Hi everyone!
So tomorrow morning (Wednesday for us) is Jillian’s first spinal injection of her own bone marrow stem cells. It is scheduled for 11 a.m. (So 11 p.m. EST on Tuesday night for you….10 p.m. CST) About an hour before, they will come in and insert the IV and start giving her fluids through it. She is not allowed to have anything to eat or drink after 8, so three hours before. Usually it is 2 hours before, but they are adding an extra hour in case she is not still and sedated enough for the regular transplantation room on this floor and has to be taken to the 3rd floor (which is a surgery floor) to be put under general anesthesia. So I need to make sure she gets breakfast and water before then. You all know how she loves her food!
As I’ve described before, this injection goes into the spine and directly into the cerebral spinal fluid which travels directly to the damaged ventricles in the brain. We have to be careful not to let her lift her head for 6 hours afterwards. If she does, it would increase the pressure in the ventricles and she would get a very bad headache for 2 days. So pray for that too, okay? A common side effect may be fever, nausea, and headache. But pray that our Little Bit doesn’t get any of those things.
I’ve included some pictures of the hospital so you can even picture in your mind where she is as she’s getting this done!
First of all, this is Aunt Carole. This is a picture of the night she got here. She was only here about 10 minutes in this picture. You can easily tell that Jillian is very happy to see her! If you click on the picture and enlarge it you can see a contented smile on her face.
Just some cute pictures of Jillian to remind you how darn cute she is (like you even could forget!) This was today in standing therapy. She’s getting to where she enjoys it.
Okay…..this is the view from our room to the right when I step out of our door. As you can see, the floor is kind of an oval shape. Just around this bend is what you see in the following pictures……
This is just around the bend from the previous picture. Ahead is the nurses’ station. Just BEFORE the nurses’ station is two rooms on the left where the stem cell procedures take place. One is the spinal room, where only staff is allowed, and the other one right next to it is the room where they receive the IV injections and I can sit with her. You’ll notice a big hallway area before the nurses’ station; that is where the patients lay in their bed right after coming out of the spinal room. They lay there for maybe 45 minutes to an hour. (?) Jillian will be laying in this hallway too right after she comes out.
This is the spinal room. It’s like an opaque glass, but you can’t see in.
This is the IV injection room that is right next door to the spinal room above. I’ve got another picture from the opposite angle where you can see the layout of the rooms better. This is just the view walking from our room so you can (maybe) orient yourself a little.
This is the view from the opposite way. Just around that bend is our room, on the left, right past that plant you see. Can you see the opaque glass wall on the right? That’s the spinal room. And the room just before it with the door cracked open is the IV room. And there’s the hallway in front of it where the patients lay in their beds for a little while post spinal.
Here’s the nurses’ station from the same first angle I showed you, just closer up. I’m kind of standing in the place where the patients lay in the hall in their bed.
And standing in front of the nurses’ station, looking through to the doctors’ room. (I hope I’m not boring you guys!!!!!)
Okay, so that’s the lay of the front area. One day I’ll show you the other side of the oval, where the big kitchen (HA! That’s a joke!!!) is and the play room and family gathering room are. And I called that the “big” kitchen because there’s another kitchen that’s literally a third of the size that is the only place you are allowed to cook in. And you all saw that picture I had in an earlier post of the “kitchen”; well, that’s the big kitchen.
Did you know that it’s not really true that Chinese say “flied lice”? They really do pronounce their R’s. They do say “fried rice.” Just another useless piece of trivia…!!!!!!
Here are a few more pictures to show you some activity around here………..
This is sitting and listening to Zim play the guitar and sing after standing therapy. Jillian is in her glory when she’s listening to music, especially when it’s played “just for her.” This room always fills up with tons of people when Zim is entertaining; just like it did right after this picture.
This is Zim. He’s a VERY good musician.
This is Jillie and me with my friend Verica from Romania. She and I have really formed a bond and we will definitely stay in touch.
Me, Jillie, this toy horse thingy that she keeps wanting to rub noses with (hey, I’m just the reporter….I have no clue why she does that!), Anna her therapist, Elmo, Carole, and LaLa.
Jillian sitting with Anna, her therapist, listening to Zim play. This Chinese girl thinks my American husband is movie star cute!!!!
Here’s Carole, on the computer. Can you see a glimpse of the view behind her out of the window? Some big buildings out there. At night there’s lots of neon all lit up. Also, that’s a typical day fog-wise. It think there was actually a little bit of sunshine that day. My poor mom didn’t get to see a single ray of sunshine the whole week she was here.
This is a picture of Jillian watching very closely as the nurse is removing her last IV from her hand. She wanted nothing to do with it, then I promised her that it wouldn’t hurt, so she trusted me and watched very closely to make sure the nurse didn’t slip up.
This is LaLa, our caregiver that is still with us during some of the day. She loves Jillian SO much. She is knitting a pair of shoes for me. Isn’t that the sweetest thing?! She works for the equivalent of 10 U.S. dollars a day.
Today she took great care of Jillian while Carole was preparing dinner and I was preparing lunch. We decided to cook earlier because other people want to cook closer to dinner time; and, no kidding, only 2 people at a time can fit in the cooking kitchen, and even then you are stepping on each other. While Carole cooked I carted the dishes into the “big” kitchen to wash them. No lie, this is really like camping. I usually wash dishes in the bathroom sink! This experience just takes a little adjustment, that’s all!!!!! 
And, last but not least, a picture of Jillian in her highchair, watching DVD’s, and hooked up to the electrical muscle stimulation machine on her legs. Ain’t she cute???!!!!!
Okay, that’s all of the slideshow for now, folks!
But seriously, please be thinking and praying about Jillian before you go to bed tonight, okay? I know this is yet another step to her recovery! She’s already shown some little improvements (did I say plural? Yes, I did!!!) And I thought about it to myself, about posting on the blog about her clapping her hands, thinking “What if I jinx it?! Maybe I shouldn’t say anything!” But then I decided, “No, I’m AFFIRMING it!” And there’s more improvements to come too!
So God Bless you ALL!!!! God certainly blessed our little wonder-britches with this opportunity! Thank you, thank you, thank you for loving us and telling us that you do, for all the support you give us! There’s no failing with all of you holding her up!
We love you!
Tami and Jillian (and Carole too!)
September 16th, 2008
Hi friends and family!
Everything is going very good with Jillian. IN FACT……she has something new she is doing! Always before, when she would clap her hands, it was always with her thumbs tucked inside her closed fists. So she would hit her closed hands together. Yesterday, as I was trying to get her to sleep and she was all relaxed, she took both hands and “clapped,” very clumsily, her open palms together. Yes, the right hand too; which if anyone knows her, her right hand is closed tight a lot….she kind of uses it as a stabilizer, so to speak. Well, it was so cute and momentus, because she too realized she was doing something she couldn’t do before. She looked up at me with a small smile, as if to say, “Mom, look what my hands can do!” I said, “I see, honey! You’re clapping with your hands open! Congratulations!” She was very proud and kept doing it. Of course, that messsed up any chance of taking a nap…..but that’s okay. She’s usually been able to do it when asked to……most of the time. She has been using her right hand a little more, for instance, to turn a page in a book.
I asked Dr. Tony this morning if it is common to see something so soon after a stem cell injection, and what he said was that it is not necessarily the stem cells, but it is the “elements” or “components” of the stem cells more or less triggering the nervous system, something about gathering all the stem cells together. (?)Now, remember that there is a degree of a language barrier in conversations. But it was said that It is a very good sign!
I also discovered just a little bit ago that Jillian’s brain injury is a little bit more than I had always thought for these past four years. I always just thought it was in the left ventricle only, but I have been told this morning that in fact it is in both ventricles. But he said this is common in cerebral palsy, and that she should still respond well to the stem cell treatment.
Also I am told that her first spinal injection COULD be tomorrow. They will let me know in the morning. That is Tuesday morning for me (Monday night for you). I’ll let you all know as soon as I find out. If it is indeed that she is getting the spinal tomorrow, then I will make sure to throw on a quick post so you all can include her in your prayers before she “goes to sleep” and receives the procedure.
Okay, she has fallen asleep while I was writing this post (Thank God! finally!), so I am going to run (walk) quickly to the grocery store and let LaLa keep an eye on her meanwhile. Gotta get there and get back quickly, so I gotta sign off and say bye-bye! Love you all!
Remember that I’m still not able to retrieve comments…….but I will be able to once they fix whatever is going on with this silly thing.
All right! Love to everybody! Have a great day!!!!!
Love,
Tami and Jillian (and Carole too)
September 15th, 2008
Hi everybody!
Just wanted to let everyone know that Jillian is doing very well. Her temperature has been up and down for the past two days, but it’s not been anything that is really high. Dr. Mike told me that the prednisone (that must have been the anti-allergen medication I was talking about before) can make them warm. I was also told by Dr. Hong that a raise in temperature is common after a stem cell injection…..although it’s not as common after an IV, but most common after a spinal. She doesn’t seem to have a cold…..there’s been no coughing or runny nose. So must be a side affect of her miracle mixture. So you can all rest easy because she’s doing great.
My wonderful friend Carole arrived tonight!!!!! You would think she just drove across town…she arrived all bubbly and full of smiles! Jillian just about jumped out of her skin with happiness to see her Aunt Carole! I hope we’ll be able to go to West Lake tomorrow. They’re supposed to do some special sanitizing thing in all the rooms with vinegar where the patients have to leave anyhow, and they’re doing some minor construction in our room also, so I think that would be a perfect day to do something touristy. BUT….it’s supposed to be horrible weather. Go figure. There’s some temples at West Lake that are thousands of years old that I think would be interesting to see, and there are museums too. But you know that I’ll bombard you all with pictures if we indeed get to do some sightseeing.
I have the schedule for Jillian’s spinal injections. This coming Wednesday (Tuesday night for you) will be her first spinal. The next one is the following Monday (Sunday night for you), and after that is Friday (Thursday night for you). Then we leave to come home on September 29th, which was our original departure date. Carole, bless her heart, is staying with us for the duration.
Jillian has been waking up in the middle of the night and staying awake for a LOOONG TIME for the past 4-5 nights…..I’ve lost count. Aaaaaargh! Last night she was awake when the nurse came in at 3 a.m. to take her temperature and was giggling at the nurse. I knew that wasn’t a good sign. She finally went to sleep around 6:30 a.m.
I just have to tell you quickly about the dinner we had the other night. I ordered braised chicken. Sounds safe enough, eh? Well……there was, um, a chicken foot in it. Claws and all. I had to touch it to get it out. Can you feel me shudder all over again at the memory?
A woman I met that is here, we were talking and discussing where each other was from…..and guess where she’s from? Stuart. We’re neighbors (well, when we lived in Florida, that is). What a small world!!!! There are a couple of families that left in the last 2 days from the U.S., but still four families left from the U.S.; there are two families from Romania, a family from Italy, a family from Denmark, and a family from Hong Kong. There are a couple more coming in the next few days. It’s a true melting pot here on the 20th floor of Xiaoshan Hospital!
For some reason, I can’t access any of the recent comments that you all have left for us, say within the last day. As that is the highlight of my day, it’s really bumming me out. But it’ll be like Christmas when I do finally get to read all of them at once! So keep ‘em coming please, because you have no idea how much encouragement you give us.
I’m sending back some love to all of you, and kisses and hugs too, from me and Jillie Bean!
September 13th, 2008
Hi loved ones!
Okay…….Jillian has received her first stem cell injection! This injection was by IV, not spinal. She will receive the first spinal injection next week. With the IV, of course, it goes through the veins, but it still goes to the brain from the outside through the white matter, according to the doctor. When she receives the spinal injection, it will go directly into the cerebral spinal fluid and will travel directly to the ventricles in the brain, which is where the damaged tissue is.
The amount of the stem cells received was 20,025,000 (over 20 million). In an umbilical cord stem cell injection there is between 10 to 15 million. I guess I was mistaken about there being 6 to 7 times the amount of stem cells when it’s derived from bone marrow instead of umbilical cord. There is even someone that works here that I asked if that was true and they said they have always heard that was the case as well. But I guess I misunderstood. The lab counted the cells produced thus far and there are 100 million cells for injection. I’m pretty sure that she will still receive 4 injections total (the one IV from today and 3 spinals). But there will be more cells per injection. So this is GREAT that her little bone marrow produced so many stem cells!!!!!!!!!! She’s a strong little booger, ya know!
Jillian did have a slight allergic reaction though. While the stem cells were flowing through the IV, they also put in some medication which was anti-allergenic. But still, right after we got back in the room, we noticed a red rash around her throat area, also on her tummy around her belly button, and the outside of her thighs on her legs. She acted okay though. They gave her some more anti-allergy medication through the IV that was left inserted, but unconnected, in her hand. Within 10 minutes the rash was gone. She is acting just fine. She wouldn’t take a nap though so she’s a little tired.
She is running a little fever. But I have no idea if it’s from a cold that half of the staff has in the hospital or whether it’s from the stem cell injection. It’s driving me crazy not knowing too. I’ve asked other families, and they said they their child, or significant other, didn’t get a temperature after the IV injection, just after the spinal. BUT…..she did have a little low-grade fever this morning BEFORE the injection, then it went away on its own. So I just chalked it up to maybe the room was too warm or something. Then a few hours later, after the injection, I asked the nurses to check it again, and, yes, it was about 99.8……which is high for her. We’ve given her some Motrin, and it has brought it down. But it hasn’t brought it down to her normal….which she normally runs around 97.4, around there. It’s just that you don’t want a fever after receiving stem cells……the fever can kill off some of the stem cells.
The nurse just came in and checked while i am writing this and it is down to 97.4, and she is sweaty. Hmmmmmmm.
Jillian has sneezed a few times tonight. Man, I have been pretty anal about using Clorox wipes and wiping everything down when the first sign of a cold appeared here. Every time I come in the room after being in a common area, say around the microwave for instance, I sanitize my hands. I make sure the helper (we call her LaLa, by the way) keeps her hands clean too. Murphy’s Law isn’t supposed to be in China! How can it be that on the day of her first stem cell injection she starts getting a cold???!!!!! At least I’m leaning toward it being a little cold. I’d rather it be a cold than a reaction to the IV injection.
So everyone……… her first dose of magic mixture is circulating around in her little body, working miracles as we speak (or type and read)! Thanks, God, for this opportunity for our little girl!
Here are some pictures of the event so you can feel a little more connected……. (I look absolutely horrible…….yes, I do, and I know it. If it weren’t such a big event, I’d never be publishing myself on a public blog in the “condition” I’m in……but, hey, it’s all part of putting the kiddo first……!!!!!) Remember that you can click on a picture to enlarge it if you want to.
In this first row of pictures, Jillian has her IV in and they’re just running fluids through it. She is fascinated with this toy duck. It made her quite happy and you would never have known she had an IV in her arm.
This is Luca…..he is the patient coordinator. He’s been invaluable. Such a nice and caring guy. He was there for the whole process, from before the IV stick to going back to our room.
This is Dr. Mike. I’ve told you how wonderful he is. He’s the head doctor. Normally he isn’t present for IV injections, but he was with us for the whole process too, from before the IV stick, to going back to the room. Jillian received the VIP treatment with having Dr. Mike present.
I am actually holding the bag of stem cells in my hand before it is attached to the med pole.
Watching the miracle mixture drip, drip, drip into the IV.
Even the technician from the laboratory came up to see that everything was going good.
This is the rash that appeared on Jillian’s neck. It got redder after I took the picture. Had me worried.
So Jillian won’t allow even me to just TOUCH her right hand/arm with the IV in it. It’s still in, even as she’s sleeping. They’ve got it covered up pretty good so she can’t get to it in the middle of the night. But I think I’ll sleep a little lighter tonight just the same, in extra alert mode. Also because of her temperature issues, and to make sure she’s not too hot or too cold.
With that being said, I better hit the hay! I’m sorry it took so long to get this update out to all of you. Especially since I know many want to know as soon as possible how the injection went. I tried to get it out by morning because I know there are some of you that are actually checking the blog in the morning before you go to work. I’ve been working on this all day off and on, but things kept coming up.
I’ll post again tomorrow to let you know how she’s feeling.
I love you all! So does Jillian! PLEASE keep those prayers coming! Please!
Love,
Tami and Jillian
September 11th, 2008
Hi everybody!
Okay, now I know how to include pictures in a post!
But first, before the visual feast, I have an update about the date of the first injection. It is delayed another day. Now it is on Thursday (Wednesday night your time). That is when she will get her first IV stem cell injection (not the spinal).
Here’s some pictures to share so you have a visual of our adventure………enjoy! If you want to see any picture bigger, you can double-click on it to enlarge it.
At least Jillian was roomy and comfortable on the long plane ride!!!!!
This is the hospital: ZheJiang Xiaoshan Hospital…..and our room plaque with Jillian’s name from the USA
This is our rigged up luxury bath for Jillian. The child’s tub is tied in by a belt I used to have…..it was a braided belt that we unbraided and used the three lengths to tie it onto the safety rails around the toilet. The tub is kind of suspended in air above the john. It works though! Good thing Jillian’s not snooty!
This is a typical day outside. Although today as I’m writing this, it is sunshiny outside and I can actually see blue sky and see for miles! But it’s still very hazy. I was starting to think you never saw blue sky.
This is our room in the hospital. We’ve rearranged it so Jillian’s bed is alongside the wall so there’s more room.
This is the night I cooked spagetti for us and about 4 other families. It was a hit! What you see here is pretty much the whole “kitchen.”
This is Jillian in standing therapy.
Jillie and Grandmommy chillin’ and hangin’.
This is our first venture out of the hospital. We walked to a small park nearby. There’s tons of pictures…….
This is the night we went OUT! We went with an interpreter and a driver to (pronounced) Woo Shan Square. We didn’t stay very long because Jillian was tired and anxious to get to pizza. She didn’t give a hoot about being surrounded by Chinese culture….she wanted pizza. There’s a few I just have to narate…….
This is my favorite picture…..
This is all carved in wood…..there’s also a wood carving inside of some kind of warrior. it was very detailed and pretty.
Okay…..here’s where it gets really good. Remember I told you about throngs of people gathering around Jillian, saying how she looked like Barbie, etc.? Well, in these pictures, what you don’t see is the dozen or so people that stepped back so they wouldn’t be in the picture…….but this gives you an idea. And it’s been like this everywhere she goes. If they don’t stop and talk to her, they openly stare/look at her.
Jillie and Grandmommy by some lion statues
This is just some fancy apothecary…….I think that’s ginger in the big glass bowls. I just had to take this picture….for those of you that know me, you know I dig this kind of stuff…
The only part of the evening that Jillian cared about……Pizza Hut. She couldn’t wrap her mouth around a piece of pizza fast enough. They were shocked at how much she ate. And those of you that know her, you’re probably not shocked at all!
This is the Chinese lady that we have as a helper after Mom left. She LOVES Jillian and Jillian loves her right back……most of the time. She even bought a couple little presents for Jillian yesterday….some little hair ties and a Hello Kitty pen. It’s great having her here, because, for instance, when I am making lunch or at the nurses’ station, she is playing with Jillian. Even right now while I am doing this post, she has Jillian in the “play room” and they’re having a great time. I have to admit that I have to kind of fight to hold my little girl though!!!! She is ALWAYS trying to take her from me. Last night she helped me give Jillian a bath (you know, the part that scares me most because she’s so darn slippery and heavy when she’s wet.). So last night I was bathing Jillie….and the helper was “helping” me. She’s got her hands in there washing too………next thing I know I was slowly inched away to the side…..and before I knew it, I was out and she was in! She scrubbed and scrubbed Jillie. I don’t think Jillie has ever had such a thorough washing. She was taking her hands and rubbing, rubbing, rubbing……. I swear she removed a layer of skin! So I went ahead and got the towel ready……and I became the helper!
We went to the grocery store and walked through a park on the way. It was really pretty. (Mom, this park is prettier than the one we went to……it’s the one we see out of our window)
This is Jillian’s physical therapist, Anna.
Okay, that’s all the pictures I have for now…………but I’m sure it was enough, right???!!!!!! I’ll post a little as I go from now on so there’s not so many at one time.
We love you all! I’ve got to go get my little girl back now…………
P.S. >>>>> Just a thought…….still no comments to read from Daddy yet. 
September 9th, 2008
“Nee How” friends and family!
This morning, Monday morning to us and Sunday night to you, in doctors’ rounds, Dr. Mike announced that the cells are growing “very well” in the culture. Yaaaay!!!!!
I asked, based on how well they’re growing, do they have an idea of how many injections we might be able to get out of them, and he said probably 4. Yaaaay! Which my understanding is that, for instance, when an adult has a bone marrow transplant, they usually only get one injection. I was expecting maybe 3, and that was being reasonably optimistic. Dr. Mike even made the comment that maybe even the cells will keep multiplying and she may be able to receive 5 or 6. So, as I’m sure you’re gathering, we have NO IDEA when we are coming home.
I was told that she would receive her first IV stem cell (from her own bone marrow) injection on Wednesday. I was expecting it to be a little sooner; but I guess today is too soon, and they don’t do injections on Tuesdays, so Wednesday is it. From what I hear, the IV injections are very easy……..meaning there are no food and water restrictions before and after, and they don’t have to be sedated like with the spinal injections. But there’s still the dreaded and sad IV insertion….. And that darn topical Lidocaine DOESN’T WORK. It doesn’t numb the site AT ALL and she still feels it. After they insert the IV they will give her a bag or two of fluids through it, then she will receive her magic mixture for about 45 minutes. And she can eat and drink right after. Although the IV will stay in place, but not hooked up, for a full day. Unless this one blows out too. The last IV, inserted and left in place as a precaution from the bone marrow collection, “blew” after a few hours and had to be removed. After the last IV was inserted we covered their bandaging with Sesame Street band-aids, which did serve as a temporary distraction. So I guess I better have them ready on Wednesday.
It sounds like her first spinal injection won’t be until next Monday (Sunday night your time). This is what I’m assuming since the IV is on Wednesday, so I wouldn’t think the cells would be ready again in just 2 days. Regularly, with the typical umbilical stem cell regimen, they would get an IV injection on, say, Wednesday and then a spinal on Friday. But in that case, the formula is flown in already prepared. In Jillian’s case, her cells are culturing, so I would think there would not be enough time for enough to culture in two days time.
With the spinals, there are food and water restrictions, before and after because of the anesthesia. Before her bone marrow collection she couldn’t have anything to eat or drink for the 6 hours before, and all morning she kept looking at me and Mom and smacking her lips, telling us “hey, you’re slacking…..where’s my cold water and Cheerios?”
The main worry I have is that she might lift her head after the spinal, which is a BIG NO-NO. If she does that she would get a pretty bad headache for 2 days. The problem is that lifting her head is part of her communication to me……it’s her way of saying “I want to get up” or “pick me up Mom.”
Okay, so we’ll go over that bridge when we get to it. And with all of you behind us, I know it will be an easy bridge to cross.
Do you know we haven’t seen the sky since we’ve been here? ONE day there was sunshine. If it weren’t for the blue nurses’ uniforms, or blue shirts, cars, or towels, etc., I think we’d forget what the color was. The pollution is really bad. Do you know that our floor of the hospital, the 20th floor, considered the VIP floor, is the only air conditioned floor in the hospital (except for the surgery suite, etc.,)? Do you know that there are no child car seat laws here? Do you know that the lines painted on the street don’t mean a darn thing? Do you know that cars, not pedestrians, have the right-of-way? Do you know that every time you order chicken cashew, you never know what you’re going to get? It’s different every time. Do you know that there is a one-child-only law here? If you have a girl, then you are allowed to try for a boy in 5 years. Do you know that a driver’s license cost $25,000 RMB, which is like $3,500 USD? Do you know that an MRI here only costs $30 USD?
Anyways, there’s some useless trivia for you that might come in handy one day. Jillian is sleeping now, and I have to wake her up because the electrical muscle stimulation therapist is coming in 10 minutes. I sure hope she’s in a better mood this afternoon than she was all morning (she was up for a couple of hours during the night last night)! Wish us luck!
Sending you all some love that’s stretching around the globe………!!!!!!!!!!!!!!!
Hugs and kisses,
Tami and Jillian
September 8th, 2008
Hello! Actually that’s “Nee How” in Chinese!
My wonderful mom is officially gone. (sniff) It’s just me and Jillie Bean now. It was so great having her here. Couldn’t have done it without her, that’s for sure……..absolutely, positively. But before she left, we had to get her out of the hospital so she could feel like she had actually been in China. So…….
Yesterday we went OUT! Yes, OUT! A translator and a driver took us to Wooshan (that’s how it’s pronounced anyways) Square, and it was GREAT! It’s like a big outdoor shopping square. It was very Chinese……I mean I guess what do you expect since we’re in China?! It was old mixed with new, so “Chinesee” you would think it was designed by a tourist board or something.
I had heard before we came that the Chinese openly stare at non-Asian people….and they weren’t kidding or exaggerating. Jillian was like a tourist attraction to them. There was one point where there were about 20 Chinese people just standing around her and looking and talking to her. The translator told us they were saying things like “she looks like a toy,” or ”she looks like Barbie.” They would bring their children over to show them the little curly-haired American blonde girl. At one point, she looked up at the crowd, and they all chattered something excitedly……Apparently the light must have caught her blue eyes just right.
We promised to get her some pizza. She thought the shopping thing needed to be moved along so we could hurry to the pizza. Yes, they have a Pizza Hut. I took a picture. The pizza was actually pretty darn good. But they had things on their menu that we don’t have, like ribs, shrimp dishes, cappuccino, onion rings, alcoholic beverages, all kinds of Americanized things. We invited the driver to come in for pizza also, and it was so funny because he tried to pick up the WHOLE slice with his knife and fork……seriously lacking success. He tasted an onion ring with a look on his face like we would have on our face if we were tasting fried scorpions (and yes, they do have that…..and more!)
Jillian has been sleeping really well too! Oh, thank God! She’s adjusting really well. We still don’t know the plan for her stem cell injections, but we’re hoping to find out on Monday how the cells are growing in the culture. I think they’re hoping for 3-4 stem cell injections; the first one by IV and the rest by spinal. She could actually get her first IV stem cell injection on Monday, or probably Tuesday. So we’re kind of in limbo right now.
There are some really fantastic people here in this hospital for treatment. It seems that the hospital tries to group certain nationalities at the same time. For instance, right now there are a bunch of American families, and then there are quite a few families from Romania. There is a guy here that I think Jillian would give me up for. He’s from Idaho and he’s here to help his friend Jud through the treatment. She’s all eyes for Zimm (he won’t tell anybody his real name). If you all know Jillian, she’s a sucker for anything musical. So Zimm plays the guitar…..a lot. He lets her play his guitar, and she thinks he is the cat’s meow. I told him that one of her favorite songs is “My Girl,” so he plays and sings that song for her daily; and sometimes while he is playing and singing, he has to stop and smile because she is looking at him so adoringly. If he walks by in the hall, she yells out, loudly, and doesn’t give a hoot what DVD is on currently. I think we might be experiencing her first crush. It’s really kind of cute. He gets all wrapped up with Jillian’s attention, and is crazy about her too and plays especially for her daily.
I have some pictures to share……but I’m afraid I’m not blog savvy……but I’m going to try to figure out how to upload them. If not, then I’ll send them out by regular e-mail to everybody. But don’t lose faith in me…….I’ll get it figured out.
But I just wanted to share the current highlights on our adventure. And to say thanks, again, from the bottom of my heart for all of your comments, sending along SO MUCH love to us. I read them to Jillian too. But sometimes I get a little choked up, and she looks at me kind of funny. You have no idea how much all of your support means to us!
I’ll post again soon! Love to all of you! Zi Jin (bye-bye)!
Tami and Jillie Bean
September 6th, 2008
Hello everybody!
Just wanted to let you know that Jillian is doing GREAT! Today is the best day she’s had yet……even after bone marrow collection yesterday! She slept good last night, did not wake up early, is smiling, laughing, “talking” to her DVD’s, playing. The puncture spots on her back look great, almost like they’re barely there.
Also I want to thank EVERYONE for your posts of love, encouragement, and prayers! I can’t tell you how much I look forward to seeing a new post to us every day. There are even some of you that are sending posts that we have never met before! Please understand that I can’t respond individually to your posts, but know that each one I read is SO very special. I usually even read them over a few times.
I’ve been telling Jillie that everyone is sending hugs and sugars to her.
Sending e-love back to everybody! Will post again soon! Love you all!
September 5th, 2008
I have an update for the update! But first, if you haven’t read my last post about the bone marrow collection, you can just scroll down and read it first……then you won’t miss one juicy detail!
So you all don’t worry, Jillian woke up (right after I uploaded that last post) and she is doing great! She even gave me a glimmer of a smile. And when I told her we’d have a peanut butter and jelly sandwich, that little smile grew pretty big. So she’s been awake a couple of hours, has eaten and did not upchuck (for lack of a better term), and has laughed and been happy. Her vitals are all good. The IV has been removed. We had to change the bandage on her puncture site, and I’ll tell you what it’s like. There’s two small puncture holes on the back of each of her hips. She doesn’t seem to be in pain. She’s supposed to stay in bed for 24 hours and I’m not to carry her around. So I just wanted to fill you all in that Jillian is doing great, and the nurses will continue to check on her through the night to make sure she stays that way.
I’m pretty sure (the language barrier) that one of the doctors said that she is the first bone marrow collection/transplant performed on a small child at this particular hospital. They have no idea how many stem cell injections she will have. It all depends on how the cells grow out in the culture.
Thank you all for loving her so much and checking in on her! I’ll post again when I know anything else. We love you all so much!
September 4th, 2008
Hi family and friends!
Jillie is sleeping right now. She has had her bone marrow collection and it was successful. Dr. Mike seemed happy with the procedure and the amount collected. They were aiming for 50 ml and they were able to get 60 ml. The bag of bone marrow was immediately whisked away to the lab to begin culturing so it can multiply her very own stem cells. Believe it or not they even showed it to us. The doctor held a stainless steel box wrapped up in white linen, and he unwrapped it and lifted the lid to show us the bag of her bone marrow. It looks just like regular blood.
They collected the bone marrow from the big bones on her hips, like above her butt. They collected from each side, so two holes. When I’ve talked to adults that have had it done, they said they were fine afterwards, that it really didn’t hurt that much. Now Jillian has to stay in bed for 24 hours and rest…
I won’t lie and say that Jillian was happy though. Really all morning she kept looking at me and smacking her lips to tell me she wanted something to drink and eat. But I couldn’t let her have anything. Then they came in to place the IV, and unlike when she was a preemie in the hospital, they got it the first time and got it very quickly. But she wasn’t happy about it at all. They wrapped it up like normal and then she got some Sesame Street bandaids over the top of it.
They let me stay with her while they gave her the anesthesia, most of it, and she was in a very twilight state when they wheeled her away. When she woke up after the surgery I think she was scared and she cried a lot, she wasn’t happy at all. She didn’t want any nurses or doctors near her. She gave them a fit when they were trying to check her blood pressure and give her some oxygen. They said I could give her a banana, and I did, and that relaxed her some, and then I gave her a little of her soy milk in a bottle and she fell asleep and has been sleeping peacefully ever since. They are very thorough…they come in about every 20 minutes and check on her blood oxygen level and check the IV. She is doing good.
So now we just wait and see how the stem cells culture, how they grow and proliferate. It will be a few days until we know how well her bone marrow is culturing and get an idea of when her first transfusion will be. If all goes well, she will get her first stem cell transfusion by IV in approximately another 4 days. Then, again depending, her first lumbar injection might be in another four days after that.
I’ll do another post tomorrow to let everyone know how she is after she wakes up. We are cleared from the physical therapy schedule tomorrow, so she should be able to just relax and play. I think when she wakes up today she has definitely earned a peanut butter and jelly sandwich and some delicious cookies I found in the grocery store! Oh, and she is not allowed to have a bath for 3 days.
Thank you all so much for your prayers and the love and support you are sending our way. And thanks for the comments you’ve posted on the blog. I really looking forward to reading your comments. That’s the first thing I do when I sign onto the computer.
Tomorrow is really the last day that my mom will be here with us because she leaves Saturday morning. What a bummer.
And to our friends and family in Florida, I’ll be thinking of you as that hurricane comes your way. I’ll send back some prayers to keep you all safe and sound.
We love you all! Will keep you posted often.
September 4th, 2008
Next Posts
Previous Posts
