Greetings From China :)
We finally arrived in China this past Friday evening after a harrowing journey of 20 hours, 3 planes, a customs battle over Pediasure and just a few mini meltdowns along the way. It's now Monday herel and Scarlett is scheduled for her first stem cell treatment Wednesday afternoon. It's been so nice to meet the other patients and their families; to share in their success and empathize with each other's stress over seeing our children in pain, albeit for a very worthy reason.
It's still a mystery to my mother and I, but our family seems to be something of a tourist attraction ourselves. Something about the combination of my rediculoulsy red hair/white skin and the fact that Scarlett is herself half asian, it makes for a spectacle when we go outside the hospital anywhere. So far we've had our pictures taken 4 times, innumberable stares, and the locals can't help but want to hug Scarlett (although she still seems a bit weirded out by the whole thing lol). I had no idea how different China is form the US. We still can't seem to shake the feeling of being in a Twilight Zone episode. For one thing the locals are very friendly, they will not hesistate to come right up to you and give you a hug and talk to you in full speed Chinese as you look on in utter perplexion. Scarlett had a meltdown in the Lotte Mart (coolest place ever, I could spend days in there and still not see everything), a combonation of the heat, smell of raw fish in the market, and exhaustion put her into a screming/puking fit in what has to be the most crowded place on earth. All of a sudden half a dozen people come running up to help, comforting her, giving her candy, wanting to hold her. It's so different from the US, where we would probably just turn our heads to give the person privacy all the while rolling our eyes over the commotion. My mother and I found out the hard (and slightly disturbing) way that China also lacks some of the safety codes that we consider a given in the states. On our first night, we walked out the door of our room into the hallway to discover that we had been locked in the hospital, all doors exiting out floor were padlocked with chain links and all. Considering we're on the 9th floor, it makes you wonder exactly what we're to do should there be a fire or emergency. In the morning the translators assured us that the locks were meant to keep people out as opposed to keeping us in, although that as well is not exactly a comfort. The point is, they just don't have regulations for such things, thus we will be very careful with any flammable items lol. There are apparently no (or very few) traffic laws either. There are no such things as stop signs. There are crosswalks, but I would highly reccommend running because the locals are fast and they do not stop for pedestrians, although they do honk quite a bit to warn you they're coming lol.
All in all, I feel like the next 32 days are going to be certainly one of the most difficult, but also rewarding and worthwhile experiences of our lives. Suprisingly, Scarlett is rediculously happy when not in treatments, she seems to be growing up and changing already. Plus, I swear she is starting to speak Chinese lol. Following her first treatment of stem cells on Wednesday, she will also be in a program of alternating sessions of physical therapy, electronic wave therapy, and accupuncture to boost the efficacy of the cells. We can't wait to see the change that others have witnessed in their own children (there are a few adult patients as well), and we have nothing but hope for the outcome :)
July 22, 2009
Treatment #1
Today is Wednesday, the day of Scarlett's first stem cell treatment. We woke up early in the morning (although Scarlett had been awake for hours rolling around on the bigger bed singing while I tried desperately to sleep lol). I got dressed and ready for the day with a heavy feeling of nervous energy. Around 10 the nurses filed in our room in a group of four, all in their customary powder blue uniforms with the cute little tri-corner hats like they wear in the movies. As they prepared to insert her IV port, I turned on Scarlett's mini kid's MP3 player and put the headphones over her head. Although music is one of her greatest loves in life I sense that she is starting to associate this ritual with neagtive events such as this. I imagine it is hard to care much about Raffi or the five little ducks when four people are holding you down and pricking you with needles. It's moments like this that I do have those passing thoughts, hating myself for putting her through any kind of pain. It takes us both awhile to calm down and regroup, she drifting into sleep with the sounds of lullabies in her tiny ears and I reminding myself that this is all indeed very much worth the pain and stress it inflicts on us all.
There is still about 2 hours until she will recieve the stem cell infusion and it's the waiting that is the hardest at this point. It's supposed to take just 20 minutes for the cells to slowly drip from the IV into her veins where they will begin to do their amazing work.
July 23, 2009
Day After Treatment #1
Scarlett's first treatment went fairly well considering. We went into the IV Room around 4 pm where 3 other patients were already recieving their treatments. Scarlett was quite tired from not sleeping the night before and from the trial of giving blood earlier, so luckily she was pretty calm for most of the session. The stem cells in the IV bag were a strange yellow color, quite honestly the color of pee, though hopefully not for what they cost lol. Once attached to the IV port in her foot, it took about a half hour for the cells to run their course and then they were followed by a saline drip to flush the tubes. The entire day had felt like torture, its the waiuting that's excruciating. So much time I spent pacing our room and looking out the door to the nurse's station trying to telepathically will them to move faster. I felt like we needed to just get it over with quickly for Scarlett's sake, but looking back now I realize it was really my mother and I who were not dealing so well with the stress of it. After treatment, we all needed to get out of the stifiling hospital, so we decided to venture out to the RT Mart ( basically a compacted combonation of outlets, grocery store, and like a Wal-Mart). What I have learned the hard way regarding Chinese supermarkets is first; breathe through your mouth not your nose and second; avoid passing through the meat/seafood section at all costs. Being an animal person myslef, I admit I was taken aback a bit and a little sick to my stomach to see that the RT Mart's meat department looks more like a pet store, but certainly not in a good way. As we came down the escalators and turned the corner past the fish tanks my mother whitened a bit and just kept saying to herself "those are not real turtles, those are not real turtles" (keep in mind this is a woman who on numerous occasions has stopped her car amidst traffic on the highway and run in front of speeding cars to rescue a lone box turtle trying to cross). Needless to say, we have become temporary vegetarians.
July 26, 2009
How Many More Days?...
Time seems to crawl by at an unseemly pace here. Scarlett has stem cell treatments usually once or twice a week and then every day aside from our 2 days off she has physical therapy and accupunture/accupressure sessions. On days not filled with anxious waiting for the trial of IV ports to be inserted and then the slow drip of stem cells, we are fighting hard to fill the time. We have become increasingly desperate for activities. Today we happen to spot something resembling a playground in the distance from the kitchen window so we haphazardly set out to find it only to discover it was fenced in an international elementary school. Although I downloaded a few movies in my computer before I left home, I hadn't anticipated we would blow through them in less than a week. We've walked to the Lotte Mart across the street more times that I can count and I even ran through the pouring rain 5 blocks to the RT Mart just for some menial entertainment while Scarlett and my mom took a nap. At first when we got here and for a week or so I hadn't really minded being here, I was so focused on regulating oursleves to the patteren of treatments and getting adjusted that I hardly had time to sit and think of home. Now with each passing day, the next becomes that much harder. 23 days, hooray, I think.
July 29, 2009
Good Things Are Happening :)
So Scarlett has had 2 treatments now, and I can already seen an enormous change come over her. There's something about China that just suits her well. I don't think I have ever seen her happier (with the exception of during treatment times, where understandably you can sense she would like to hurt us all). She has so much fun just crawling around the activities room as we sometimes accidentally pelt her with stray ping pong balls, or climbing over piles of pillows on the bed in our room singing every song she knows that has either a duck or a chicken in it (an obsession of hers, don't ask me why). And when we go for walks she really looks at things as we pass, cranes her neck and turns her head back and forth to see, she even grabs things off of the shelves at Lotte Mart! Since she has developed such a keen ability to "sense" things around her it's very difficult to judge exactly what or how much she can see, but it's astonishing how she can find things on the floor without ever having heard them or even searched for them, it's truly amazing. Only 1/3 of the way through her treatments, we are incredibly hopefull at what will be the ending results.
August 1, 2009
Treatment #3
Friday was Scarlett's third treatment, half way through! It went very well, she slept through part of the IV infusion and when she woke up she was just a happy as ever. Although the lumbar treatements are supposedly more effective I'm glad we opted to stick to strickly IV's. I can't imagine having to put her through any extra pain or stress, and honestly I seriously doubt she would be capable of holding still and laying flat for 6 hours following the treatment as they're required to do. I've heard of other patients having some bad reactions and symptoms following the stem cells, but so far Scarlett has taken exceptionally well to them. The doctors asked me if she was having trouble sleeping, but considering she has never slept through the night in her life it's not a simple answer. It's a bit of a challenge dealing with her odd sleeping patterns here as we only have two beds and very little space to move around in. My mother and I have to buffer the ends and edges of the bed so Scarlett won't crawl right off as she typically wakes up late at night and plays until 3 or 4 am, so its a bit akward and occasionally impossible to sleep. After 3 treatments, I have no doubt that Scarlett has light perception as well as some general vision. It's very difficult at this age to figure out exactly how much and what she sees as she can't simply tell us. When we get home I'll take her to her opthalmologist to see what tests he can do to measure her vision. From what I can tell she can see light (the sun, flashing lights on her toys) and general shapes of objects close up. She has a new obsession with hands, she'll spend 15 minutes just waving to herself and although she was never interested in them before, all of a sudden she likes to hold my hand and thread her fingers through mine. She can even entertain herself just lifting her foot up near her eyes (yes she is rediculously flexible) and "waving" with her toes lol. When I place toys or her cup out of range of her hearing, she will find them instantly and without having to search with her hands like she once did. We have a play mat on the floor of our room and Scarlett will gravitate toward the yellow square, get her face within inches of the pictures and colors and just stare at it, cocking her head back and forth. But in my opinion the best change that has occurred lately is that she really looks at your face when you talk to her and she actually reached up to touch mine, something she has never done before.
August 4, 2009
Treatment #4
Today is Scarlett's fourth treatment and we're all just sitting here watching the clock tick by the minutes until it's time. Scarlett fell asleep from exhaustion following a particularly difficult stick for the IV port. They ended up having to shave some of her hair in the front of her head and place it there as the veins were stronger (yes I teared up a bit watching her little brown curls hit the floor). For some reason I can't help but be pensive today, a random thought occurred to me that the last time she had her hair cut (for the first time actually) was for a similarly sad reason, when she had her Chiari surgery and shunt placement. I try to keep things in perspective; our situation could always be much worse, and although she has considerable medical issues, Scarlett is actually quite healthy and high functioning for a child with SOD. Still, there's a part of me that can't help but be a little sad for the loss of some of those pinnacle moments in childhood, even just the idea that this is the only summer she will be 2 and she has to spend it in a hospital in constant fear of strangers coming at her with needles. One of the other patient's mothers mentioned that their family at home saw their pictures and commented how it looked like they we're having a great time, almost like a vacation. When I looked at the pictures I had taken up until that point, I realized how they could be misconstrued. I suppose a part of me wishes that if I just take pictures of the happy times it will erase the memories of all the painful experiences for Scarlett. I feel that it is important to document both the good and the bad of this journey, not just so those back home realize that this trip is indeed for the purpose of a serious medical treatment, but also so that when Scarlett and I look back we can see just how far we've come and the struggles we endured to bring some hope to her life, all of which will be rewarded in the end.
August 7, 2009
Jimo Market
Friday was our day off so we planned on a trip downtown to Jimo Market. Jimo is a massive sort of indoor flea market with dozens of little shops and stands selling anything from cheap souvenirs, real or fake Prada bags, jewelry of all kinds, and jade in every shape and context imaginable. We really didn’t have much money to spend, we mostly just wanted to get out of the hospital and find some inexpensive gifts for people back home. The market was expectedly crowded and bustling so I was glad Scarlett fell asleep in the car on the way there and slept through most of the trip. Most of the sellers had similar things, jewelry is extremely popular especially pearl and jade. My mother had fun haggling, pretending to walk away and act disinterested so they would lower their price, at Jimo bargaining is a given the sellers actually encouraged and seemed to enjoy it. We were really only looking for one thing for ourselves; a silk Chinese dress for Scarlett which we did eventually find after much searching. After Jimo, we asked the driver to stop at Mary’s Mart, the only local grocery store that sells American foods. We were simultaneously comforted by the sight of such wonderful, familiar foods and shocked by how ridiculously expensive they were. My mother and I picked up a basketful of items and ended up putting back over half, limiting ourselves to just a few staples and food for Scarlett to eat. But that night for dinner I had no idea how wonderful a box of macaroni and cheese could taste. If nothing else, we have certainly become so much more appreciative of the little things in life.
August 9, 2009
10 days left and counting. As most of the American and English speaking families have gone home, we’re feeling even more yearning to finish up here and come home. Scarlett has 2 more treatments left, scheduled for this Monday and Friday, then we’ll have nothing but a few therapy sessions for another ½ week till we leave. All things considered, Scarlett is actually quite content here. She’s gotten better about not protesting so much when people come up to speaking Chinese (she immediately assumed they were coming with needles regardless of who they were). And she’s even nicer to poor Owen, our physical therapist and acupuncturist, who God help him had the task of trying to treat her 2 times a day as she screamed, kicked and tossed all the pens out of his coat pocket at him lol. She’s certainly adopted some new attitude, not that she didn’t plenty to begin with. When the nurses knock on our door several times a day, she tells them to “come in” and she has rather nicely come to terms with the fact that they insist on taking her temperature numerous times a day. I still hold my breath a little when we go into the store or for a walk and unfailingly someone will come up to her, hoping that it will not result in a fit that makes them either laugh and bring more people over to see or makes them fear she is perhaps rabid. But she’s making progress which can only happen the more she is exposed to people and situations, perhaps she just inherited a tad too much of my own social ineptness. It still amazes me how her eyes look so normal now. They don’t wander as much (usually only when she’s tired and isn’t focusing), the pupils seem to dilate quicker, and she’s getting better about tracking things. I only hope that when we get home there is someone, a doctor or specialist, who can help me teach her to work with and cultivate her newfound vision.
August 11, 2009
As our days here grow fewer, it seems, the more anxious we get to go home. When we started out it was a little easier to resign ourselves to our purpose and keep focused on staying in the moment, but now Scarlett has just 1 treatment left to go (oh thank God) and we're starting to feel the pull of home even more. With very limited spending money (we pretty much just managed to raise enough to live on) it's tough finding things to occupy the time. Most places you can visit either for shopping or sightseeing are a good distance from the hospital (most is downtown, about an hour away) thus it requires money to pay either a taxi or a hospital driver to take you somewhere of interest. We've always been big on walking places (thats pretty much the only way Scarlett and I manage to get around at home), so after about 2 weeks, we had already ambled in every given direction from the hospital to see what was nearby. So aside from playing ping pong in the activity room, attempting to understand whats going on on 1 of the 4 Chinese TV channels we get, sitting downstairs in the common room hoping someone who speaks English is equally bored and wants to talk, or pouring over your computer, there's little else to do.
Once you get into the "home" mindframe, it's hard to get out. Even Scarlett was singing "Home on the Range" and it occurred to me just how close we really were. There's so much to do when we get back in terms of her doctors appointments. We're supposed to see at least 2 of her doctors very soon after coming back. I'm also currently researching and seriously considering whether Scarlett may recieve Hyperbaric Oxygen Therapy. I had heard about it prior to signing up for the stem cell program and we've been talking to some of the other patient's families about it as well. One family said they actually own one themselves, that you can rent or buy them or just go to a clinic for sessions. Hyperbaric Oxygen Therapy (HBOT) is used to treat patients following stem cell procedures as well as many other conditions including MS, autism, lyme disease, cerebal palsy, etc. The use of HBOT increases oxygen concentration in all body tissues and blood flow to damaged organs, which in Scarlett's case would be her optic nerves. The increased circulation and oxygen mobilizes and stimulates the stem cells to take effect where they are most needed in the body. It's certainly something we are seriously considering, just a matter of figuring out whether it would be financially possible (although who ever would have thought that we'd raise almost $30,000 to go to China, so anything's possible). For now, I'm making my to-do lists on the side and focusing on getting her through the last stem cell treatment on Friday.
August 20, 2009
Going Home!
Today is our last day, finally! We're all so excited to go home, though not really thrilled about first, the idea of packing and second, the 20 hour flight ahead of us lol. But it's all worth it and by 6am Friday we'll be back to our lives (and lonely dogs). Scarlett's last treatment was this past Friday. My mother flimed the last moment of the final batch of stem cells flowing through the IV and you can almost sense Scarlett relaxing a bit just knowing the pain of the treatments we're finally behind her. The days up until now have been a bit excruciating, it's strange but it's almost easier to wait for something you're looking forward to when it's farther away, as our departure date drew nearer we all became even more impatient.
It is a bittersweet thing though to say goodbye. We will definately miss the wonderful staff and families here. Everyone has been so kind and generous, helping us through this rediculously stressful journey. We came here with just one goal: for Scarlett to gain any improvement to her vision to make her life a little bit easier as she grew up. All in all, I feel like the results we have seen already have exceeded our expectations. I only hope that people back home can understand that Scarlett will need a little time to re-adjust to being home for one, and to calm her apprehension about people approaching her (in all fairness, most new people she met here did come baring needles so I would be a little paranoid too). Hopefully once we get home Scarlett will continue to thrive and finally have a chance to just be a kid and have fun. I will continue updating as much as possible on Scarlett's progress as time goes by.
Again, I can't say it enough, thank you to Beike and everyone at the Qingdao Hospital!
