huge Chinese icon. However, what impressed me most was that a clock on each traffic signs counting down to zero, showing exactly how much time is left until the green light turns yellow or red, or vice versa. I suppose this helps drivers plan accordingly and avoid accidents since there are many pedestrians on the streets and crossing busy intersections. Maybe this is one feature our urban planners can borrow from China.
By the time we checked in, our 24-hour journey has taken over 48 hours, and we were exhausted and completely famished. Johnny escorted us to our room on the 20th floor and gave us our schedule for the next day – it was a busy schedule full of tests, evaluations, and such. We unpacked, took showers, and immediately went to bed. Our long journey to China was finally over. Hopefully, tomorrow will be a better day.
February 21st, 2008
