Journal History

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Saturday, May 15, 2004 8:35 PM CDT

I guess I should update, but there really isn't much new going on, we're mostly just getting ready for our move. Haley and Kyle are officially yellow belts now, they had their awards ceremony. Haley took sixth place (a semi-finalist) in the state tournament, YAY HALEY! We were really proud of her. There was a cheerleading meet going on in the same arena with really loud music, it was pretty distracting, but most of the kids doing karate blocked it out pretty well.

Jordan is still doing great! His allergies are acting up again and as usual he had to have one day of vomiting and diarrhea to make sure I was still paying attention. I have to say, it doesn't matter how well he's doing, I worry with every little thing and I probably always will. He has a couple bruises on his legs (it's no wonder the way he climbs around like a monkey on the swingset) and I drill him about every one: How did you get that? Did you fall, did you get hurt? Don't you remember? It's always a relief when I can remember him doing something specific, but he's five and doesn't tell me every time he gets hurt anymore. Oh, and I've been dumped. He's now decided that he's going to marry Haley since I'm already married. Sigh.

We've taken to calling Zach "Mr. Destructo". He has gone from being a sweet, obedient little toddler to a menace. I guess he's jealous of Luke. He is into everything and right now I have alot of our things boxed up for the move so he likes to climb up the stacks of boxes. Kyle has decided that Zach isn't scared of anything. I tried to explain to him that he could fall and get hurt and he said "but I didn't fall." Definitely keeping me busy.

Luke is at the wonderful stage of smiling and cooing. Kevin and I really enjoy talking to him just to see that big baby open-mouthed grin. Right now he's smiling at his toy bar on his bouncy seat.

Kevin and I are just keeping on top of things. Today Kevin took the kids to a playground for awhile so I could get some packing done without them undoing it. The house was so quiet, though, I would've probably taken a nap instead of Luke hadn't been home and awake! Hey, who could blame me?!

Thanks for checking in on our family, two more weeks of school, then my hair will be completely gray and my voice will be gone from yelling "QUIT FIGHTING". I did lose my control yesterday. Before anyone calls social services let me explain. Kyle was teasing Zach, making him cry, so I just yelled back to his room "Kyle, quit aggravating him." So a minute later I hear Haley yell "Kyle, stop pulling on me!" So I yelled back there again "Kyle Austin, what did I just say to you?" and he says "What, you said stop aggraving HIM, not HER!" So I told him to come in the living room where I was planning on discussing his sarcasm. He walked into the room with this huge grin on his face and I broke down laughing. Usually I can hide it until I'm done with the lecture, but I just couldn't do it this time, that kid is going to be able to get away with anything with me.

I'll try to keep up with the updates. Vickie

Tuesday, May 4, 2004 7:18 AM CDT

I didn't realize how long it had been since my last update! I don't have that much time anymore, Luke likes to be held most of the time so I'll probably be slow with my updates until he can hold his head up! Right now he's snoring in my lap!

Jordan is doing great. He has a rash still, but that's okay, we just go through ALOT of hydrocortisone and protopic. His appetite is definitely back, he wants to eat almost constantly. An example: He had three Eggo waffles before speech therapy yesterday. An hour later, in the middle of his half hour session he turns around and says "Mommy, I'm hungry." Right now he's just finished his second bowl of Kix. At this rate it isn't going to take long for him to get back to his old weight, which was high for his age and height. Keep in mind, he is DONE with steroids!! Has been for months! His one year studies are on June 14th, he's almost done with all of his transplant related meds. (Septra, Acyclovir and Cyclosporine). He will still need his Zyrtec and inhaler for reactive airway, but that's allergies. That will be so strange for us not to give him any meds in the morning! Strange in a good way!

As for the rest of us, we have a busy month. Haley's state karate tournament is Saturday, GO HALEY!! And we're moving to a new house this month. It is on the other side of Raleigh, a Raleigh address, but it's really closer to Fuquay I guess. At any rate it's closer to the MEPS so Kevin won't have to drive so far, and it's cheaper and nicer than the one we're in now. It would be nice to know what the Army is going to do with Kevin before is re-up date gets here, but for now we're going to make the move because it would be better for us and if we have to move again next year, oh, well! We were going to put the kids in a new school next year anyway because I have a problem with the one they're in now. I think I also mentioned in my last journal that Kevin had hurt his knee playing with the kids, let me update that and let you all know that he's fine. It's still a little swollen, but it's not broken or anything.

After Jordan's one year studies I probably won't update the site anymore. The only reason I've kept it up this long is that I want our Caringbridge friends to be able to have a success story for transplants. When Jordan was transplanted I had such a hard time finding out about kids who were doing well, not relapsing or having other issues and while I felt I needed to pray for these children, it also made me excessively paranoid that Jordan was going to relapse, no matter what the doctor said and at times I would just break down with the fear that we went through all of this and were still going to lose Jordan. I can see how it just gets boring to write "so and so is doing fine" all the time, but I haven't had alot of contact with other families since Jordan's always in isolation at the clinic so this being my source of information that was helpful for me to hear. My point is that I want other people in that situation to be able to read about a positive outcome. But school gets out soon, and with 5 kids home I just don't think the updates are going to happen. I will post a message letting you know when it is the last update. Until then let me just say that we have really appreciated all of your guestbook entries. Jordan and I miss our friends from GA since we've moved, we're pretty isolated here to keep Jordan healthy, so it's nice to know that so many people are thinking of us. Thank-you. Vickie

Sunday, April 25, 2004 10:17 PM CDT

We had a pretty fun day today, it's not quite his birthday yet, but we celebrated Jordan's birthday today. It's really hard for me to believe he'll be 5 already! The kids had a great time today, we went to a place called "Wheels" fun park, it has a huge tunnel/slide playground and after the kids were done with that Kevin took each of them for a ride on the go-karts. They liked that, but I think Kevin liked it the most! Then it was back home for Batman cake and opening presents. We had a really fun day, but we're all pretty worn out from it all. Oh, and poor Kevin, he was playing with the kids on the playground and he hurt his knee in an inflatable bounce thing, it's the same leg he had surgery on in November and it's swollen pretty bad. It didn't bother him at first, but it's gradually gotten worse this evening, I think he's going to end up at the doctor tomorrow.

We've been a little worried about Lucas, one of his newborn thyroid screenings came back borderline so they had to repeat it. It still came back borderline so it'll have to be checked again at his next appt. If there's a problem and it's not caught early enough it can cause growth problems including the growth of his brain which causes mental retardation so they're pretty aggresive trying to treat it as soon as they can. So far they aren't too concerned because he's definitely growing, he's already up to 10 lbs. Kevin and I have been a little worried, I always panic a little when a doctor calls and I hate that they've had to stick Luke so many times already. Luke is doing fine, though, he's getting himself on a little bit of a schedule and he's getting better about letting me lay him down to sleep (he did want to be held constantly for awhile, that made for some very long nights!).

Okay, now I'm going to brag a little (maybe alot)! Haley competed in a karate tournament on Saturday and she took second place in two out of three events! She'll go on to the state tournament in May. Kyle chose not to compete in the tournament, but after seeing what it was like he'll probably want to when he starts his next session of classes. Then they'll both compete as yellow belts, though, because they've passed their test to move up. I'm really glad that they've found something they like so well.

I've gotten school pics back of Haley and Kyle so I'll try to post those soon, but I'm too tired tonight to try. Maybe tomorrow! Vickie

Tuesday, April 20, 2004 6:47 AM CDT

Jordan had a regular appt. with Dr. Martin yesterday, everything looks pretty good. He has alot of rashes on him right now that we're putting steroid creams on, he said it could either be GVHD or just eczema. Either one isn't a big deal, the GVH would actually be a good thing because most kids that get that don't relapse although at the point Jordan is at now (almost his one year anniversary for his transplant) there isn't much danger of relapse. After his one year mark safety is more of a worry than relapse, seatbelts and that sort of thing. Jordan is really excited, too, he got the okay to swim in a chlorinated pool, no beaches yet, but it's a start! Our visit itself was extremely stressful, Jordan is on contact isolation because last June he tested positive for VRE in his stool if he leaves the exam room for anything he has to wear a gown and he hates it so when it was time for him to be checked in (height, weight, temp, blood pressure) he threw a tantrum, fighting me (physically), screaming, it was awful. I had to pick him up and carry him to the room and he fought the whole time. He screamed for a good half hour after we got back to the exam room. He yelled more for that than he did when they drew his blood. And for anyone who's thinking that he's spoiled, I won't deny it, but Kevin and I never give in to tantrums from any of our kids, not even Jordan, but it doesn't matter with him. There is no response and no punishment in the world that will stop him if it's that important to him and he really did not want to wear that gown so I just had to let him get it out while periodically reminding him that he could not yell at me. Anyway, the clinic visit wasn't fun, but at least he's healthy.

Haley and Kyle are back in school, we didn't do anything really for spring break since it rained for most of it. I know I spent the week mediating fights.

On a side note, there are some caringbridge sites that I can't check anymore right now, for some reason if you have music on your site my computer shuts down the internet. I'm not sure what the problem is, but it's been doing it for a little while so that's why I haven't signed some guestbooks in awhile.

Well, time to get moving, we don't have any appts. today so I'm hoping to get some housework done. Vickie

Sunday, April 11, 2004 5:57 AM CDT

It's 7:00am right now so I'm just waiting for the kids to wake up, I'm surprised they're still in bed! Kyle woke up 15 minutes ago and since I'm such a mean person I'm making him wait until the others wake up before he can dive into his Easter basket. Then of course it's chocolate for breakfast! I wouldn't normally be up this early, but as Kyle says, Luke is nocturnal! He likes to be held all night.

Everyone here is doing fine, the kids are adapting really well to having Luke here. Jordan is just glad to have me back home and not "fat" anymore so I can rough house with him again. He's been doing pretty good, he goes back to the clinic probably in a couple of weeks. I had to take him in on Thursday, too, because he had a fever. He's been having diarrhea and cold symptoms. They decided he has a virus, probably nothing serious as long as he stays hydrated, and he has allergies that are irritating his reactive airway disease. He's had that since he was a baby, the way it was explained to me, it's a precurser to asthma. They gave him an inhaler and he's started taking Zyrtec, obviously that was the problem because they gave him a breathing treatment in the clinic to start him off and I could see a difference almost immediately. He doesn't have "a million coughs" like he told me he did before.

Well, I couldn't torture Haley and Kyle any longer, I let them dig into their baskets! Now I need to go keep them from hunting eggs without Jordan and Zach. I'll try to post some new pictures later today. Happy Easter! Vickie

Wednesday, April 7, 2004 4:42 PM CDT

IT'S A BOY!!! Lucas Trent Moyer was born on Monday April 5th at 10:02 pm. He weighs 9 lbs 4 ozs and is 21 3/4 inches long. Lucas and I are both doing fine, we came home last night and both of us are catching up on our sleep.

Pictures of Lucas are in the photo album! Thank-you everyone who visited, helped with Haley, Kyle, Jordan and Zach (Grandma!!) and everyone who gave us gifts, we really appreciate it.

Kevin, Vickie, Haley, Kyle, Jordan, Zachary, and Lucas

Thursday, April 1, 2004 11:05 AM CST

I thought I would save everyone the trouble of calling, IM'ing and emailing, NO BABY YET! I had an ultrasound yesterday and everything is still fine, if I don't have the baby by Monday they will probably induce me then. And FYI, our only phone is in my bedroom so if you call to find out if I've had the baby the chances of me answering it before the voicemail picks up are slim to none, it just takes too darn long for me to get up and get back there. Spare me the jokes, Kevin and the kids have used them all!! Anyway, if you are on our list of people to call/email I promise we will let you know as soon as the baby comes!! And trust me, you probably don't want to talk to me right now anyway, because I am extremely irritable, and that's putting it mildly. I do check my messages, though, and I do appreciate everyone checking up on us.

About the kids...Haley and Kyle are having a good week. Haley and Kyle have both passed the test for their yellow belt in karate and brought home excellent report cards (as usual) so we're very proud of them for working so hard. Zachary has a newfound HATE of shopping, he now spends the entire time in the store whining "Can we go to the van now?" and gets very upset when we tell him no.

Jordan is another issue altogether! As many of you already know, steroids bring mood swings and food cravings. They are common side effects. When Jordan was on steroids, we had the food cravings, but not mood swings. Jordan was actually very mellow, which is great for us because he's normally strong willed and high strung. Now he's off of steroids. We still have food cravings. I'm guessing that's his age, I don't know, but he had a complete breakdown because we didn't have any leftover chicken nuggets yesterday for him to have for breakfast! By breakdown I mean, crying, yelling, stomping his feet and balling his hands up into little fists and telling me that I'm mean at the top of his lungs. Unfortunately the tantrums are due to his normal, pre-transplant disposition and while we have always admired his strength and will, this is a bit too much! Oh, and it's not just over food, don't even try to pull down his quilt when he has made a "clubhouse" with it in his bed (bottom bunks are great for tent building). Coupled with my pregnant irritability Kevin is ready to volunteer for another year-long tour to Korea!!

As far as his health, Jordan is doing well. We had a little scare Sunday/Monday. He's been fighting off a cold for awhile (we had thought it was allergies) and his temp. went up Sunday night, which he let us know with his vomiting. But by Monday morning he was fine and now even his cold has cleared up, only after being passed on to all of the other kids in our house. As mean as it may sound, it's kind of nice having 4 kids with colds at the same time because it makes them sleepy!! Especially Zachary, who decided about a year ago that he no longer needs afternoon naps. And I don't even drug them, I prefer using more "home treatments", pushing fluids, using the vaporizer and vapor baths and stuff. As long as they're comfortable with it, that is. So Mommy is getting more naps now, too, which I seem to constantly need!

So, in summary, I am still fat and miserable, in turn making sure everyone else in the house is miserable! We will be sure to let everyone know when I have the baby. Oh, and some good news, I can update the pics more often now because we just got a digital camera which has turned out to be really easy to use and I love it!! Definitely worth the money! Vickie

Tuesday, March 23, 2004 2:12 PM CST

This is just going to be a quick update to let everyone know our latest news. First of all, NO BABY YET! And second, we got the results from Jordan's immune function studies and his engraftment. The engraftment one scared me, it said he had greater than 98onor cells instead of greater than 99o I got worried that he was losing his engraftment and called Dr. Martin. I was worried over nothing, they changed the tests and all of the test results come back greater than 98ow instead of 99f there are no old cells detected, so Jordan is still fine. Also, I had to get clarification on his immune function studies because I have no idea how to read those and he said that if Jordan wasn't on Cyclosporine (an immunosuppressant to keep his donor cells from attacking his body) his immune system would be functioning 100ormal. Dr. Martin thinks there was a lab error with his last studies because they should have been better than they were, but anyway Jordan can now go into not very crowded public places without his mask (he still needs a mask in crowds), anywhere outdoors but no digging in the dirt or hay. He also said that it's okay that Jordan is still having some GVH rashes flare up because that's his donor immune system working and that means if there's any residual leukemia it will hopefully attack it before it hurts Jordan.

Well, that wasn't very short, sorry! But we're thrilled with the results, Jordan couldn't be doing better! So, I'm going to do my little happy dance now (as best I can with my pregnant waddle). Vickie

Wednesday, March 17, 2004 7:03 AM CST

Hello, everyone! Happy St. Patrick's Day! I honestly didn't even realize it was until Kyle told me this morning he was glad he was wearing green, I had picked him out a green shirt by coincidence.

No baby yet! I had a doctor's appt. yesterday. Everything looks healthy, but my doctor informed me that this was not going to be another 7 lb baby like Haley, Kyle and Zachary were, probably closer to the 9lbs that Jordan was. She hadn't realized it before because she said "Well, 151 lbs at 39 weeks is a good weight" and I questioned that so she checked what I was before the baby and said "Wow, you've gained alot" so she charted it on a growth chart and measured my belly and said this baby is not under 8 lbs. This is really discouraging news because Jordan's delivery was complicated and he had alot of health problems. Of course Jordan was also 2 weeks late and we discussed that, too, and she's not going to let me go that long.

Jordan continues to feel really good, his appetite seems to be getting better all the time. We haven't gotten the results from his immune function study yet. He feels good and has tons of energy, most of which is used to argue with Kevin and I and fight with Zachary. He has no patience at all with Zach so I have to separate them constantly. I'm not sure how he's going to do with kindergarten next year, he has a very limited attention span in his speech class and that's only a half hour. I'm hoping that's only because of his age, but I don't really think so.

Haley and Kyle are getting ready for a karate tournament in April, that should be fun. We found out that they were both accepted into a magnet school for next year, I'm really happy about that, the school they're in now just isn't helping either one of them. I don't think Haley has learned anything this year except a little science, I don't see her progressing anywhere else. She's doing work she did in the end of kindergarten/first grade and when she finishes her work right away her teacher tells her "okay, just doodle while everyone else is working," how does that help her?! I've had conferences with her teacher, sent in notes, put notes on her report cards, I'm just not getting anywhere. We decided that there was no way they were going to that school next year.

Thanks for checking in on us, hopefully my next update will be a baby announcement!! Cross your fingers! Vickie

Tuesday, March 9, 2004 7:29 AM CST

Hi, everyone! I hadn't realized how long it's been since I updated, but there isn't a whole lot going on here. We're still waiting for the results of Jordan's immune function study to find out how his immune system is working, although I'd have to say it's doing its job since Kyle has had a cold for over a week and Jordan hasn't caught it. Jordan's feeling good, I think his weight has finally evened out, he's starting to eat a little more, actually says he's hungry, music to my ears! He prefers to eat pretzels and chocolate milk (that I'm still spiking with pediasure) and I'm used to associating these cravings with steroids, but I keep forgetting that he's 4! When Kyle was 4 he ate nothing but tuna sandwiches for lunch every day. We have started insisting that Jordan sit down at the table with the rest of the family, he always says he's not hungry, but if he sits there he always eats something so my line always is "it's okay if you're not hungry, but this is family time, everyone sits at the table for dinner even if you don't want to eat." To which he always responds "Oh, man..." in his patented four-year old whine.

I'm feeling very miserable, I'm normally very active and it really drives me crazy to have to rest so much. Two more weeks until my due date, let's pray that this baby isn't overdue!! Kevin's Mom and Aunt Karen had a very nice baby shower for me last weekend, I was really surprised and Kevin was very proud of himself for not telling me! It was alot of fun.

The swingset is finally put together, minus one slide, so the kids can play on it. Zach goes up the ladder, down the slide that is on there so many times I get dizzy! The poor kid is all scraped up, too, from falling so many times, but he just gets up, asks for a kiss, then he goes back to what he's doing. He's a tough little thing.

If you haven't noticed, there is some info. above the journal entry about the Rainbow of Heroes walk in May. We're looking forward to participating and would appreciate your support.

So that about sums up our week here, we're waiting for the baby, waiting for the immune function test, waiting for spring...and not waiting very patiently. Vickie

Monday, March 1, 2004 12:04 AM CST

Thank-you everyone who has left messages in the guestbook, we enjoy reading them. There isn't alot to write about today, but that's a good thing! Jordan had speech therapy this morning and he did pretty well, but he gets distracted easily. I can't tell if there's an improvement since I'm with him all the time, but his PNP and his teacher both say they can understand him a little better. He's been working on words that end in "t" and "p" because he tends to leave the endings off of words and we practice at home, too, so now Zachary enunciates his t's at the end of words, too.

It actually got up in the 60's on Sunday so Kevin made alot of progress on the swingset, Jordan loves to help him. He really is a help, he is very interested in how things are made, how they work, so he likes handing Kevin tools and pieces. Of course he had to try out the rope ladder, too, to make sure Kevin put it on there right! Once it's done I think those ladders are going to be great therapy for Jordan's leg muscles. Kevin asked me to help him with something once and Jordan informed me that I was too big to try out the rope ladder, such a sweet talker!! He kept trying to cover me up with an afghan the other day and I told him I really was too warm and didn't need it and he said "But Mommy, your baby is cold so we need to cover up your belly." How do you argue with that?

Hopefully I'll find some new pictures to put up here pretty soon, I'm having trouble finding pictures of Jordan without his tongue sticking out!! Jordan and Kyle can't resist making faces at the camera so I have to be sneaky to get normal pictures! They get Zach to do it sometimes, but luckily it hasn't stuck with them, which is strange because usually Zach will do whatever Kyle says or does, he really looks up to him.
Vickie

Wednesday, February 25, 2004 8:01 AM CST

***UPDATE*** I talked to Jordan's PNP this afternoon and Jordan's echo from Monday came back completely normal (he's had slightly decreased functions in the past) and the slight drop in hemoglobin isn't a big deal because he trends right around that number and it's nowhere near where they'd need to transfuse. All good news, YAY!!!


I've been giving alot of thought to something and I decided I would put it in our journal so I could get some opinions on this from some people who've been there. When Jordan was first diagnosed he was only 22 months old so Make a Wish wasn't a consideration for him, then he was 3 when he went into remission and we thought he wasn't sick anymore and wanted to move on, then when he relapsed he was too neutropenic and we were too focused on his transplant and keeping Kevin home from Korea to think about it so what I'm trying to say is I'm wondering if we should consider it now.

Kevin and I have alot of conflicting thoughts on it. First of all, we've always been reluctant to label Jordan has "terminally" or "critically" ill because that seems like we're giving up on him and because he's always been so strong and healthy through all of this. Second, also because his health has done so well, I feel like we're taking away from someone who really deserves a wish, I mean, they only have so much funding, it seems dishonest to me.

On the other hand, the kid has been through hell, strong or not, a child should not have to spend all that time in the hospital, get all of those needle sticks, toxic drugs, and isolation which was probably the worst for him. Now for the most part Kevin and I have been able to provide (within reason) what the kids want/need. We don't have alot of money, but we always seem to manage, but what if there's something else Jordan wants that we can't do for him, or that he would have to wait for and he did take a turn for the worse? Then I would regret not being able to do that for him.

I did ask Jordan what he would want or where he would want to go if he could go anywhere, I told him it was a game, and I honestly thought it would have something to do with Batman or superheroes, but what he said was "anywhere without my mask". Then I said "okay, what if you could go anywhere without your mask, then where?" His first answer was "Chuck E. Cheese", how sad is that? (of course he'll be able to go there again before too long since he's so far post transplant). Then his next answer was the one I expected, "the batcave." I tried to explain to him that it had to be kept a secret so the bad guys wouldn't hurt Batman, but he said that's okay, he knows where it is! Obviously what he would wish for still needs some thought, but that's beside the point.

So what I'm very long-windedly trying to decide is whether or not we should pursue this. I would appreciate any feedback from anyone who's been through this or even anyone who has an opinion, I'm just not sure what the right thing to do here is, the only thing I am sure of is that I'm glad he's doing well enough for me to have to think about it! Vickie

Monday, February 23, 2004 3:06 PM CST

Jordan had his nine month studies today, he's off of steroids!! Hopefully that doesn't wipe him out too much, we'll have to keep an eye on him. His counts looked good, the ones we got back and Dr. Martin agreed that Jordan could start seeing a family practice doctor once everything was coordinated between them. I was a little concerned because his hemoglobin has dropped some (below normal range), but I'll talk to his PNP about that tomorrow when I call to find out the results of his echo. I usually take care of the kids' physical needs, what they eat and meds and all that, but Kevin had to take Jordan today so I made him a cheat sheet so he would know what to tell them so when his PNP, Ann, asked if he had a meds list Kevin just handed her his paper, then when she asked if we had any concerns he took it back, flipped it over, and handed it back to her! At least we were prepared! They didn't set up another time to see Jordan, I'm supposed to call after I have the baby so we can arrange it.

My doctor's appt. went fine, she decided I didn't need an ultrasound after all, when she measured my belly it measured fine. Everything looked good. I'm still having problems with being really tired, but I guess once I get my hemocrit back up I'll feel better.

Everyone else here is doing fine...We're expecting snow again this Thursday, then back up in the 60's by Sunday, it's insane! Vickie

Saturday, February 21, 2004 3:22 PM CST

The weather here is so strange, Monday and Tuesday it snowed, Wednesday it melted, and then the rest of the week it's been in the upper 60's so the kids have been able to play outside, but they come in covered in mud.

On Monday Jordan has his nine-month studies, YAY! This time Kevin is taking him, I have a doctor's appt. scheduled for me at the same time. That'll really be an experience for Kevin since he'll have Jordan and Zach! I'm sure Jordan will tell me all about it, he hates it when Kevin doesn't do things exactly the same way I do. Anyway, we're hoping all of his tests come back normal as they have been, I'll post whatever we find out.

My doctor will be scheduling me for an ultrasound this week, there was some concern because my belly isn't measuring as big as it should be for how far along I am so they want to make sure the baby is big enough. I have to start taking iron now, I'm anemic, and Jordan really likes that, he wants me to take my vitamins with him when he takes his. I wonder when they'll start making gummi prenatal vitamins...
Vickie

Tuesday, February 17, 2004 8:41 AM CST

Another snow day!! The kids were out of school again yesterday and if it gets worse today they may be out early. They were out playing in it yesterday. Kyle likes to play in the snow, but I think it's starting to get old, he'd rather stay in anymore. We had a boys day with Mommy this weekend, I took the boys out to eat and out for ice cream. It was a little stressful with Zachary, but we managed. Kevin got a little start on the swingset before it snowed, but it's going to take him awhile with the weather being so uncooperative.

Last Friday I thought for sure we were going to have to take Jordan to the doctor, he woke up with a low grade fever and it was going up so I called and they said to bring him in so they could do a viral respiratory battery (that needs done before 2pm), but when the nurse mentioned to his doctor that he was coming in he said as long as Jordan was drinking and playing he didn't think he needed to come in. Of course when I told Jordan that he jumped up off the couch and said "I think my fevers gone mommy, I feel fine." And it did end up going away on his own, he was never even miserable enough to need Motrin. By Saturday even his cold was gone. Next Monday he goes in for his nine month studies and we're going to as Dr. Martin about seeing a family doctor now, I'm sure he'll say it's fine and it'll make insurance issues so much easier to deal with, not to mention we won't have the 2-3 hour long waits. The insurance would be easier to deal with if we lived near a base, we've had to pay alot more out of pocket than we should have just because I don't have time to sit on the phone with them.

There isn't too much longer before the baby's due now. Zach keeps telling me that I have a fat belly and he has a little belly. I have to say I'll be glad when this pregnancy is over, I'm tired of being tired! About 5 more weeks to go.

Vickie

Wednesday, February 11, 2004 10:10 AM CST

I've decided to stop posting the days post-transplant, it's getting too hard for me to keep track of! So, for the sake of my sanity, Jordan's about nine months out. Jordan's belly is better for now, I talked to his PNP about the throwing up once a week and she said she didn't really know what it could be, but he didn't have any warning signs to be concerned with. Of course now he has a cold so I have to watch him for fevers or any respiratory problems. He still isn't eating that much, but Kevin and I just remembered that the last time he stopped eating and would just drink chocolate milk, when he was getting chemo, we would mix 4 oz. of chocolate Pediasure with his chocolate milk so we're going to start that again. I can't believe we didn't think of it sooner. He seems to be losing weight pretty fast right now. Oh, he also has a new game, after every couple of bites he eats he comes and asks me to measure him, his goal is to grow taller than Kyle and we told him that he has to eat to grow.

We had a pretty fun weekend. Saturday the kids spent the day with their Grandma and Aunt Karen so Kevin and I could see a movie and go out to eat. Ambitious, aren't they?! The kids all had a good time and Jordan doesn't cry when I leave him with them which is quite an accomplishment since he cries when I leave him with Kevin! He seems to understand that I need time alone with Kevin, though. On Sunday I took Haley shopping, we had a girls' day out. That was fun. She got her ears pierced, she didn't even cry, but afterwards her original plan had been to shop for earrings and instead she wanted to get out of the store because she was nauseous! She ended up being okay, we went out and got some air and came back in for ice cream and a carousel ride, and of course shopping!

Oh, Haley and Kyle started self-defense/Karate last week finally, I don't know if I mentioned that in my last journal. They both loved it and they're trying really hard.

Kevin has a new project to work on, we got the kids a wooden swingset (they're a good deal this time of year) and now he gets to put it together and darn, those wooden parts are just too heavy for me to help lift (as long as Kevin gets around to putting it together before I have the baby...). So, if anyone needs him, Kevin will be in the backyard, but cover your ears before you head out there!
Vickie

Friday, February 6, 2004 8:58 AM CST

Day 256--At some point I would like my biggest worry when Jordan is sick to be dehydration. Instead, while he was throwing up all night I was wondering why with about ten bad possible causes running through my head. Of course it doesn't help that he was sick every half hour so I didn't sleep all night either. This morning is a completely different story, I'm sure now that he does this just to make sure I'm paying attention. I let him sleep in until 9:30 in my room so when he finally got up I got yelled at for letting him sleep in, he was afraid he missed Dora. Since then he has been aggravating Zachary and bargaining with me to give him chocolate milk instead of gatorade.."Mommy, I took 3 drinks of my blue gatorade and it didn't hurt my belly, can I have some chocolate milk now or do I just have to take one more drink?" No, I'm not cold-hearted, I gave him the chocolate milk figuring at least he's drinking something (and he did already have 8 ounces of gatorade). All of this happened after I finished telling Kevin "I can't believe how much Jordan ate today, he just kept asking for food, he's really got his appetite back."

On a positive note, Jordan started speech therapy yesterday, YAY! He'll go for a half hour every Monday and Thursday and he gets to go to the school for it (he's in a room by himself). He did really well yesterday. I had a meeting on Monday and they decided that he's also going to see a physical therapist once a week. He doesn't need alot of physical therapy so we're going to just do enough to make sure he's up to speed if he starts kindergarten next year. When they evaluated his speech she said his intelligibility is under that of a two year old, but the preschool teacher said that all of his other skills are where they should be for a four year old or higher so they didn't recommend anything for that. The speech therapist thinks that because Jordan is so intelligent and his language skills are so far advanced that he shouldn't have any problem getting his speech where it should be. I'm really glad we're taking care of this now instead of waiting until he starts school, I think this will help him be ready instead of behind when he does start.

So that's what's going on here. Another long night! This weekend Haley and I are having a girls' day out, going shopping, getting her hair done and her ears pierced if she doesn't chicken out! I left that up to her. Jordan wasn't thrilled to find out that he couldn't go, but Kyle took it pretty well, he hates to shop and I didn't mention to him that we were going to the mall with a carousel. Hopefully Jordan's little body will cooperate with our plans so I won't have to cancel or spend the whole day on the phone with Kevin checking on him (just half of it). Kevin does really well taking care of him, but he just isn't Mommy!

Let's just pray that Jordan's upset stomach was just that he ate too much or something that didn't agree with him. I don't know what's worse, the sickness or the uncertainty of not knowing what's causing it.
Vickie

Tuesday, February 3, 2004 9:24 AM CST

Day 253--Jordan seems to have recovered from whatever was bothering him last week. He's back to his old energy level (which would be too high for me to keep up with!). Thankfully he hasn't had any issues with low platelets hardly at all since his transplant because Zachary is going through a phase where he keeps throwing toys and hitting Jordan with toys. His favorite is Hot Wheels cars and last night he got Jordan on the back of the head with one and it cut him. There looked like alot of blood, but really it was just a little scratch and it only took a minute for it to stop bleeding. I don't know why Zach is so mean, I don't think he realizes it, though, I think he just gets tired. This morning he threw their Little People school bus and hit Jordan in the back with it.

This past Sunday we ended up putting all four kids to bed at 7:30, they were all sooo tired. I think it really helped them, they all have had a pretty easy time getting back into their school routine. Tonight Haley and Kyle start their self-defense class, they're really excited. I read about an organization at www.supersibs.org on another caringbridge website (Kendrie's) that focuses on siblings of kids with cancer so I filled out an application for Haley and Kyle. They really seem to be resenting all of the attention Jordan gets, especially since he always comes home with stickers and McDonald's after his doctor visits (although he does always insist on getting stickers for them, too). I hope that'll help.

We're still looking for ideas for celebrating Jordan's birthday if anyone has any. Kevin and I thought about Carowinds (an amusement park) if Dr. Martin says it's okay and if they're open in April. If not I don't know yet what we'll do. Jordan just says he wants a party, but all he's seen are our big neighborhood birthday parties that all the kids used to have at Ft. Stewart and even if we could do that now we just don't have that many kids around here to do it with.

Time for me to go, we have an appt. with Jordan's EIP team at the school to see what he's eligible for. They've alreay told me they're sure he'll be able to get speech therapy. Vickie

Saturday, January 31, 2004 8:02 PM CST

Day 250--Jordan seems to be feeling much better, just a little tired and not too much appetite. I finally couldn't stand him not eating anymore and asked him what he was hungry for so Kevin could pick it up on his way home from work. He said pretzels so that's what he's been eating. He is gradually getting better, though, he had some chicken nuggets from Wendy's today and ate most of a turkey sandwich for dinner and snacked all day on the pretzels. I shouldn't worry so much because he's nowhere near being underweight, not even average weight for his height yet, but he just looks so thin to me. He's getting really spoiled with us giving him whatever he asks for to eat, but he was really spoiled to begin with so I don't think we're taking any steps back! Anyway, no more vomiting or anything. We did end up taking Haley to the dentist and the tooth fairy brought $2.00 and a teddy bear (for her pain) and she did great for the dentist.

Now that we can get out of our driveway we had to run errands today. We really wore the kids out. I had shamelessly bribed them with a sheet of stickers each if they didn't fight or yell at each other or Kevin and I all day. At the end of the day only Zach and Kyle got the stickers, no big surprise there! They did do good most of the day, though, they almost made it so the errands weren't as stressful as they would've been. I guess the cost of the stickers was worth it. Hopefully they'll sleep good tonight. Last night Zach and Jordan both got in bed with Kevin and I, a really tight fit with my big belly in the way! Zach got in first between Kevin and I, then Jordan got in between me and Zach so Zach got up and we couldn't figure out where he was going, he wouldn't say, he just walked over to my side and climbed in bed next to me! Poor Daddy. Then Zach kept sitting up to look out the window. Between him and Jordan none of us got much sleep. At least it's the weekend.

I guess I'll get off of here now and try to get Zach to sleep. He's in my rocking chair with an extra playstation controller "helping" Kevin play a Harry Potter game. Usually that puts him to sleep, but he just keeps talking tonight. He came in the kitchen earlier jumping up and down saying "j-u-m-p"! Too much energy!!
Vickie

Thursday, January 29, 2004 7:21 AM CST

UPDATE: Jordan tested positive for having the Adenovirus in his nose. Right now since he hasn't been sick (they did the test when he had his last fever) they think his immune system has been able to fight it. If he doesn't improve today he's going to have to go to the clinic so they can find out if it's moved to anywhere in his digestive system. This virus is very difficult to treat so we're going to have to watch Jordan very closely and respond to any symptoms (especially cold symptoms) immediately.




Day 248--It looks like we may end up in the clinic today, but I hope not! Jordan started throwing up last night around 8 (fortunately he hadn't eaten anything since noon). It was strange, he was running around and playing, but when I tried to give him his vitamin he said "Mommy, wait, I feel like I'm going to throw up!" I thought he was faking, he'd been fine and usually doesn't throw up until after his medicine. That lasted for about 2 hours, then he fell asleep and he slept through the night. His temp is holding steady around 99 which isn't too high yet, just high enough to keep me on my toes! He's up playing this morning, just not hungry (not that I can blame him). I hope he gets better as the day goes on, I'm supposed to take Haley to the dentist to get two teeth pulled this afternoon, I'm sure she doesn't want to miss that (poor girl!). There's no school again today so at least I don't have to take her out early for the appt.

If Jordan feels better hopefully we will get out of the house some today, I think I'm getting as stir crazy as the kids! And I'm running out of activities to keep them occupied (it was not a good idea to ground Haley for the entire week from the computer and playstation!). Let's hope there's school tomorrow! I'm starting to find gray hair...

Oh, Thanks to Chris (Gooch's Mom) for her help with Jordan's new Power Rangers border! I couldn't have done it without her (I tried, Kevin didn't know I could cuss like that...). Thank-you! Vickie

Tuesday, January 27, 2004 12:56 AM CST

Correction from last entry: The officer who was so kind to us was Commanding General Sharp at the time, although I think he's been promoted since then.


Day 246--Sorry it's taken me so long to get to "Part 2", but because of the ice my kids (including Kevin) were home today and yesterday and they've already cancelled school for tomorrow, too. I'm just glad it was warm enough for them to go outside today, otherwise I would be pulling my hair out! I don't know yet if Kevin's going to have to work tomorrow, the last he heard he did.

Okay, where I left off in my last journal entry was when Jordan reached remission in August of 2001. I do want to backtrack a little bit because I left out something important...In June Zachary was born! This was also when we got our first glimpse of who was and wasn't going to be there for us. When I went into labor I was at home (it was a Saturday) and Kevin was at the hospital with Jordan. Fortunately Kevin's Mom was visiting for the weekend. It was around midnight of course and I called a relative who lived close by who's husband was also in the Army (I won't say who, you'll see why). We had planned for me to call her if this happened for her to go to the hospital with me because I also had a big cord blood collection kit to carry in (we were going to bank the blood for Jordan's transplant). Well, after I called her about 50 times leaving urgent messages I finally gave up and drove myself to the hospital. Not too big of a deal since it was the middle of the night and it was only a few minutes away. Once I got there I had a hell of a time carrying the box in, but I managed to get it up there and everything else went okay. The doctors delivering Zach had been told how important the cord blood was so they made sure there were two doctors in there (although the delivery was normal) and extra nurses to pack it up for shipping since there wasn't a coach with me. They did wonderful and made sure they followed the directions with the kit to a T. The person who was supposed to come with me finally called around 7am (he was born around 6) and kept telling me they would come visit me at the hospital. They never did and I had a pretty rough day because I was there by myself, desperately needed/wanted a shower, but was told that they could not take Zach to the nursery because he was healthy so I kept waiting for someone to show up to watch him and finally gave up and showered with the door open (I wasn't in a private room). Then I couldn't get them to take my iv out so I ended up pulling it out myself (I'll never do that again!). So what I learned from all of this was that this relative was not someone that I could count on although I had helped her out on numerous occassions, that stopped. I forgot to mention that when Kevin's Mom had to leave to go back home because she had to work this person's husband called me at the hospital about every 15 minutes to find out when I was picking up Haley and Kyle from their house so I had to leave the hospital when I was discharged, stop at the gas station, then go to their house to pick them up (it was only a few blocks from my house, he could've just as easily brought them to me). When I mentioned how unhelpful they'd been they just said that they didn't think I would need anything (despite me asking?!) since it was my fourth baby.

Okay, that's enough on that, we just considered it a lesson learned! Anyway, Jordan went into remission and we decided not to do a transplant then. Jordan stayed in remission for 15 months. Of course his hair grew back, long, blonde, and curly (I could barely bring myself to cut it), we took a family vacation to Disneyworld on a spur of the moment four day weekend, went to the beach, and thought it was safe for Kevin to leave again so first he went to PLDC for 30 days and was promoted. Then he got orders for a one-year tour in Korea. We weren't happy, but figured we'd be allright, just get it over with. The kids and I got into a routine, back to their activities and I kept busy with my yard, the kids' activities and school stuff. In November, 5 months into his year in Korea, we bought Kevin a plane ticket so he could come home for 1 month's leave. I think about a week before he was supposed to fly home Jordan started complaining that his feet hurt. He would wake up in the middle of the night with cramps, crying and asking me to rub his feet. That went on for awhile, then he would cry every time he walked and he stopped eating. One morning I got up and thought that I would make him a big breakfast, some of his favorites, so he would hopefully eat. He did, but he got sick afterward so I finally called his oncologist. At the time he was on monthly visits and we were about a week away from his current appt. He told me to go ahead and bring him in so I did and they checked his counts and sent him home. When I called later they said everything looked normal, but he wanted me to bring him back in because something was obviously wrong. I brought him back in and they did a bone marrow aspirate. His doctor came back in the room while Jordan was still recovering and told me he had relapsed.

Again, I'm not going to get into my feelings at this moment because I think any parent can understand how devestating this can be. The doctor wanted to admit him right then and there, but I told him that we had to go home, I had to make arrangements for my other kids so we left with an iv in Jordan's arm still (Jordan's a hard stick so when he gets an iv they like to leave it in if there's any chance he's going to need it again). He looked awful, he had dark circles under his eyes and he didn't feel good at all. I was a little encouraged that evening when he was up playing with Haley and Kyle without crying while I was packing and making phone calls, mostly to the Red Cross to get Kevin home. A wonderful neighbor and friend, Jennifer, understood how out of it I was and took the kids. She told me not worry about packing anything, just leave her my house key and she would take care of them (on top of her own two kids). It took so much stress off of me. My kids didn't miss any school during this and she didn't even know how long it would be before Kevin was home. At the same time, my brother got ready to come down from Ohio again to take Haley and Kyle back with him for a few days over Thanksgiving so Kevin and I could get everything sorted out. Kevin ended up home in about 2 days, he beat my brother there. Jordan was getting chemo when he got there and as soon as he started he felt 100etter. The leukemia was in his joints so that's why he was in so much pain and as soon as the chemo started attacking it he was fine. We did the usual with him, chemo, then wait for the counts to recover, then do it again. Things were as easy as they could have been for a child fighting cancer with toxic drugs. His only side effects were a couple of minor rashes and of course his hair all fell out again.

We had alot more difficulties with the Army this time, and with neighbors, people we thought were our friends. The Army was being very difficult about granting Kevin's compassionate. It wasn't that they were refusing it, they just wouldn't give us an answer. While we were waiting they ended up listing Kevin as AWOL which is not good! And it didn't help that it was the holidays so everyone he needed to talk to was on leave. He finally had to call a Sgt. Major of the compassionate branch (someone who was obviously in the wrong job). Kevin explained to him why he called him (because that was way out of the chain of command) and why he needed an answer, told him what was going on. The lovely Sgt. Major's response was "Why should I care?" That's a direct quote. That's when I wrote a letter to my congressman outlining everything. I'll shorten everything that happened in between and just say that the letter eventually made it's way down to Kevin's 1st. Sgt. who needed to know if it was taken care of. At the time we thought it was, but when Kevin tried to get documentation he found out there was a computer error and it really wasn't taken care of. To keep from having to give that answer to the congressman they took care of it. It was finally approved in April (we started this in November). Then there were still people who would say "Oh, you're home from the hospital for the weekend, good, will you babysit?!" Because of course I don't work (HA HA!). Anyway, I got very good and very blunt about saying no, and stepped on alot of toes.

This is where I started my journal. Jordan reached remission again in March, no problems except for a few minor infections (usually line infections). We finally ended up at Duke in May for the work-up to transplant which is just a bunch of tests to make sure he didn't have any residual affects from chemo (he didn't), then he did total body radiation which went fine. He laid on a stretcher for about 15 minutes at a time without moving (I refused to have him sedated) and watched a Rescue Heroes video for a week which wiped out most of his bone marrow so at the end of the week he was admitted to the Pediatric Bone Marrow Transplant Unit at Duke. He got his transplant, engrafted earlier than expected, and recovered with very few side effects. That pretty much brings us to now. He's home, doing well, although still immunosuppressed, but where he's expected to be considering the meds he's on. He has lost quite a bit of weight and is almost down to a normal weight as opposed to overweight. Through everything he still played, he stopped wearing his cape for a little while in the hospital, but soon started asking for it again so he could run up and down the hall (with me chasing him with his iv pole) fighting bad guys. He has a very active imagination and can bring it out in almost any situation. If he goes to the clinic and I forget to bring toys he will make up his own scenario using whatever's in the room. I almost cried the first time I had to punish Jordan after he had come home from Duke. He got in trouble for writing on the furniture with a crayon. Yes, he knows better, but he's four! Anyway, I was sooo happy to see him acting like himself. He has so much energy now and has his attitude back which I shouldn't be happy about, but I am. He's pretty excited about the new baby coming in March, he likes to suggest names for him (the most recent one being Jordan). We're pretty isolated here in North Carolina, I miss my friends and my old neighborhood and so do the kids, but it was worth it to see Jordan so healthy.

I'm not sure what will come next for our family. Kevin and I have some decisions to make about his military enlistment, there are a couple of things we're taking into consideration. It's really superstitious I know, but I'm leery of Kevin being deployed again since each time he's left Jordan has gotten sick. But I don't know what he'd do instead. He is considering leaving the Army and enlisting in the Air Force (his job is something they need in both). We'll see.

I think that'll be the end of my long entries for awhile! As far as I can tell that pretty much sums up our fight these past 3 years. Jordan is a very strong boy. Haley and Kyle have also been very strong through this, each of them having their own issues. Right now we're dealing with some resentment, they don't like how close Jordan and I are because of all of the time we spend together and Jordan is very affectionate and aggressive at the same time so he makes sure he gets alot of attention, but we do make an effort to give Haley and Kyle alot of attention too and they have gotten very close to each other.

We've come a long way, it's hard for me to believe it's been three years, I hope and pray that we never go through any of this again, but I know that the worry will always be there. Vickie

Friday, January 23, 2004 9:22 AM CST

Day 242-- Next month, Feb. 29th to be exact, makes three years since Jordan was first diagnosed with AML. Because of this, I've been doing alot of thinking about people that have come in and out of our lives, some that have helped us, some that have turned their backs on us. Things that have happened, that have changed our family. I figured I would do some reflecting on that in our journal because we haven't had this site that long, we just started it when Jordan went to transplant. I have to warn you, this is going to be a really long entry because alot has happened and I've been thinking on it alot.

I guess I'll start with a little history. Jordan was 22 months old when he was diagnosed. Kevin had been in Bosnia for 5 months, which made me about 5 1/2 months pregnant with Zach. While Kevin was gone I made numerous trips to the ER with Jordan, he kept getting colds, then ear infections, and then he couldn't breathe so they would take him in and do x-rays and give him breathing treatments. He had Reactive Airway Disease which would probably turn into Asthma when he got older (we haven't seen any evidence of this since he relapsed, just allergies). After 5 months, Kevin took 2 weeks R and R to come home, although he was due to come home the next month it just seemed to be the right time for us. It turned out it was. He'd been home a couple of days when I took Jordan back to the doctor for a follow-up for an ear infection and pinkeye. They gave him an iv antibiotic because the other ones weren't working, it just kept coming back. They sent him home with the instructions to call the doctor if he got worse. He got worse. A lymph node swelled up in his neck and he cried constantly, refusing to let me put him down. I tried calling the doctor, gave up and took him to the ER. While they were examining him we mentioned that he seemed to have alot of bruises so they did a CBC. After being in the ER for hours, as soon as they got the results of that blood test they rushed us to a room, started an iv and said Jordan was going to be taken by ambulance to Savannah, he probably had leukemia and they couldn't treat him at Winn (the Army hospital). It seems like once he was at Memorial Health he was there forever, but I think it was a month and a half. He had transfusions and started chemo. They put him in PICU to start out with, but he was only there a week before they decided he was stable enough for a room. He was really depressed for a long time, he wouldn't play at all, he would just let me hold him and sing and read. Then an iv in his ankle infiltrated and he couldn't walk for over a month. The nurses didn't do anything for it, just watched it, so I finally looked up some info on it in my sister's nursing books and read that I could massage it with lotion so with every diaper change I would do a little more until it gradually improved. Then Daddy got the brilliant idea to borrow a ride-on train from the playroom so Jordan could use his ankle as much as was comfortable and we saw him really improve. He started walking and playing again. When his counts improved between phases of chemo they finally let him come home for awhile.

Now this is where we started seeing some real angels in our community. First, Kevin got to stay home from Bosnia. The Major General (I hope that was his rank, it's been awhile) over him in Bosnia immediately approved his request to stay home, and when Kevin ran into him while running an errand on post one day he remembered his name and asked how Jordan was doing and told the people in the office Kevin was in to make sure they did what they could to help him. Then there's the daycare. Wow. Haley's pre-k teacher, Ms. Peggy, watched Haley very closely and when she noticed her withdrawing from her classmates did what she could to draw her out. Then the daycare enrolled Kyle for free (and later Zachary). One night when Kevin was late getting off of work, a person who worked in the office (Dawn) took the kids home with her, fed them dinner, and offered to do so on a regular basis because Kevin was so exhausted. Kevin's unit moved him to another shop where he would not have to go to the field and put off his promotion school (PLDC) until we gave the okay that he could be away for a month (which wasn't until Jordan was in remission). My brother flew down from Ohio to spend time with Haley and Kyle since Kevin and I couldn't give them alot of attention and even made an effort to get me out of the house a little to unwind.

Now that's not to say that there weren't quite a few people who made things much more difficult for us, but most of those people surfaced when Jordan relapsed, not the first time. So Kevin and I made it through by me staying at the hospital during the week and him taking the weekend shift. Most of the nurses in the hospital were great, Ms. Kristie and Ms. Blenda being a couple of memorable ones, but there were more. Ms. Heidi and Ms. Betty in the playroom were wonderful, even closing the playroom to other patients for an hour occassionally when Jordan was neutropenic so he could come play. Some of the nurses had problems with us because Jordan insisted that Kevin and I take his temps. (specifically me) and change his diapers. Jordan is very strong and when he said "Mommy do it" he meant it. I was often woke up by him screaming that at the top of his lungs because a nurse wouldn't listen to me at the beginning of the shift when I would explain this to them. He would kick and scream. There was one incident where they took him to PICU to get an experimental chemo. so they could monitor him more closely (Interleuken II) and they said I couldn't stay the night. Then they tried to change his diaper. They called me and said they needed me. I was standing outside the doors waiting for them to enter the code to let me in and could hear him screaming. They got me a cot.

After about 6 months Jordan reached remission and although his doctor felt we should go ahead with a stem cell transplant, we decided to wait because the risks were so high and he had responded so well to chemo. Dr. Al routinely said Jordan was writing his own book. Few infections, no vomiting, no major side effects. So Jordan stayed in remission for 15 months and we dared to get our hopes up that the leukemia was gone for good.

I'm going to stop here because this is getting to be really, really long! Sorry! I'm going to end by saying that none of his experiences have changed his strength, both physical and of will. We really have to pick our battles with Jordan because when he doesn't get his way it really is a battle. Jordan has also gotten very close to me, mostly due to Kevin's deployments, and has decided that he loves me more than Kevin does and he's going to marry me when he grows up and I will be Batgirl (since he's going to be Batman). He has it all planned out! I've kept out most of Kevin and I's feelings throughout all of this because I think it would be obvious. I will say that Kevin's optimism has always balanced out my panic and worry. Without him I'm really not sure I could have coped at all without having a complete breakdown. We just did what we had to. Our attitude was "okay, you told us what's wrong, now what do we do to fix it?"

Oops, I said I would stop. That's all for now. Vickie

Tuesday, January 20, 2004 9:07 AM CST

Day 239--Whatever it was that gave Jordan the rash and fever is gone. He's back to being himself. I'm hoping to change out the pictures this week, but first I have to get Kevin to plug the scanner back in, I try not to mess with the cords unless I have to, of course I was the one that UNplugged it in the first place, but we won't get into that! I'm hoping to actually find some pictures without my boys' tongues sticking out, but the chances of that are pretty slim. Kyle even has Zach doing it.

I'm going tonight to sign Haley and Kyle up for a self-defense class. I'm not really sure why, my kids have never had a problem defending themselves, but I figure it'll be good exercise and it'll get them out of the house more. They seem to get along better when they do things together, too, I guess it gives them something to talk about, although lately they've gotten kind of competitive.

Jordan is already talking about what he wants for his birthday...at the end of April! I'm not sure what we're going to do for it yet, he only has a couple of friends here and they're alot older than he is, but he isn't ready to go out in public yet either, like Chuck E. Cheese would be out. Maybe if it's warm Dr. Martin would okay the beach or something. Does anyone have any suggestions? He's turning 5.

I need to go check on Zach, he's still asleep and that's not like him at all, we're usually all up by 8:00 and it's almost 10:30 now. I hope he's not coming down with anything. Thanks for checking in, sign the guestbook! Vickie

Saturday, January 17, 2004 8:06 PM CST

Day 236--I'm not sure if anyone's been checking in on Jordan's site or not since no one's signed his guestbook in awhile, but just in case I thought I'd better update. Jordan's culture for a bacterial infection and flu test both came back negative. As a matter of fact, when Kevin took him to the doctor Friday they didn't even run an iv. They decided he didn't need antibiotics as there's no sign of infection and his fluids are fine. Dr. Martin also does not think this is graft vs. host disease because he says the rash doesn't look like a gvh rash, he thinks that Jordan has Fifth's disease. This is not anything of concern really, although it is highly contagious, that's about it. It's just a rash. The only thing that concerns me about this diagnosis is that when I researched it they said fever was very rare and Jordan had one. I'm not too worried about it, though, because Jordan is doing fine again. His eating habits are still a little sporadic, but there haven't been anymore fevers and his rash is almost gone. The plan for now is just to keep a very close eye on him and call Dr. Martin to check in on Sunday, otherwise we're just going to take him back to the clinic on Feb. 23rd as we originally planned. Vickie

Friday, January 16, 2004 11:17 AM CST

Day 235--Well, we didn't get to wait until Feb.23rd to go back to the clinic. Yesterday Jordan started out fine, then progressively got worse. He developed a fever and a rash that started on Monday and by yesterday when his fever started going up it was so sensitive that he cried when I lifted up his shirt to take his temp. Kevin described him as acting like he had a sunburn all over his body. Kevin had to take him to the clinic because I have a cold again and they did a flu test to rule that out and the preliminary result came back negative (we didn't think he had the flu anyway). They also did a blood culture that'll take a couple days to come back and started antibiotics just in case. His cyclosporine level (Immunosuppresant) was very low and Dr. Martin had lowered his dose further and cut his steroid down to every other day so it is very likely that this is a Graft vs. Host flare-up, where the donor cells attack his body, because they aren't suppressed enough.

After giving him the iv antibiotics last night and extra fluids (he was a little dehydrated) they sent him home. Kevin took him back in today for more antibiotics. By the time they got home last night (around 10 pm) Jordan's temp was already going down from the Motrin they gave him (yes, he can have Motrin now that he has platelets! No more gagging up Tylenol!) and it never went back up. I gave him an extra dose of steroids last night and when he woke up this morning his rash was already clearing up and he was acting normal. It was a big difference. Hopefully this is the last we'll see of that, too!

Haley and Kyle's report cards were great as expected. We were very surprised to find out that the normal kindergarden reading text level for this time of year is between a 2 and 4, Kyle's reading text level is 16. That's a beginning of the year second grade level. I even sent a note to his teacher to make sure that was right! We knew he was ahead because he reads well, but Haley is in second grade and she still is a much better reader than he is. Her level on her report card was 28, which is the highest they have for second grade, but we know it's actually higher (she was at a 4th grade level at the end of last school year), she just won't put that on Haley's report card because then it won't look like Haley's progressing, which I think is ridiculous. Her report card in no way reflects her performance in school, but her teacher is new and doesn't know how to deal with Haley or challenge her at all so when Haley finishes her work (minutes after it's given to her according to her teacher) she just tells her to doodle for a little while! The school wouldn't let me put her in a different class and her teacher wouldn't recommend putting her in third grade reading so she's just kind of breezing through this year not learning much of anything.

Okay, I've vented enough for today! Needless to say, if we're still here next year, my kids will not be going to this school! Oh, Jordan was supposed to see his speech therapist today, too, but we cancelled. Vickie

Monday, January 12, 2004 2:22 PM CST

Day 231--Today was Jordan's clinic day and he had an echo done because his last one said he had "decreased left ventricular funcion", but there really isn't much cause for concern because Jordan has such a high energy level. He has lost more weight, he's down to 41 pounds which is small for him, but he really isn't skinny at all. Dr. Martin changed the dose for his cyclosporine (immunosuppresant) so hopefully we can get him off of it by his 10th or 11th month and we're going to try to go back to every other day with his steroids again, his cortisol levels showed that he is making some steroids on his own, but still a low amt. His blood counts were wonderful, the only one not normal was his urea nitrogen which means basically that he isn't drinking enough so we need to encourage that. They said his skin looks good and they were really surprised that he doesn't have any dandruff, most kids do when they're hair grows back. Dr. Martin figures it must be the Aveeno baby shampoo we use on it, that's what they told us to use when he started radiation before his transplant because of the affects of it on his skin and I've just used it ever since. So, overall, he's doing great!

Everyone else here is fine. Haley and Kyle get their report cards today, I'm expecting them to be really good. We have noticed that Kyle's sarcasm is getting a little worse, hopefully that isn't carrying over to school. The kids got a playstation for Christmas and they have an ATV game that Kevin plays with them. The other day he wrecked his four-wheeler and Kyle says "Uh, Daddy, I think you're supposed to stay ON the four-wheeler." He sounds more like his Uncle Donnie every day.

Friday, January 9, 2004 9:04 AM CST

Day 228--I have four very cold and very happy children this morning! We woke up to snow, this is the first time Jordan and Zachary have ever seen a real snowfall and the look on Jordan's face when I opened up the door for him this morning was priceless! He got his hands going up by his face and started giggling! He had his clothes on before I even had my contacts in! They didn't close or delay Haley and Kyle's school, but I decided they had waited long enough for snow and let them stay home and it turns out that they're dismissing 2 1/2 hours early anyway. Oops, I let my kids skip on report card day! They have been looking forward to snow since they went to Ohio last Thanksgiving. Now, this isn't OHIO snow, but it's something to play in and it packs enough to make some pretty decent snowballs so they're happy. Unfortunately, I was at the receiving end of those snowballs...That's what I get for letting them stay home! Poor Jordan looks like a bear, he has so much on he can hardly move, I hope he doesn't sit down, he won't be able to get back up! Don't worry, I took pictures, I'll get them developed and up here as soon as I can.

This is going to be a really great day for Haley, tonight she has a slumber party to go to at her friend's house across the street. She said she can't wait to have a night without any boys, she says boys are a pain in the butt.

Well, I guess it's time for me to finish up, Zach is pulling on my arm and yelling "I want to go outside and play!!" And yes, it was a complete and very easy to understand sentence. In a minute he'll bring me his shoes and tell me to put them on, I guess I'd better go bundle up! Brrrr...Vickie

Sunday, January 4, 2004 12:35 AM CST

Day 223--There isn't much going on here to write about. Haley and Kyle go back to school tomorrow, but we've had an unseasonably warm weekend so they've spent most of it outside playing and roller blading with their friends. Jordan has even tried out some roller blades, but he'd rather walk in them than roll. He's still doing good, he had another little lump on his chest with a rash, but it went away about a day after I noticed it. It worries me because I don't know what it is, but it doesn't bother him and his doctor wasn't concerned about the first one. I guess we'll just wait and see what his counts look like next Monday. We got the results from his immune function test from his six month studies in the mail yesterday. I don't really understand them, but his PNP put a note with them that said his immune system is still compromised and he needs to continue to wear his mask when he's near anyone (in public) and he's not ready to be re-immunized yet (which I'm sure he'd be glad to know!), but he is where they expected him to be at 6 months. His doctor's hoping that he can start his immunizations at 9 months, but we'll see.

Kevin and I need to decide in the next couple of months if he's going to re-enlist or not. I think his compassionate reassignment is up in April and we're thinking that they'll probably send him back to Korea since he didn't finish his tour there last time. We can't be without insurance and we don't know if we'll be able to find someone that will insure Jordan and Kevin doesn't know what he wants to do when he gets out so that would also leave our income up in the air so it looks like he's probably staying in. We'll also need to decide where he wants to re-enlist for (of course, that also depends where they need someone who can do his job at). It's alot to think about. Right now we're just kind of trying to work it out, but we aren't going to do anything major until after the baby's born, 11 more weeks and counting!! That's what we're concentrating on now, since he wasn't planned there's alot of things that we had given away, but shopping for baby stuff is always fun. Vickie

Sunday, December 28, 2003 3:58 PM CST

Day 216--I hope everyone had a nice holiday. Christmas here went as well as it could have with four kids! They started waking up at 2am Christmas morning and I kept sending them back to bed, then Haley and Kyle would get up about every hour after that to try again. I ended up yelling at Kevin's Mom, I kept saying "it's too early, go get back in bed!" so when I heard a bedroom door open I yelled it again and she said "But I have to go to the bathroom!" Oops!! Jordan slept through all of that, but woke up at 4 to get his pull-up changed. Usually when he wakes up for something he'll just come to my side of the bed and stare at me until I wake up, but of course he had to head out into the living room to see if Santa came this time so when he woke me up he was talking a mile a minute: "Mommy, Santa Claus came and the elves did know how to make a train set it didn't have a face on it but that's okay because this one is bigger and there's a big Hulk tent in the living room that must be for Kyle..." I think I drifted off back to sleep about then! Anyway, they were all pretty happy with Santa and my house looks like Toys R Us exploded in it, but that's not much of a change from usual!

I've heard it's bad luck to take your decorations down before New Year's Eve, but mine all came down today. I wanted to do it while I had the energy to and while Kevin was off work to take all of the boxes/totes back up to the attic. I even got ambitious and went through the kids rooms to make room for the new toys. I think the cold that's been making it's way through our house is finally out. I had it over Christmas and was pretty miserable, Zach had it the day after, but luckily his only lasted one day. Tomorrow we're looking forward to my sister visiting on her way back down to Georgia from Ohio, she said they're all over their colds finally. I'm glad she didn't try to stop over here sick, even little things that just make most people a little uncomfortable can turn into something very serious for Jordan.

Thank-you everyone who sent cards, the kids enjoyed reading them (especially Kyle since he learned to read this year). Also, thank-you Uncle Donnie and Aunt Kathie, Grandma, Uncle Lenny, Aunt Karen and Uncle Gary, and Joann for the gifts, we appreciate all of them.

We're having an unusually long break from the clinic this time, Jordan doesn't go back until January 12th as long as he continues to do well. He was going to go on the 5th because Monday is his doctor's day in clinic, but Haley and Kyle have dentist appts (that I had to make in November!) for that day and his doctor said he didn't have a problem waiting another week to see Jordan.

We hope you all have a happy 2004! Kevin, Vickie, Haley, Kyle, Jordan and Zach

Monday, December 22, 2003 9:56 AM CST

Day 210-- To everyone who means so much to us...Merry Christmas and Happy New Year. With Love from our family to yours, Kevin, Vickie, Haley, Kyle, Jordan and Zachary.

Sunday, December 21, 2003 7:01 AM CST

Day 209--There isn't a whole lot going on here to update today. Kevin is finally over the flu and we managed to make it through with him being the only one to get it, YAY! Haley, Kyle, and Jordan had mild colds, but none of them developed into anything. It's funny, Zachary, Jordan and I all have weaker immune systems and none of us caught anything. I'm glad the kids are out of school now so I don't have to worry about them bringing anything home with them for a couple weeks. I did finally get our insurance straightened out without my head exploding and it seems that they've paid for most of Kevin's surgery charges so far.

We had a really frustrating clinic week this week. On Tuesday I had to take Jordan in for iv antibodies and they had to stick him twice to get the iv started. The first one they tried bruised really badly. Then he asked every nurse he saw if he could have a playstation and they said no because he's in isolation. It's like they were punishing him for being in isolation, he had to sit there in his bay and look at the playstation sitting there outside that he couldn't play because they didn't want to clean it when he was done. And he's been allowed to play them before, that's why he asked. Then we went in on Thursday to have his cyclosporine level checked and it was supposed to be a quick visit, it took 4 hours, an hour and half was just waiting for them to weigh him in and check his vitals. I was already in a bad mood from that, then his PNP was talking to us in the hallway and asked me how Jordan was and while I was trying to tell her about a lump on Jordan's chin (which scared me to death incidentally) another nurse interrupted me like I wasn't even there, I was furious. His PNP had planned on that being a quick visit so usually she comes in and then she brings the doctor in after she checks him out, but instead this time she brought the doctor straight in. She wasn't even going to have him see Jordan, but they wanted to make sure his cold was improving and check out the lump on his chin. Now when I say lump it sounds bad, but I really wouldn't have noticed it except he had a red spot on it and it looked like maybe his zipper had caught on it or something, but I could feel something under his skin. The redness is completely gone now, I can still feel something under his skin, but it's very, very small and I wouldn't know where to look for it if it hadn't been red before. The doctor wasn't concerned about it, he just basically said to call if it changes.

Jordan has been feeling really good. He hasn't been throwing up at all and his appetite is great again, which is good because he's down to 42 pounds and looks very skinny to me, although he's probably the size of other 4 year olds, I'm just not used to seeing him this size. I can actually snap his jeans over his belly instead of under it! His cold is gone. His speech therapy teacher hasn't been able to see him at all because she's had the flu, but just in the space of time between visits from the other teachers evaluating him we can see alot of improvements in all of the other areas, especially counting and letter recognition. I guess he was just waiting until we weren't looking to learn them! He's actually learning his letters along with Zach, Zach can recognize about 10 letters of the alphabet now. Oh, it was so cute, a couple days ago I got up and said "Good morning Zachy" and he said "Good morning." I said "How are you today?" he said "I don't know, how are you today?"

Kevin went from early duty one week to late duty the next week, but now he's finally back to normal, I'm hoping he'll get a couple of short days this week so he can spend some time with the kids. My sister's family all got sick so she isn't going to be able to visit, but Kevin's Mom and I think his brother will be here for Christmas. I can't believe there's only 4 more days, it seems to come up very fast. I'm not sure when I'll be updating again so let me say, I hope everyone has a Merry Christmas and a happy 2004! Kevin, Vickie, Haley, Kyle, Jordan and Zach

Monday, December 15, 2003 9:00 PM CST

Day 203--Just a quick update...Jordan had a clinic visit today and we got the results from most of his six month studies. He is still "greater than 99% donor cells", YAY! His chest x-ray was normal. His echo is still showing mildly decreased left ventricular function as a result of all the chemo, but they expect it to be resolved by the one year mark. He has another echo scheduled in January just to keep an eye on it. He's lost another pound so now he's just below pre-transplant weight, but still very healthy because of his excess weight. I was worried because he has a cold, but Dr. Martin said he looks good. They did check is IGG levels and decided that although it was still in the normal range it was slightly low so they're going to give him IVIG tomorrow to help him fight off anything his cold may develop into. He thought it was important since Kevin has been home sick with a cold and fever and I kept Kyle home from school with a cold. Kyle really isn't that bad, though, I was just afraid that if his system was already weakened from the cold he might pick up the flu since there was some in his class. Poor Kevin is miserable, but he's improving, it was good that he stayed home from work to rest.

That's all for now, we're just hoping that everyone manages to recover without infecting our whole house. Jordan was very upset that Daddy wouldn't give him his bedtime hug and kiss so he blew him a kiss instead. Poor kid. Vickie

Friday, December 12, 2003 7:46 AM CST

Day 200--This week has been a pretty tough week for Jordan and I, but everyone else is doing okay. Jordan did say "I don't think I'm going to throw up today" and asked for some breakfast when he woke up this morning. I think he's reacting to going down to every other day with the steroids, he's been throwing up his medicine pretty much every morning this week and then hardly eating anything the rest of the day. Yesterday he threw meds up three times and told me he was getting tired of feeling bad. You have to understand, through all of his chemo and radiation he was never sick unless it was an infection, this is new to him and even after he was sick he gets up and go plays. He's not laying around and when he does eat he isn't sick afterwards, it's just his meds, but it's still hard to watch.

I have been fighting with Tricare (our health insurance) all week. They have always been my favorite insurance to deal with, especially on post because then we just go to the doctor/hospital when we need to and get Jordan's referrals and everything's fine. We aren't near a base now, though, and they're no longer my favorite people to deal with. They changed our family's primary care physician without telling us so we're starting to get billed for Haley's dermatologist, my OB appts. and my head is going to explode if they don't pay for Kevin's surgery. The only thing that they are covering are Jordan's appts. which I should be thankful for, but I still have to call his case manager once a week and let her know all of the ones that they didn't pay all of so she can resubmit them. I can deal with them, but it takes alot of time on the phone which anyone who has tried having a phone conversation with me during the day (when the kids are awake) knows how difficult time on the phone is for me to come by. I tried to have a conversation with my sister a couple days ago and in the background Jordan is throwing up so I was taking care of him and then Kevin calls from work on the other line to get a fax number he needed. Thank God for cordless phones.

On the bright side, Kyle's Christmas program at school last night was adorable. They had it with the 5th graders and it was really well done. Kyle made a really cute Joseph walking out on stage with "Mary" and whoever made their costumes did a fantastic job. The kindergarteners acted out what the 5th graders were singing and when they first came out I laughed so hard I almost dropped the video camera. They all did really good and Haley enjoyed it, too. When we got home Jordan was very upset, sweet little Zachary had been hitting him on the head with a truck and throwing things at him while I was gone. I think Zach has figured out that the other kids aren't allowed to hit him back so he's taking advantage of it! But he does get pretty upset when we stand him in the corner for it. When I checked on him he was in his room sorting his blocks in his activity table by color. He's smarter than he lets on, sneaky too!

If Jordan stays feeling okay today his teacher will be coming to work with him this afternoon, more evaluations. If not, I guess we'll be at the clinic because I can't see him like this any longer. I can't sleep at night anymore because I'm worrying about why he's sick and everything that I'm probably doing wrong with the other kids. At least Kevin had early duty all week which means he's home earlier so Jordan and I have been laying down in the afternoon and taking a nap when he gets home. It doesn't help me at night to skip the nap, it just makes me more tired so I'm glad to have it. I can't get used to it, though, because Kevin goes back to his regular hours next week. Oh, speaking of Kevin, he had a doctor's appt. yesterday and he doctor said that if he's ready he has no problem with Kevin starting running again, but they decided to put it off until January because Kevin still has a little bit of pain. He couldn't even see the stress fracture in an x-ray anymore. So we have had some good news this week, too.

Thanks for checking in on us! Hopefully I'll have a more upbeat entry next time!

Sunday, December 7, 2003 8:16 AM CST

Day 195--We've had a pretty fun weekend getting ready for Christmas. We took the kids to the mall (while most people were at the Christmas parade) to see Santa, then we went to Meadow Lights with Grandma to ride a little train and see a light display. That was really nice, they get really creative with their display. They even had a whole set-up of Bethlehem and the inn. The kids enjoyed it, but we got home really late so we're all kind of tired today, at least Kevin and I are!

Jordan had a strange week, I guess he's just getting used to his steroids being every other day. I had to take him to the clinic one day for a urine culture because he complained every time he went to the bathroom, but it came back negative so I don't know what was going on. That seems to be getting better, though.

Everyone else has been doing fine. Kevin's leg is slowly improving, he's starting to bend it better. Haley and Kyle are getting pretty excited for Christmas. Jordan asks me every day if it's here yet. This Thursday Kyle is going to be Joseph in his school program, I'll have to videotape that, it's his first program, it should be pretty cute since it's all kindergardeners. He's excited this morning, the tooth fairy came last night and brought him a dollar. It seems to me that the tooth fairy used to just bring a quarter, I don't know what's going on there! Zachary is working on learning his shapes and letters so Kevin and I keep getting hit in the head with his magna doodle when he brings it to us saying "please make a A" and if we make it little he gets excited and says "that's a baby A!" He can recognize "Zach", too. He's getting so big!

Vickie

Tuesday, December 2, 2003 7:02 AM CST

Day 187--We had a pretty eventful day yesterday at the clinic, busy anyway. The tests that have come back so far look good, his blood came back okay. Jordan's magnesium was a little low, but since he's acting fine (normally his legs, head and back hurt when it's low)we aren't going to do anything about it. They took him off of his blood pressure medicine, he doesn't need that anymore and weaned his steroids some more. He's down to every other day. Dr. Martin said we could take him off of it, but if his body isn't making steroids yet that would make him feel pretty bad so we'll just wean it instead and they'll test him at his next appt. to see if he's making them. His weight hasn't dropped alot since his last appt. and he's starting to eat again, thank goodness. His muscles are firming up in his legs, he's getting stronger all the time. Overall Dr. Martin was pretty pleased with how he's doing. He's going back on Dec. 15th. We could've waited longer between visits, but I didn't want to go in the week of Christmas since Haley and Kyle will be out of school and my sister and her family are coming up for a couple days.

I asked Dr. Martin about banking the umbilical cord blood from the new baby and he said that Jordan will be at about ten months post-transplant when the baby is born and most children relapse before the one year mark if they're going to so we probably won't need it, but they'll store it for ten years so it will be a "good insurance policy". Pray that we won't need it.

We had a nice, quiet Thanksgiving at home. The kids and I watched the parade and put up the Christmas tree and we let the kids do most of the decorating while Kevin did most of the cooking. Even that went smoothly and it turned out to be a pretty relaxing day. I didn't attempt any shopping on Friday, but most of our shopping was done already anyway, I just finished up online a couple days ago, online shopping is one of the greatest inventions ever!! It's starting to get pretty cold here so the kids are watching anxiously for snow, Jordan says it has to snow on Christmas.

We're all doing pretty good, we're still waiting to find out how Jordan's echo turned out and it'll be a few weeks before we find out about his immune function, but Jordan is being Jordan so we couldn't ask for more. Vickie

Wednesday, November 26, 2003 8:25 AM CST

Day 182--I thought I would share a conversation I had with the kids this morning. When I woke up today Haley said "Mommy, tomorrow's Thanksgiving!" and I said "yep" (still half asleep) and she said "Do you want to know what I'm thankful for?" Well, of course I said yes! She said "I'm thankful for you and Daddy." So now Kyle has to tell me what he's thankful for. He said "I'm thankful that God is alive, because that's a good thing." I tried to ask Jordan, but he was involved with playing with a Little People set and got very angry with me for interrupting him so I won't bother him! We've decided that Zachary is our turkey, I called him one last night and he argues with me. I said "Zachy, are you a turkey?" He says "No, I the baby!"

Kevin and I have so many things to be thankful for this year, the top of the list being having all of our kids under the same roof and Kevin being in the same country! This will be our first family Thanksgiving in three years, we always seem to be separated by either the hospital or the Army. He has late duty this week, but as long as nothing sets the alarm off he should be able to stay home with the rest of us, let's hope that doesn't happen because he's doing most of the cooking!

Jordan just informed me that we should name the new baby Barney. I think I need to start limiting his TV time!

Happy Thanksgiving everyone!
Kevin, Vickie, Haley, Kyle, Jordan and Zach

Tuesday, November 25, 2003 2:59 PM CST

Day 181--There isn't alot going on here, but I thought I'd update so no one would worry. Jordan's doing really well, he's looking and acting more like himself all the time, his temper is in full swing. He's lost his steroid cheeks and belly (although he still has his old chubby cheeks and belly). He isn't as excited about Thanksgiving as Kevin and I are, except that is when we're planning on putting up the Christmas tree and he can't wait for that. I'm just glad we're all together this year. I put up a train that Jordan got while he was inpatient last year getting chemo at Christmas time and he was really excited. Unfortunately it plays music and Zachy loves the music so it's already driving me nuts!

All last week up to yesterday the temps have been in the seventies here, but today Haley had an outdoor nature walk field trip for school and the temp dropped to the low fifties. At least the sun was shining. This is their last day of school this week. I'm not sure what we're going to do the rest of the week, except our Thanksgiving dinner at home. That's really all I have to update right now, all's quiet here, the way I like it! Vickie

Friday, November 21, 2003 7:19 AM CST

Day 177--Okay, who didn't have their fingers cross for the ultrasound?! It must have been Kyle and Jordan who jumped up and down and did a happy dance when they found out we are having ONE HEALTHY BABY BOY. Again. Don't get me wrong, we're thrilled that he's healthy and everything looks good, but what in the world will I do with FOUR boys? Haley and I will be run out of the house! Actually if he's a mama's boy like the other ones I will not have 5 minutes to myself for the next 18 years! I told Haley it'll be up to her and I to keep them all in line, she liked that idea.

Everything else is going well here. Kevin had a good doctor's visit yesterday, they took his bandage off so he can move his leg a little better, but he still has to work on bending his knee, they told him how to exercise it. They took the staples out of the incision site, he said that hurt, and it's swollen a little, but nothing unexpected so he doesn't go back for another three weeks. They want him to be able to bend it by then.

Well, time to fight Jordan into taking his meds. If anyone talks to Donnie and Kathie tell them to give me a call and let me know how they are. Also, the same with Jennifer, are you settled in Hawaii yet? Give me a call or send me a note! Vickie

Tuesday, November 18, 2003 11:10 AM CST

Day 174--Jordan had a great doctor's visit yesterday! Well, the visit itself wasn't great, but the results were all good. We had an issue with his blood pressure, for some reason Jordan decided to throw a tantrum about getting his vitals taken and if you've never seen a "Jordan" tantrum, let me tell you, you don't want to! He doesn't stop until he's got it out of his system, there isn't any way to stop him, I had to just stand him in the corner of the exam room and let him scream until he was done. So anyway, this tantrum made his blood pressure skyrocket so we ended up staying at the clinic an extra hour waiting for them to recheck it after he was examined because they had to make sure it wasn't high (it wasn't, it was the lowest it's been since the transplant). His labs were wonderful, almost everything was within the normal range, the only few things that weren't were a result of the immunosuppressant he's on. There was a little concern over how much weight he's lost, he's down to 45 pounds so they charted his growth and he's in the 90th percentile for his weight and only the 12th percentile for height (big surprise considering how short Kevin and I are, ha, ha) so he still has more weight he can safely lose. My poor boys are all short.

Kevin started back to work without any problems, at least none related to his leg! Just some work issues. He's off of the pain medication and goes in Thursday to have his stitches taken out and bandage off. He'll probably be glad about that, it itches alot.

I'll finish with a cute story of how spoiled our Zachary is. I was teasing him the other day, he was climbing onto my bed and I said "Hey, what do you think you're doing mister?" and he said "I not mister, I the baby!" I can already see the rivalry we're going to have with another baby in the house!

Vickie

Saturday, November 15, 2003 11:49 AM CST

Day 171--Sorry it's been so long since my last update, we switched from a cable modem to dsl and had to go without internet for a couple days. At least with the update I posted new pictures!! Some of them are older, from June just a week or so after Jordan's transplant, but they came out so well that I wanted to share them. Aunt Karen, Uncle Gary, and Grandma came to visit Jordan at Duke and played with him for awhile, he had a really fun day and the pictures were great. The home page picture is from October, obviously we're at the pumpkin patch picking out pumpkins. The kids were a little excited so I only got the back of Zachary's head!

Kevin's leg is gradually getting better, it still hurts and he has some trouble moving it too much, but he's getting around. He can walk on it more than he was and he's not taking much medication anymore. He's having a little easier time getting comfortable with it. He goes back to work on Monday.

Jordan is still doing well, he goes back to the doctor on Monday. It's hard to believe that his six months studies are Dec. 1st. Time has gone by so quickly and we are so thankful that he's had such an easy time recovering. He'll be really happy when he's done with meds, he's starting to put up a fight now every time we have to give them. That's actually a good sign because that's Jordan, he's fought over every medication he's ever taken since he was a baby, but it doesn't make things any easier! It's difficult to win a fight with Jordan, he's so strong willed!

I'm starting to feel better, too. My cold's going away so I'm not quite as tired as I was, which is good! I have an ultrasound scheduled for Thursday, hopefully we'll find out if it's a girl or boy, keep your fingers crossed! Vickie

Sunday, November 9, 2003 3:51 PM CST

Day 165--Kevin's surgery went well...at least according to the doctor! He's in an unbelievable amount of pain. They have given him medication to help, it doesn't really do much for the pain except put him to sleep so he sleeps through it for a couple of hours at a time. The kids have been doing really well about leaving him alone so he can rest, I was a little worried about Zachy because he likes to climb on Daddy whenever he lays down, but he's been good. Kevin's Mom was nice enough to stay with Jordan and Zach while I took Kevin and then stayed over and helped with the kids. For some reason sitting in the waiting room all day wore me out so I was glad to have the help!

Jordan has had an odd week, but he's doing better now. For some reason he couldn't tolerate his prednisolone (steroid) for about 3 days, every time he took it he threw up and he stopped eating and napped every afternoon, just not like him at all. The bad thing was that the prednisolone was the one med that would make the other stuff better, but he couldn't keep it down! I tried mixing it with other stuff and finally just started sneaking it into his sippy cup, but that had to be temporary because we can't be sure that he gets the dose when it's in there. Anyway, I called the clinic and the nurse practitioner recommended mixing it with a spoonful of Hershey's syrup. Jordan thought that was funny and it worked perfect. Apparently the syrup masks the taste enough for him to stomach it because he didn't even flinch when he took it. It's strange, too, because he's been on this since June and now he's on a tiny, tiny dose. I'm glad we found something that works, though, he worried me. Now that he doesn't have a central line we can't just go to the clinic and get a bolus of solumedrol to make up for it.

Time to go fix dinner! Thanks for checking in on us, don't forget to sign the guestbook! Vickie

Wednesday, November 5, 2003 7:21 AM CST

Day 161--This is shaping up to be a very long week for us. Monday Jordan got his line out which went fine and he feels wonderful. He was in no pain at all, once I got him dressed in recovery he was fine. He saw his doctor Monday, too, and everything looks okay there. He has a nasty rash that they said wasn't GVHD, but I can't imagine what else it could be. It doesn't bother him too much, it just itches occassionally so we have some creams to put on for that. His immune function tests are finally back from his 100 day studies, almost in time for them to be done again for his 6 month studies. I won't pretend to understand them, but I can say that one test came back right where they expected him to be, a little higher actually, at 40mmune function. That still means that he has to stay home, no public places, but it also means he's progressing and that's good. He's been really tired the past couple of days, I think from his latest steroid wean, he takes such a tiny amt. and his body isn't making any steroids to sustain him yet so he naps alot, I think well have to raise his dose a little. He's also lost weight, he's down to 46 pounds which worried me because he isn't eating very much, but his doctor says it's fine, he's losing steroid weight and he isn't having cravings anymore so they expect him to lose some. He still isn't down to his pre-transplant weight.

Kevin has his surgery Friday on his leg. They're going to put a stainless steel rod down in the bone. It sounds very painful to me, but if there is no infection the recovery time is actually faster than waiting for the stress fracture to heal. He'll only be out of work for a week, but it will be about 8 weeks before he can run and walk normally again.

All of these doctor's visits have been incredibly frustrating for me. I started getting sick on Halloween, I have a very painful cough, but ironically, I spend two days out of every week at some doctor's office or hospital, but I have to keep rescheduling my appointments. I've already cancelled on my OB twice and rescheduled my ultrasound twice. I know that if I don't take care of myself I can't take care of Kevin and the kids, but it's just not working out. I can't sleep at night between my and Kyle's coughing, Jordan yelling for more to drink, and Jordan and Zach getting in my bed to sleep with me and I can't rest during the day because there's just too much to do and the kids need my attention. I guess at some point it'll all work out, I'm just too tired to see that far ahead! I am very thankful that we will all be able to spend Thanksgiving together this year, last year Jordan was inpatient getting chemo and Haley and Kyle were in Ohio with Uncle Donnie and Aunt Kathie. I'm glad they were able to do that, too, because it would have been hard to try to have a "normal" holiday with them here. I'm really looking forward to the holidays this year, we need to celebrate every chance we get, we have so much to be thankful for. Many families are inpatient on 5200 from all over the world away from their families, if you want to help they appreciate donations of phone cards, restaraunt gift cards, gas cards, toys, books and games for the children, and especially time. Please keep them in mind this season. Thanks...Vickie

Sunday, November 2, 2003 9:07 AM CST

Day 158--What a great weekend! The kids had a blast. Kyle said "These are the best two days this month!" On Friday we went trick-or-treating with Grandma while Zach and Kevin stayed at her house to pass out candy. Hopefully I'll be able to get those pictures posted soon. Haley was Clifford, Kyle was Spiderman and of course Jordan was Batman. Zach was going to go as Blue, but he didn't like wearing a costume so we took it off of him. Then on Saturday we came back home in time to visit with Uncle Donnie and Aunt Kathie. Poor Kyle, he wanted to go with them! Uncle Donnie's his favorite Uncle. They really had fun playing. Zach and Jordan warmed up to Aunt Kathie, I think the bigger kids roughhousing was a little too much for them. Jordan played football with a football pillow with Aunt Kathie and Zach kept snuggling up on her lap to try to fall asleep. Haley and Kyle went for a walk outside with Uncle Donnie and wrestled (whether he wanted to or not), Kyle wanted to sleep with him because he was afraid he would leave in the morning without saying "good-bye", but we got everyone settled. They're on their way down to Georgia to see my sister now, then on to Florida. It won't be nearly as long of a drive for them today. We really had a good time this weekend.

Tomorrow is Jordan's surgery to get his line taken out. He'll probably be a little sore (and hungry) from that, but I don't expect any problems. He also has his regular Dr. visit. He's scheduled for his six month studies on December first, YAY! I'll update as we get more info. Vickie

Tuesday, October 28, 2003 1:11 PM CST

Day 153--So far, so good! The fever hasn't been back and Jordan is definitely back to normal. We have to watch him for awhile though, he had an echocardiogram today that showed that part of his heart isn't pumping the blood through as well as it should be, probably a result of all of the chemo he's had, but since he isn't having any reactions from that and there's no fluid around his heart we're just going to keep an eye on him. His counts have been okay, his white count is a little elevated, but that's probably from whatever caused his fever last week. He's pretty excited, next Monday he has surgery to remove his other central line since it isn't drawing blood and he doesn't get hardly any iv's anymore. I wish they didn't have to stick him for labs, but at least we won't have to worry about a line infection.

Jordan made sure he was better in time for trick or treating this week! He's already tried on his batman costume, of course! The kids are counting down the days. Last weekend we carved pumpkins and baked pumpkin seeds and sugar cookies. The weekend after Halloween their Uncle Donnie and Aunt Kathie are stopping for a visit on their way to Florida. I know the kids will be really excited, Donnie is really good with the kids. They can tell that he loves playing with them as much as they do him, especially Haley and Kyle. Jordan and Zach don't remember them as well. We're all looking forward to the visit, it'll be nice to have some company. The kids should be pretty wired anyway from all of the Halloween candy!!

Vickie

Friday, October 24, 2003 6:48 PM CDT

Day 149--Things are getting back to normal now after such a hectic week. All of Jordan's cultures came back negative which is good, but we still don't know what was going on with the fever. His last dose of antibiotics is tomorrow so we'll just be praying that it doesn't come back after they're out of his system. Jordan's back to acting normal. His appetite has returned and he's up playing fine. He had a session with someone from the public school system to determine where he's at developmentally and what he needs help with at home. They've decided that he definitely needs speech therapy. All of his other scores were average or above average, but they were averages of different skills so we're discussing getting some physical therapy for his gross motor skills also and maybe some help with his school readiness like letter and number recognition.

Kevin had a cat scan of his leg today, he has an appt. next week so they can tell him the results and make a decision what they're going to do about it.

Thanks for checking in on us. Vickie

Wednesday, October 22, 2003 2:22 PM CDT

Day 147--We don't really know what's going on right now, Jordan spent last night in the hospital. Yesterday morning he was playing fine, then after awhile he cried because it hurt when he lifted his hands above his head. Around lunchtime he started running a fever (only around 99) so they wanted us to come in to the clinic so they could look him over. By the time we got there he was crying that his back and belly hurt, too and he wanted to lay down. We went upstairs and while we were waiting (about an hour and a half) he was crying and shaking with chills. They ended up starting some antibiotics running, vancomycin and ceftaz and by the time they were finished his temp was around 104. They admitted him last night and his temp stayed right around 105 until 4am when it finally broke (with some help from tylenol that I finally forced him to take although he kept refusing it).

The fevers haven't come back although Jordan is still in some pain, but it's not as bad as it was yesterday. They drew cultures so we're waiting to see if they grow anything. We're home now, he's just going to be on iv antibiotics here for awhile to keep him covered and he has to go to the clinic this evening for antibiotics since home health isn't set up yet. Jordan and I are very tired. He had me pretty worried last night, he was so hot. I'm glad the antibiotics seem to be doing their job. And Jordan is acting more like himself now, at least he's talking more.

I need to go get his backpack ready to take to the clinic, he has to be back there before too long, but I think Kevin's going to take him so I can rest a little while. Vickie

Tuesday, October 21, 2003 7:20 AM CDT

Day 146--I updated a couple days ago, but I don't know where it went so I'll write again. We're doing okay here, the kids are really excited for Halloween to come. Jordan can't wait to be Batman. He went to the clinic yesterday, unfortunately his line won't draw blood so although I told the nurse when we got there at 9:45 that it didn't work they didn't try to fix it until around 11:30 so we were there until 3:00 when I had to leave to make it home before the bus came. They took blood from his hand right before we left. He did really good so they only had to stick him once. They scheduled him for an echocardiogram, we had a hard time finding out why, but they finally told me yesterday that it was because it first one wasn't a clear reading because of "patient body mass" and "poor cooperation" so they want to follow-up. The good news is all of his donor cell tests for different parts of his blood came back at greater than 99% donor so he's well engrafted. He only has to go to the clinic every 2 weeks now so we're taking Zach out of daycare, but he's finally gotten used to it, he didn't even cry when I left yesterday.

Kevin is back in a walking cast again. He has another stress fracture, his third I think. They're going to do a cat scan to rule out a tumor then they're discussing putting a metal rod in it because his leg keeps breaking. The biggest risk there would be infection. I guess we'll wait and see what the scan says. He's in alot of pain from it, especially when he takes the cast off so hopefully they'll do something soon.

There are new pictures in the photo album. It's been awhile since some of them were taken, but I thought it was time to update anyway. I'm waiting for the ones from the pumpkin patch to come back, then I'll put those up. Vickie

Monday, October 13, 2003 4:52 PM CDT

Day 138--Today has just been a stressful day all around. Zachary has been sick, he was throwing up last night, we think it was just where he had swallowed so much phlegm from his stuffy nose, but I still had to scrub everything just to be sure. After cleaning all of their toys, bedding, and carpets I've decided that my kids have too much stuff!

Haley and Kyle scared us to death today. They were outside playing and wanted to see where a path through one of our neighbors' woods would take them. This is somewhere that they aren't allowed to be and have been told repeatedly to stay out of, Kevin and I hadn't even been there. After Kevin caught them there once when he checked on them he came back in thinking that they were going across the street to play in a friend's yard. About ten minutes later a sherriff showed up at our door asking if we knew where our kids were. Apparently that path leads to a road that is actually quite a ways from our house by car and they were standing on the side of the road. They wouldn't get in the car with the sherriff, but they did tell him their names and address. When Kevin went to get them they were coming back out of the woods on the same path. Needless to say they're now grounded until they're 50.

Jordan's clinic visit went fine today, everything's about the same so they weaned his steroids a little more. We're glad to see that he's not getting a rash with the weaning this time.

We're thankful right now that the kids are all okay and I'm sure that Kevin and I will recover nicely from our heart attacks, until the next time they get an idea! Vickie

Monday, October 6, 2003 7:10 PM CDT

Day 131--I haven't updated in awhile because there really hasn't been too much to update. I'm not sure how much longer we're going to keep these journals, it doesn't seem that too many people are using the site to check on Jordan (of course we talk to alot of people on the phone) and I have a hard time finding time to get on here, although with a husband and four kids I can't imagine why!! Anyway, Jordan had his clinic visit today, his labs looked great. Fortunately he's maintaining normal levels of platelets, we had an incident last night that could have been a trip to 5200. Kyle and Jordan were fighting and Kyle kicked him and it knocked Jordan backwards into their bunkbeds where he bumped his head. Jordan cried pretty hard over it, but didn't even get a bruise. He was probably more angry at Kyle than he was hurt. In a couple weeks Jordan's going to meet with someone from the public schools about speech therapy and hopefully some pre-k at home.
Haley and Kyle had their open house at school this past Thursday. It was pretty discouraging, both of their teachers basically told me that they're at least a grade ahead, but they really aren't planning on doing anything about it. I think they just like having easy to teach students in their classes so they're taking the lazy way out. I scheduled conferences with both of them so I'm going to push putting Haley in third grade reading. I think Kyle needs kindergarten to transition into elementary school, this past year was very hard on him emotionally and I think an easy school year will give him some confidence and his teacher seemed like she was trying to challenge him with reading and we can do alot of that at home, but this is Haley's teacher's first year and I think she's in too far over her head to deal with Haley and Haley's getting lazy thinking that school's a breeze because she already knows this stuff.
Overall it was a pretty calm week, we picked out pumpkins at the pumpkin patch over the weekend, oh, and Haley is selling raffle tickets to help pay for her cheerleading uniform so let me know if you're interested, they're raffling a TV and some cd players. That's about all that's going on here. We're pretty happy to have things calm down so much. Vickie

Tuesday, September 30, 2003 5:16 PM CDT

Day 125--Jordan's appt. Monday went very well. He only has to go in on Mondays now, YAY! He is back on all oral meds and he really hates the oral prednisolone (steroid), but he's managing to keep it down so far although he tries to argue his way out of taking it every time. Since the weather has started cooling down a little bit he spends alot more time outside and he's made friends with the little girls in the neighborhood (all Haley's age). He went to a neighbor's house with Haley and Kyle yesterday to play in the yard and sent his friend home to ask us to put more Gatorade in his cup! When I asked him about it he said Haley and Kyle wouldn't do it! We've been encouraging him to do things for himself so we try to keep Haley and Kyle from waiting on him.

We also got the okay from Dr. Martin to move. We have been looking for a house a little closer to Kevin's work, around Garner. We haven't found one yet, but we're pretty excited to be looking. We've always moved around so much that this will be the first house we've bought. It's over an hour away from Duke, but that's okay because Jordan can see a pediatrician (with some info. from Duke) and just have once a month then every three month visits at Duke. Once we move it will be the first time in two and a half years that Jordan's seen a pediatrician instead of an oncologist.

It's time for Haley's cheerleading practice so I'll have to stop here today. Vickie

Friday, September 26, 2003 7:27 AM CDT

Day 121--Jordan had his regular clinic visit yesterday, there really isn't anything new. His blood pressure is a little high, probably because they had raised his steroid dose last week and he has an unusual rash. It isn't a graft versus host rash, or at least it isn't like the rash that he usually gets. We think it might be a side effect of Septra, a drug he's on to keep him from getting pneumonia. It doesn't bother him too much, he says it feels like a sunburn and it comes and goes on its own. It'll be nice to stay home today, get some things done around the house and spend some time with Zachary.

Tuesday we had a really fun day. Our friends, Micheal, Jennifer, Shelby and Zachary stopped to visit on their way to visit other family members, then they're on to Micheal's new duty station in Hawaii so it will be awhile before we see them again. We will really miss them, but it was a nice visit, the kids had a blast. I know Haley, Kyle, Jordan and Zach were all worn out after they left so hopefully Shelby and Zachary took a nice nap on the 5 hour drive they had ahead of them!

Jordan and I have been spending time in the kitchen today (his favorite steroid-induced place!). He is really excited over the jell-o making process, but he isn't very happy that we have to wait for it to set. I think the peanut butter cookies made up for it though. It's so nice being able to stay home for a day, we almost feel normal!

There's a new link below, it's for information about a petition for a childhood cancer awareness postage stamp. Vickie

Monday, September 22, 2003 9:12 AM CDT

Day 118--I want to start out by saying that I heard on the news a couple of nights ago that the Red Cross is having a serious blood shortage all over the country. Blood only has a 42 day shelf life so after that it has to be discarded and it has to come from other people, it can not be manufactured/reproduced. PLEASE DONATE BLOOD AND/OR PLATELETS!! That is one of the best ways you can help children suffering with leukemia or having transplants like Jordan. He has had too many transfusions for me to count, they are critical. I was told that it isn't really possible to designate who your blood goes to because of type and screening, but it's going to help someone. The Red Cross bloodmobiles are open 7 days a week, you can call them for locations or you can donate at your local hospital. Kevin donated a few weeks ago at work and Jordan was very curious about the "owie" on Daddy's arm, but it made it all the more worthwhile to Kevin because Jordan had to get blood that day.

Jordan continues to do well. He threw up his medicine last weekend, but since then has kept it down. We still don't know what's going on there. He has an unbelievable amount of energy and imagination. He can always come up with some scenario out of whatever he has at hand. When he was waiting to have his line taken out last Thursday he was in the process of setting up the room to be his restaraunt when they took him back (he was very angry at the interruption). He's also gotten very curious lately, he questions everything, why...why...why? All part of being four! I worry about him alot, I always will, but I can relax a little when he's running through the house with his cape on yelling "Mommy, you're the bad guy, fight with me!" We're getting ready to go to the clinic now, it's his day to see Dr. Martin. Vickie

Friday, September 19, 2003 7:41 AM CDT

Day 115--We survived the hurricane with very little damage, just alot of tree branches down. We lost power for about 4 hours yesterday afternoon. Jordan got his bottom line taken out yesterday morning and he's feeling fine, it doesn't hurt at all anymore. He started screaming as soon as they took him away from me to the operating room and he woke up crying and yelling for me. As soon as I got him dressed he climbed down off of the bed on his own and was ready to walk on his own.

That's about all there is to update right now. I put a couple of new pictures in the photo album of Zachary so be sure to check there. Vickie

Tuesday, September 16, 2003 9:35 AM CDT

Day 112--Well, Jordan has started keeping his meds down, but they had to raise his steroids so now he's getting just that iv so it's not too bad. We dropped most of his meds to find out what might be bothering his stomach so he's only on three now (and a Flintstone vitamin). It seems to be working, he's starting to eat again, although the steroid increase will increase his appetite, too. Through all of this he's still been up running around and playing, he keeps asking Kevin and I to "fight" with him.

Haley, Kyle and Zach are doing fine. Haley started cheerleading a couple weeks ago and made the All Star team so she's really excited, they get to be in parades and she can't wait. We didn't realize when we signed her up that it was competitive, but she likes it. Zach had pictures taken at daycare so I'm hoping to get our scanner installed in the next couple of days so I can put those on here, they came out really cute. We didn't know that they were taking them, though, or we would've dressed him nicer!

Sunday, September 14, 2003 5:14 PM CDT

Day 110--Jordan has been worrying us a little this weekend and ended up going to the clinic today although he's scheduled to go tomorrow. For some reason he is throwing up all of his meds and he hardly eats anymore. When he does eat he can keep it down, just not the meds, we don't know what's going on, but for now he is going to have to get them iv so they're going to run them in the clinic tomorrow and then try to get home health involved so I can give them at home. It's really disappointing, too, he's only on 4 meds, the rest are supplements, it just feels like we're taking a step back. And tomorrow is his pre-op appt. to have his bottom line taken out, we're still planning to go through with that. I don't know how long we'll have to give them iv, his steroids were almost completely weaned, he was down to .7 cc, which is just a tiny amt. We're hoping to find out more tomorrow. Vickie

Tuesday, September 9, 2003 8:47 AM CDT

Day 105--HAPPY BIRTHDAY KYLE!! Today is Kyle's 6th birthday. We had cake and ice cream (and presents, of course!) with Grandma on Saturday to celebrate. And just in time for his birthday, Kyle learned to ride his bike without training wheels, however NOT without alot of scratches and scrapes! He did it on his own, though, he's stubborn and he didn't want us to help him.

Jordan had his 100 day studies yesterday. Everything was either fine or would have been if he would've been more cooperative. He was in a bad mood because he was bored, he couldn't be in the waiting room with everyone else so he can't watch tv or play the video games they have there and he just kept telling me I was mean because I wouldn't take him there. He did get more stickers than he knows what to do with in x-ray, though! They just really need an improved child life program at Duke for the transplant children. The good news is he only has to go to the clinic every Monday now and after a month or so it'll go down again to every couple of weeks, they have to make sure he doesn't have a reaction to a new med. They did a study to check his immune function, but we won't get the result until about 3 or 4 weeks from now. They expect it to be low still, but Jordan's been known for surprising the doctors so we'll see. It must be his willfullness. He's starting to lose some weight, too, but he has it to lose! He's almost completely weaned from his steroids now so his steroid belly and cheeks are starting to go down. He's playing all the time now, pretty much back to normal (unfortunately his temper is also) so now I think it's time for me to contact the school board about early intervention for homebound kids. He really could use speech therapy, but he's been too tired to work with them before. I guess he's up to it now, he's walking around in my high heels!

Wednesday, September 3, 2003 6:51 PM CDT

Day 99--Tomorrow is the big day, DAY 100!! This is a big deal for us. If we still had a house in Georgia (which some days I wish we did) we would be getting ready to go back to it since Jordan's doing so well. As it is, he's going to the clinic tomorrow and he has his 100 day studies on Monday. We are so glad to be reaching this milestone with no leukemia. He still has a ways to go, but the road could have been much more difficult than it has been, we've been very fortunate that he has such a strong body and will.
Another goal Jordan has accomplished is potty training! We started working on this when he was three, but when he relapsed it stopped. Now he has decided he's ready and he has pretty much trained himself, he just wears pull-ups at night, which is fine with us! It's a less important goal, but we're still proud he accomplished it!

Now it's time for me to brag on the other kids! Haley and Kyle have adjusted wonderfully to their new school. Kyle's teacher sent a note home Friday that said he's ahead of all of the other kids academically, he's "exceptionally bright", and that while the other kids will be learning to draw a picture to tell a story he will actually be writing out his stories. Haley's note was less specific, but also said that she's doing excellent, but she still hasn't made a decision whether to put her in third grade or what. I think Zachary has finally adjusted to daycare, too. They had to close last Friday because of a problem with the building and he yelled at me all the way home for not dropping him off. He kept telling me to stop.

The kids have all been through so much, we're really proud of all of them.

Wednesday, August 27, 2003 8:57 AM CDT

Day 92--Monday's visit at the clinic was very, very long, but it went well. They are going to schedule Jordan to have the central line in his belly taken out so he will be much more comfortable after that. They also cut back a few of his meds because he has had quite a bit of diarrhea lately so we're hoping this will help. He's almost weaned from his steroid and they're hoping to take him off of his med for high blood pressure tomorrow. All of this makes it so much easier on me drawing up his medicines! Jordan's doing really well, he's still up playing and asks for his cape every morning now, although he's not batman anymore, I think he was "Superhero muscle man" yesterday and wanted me to be the bad guy and fight with him. He has more energy than I do!

The other kids are all doing well. Zachary has hit the terrible 2's. He's decided that he doesn't want to take a nap anymore so he gets cranky and starts getting into trouble. Then he gets mad and walks through the kitchen opening and slamming the cupboard doors. Haley and Kyle are doing fine, we registered Haley for cheerleading classes last night and Kyle for self defense. They're 14 week classes, I think they'll enjoy them.

Sunday, August 24, 2003 2:14 PM CDT

Day 89--First I wanted to mention, for anyone who doesn't already know, Tony (my sister's husband) is home from Iraq, safe and sound (although he needs back surgery). He was gone ten months and they're really glad that he got to come home before Christmas. Most of the Ft. Stewart soldiers in Iraq have rotated back home now. If Kevin had stayed in Korea he would be coming home next month, I can't imagine how our family could've gotten through this without him here, although it took 6 months of resubmitting paperwork to make it happen! It's hard to remember to be thankful that the Army reassigned him when they've messed up his pay every time since we've been here so we're coming up short, but they're good at that!

We had a pretty fun weekend. Saturday we took the kids to the Triangle Metro Zoo. It's a small zoo, but that was good because there was hardly anyone there so we knew it was okay for Jordan. They had a good time, especially in the petting barn, although I wasn't real thrilled with the Burmese Python in there, Kyle thought it was cool. After that we stopped at Kevin's Mom's to visit and Haley and Kyle talked her into letting them stay all night, but Jordan and Zach came home with us. It was nice getting out of the house for a change as a family, we haven't done that in awhile and I know the kids missed it, too. Jordan got a little tired, but other than that he was fine. Actually every day we see a little more of the "old" Jordan. Don't tell him I told anyone, I wouldn't want to embarrass him, but today he even had to stand in the corner for writing on the entertainment center with a crayon, and he fought standing in the corner, Kevin had to pick him up and stand him there! That's our Buddy! Of course I wouldn't want to let him know how happy it made us to see that! Vickie

Friday, August 22, 2003 8:00 AM CDT

Day 87--Right now Zachary is running through the house yelling "Wait! Come back here!" for no reason that I can find! I just took Haley and Kyle to school and Jordan's on the couch watching cartoons so I don't know who or what he's yelling at. Weird baby! Last night he was pushing Haley's doll stroller around the living room in circles saying "Out of my way!" over and over again.

Anyway, Jordan had his appt. yesterday and it went really well. His platelets are up to 119, normal range is between 150-400 so this is really good. It seems like it's been forever since I've seen anything "normal" in his labs! He's been getting up playing, he didn't even take a nap yesterday, although he did fall asleep at 7:30 on the couch, but bedtime is 8:00 so that wasn't bad. He finally made friends with some of the neighbor kids and was playing outside with them yesterday evening. Haley and Kyle have been playing with them for a long time, but Jordan hasn't wanted to. He's really starting to act like himself. I was so happy Monday in clinic when I had to tell him to settle down while I was talking to the doctor! This is just a complete turnaround for him, it's wonderful. He even likes to race me places now where before he was constantly asking me to carry him (no easy feat considering he weighs 52 pounds to my 105!). His blood pressure is back down to normal now since they made some changes to his meds on Monday. They dropped his steroid dose (he'll be weaned from that completely soon), dropped his "saltwater" dose, and raised his Enalapril dose (blood pressure med)and that combination seemed to be just what he needed.

So things are going really well with Jordan right now. Hopefully we can find something fun to do with him this weekend, he's starting to ask to go some of the places that he used to enjoy, but can't go to so we need to find something for him that he can do to entertain him. Maybe a playground, we'll see. Vickie

Wednesday, August 20, 2003 8:13 AM CDT

Day 85--We get to stay home from the clinic today, YAY! We went in yesterday morning just to have Jordan's blood pressure checked because it was high Monday so we raised the dose of his Enalapril, but I waited an hour and half and they never did it so I left. Kevin ended up taking him back in the evening and it was kind of high, but they decided that it was probably because it was almost time for his next dose so it was really kind of a waste of time to take him at all. The nurse practitioner that decided all of this always keeps us waiting for a long time, although I know he was busy yesterday because the Dr. that sees patients on Tuesday has alot of patients and that's always a busy clinic day, but part of the problem is also that I have other time issues since I have to pick up Haley and Kyle from school and Zach from daycare. We were discussing when a good time for me to come to clinic was and I told him that if I didn't come in the morning I would have to bring all four kids and he hadn't realized that I had four kids and they were all here. Unless it's for a valid reason like Jordan needing something in his iv or if something's wrong I won't wait 2 or 3 hours just for them to tell me he's fine.

We're also having some problems with Haley and Kyle's school, we're hoping to get them moved into a better one. An 8 year old girl brought an unloaded gun to school the other day in her backpack. They say that they don't think she meant to do any harm, they actually think that the gun may have been stored in a backpack at home and she just pkicked up the wrong one! That's supposed to be comforting?! Besides that, Haley is bringing home work that is too easy for a first grader, let alone a second grader. She brings home games for math and they're good teaching tools, but again the work is too easy, Haley is playing these games with Kyle and he's in kindergarten. I was giving the teacher a chance to see if all of this was just review, but I don't think it is anymore (one of her spelling words this week was "I") so if I can't get her into a school with a gifted program we're going to have to put her in third grade. My landlord knows some people on the school board so she's going to see if she can't make some calls and get ahold of someone that can tell us what we can do. On top of that, Haley's teacher keeps punishing her whole class when a couple of kids are being loud so Haley has had to sit out 10 minutes of recess and she didn't get snack yesterday even though she was behaving. She hasn't sent home a copy of her disciplinary policy, I don't think she's going to.

That's about all that's going on with us. Jordan goes back to clinic tomorrow, but it's time for his meds now so I'll write more when I find out anything new. Vickie

Monday, August 18, 2003 12:49 AM CDT

Day 83--More good news! Jordan continues to stay at "GREATER THAN 99%" DONOR CELLS!! YAY! His labs looked great, he is almost within normal range for his platelets and we finally have his magnesium and sodium under control. Apparently all of this is making him feel great because he gets up and plays now and seems to enjoy the things that he used to again which is decreasing alot of our worry lines! We're really hoping that he will be able to lose the central line that goes into his belly when they do his 100 day studies because it's pretty uncomfortable for him and he doesn't use it anymore. Jordan's asking for snacks so I guess I'd better cut this short. Vickie

Sunday, August 17, 2003 6:51 PM CDT

Day 82--We had a pretty relaxed weekend, we got to stay home from the clinic so we just got some work done around the house and yard. On Friday they found that Jordan has an ear infection, it doesn't bother him any and he doesn't have a fever, but he started an antibiotic for it just to clear it up. I think that made him feel alot better, he's down to taking just one nap a day and he's been up playing. He even played outside with Haley and Kyle for awhile on Saturday until he got too hot. It's really nice to see that.

Poor Haley got stung for the first time by a bumblebee or a yellow jacket, something pretty big from the look of the sore and how long she yelled about it! She's feeling better already and you can barely see where it got her, on her ankle.

Zachary has decided to start potty training. He sat down on his little potty seat after his bath the other night and went all on his own, then he said "I a big boy"! We were so proud!

Jordan goes back to the clinic tomorrow so I'll update soon if there's anything new going on. Vickie

Thursday, August 14, 2003 3:39 PM CDT

Day 79--Today was a pretty frustrating day, but Jordan is doing well. After waiting over two hours in the clinic for someone to tell us his lab results and look him over we finally left and I just called to get the results. I should be used to the wait by now, but sometimes it gets to me and today was one of those days. I wouldn't have left if I wasn't confident that he was doing fine. Even his labs came back okay, just his magnesium was a little low, nothing we can't fix with an over the counter supplement. Anyway, Jordan is doing great, although he still sleeps alot, he reminds me of a newborn, he wakes up for an hour or two to eat then lays back down. His doctor says it's a side effect of the radiation he had before the transplant. Now I'd be happy if I could get Zach to take one nap!

Haley likes school so far, she says her teacher is nice because the work is incredibly easy for her, but I'm hoping that this was just a review week and things will start to get tougher. Kyle went one day this week for a "screening day" so they can see what level the kids are at to split up the classes more evenly. He absolutely loved riding the bus! Neither one of them had any problems making new friends except Haley complained that one girl wanted to play with her all day and wouldn't leave her alone! She's just too independent. And Kyle's first new friend, of course, is a girl, but I'm sure he'll find someone to play Spiderman and Incredible Hulk with him next week. Zach doesn't seem to miss them too much while they're at school, but he follows me around into each room of the house and says "oh, there you are Mommy!" like he was looking for me! He gets alot of attention at daycare, too, he's small for his age and he likes to be hugged on and the director said that every time she checks on him someone's usually snuggling him. He's getting pretty spoiled, but it's hard to resist him!

Our next clinic day is Monday so unless something happens before then I probably will update then. I'm trying to get some new pictures up, but we had some technical problems and now have to reinstall our scanner and camera. We'll try to get it up soon. Vickie

Monday, August 11, 2003 4:26 PM CDT

Day 76--First I would like to say that Miss Heidi has made Jordan's day today by signing his guest book. Many times since we have been here Jordan has said "Mommy, I miss Miss Heidi", she will always be special to Jordan. For those of you who don't know, Miss Heidi is the child life specialist at Memorial Health where Jordan spent ALOT of time in the past two years. Miss Heidi and Miss Betty always knew how to relate to Jordan (who is usually slow to warm up to people) and even when he was neutropenic they would stop by his room and cheer him up. When Jordan's past his one year mark we hope to make it back down to Savannah to visit his friends. I know his misses them.

Our clinic visit today went pretty well, he's doing good, his rash is gone and his temp. is stable. Just a little high blood pressure, but nothing they couldn't control so, YAY, he doesn't have to go back until Thursday if he doesn't have any problems. He's still sleeping alot, I would really like to see him up playing more, but he just doesn't seem to want to, he'd rather just watch tv. I guess as they keep weaning the steroids that were wasting his muscles he'll feel more like playing. He's already walking alot better and climbing into the van and his carseat on his own. Every once in awhile we see glimpses of the "old" Jordan where he gets excited. He was really happy when he had to have a chest x-ray Friday and he got to stand up for it and was even more excited when they gave him Batman stickers. Sometimes it's the little things that make a difference.

Friday, August 8, 2003 9:23 AM CDT

Day 73--Jordan is doing alot better now, his rash is gone and his temperature seems to be staying down. He isn't sleeping quite as much anymore, either, although he still takes more naps than usual. He was up playing some yesterday evening, building with me with his blocks. We'll be leaving soon for his clinic visit today, hopefully they'll tell me he can go back to Monday/Thursday visits.

Haley starts school on Monday, she had her open house last night. Her teacher said they're not sure what they're going to do with her yet. They've thought about putting her in third grade, or maybe just putting her in another group or class for reading, they don't know yet. I guess they're just going to start her out in second grade and see exactly where she's at and go from there. They don't have a gifted/enrichment program at all.

Well, Blues Clues just went off so it's time to leave! I promised Jordan we could watch it this morning. I'll update again if I find out anything new. Vickie

Sunday, August 3, 2003 8:39 PM CDT

Day 68--Jordan's still at home! He's holding onto his sodium, it's actually increasing a little each day. He had to get a blood transfusion yesterday which wasn't fun (2 hours), but really not a big deal. Today we were going to get to stay home if his labs were okay, but he started running a low fever so we ended up back in clinic. We think he's having a graft versus host flare-up (where the donor cells attack his body) because his steroids were weaned just a little too soon or too low because on top of the fever he also has a rash all over his torso and arms. They gave him a bolus dose of steroids and raised his regular dose (after we waited for 4 hours) and that seems to have helped, his rash is already fading. They did take cultures just in case, but the ones they did Tuesday after his last fever all came back clean. Tomorrow is our regular clinic day so they'll follow-up and make sure that was the problem.

The kids all had a good time today, Grandma, Aunt Karen and Aunt Ida all came to visit. Jordan got his cape out just for them! As soon as they left he told me it was time to take it off. I think wrestling with Aunt Ida wore Kyle out, he was asleep as soon as his head hit the pillow. We all had a good time, it was nice to see them.

Friday, August 1, 2003 7:13 PM CDT

Day 66--Jordan's home again, YAY! His sodium is back up to 135 which is on the low end, but still within normal range. The radiologist did see something in his mri, there was a bright spot in the middle in the middle of his brain, but it's probably just an area that got a higher concentration of contrast, but we decided to do a spinal tap just to be sure it wasn't leukemia. The cell count from that came back fine, we won't know the final results until sometime next week. When Jordan was recovering from his spinal tap he was very fussy and emotional from the relaxant they gave him so he just laid in his bed and cried, but when the doctor came in and said "okay, as soon as he can walk he can go home" Jordan pushed the covers back and climbed right out of bed ready to go!

He's back to daily clinic visits for now until they know for sure that his sodium is going to stay up so we're going to be pretty busy this week.

Thursday, July 31, 2003 9:00 PM CDT

Day 65---Jordan's still inpatient, they're saying that if his sodium is up to 129 tomorrow he can go home so we're salting everything!! They're giving him supplements too, which are really gross. It's just pretty much saltwater in a syringe that he has to drink, but he takes it pretty well. He had an okay today anyway, he was running around the halls (the best he can run) and he did some craft projects in the lounge. They didn't see anything abnormal in his MRI which we're very thankful for. The only other thing is this rash he has, we don't know if it's graft versus host or if it's from his platelets being low so we're waiting for his labs to come back. And for some strange reason his blood pressure dropped today, he's been having high blood pressure that he was on medication for. Jordan's just a mystery! Hopefully we'll be out of here tomorrow, we're both ready to be home.

Wednesday, July 30, 2003 8:33 PM CDT

Day 64---I'm very tired tonight so I am going to make this a short update and will fill in the details later! Jordan was admitted back into the PBMTU at Duke last night. I had taken him into the clinic because his temps. were running a little high, 100.7 so they did cultures and gave him a dose of antibiotics as a precaution. When we got home we had a message to go back in to the unit because the clinic was closed and his labs came back "screwy". It turns out that his sodium had come back dangerously low which can cause seizures among other things and when they repeated the test it was still low, although not quite as bad as the first test so they admitted him, gave him fluids and sodium overnight and today. They were going to discharge him today, but they're having a hard time determining what's causing the low sodium because Jordan has a very, very good and diverse appetite so instead they unhooked the iv to see what his body would do without the maintenance fluids and are letting him eat and drink whatever he wants so they can get an idea of his home environment without actually sending him home where they can't monitor him just in case it drops again. They're also going to do an mri tomorrow morning to check his pituitary gland which I guess could be the problem.

On the bright side, he's feeling fine, the foot cramps he's been having are going away (probably a result of the low sodium) and he hasn't had any more high temps, the cultures so far have all been negative, although it's still early to know if they're clean yet. He's been up playing and watching cartoons in his room. Kevin is staying with him tonight so I could get a shower and a good night's sleep to recover from last night, but I'll go back over after I take Haley, Kyle, and Zach to daycare.

Haley, Kyle, and Zachy all went to the doctor today, they're all healthy! Poor Zach got a shot, it was an immunization he was missing, they were out of it at Ft. Stewart, so he's up to date now, but mad!

I'm going to bed now so I'll try to update again soon and let everyone know when Jordan is discharged or whatever's going on there. Vickie

Monday, July 28, 2003 1:01 PM CDT

Day 62--There's not alot going on today which I guess is a good thing! The kids had a pretty good weekend, Grandma came to visit and they played outside with their friends. Jordan's clinic visit was fairly uneventful. They are going to repeat his test for percentage of donor cells, mostly just to ease my mind, on Monday. They're scheduled to do it every so often so this is just a little early because his platelets are dropping, but Dr. Martin thinks that is because he was making them on his own from the donor cells, but that is unusual, they probably did that because it was such a large volume of cells give to Jordan and they were very healthy cells, but now the part of them that make the platelets has "run out" or died which is not cause for concern, so they will just have to give him a transfusion if he gets to a certain point. The fact that he hasn't needed transfusions or GCSF (to stimulate white cell growth) in so long is extremely unusual this early. Most patients need that until close to day 100. Dr. Martin does not expect the test to come back any differently than last time which was "greater than 99%" donor.

Monday, July 21, 2003 1:47 PM CDT

Day 55--Jordan continues to amaze his Dr. Martin. Today he said it was like Jordan was at the six month mark instead of Day 55! They dropped him down to two clinic days a week and switched his iv med to oral so now he only has one iv push which is very easy to give, everything else is oral. His nutrition is starting to get up where it should be, and it ought to considering that he's eating us out of house and home!! He's up to 52 pounds! It's all from the steroids, he will drop down some when he's completely weaned, they wean him a little every Monday, I think the plan is to be finished by day 100.

Haley and Kyle are getting ready for school to start again, August 11th, although I don't think they're as excited about it as I am! We went school shopping Saturday, just me, Haley and Kyle and they had alot of fun. Mostly because they got to ride the carousel in the mall a couple times and we did take a peek in KB Toys! Zach is feeling happier about daycare, he doesn't try to run out the door when we go in anymore! He's very clingy at night now, though, he stays up until about 10:30 so he can snuggle with me for awhile and he follows me around hanging off my legs while I cook dinner. Poor kid, daycare must've traumatized him!

Wednesday, July 16, 2003 5:46 PM CDT

Day 50--We all had a good day today. Haley and Kyle started their new daycare on a field trip to Jordan Lake. Buddy was out of the clinic this morning by 11:00am!! I think that's a record for us! Dr. Martin and Ms. Ann are quickly becoming Jordan's best buddies with all the good things they have to tell him, today Dr. Martin said that if he continues to do this well they'll be able to take one of his central lines out (the one on his belly) and Jordan was really excited about that. He is having some trouble with his muscles atrophying from the steroids, he has a really hard time going up stairs, but when he got home today he was up playing (he usually just wants to watch tv so that was great) and we went to a park after we picked everyone up from daycare. He played on the swings and climbed steps to the slides, got all kinds of exercise which they said would be good for his muscles. I'm glad we finally found some parks to take the kids to. It was great to see Jordan up and playing for a change!

Monday, July 14, 2003 6:46 PM CDT

Day 48--GOOD NEWS!!! Jordan has "Greater than 99%" donor cells, they didn't find any of his original cells, YAY! We're so excited! His doctor said he's doing really well, especially since he's been complaining all week that his belly hurts, but he still has a great appetite. And he made Jordan's day, Jordan's been craving bananas and watermelon and he said today that Jordan could have them, we just have to peel them and there's a certain part of the watermelon he can have, Jordan was thrilled. He also said that as long as there aren't any changes for the worse Jordan is going to Monday, Wednesday, Friday clinic visits. He still has blood in his stools, but they started him on a new oral medicine that we're hoping will take care of it, his cultures came back negative, but they aren't real accurate so they're starting this as a precaution.

That's what's going on now, they found out last week, but the message got lost somewhere, we're just glad it was good news. Vickie

Friday, July 11, 2003 5:29 PM CDT

Day 45--Well, Jordan was supposed to cut down on his clinic visits now that he's made it this far, but we don't know if he will be able to yet. Wednesday while he was in clinic he had blood in his stools. They gave him a blood transfusion and a boost of cyclosporine and steroids, Dr. Martin thinks he's having GVHD because there was some confusion about how much cyclosporine was in his blood, they initially thought his levels were too high so he missed three doses and that left him vulnerable to GVHD. After doing some more tests they've determined that the levels in his blood were actually very low so they're raising his dose and he's already improving. We're going to try just dropping off his blood in the morning then calling the clinic to see if he needs to come in based on the results of that so hopefully we'll get to stay home this weekend. Jordan gets so bored waiting in the exam rooms, he was there for 4 hours Wed. before they saw him and I'm running out of ways to entertain him.

Everyone else is still doing fine, they're starting in a new daycare next week, a center (I didn't like the last one they were in, it was in someone's home). Jordan taught Zachy a knock-knock joke. "knock, knock" "Who's there?" "nobody" "nobody who?" "nobody sunglasses". He made it up himself! And Haley taught Zachy to count to 6, he does really well.

We're still waiting to hear the results of that test for donor cells, we'll see! Vickie

Tuesday, July 8, 2003 4:25 PM CDT

Day 42--We don't have any news yet, they're telling us now that it could take another week since Jordan's stem cells were from another boy (we think), I guess that makes it confusing, I don't know, this is new to us. He' still doing well, though. He has tremors from the cyclosporine he's on, the levels get a little high in his bloodstream and he tells us "my hands are moving by themselves!", but that's normal and it's barely noticeable. We had a nice 4th of July, I think it was good for Jordan to get out of the house, he's turning into a couch potato! We tried taking him for a drive yesterday out around Falls Lake to see the boats, but I guess we must've bored them, Jordan and Zach both went to sleep and Haley got carsick!

That's all that's going on for now, our next goal is finding out Jordan's percentage of donor cells and finding the office for the Department of Education so we can enroll Haley and Kyle in school, it's getting to be that time again, but when I tried to do it yesterday I got miserably lost!! I'll write again if I find out anything new. Vickie

Tuesday, July 1, 2003 9:32 PM CDT

Day 35--Just a quick note to let everyone know that there are new pictures in the photo album, per Jennifer's request! There's nothing new here, but I will write more as soon as we get the results back telling us what percentage of his cells are donor. That may not be until as late as next Monday or Tuesday because of the holiday. Until then, enjoy the pictures! Vickie

Sunday, June 29, 2003 4:50 PM CDT

Day 33--Jordan continues to do really well, surprising everyone. They had to take him off of GCSF (stimulates white blood cell growth) because his white count was getting TOO high, it used to be daily, but now he will just take it when he gets too low. He also stopped tpn (nutrition in his iv) because he's eating well. He's down to just two iv meds now and 6 oral. He's had some trouble with high blood pressure which they expected, but they've been able to control it with meds. He's still going to the clinic every day for a couple more weeks at least. Monday they are going to do a test to find out what percentage of his cells are donor, but we won't get the results until Thursday or Friday. He hasn't had to get any blood transfusions since he was discharged and he hasn't gotten platelets in over a week.
Haley, Kyle, and Zach are doing fine. Haley and Kyle aren't real happy with going to daycare, but they'll get used to it. They would just rather stay home with me. I've been picking them up around 3 or 4 every day so I think it'll keep them close to a school schedule since the schools here get out at 3:30.
Thank-you everyone who has signed the guest book, I really do read the entries to Jordan, he enjoys them (although he still insists his Pooh slippers aren't alive Aunt Karen).

Thursday, June 19, 2003 10:01 PM CDT

Day 23--Jordan's Home!!! He walked out of 5200 this afternoon with confetti still stuck to his shirt and behind his ears. Things were kind of hectic at home this evening, but I'm sure we'll get settled into a routine with his meds soon. Jordan is more self-conscious this time, he didn't want to leave the hospital with his iv hooked up in a backpack because he didn't know what Haley and Kyle would say about it, but when they arrived to pick him up he explained to them that it was his iv and they were so nonchalant about it that he was okay with it after that. He told them that he has to wear a mask and they just said "oh, okay", they really put him at ease, I was proud of them.

Monday, June 16, 2003 2:55 PM CDT

Day 20--Jordan's looking at going home this week! They're planning on Thursday right now, but we'll see how he does. He'll have to go to the clinic every day for awhile and he'll still be on iv meds at home and of course he'll have to avoid being around alot of people for a long time, but it'll still be good to have him home.
We've gotten pretty settled in at our new house now, we're just working on replacing the furniture the movers destroyed!! We've got the most important piece, though, Zach's bed. Just in time for his birthday today, it's hard to believe he's two already.

Thursday, June 12, 2003 3:25 PM CDT

Day 15--Counts are still going up! Jordan's doing well, his rashes are pretty much gone and he feels pretty good. He's not very cooperative, I don't know if it's just his attitude, but I'd like to think the doctor's right about it being the steroids! Right now the plan is for him to go home next week, but we'll have to see how he's doing to know for sure.
Everything else is going okay. We're getting settled, we've already had a backyard full of kids so I guess the kids are getting comfortable. There are quite a few kids in the neighborhood for them to play with and it's a quiet street, we're at the end of a dead end.
Well, I'm going to make this a short one as not too much is going on right now, everything's looking good.

Sunday, June 8, 2003 9:05 PM CDT

Day 12--Jordan's definitely making cells! His white count is up to .5 which is very low, of course, but it's going up from less than .1 so it's great!! We check his printouts every day just to see where he is. His pain is starting to go away, it's being replaced by an itchy rash, but that's been pretty easy to control with lotion and Benadryl, except his pull-up rash, that bothers him, but overall he's doing well.
We celebrated Haley's birthday by seeing "Finding Nemo" at the theater Saturday. We had alot of excitement, Kyle lost his first tooth and Haley lost the second of her two front teeth, that's going to be a hot topic for them for weeks to come! Haley looks cute with her teeth gone, though.
We also finally got moved into our house, of course by moved in I don't mean unpacked, it's still an obstacle course, but we're making progress. It's very surprising to me how dark it gets out there at night after living on post for four years with all the streetlights and traffic, and very different night sounds. It used to be I never thought I'd get used to the sound of night fire at the ranges, now the crickets are keeping me awake!

Friday, June 6, 2003 9:28 AM CDT

Day 10-Jordan is definitely showing signs of engraftment!! He has a white count, but it's only .2 so it could still fluctuate back down, but it's a start, we're excited. It's pretty early still, but his doctor said he would'nt be too surprised because Jordan's transplant had alot of cells in it. As Dr. Al-Khalil is fond of saying, Jordan's writing his own book. He isn't feeling too bad, during the day he still wants to run the hall, ride the tricycles and play basketball, but he has some rough nights with a sore throat and still having some fevers. Everything's looking good, none of his problems are abnormal, they were all expected and there's nothing serious. His nurse yesterday kept peeking in on him, she said she felt bad because she doesn't spend that much time in here since he's doing so well, but the night shift probably gets tired of us!
We are moved into our house, but we're having wiring problems with our phone jacks so if I've given you our phone number it won't work yet, we're hoping to get that taken care of today. The kids are excited, Kyle is starting to read and he wanted to open every box the movers brought in that was marked "toys" (which was probably 3/4 of the boxes considering how many toys they have!).
We've had alot of help since we've been here. The MEPS station where Kevin's working has been great. Their FRG leader called to see if we needed anything (and I didn't even think they would have an FRG) and a Lieutenant's wife, Bonny, has been very generous by watching the kids for an affordable amount. Jordan also appreciates the toys that Grandma and Aunt Karen brought up for him (we got the bop bag blown up, he loves it) and thank-you, Nurse Blenda from Memorial for the truck set you sent with him, he really likes it and it's perfect for the hospital table. Thank-you everyone for thinking of all of us.

Tuesday, June 3, 2003 1:23 PM CDT

Today is Day 7, Jordan is still feeling okay. He has a strep infection so he had a fever last night and this morning, but the fever's gone now and he's feeling good, the antibiotics are working.
Transportation is delivering our stuff on Thursday, YAY! We'll finally have a house and it's only 15 minutes away from the hospital (Ritha's is over an hour) so that'll be nice. If anyone wants our new address and phone number I'll be happy to get it to you, I'm not real comfortable putting it on the website.
I'm still working on fixing the address on here so I'll add this again: the "4700 Waters Ave." is incorrect. It should be "Erwin Rd." for the hospital. Don't forget any mail should be marked "patient mail" on the outside somewhere, too.
That's all for now, I need to go negotiate a game dispute between Jordan and another little boy! They can't agree on what they want to play!

Saturday, May 31, 2003 9:48 PM CDT

I just wanted to write a quick note, first Jordan is doing well, he's where he should be and feels pretty good. He has started speech therapy and they have a preschool teacher coming to work with him, too. Haley, Kyle and Zach are good, too. Haley's birthday is Friday so we're celebrating by going to see "Finding Nemo". We're still at Ritha's house (Kevin's Mom's) until one day this week, but we have our phone hooked up so that's a start. The kids have really enjoyed Ritha's yard, even helping pull weeds and they made friends with the neighbor's granddaughter who's about Haley's age.
I'm having a problem with changing the home page on here to update it for Duke, the address should say "Erwin Rd." with no number instead of "4700 Waters Ave.", but it won't let me delete it. I'll keep trying, they changed servers recently so that may be the problem.

Wednesday, May 28, 2003 10:50 AM CDT

Day 1--- Jordan had his transplant yesterday, he had some problems during the transplant, but he's doing fine now, he was okay once the infusion was over. Now we have to wait for him to grow white blood cells which should start between day 15 to 30.
We should be moving into our new house this weekend, but transportation won't be able to deliver our furniture until next week. Kevin's mom has been very generous letting Kevin and the kids stay with her while we wait, so don't be surprised if Ritha has pulled out all of her hair by the next time you see her, she has been doing some babysitting!!

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Jordan typed "I miss you, come and visit me. I'm almost bigger than my dad." that was his translation.

If anyone does any online shopping you should go through www.igive.com and designate the Duke Pediatric Bone Marrow and Stem Cell Transplant Family Support Program and for every purchase you make they will make a donation to them. They're affiliated with alot of common sites, like Amazon and Wal-mart.

Sunday, May 25, 2003 12:04 AM CDT

It's day -1, the transplant will be Tuesdaiy. We're all settled in now at the hospital. Jordan's on his second day of chemo. A drug they gave last night hit him really hard, ATG, he was pretty sick and in alot of pain, but he's over it today and they said he probably won't react like that again. He's up and around playing now. I can't use my cell phone in here, but out hospital phone number is: 1-919-681-5201.
His address is: Jordan Moyer
5201 Duke University Medical Center
Durham, NC 27710-0001

Please make sure any mail says "Patient" on the outside of it somewhere. Also, cards and gifts are welcome, but please no food, flowers or pets (duh!). Actually, if anyone has a chance, Jordan would like some Batman pictures for his room if anyone can find some to print online or something he would appreciate it! Or any Nickelodean characters.

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Jordan's helping me write this today, he says Hi and that we're getting ready to move into a new house in Durham. (he's pretty excited about that)
I will try to write more later when we get settled into our new house and get our computer set up.

Monday, May 19, 2003 4:49 PM CDT

It's day -8, counting down to his transplant. Jordan had his first dose of radiation today. Basically he laid on a stretcher for 15 minutes watching a Rescue Heroes video and had no idea anything was being done to him except that he had to lay still. He's feeling fine, his appetites a little light, but he isn't a big eater anyway, not that you can tell by looking at him. He will have to be admitted Friday, if there are no problems before then.
Kevin and the kids came down this past weekend and we looked at houses. We found a couple of possibilities so it doesn't look like it'll be too difficult to find one, just to find time to look at them. Kevin will be down sometime next week after housing clears him. We will be able to just take Haley out of school early, they said they would give us her grades since it's so close to the end of the year. Kyle will already be finished. They had a great time while they were here, we all went to Chuck E. Cheese and they were ready to go back the next day.

Thursday, May 15, 2003 3:04 PM CDT

Jordan and I are having a quiet day in our apt. today after a pretty long week. He has one appt. tomorrow then he gets another break for the weekend. He is feeling fine, he has a little cold, but we think it's allergies, we'll find out for sure when his cultures come back, there's no fever with it so that's a good sign. So far all of his tests have come back normal, he's very healthy which is good for the transplant. If there are enough beds they're looking at starting radiation on Monday and admitting him on the 23rd.
Kevin is doing okay at home, just a little stressed! He finally got his orders so he's working on getting transportation arranged to pack us up and clearing housing. Hopefully it won't be too difficult to find a place up here (or expensive), I'd like to have the kids settled as soon as we can so we can find daycare and not upset them too much.

Saturday, May 10, 2003 7:13 PM CDT

We got a break today, Jordan didn't have anything at the hospital so we went to the Sarah P. Duke gardens. They were really beautiful and we had a nice, long walk. Jordan loved feeding the ducks in the pond, they were practically eating out of the kids' hands. He has more consultations next week then on the 19th he's scheduled to start radiation. After that it'll only be about three days of radiation out-patient before he's admitted because he won't have much of an immune system anymore. We've been trying to get out and find things to do around town so he doesn't get too sick of doctor's appts. for now. And it helps when Grandma visits, too. We should have new pictures to post sometime this week, as soon as we get them from my sister so be sure to check back here next weekend.

Tuesday, May 6, 2003 6:35 PM CDT

We are settled into an apt. in Durham now. Jordan had appts. all day today, nothing painful, though. He's pretty worn out now. I tried to get him outside to play and walk around as much as I could, there isn't alot to do in the waiting areas here so it's not easy to keep him entertained for the long waits, I'll have to bring more toys tomorrow. He's feeling fine, no fevers or anything, and he had a nice day going out to dinner with Grandma and Aunt Karen (and I did, too, it's nice to see a familiar face outside the hospital). I'll get an itinerary tomorrow so we'll know after that when he'll start radiation, we're getting anxious to start since it's been 7 weeks since he's had any chemo (except one dose in a spinal tap) and we're afraid the leukemia will come back before they do the transplant. He has to be in remission for that.

Saturday, May 3, 2003 12:52 AM CDT

Jordan's out of the hospital for now, he's home on three iv antibiotics, and they pulled out one of his lines. The new plan is that we're going to head up to see his doctor Monday morning so he can check him out and if everything's okay we'll leave from there for Duke. I'm not sure right now if he's going to be inpatient or out when he gets there, hopefully we'll find that out later today.
As for Kevin's reassignment: we're waiting for his orders to get here from Korea, should just be a couple more days, then all he'll have to do is clear housing, get transportation to come pick up our stuff. We were hoping to get the kids out of school before we leave, but Haley goes through the first week of June so I don't think we'll make it. They put her in to be tested for the gifted program for next year so we're hoping to get that done before we move to so it'll transfer if they decide to do it. Kyle will be out on the 21st and since it's not required that he goes anyway it won't be a big deal if he doesn't finish.

Sunday, April 27, 2003 11:38 AM CDT

Just a quick update...We have to put off going to Duke for probably another week, Jordan's new line is infected. They think he still had an infection in his blood from the last line, that they put the new line in too soon. I don't know. They have him on three big antibiotics now so we're hoping that'll clear it up so they won't have to pull this line, he doesn't have many veins left to put another line in. He feels fine at least, he doesn't have any symptoms, no fever or anything, he's been up playing. We are still getting ready to move, so at least I'll still be home to help out with that.

Thursday, April 24, 2003 4:15 PM CDT

I finally have some concrete information to put on here! Jordan and I are leaving for NC early Sunday morning, he starts his appts. on Monday. He has an appt. every weekday, at first they will just be doing the work-up, making sure he is in good health. They will start radiation May 5 and are planning on admitting him May 9th. Of course all of this is if he stays healthy, has no complications or infections. Right now he is doing fine, his hair has even started growing back, it's really soft, but he gets mad when I rub his head! It's strange to actually have all healthy kids for a change!
The Army has told us that if Kevin filled out another paper they needed they would approve his compassionate reassignment, so he did that and we're just waiting for the definite answer. The assignment will be to the MEPS station in Raleigh, which would be wonderful. The only downside is that we will have to look for a place to live (if we had been assigned to Ft. Bragg we would have housing), but that's one thing that I trust Kevin's judgment on. He will still have to clear housing here and we are having the Army move us this time to save some headaches so it will probably be a couple weeks into May before he comes up with Haley, Kyle, and Zach. Kyle's pre-k teachers almost cried when we told them we were moving. We will also have to look for daycare immediately, but for the most part the kids seem pretty confident about moving, I don't think they liked the idea of our family being split up any more than Kevin and I did.
I don't know how my internet access will be up there, I'm taking my laptop so we'll see, but this may be the last update for awhile. Vickie

Wednesday, April 16, 2003 10:55 AM CDT

We finally got a date for Duke: They want him up there on April 27th, they're going to start total body radiation on the 28th (his fourth birthday, poor kid!). He has I think 5 days of radiation, then 1 day of chemo., then on day 7 they do the transplant, which is just an iv drip of the stem cells from when Zach was born. Then we will be waiting for him to start growing white blood cells (engraftment). They will have to watch him for infections which are likely and for graft versus host disease which is where the new immune system rejects his body and starts attacking it. He had a new central line put in yesterday, but the surgeon couldn't get a triple lumen in so he just put in a double so Friday he has to have surgery again to have a single put in because he needs three lines for iv access. They're going to do a spinal tap at the same time which is good because he'll be asleep for it, usually he's not and it's very painful.
We still don't have any news from the Army on their decision, we'll see. The last we heard they wanted to send Kevin to Ft. Bragg because it would be cheaper for them, but there's still a chance they'll send him back to Korea. I know the kids would like moving up there, being so close to Grandma and Aunt Karen, and they'd still be able to see me on the weekends.

Thursday, April 10, 2003 12:14 AM CDT

The trip to Duke went well, although they weren't expecting us (miscommunications), they were really nice and saw him anyway. The campus is huge! Jordan was really impressed because they have outdoor play areas for patients. It's going to take awhile for me to find my way around. The doctor was nice and very optimistic. We don't know when Jordan will go yet, he has some procedures that he has to do first and they have to make sure he's in remission. The Army has decided that it may be cheaper for them to reassign Kevin to Ft. Bragg than to Ft. Stewart because we are entitled to TDY pay when we were up there on top of what he's already paid so we may be moving soon, we'll see. If that's the case, then the kids will stay with Kevin. We'll try to keep everyone updated on what they decide.

Thursday, March 27, 2003 9:03 AM CST

We finally have everyone healthy again, YAY! Even Zachary is back to normal after his weekend in the hospital. Jordan is doing good, his counts are up and he's just going in for check-ups right now. On April 7th he has a consult at Duke for a final approval with our insurance company. They have approved the transplant for his diagnosis, now they have to approve it on the basis of our ability to take care of him post-transplant, from what I understand. After the consult he will come back home for a little while to finish his preparations for the transplant (he needs an EKG, dentist appt., eye appt., just stuff like that to see if the chemo has done any damage). Everything's starting to come together. Haley and Kyle are very excited about the trip to NC next weekend to see Grandma and Aunt Karen and they are looking forward to going to OH, but we keep having to remind Kyle that it's no longer snowing there, much anyway!

Friday, March 21, 2003 9:23 PM CST

We finally have a date for Duke!! April 7th is when he needs to be there for his initial consultation. Kevin and I are changing our plans for the kids, I think I am going to have to send Haley, Kyle, and Zach up to Ohio while I am at Duke. With the war in Iraq now I don't feel comfortable leaving them on post, I don't think they'll be safe. Right now things are pretty tense for the families left here. Anyway, Jordan is doing well, his white counts are up where they should be. Haley and Kyle are good, also. Poor Zachy is sick again, pinkeye and an ear infection. He is really miserable, but hopefully his antibiotics will kick in tomorrow.

Friday, March 14, 2003 1:37 PM CST

Last Sunday Jordan went back into the hospital with a fever and low counts. He was feeling pretty miserable for a couple of days, he has allergies on top of a cold and the pollen is making it hard for him, but he's already starting to bounce back. His fever is gone and now we're just waiting for his counts to go back up so he can come back home. We're having a hard time with the unit Kevin's attached to again, they keep putting Kevin on details with odd hours so we're having a hard time getting daycare for the kids late at night, I don't know if we're going to be able to follow our original plans for him staying here with the kids while Jordan and I go to Duke. If anyone has any ideas we would be more than happy to hear them!! The Army just doesn't want to cooperate with us this time. We'll figure something out, though.

Wednesday, March 5, 2003 7:55 PM CST

Jordan's back home now, he finished the last of his chemo last night. We'll be getting ready to go to Duke in the next few weeks. Haley and Kyle are going to be starting t-ball soon, they're really excited. Oh, and we'll be planning an early birthday party for Jordan since he should be at Duke on his birthday (April 28th) we're going to try to have one the beginning of April or end of March. It's hard to believe he'll be 4 already!

Wednesday, March 5, 2003 7:53 PM CST

Jordan's back home now, he finished his chemo. last night, that's the last of it. Now he has a few weeks before he goes to Duke for the transplant. Haley and Kyle are doing good, they're getting ready to start t-ball in a couple weeks, they're both really excited about that.

Friday, February 28, 2003 4:01 PM CST

Jordan's counts were high enough today so he went back in for more chemo. He should only be in for 5 or 6 days, but he will have to have shots to raise is counts when he comes home. He won't be in isolation or anything again this time because his counts are up so he'll be able to go to the playroom. He gets really bored when he can't.

Tuesday, February 25, 2003 7:40 AM CST

We finally got news about Kevin's reassignment, it was approved so now he's assigned to Ft. Stewart, but he hasn't gotten his orders yet, so we don't know what unit or anything. Jordan's doing good, he goes back in the hospital Friday for more chemo if his counts are high enough. After that they said it should be 3 to 4 weeks before he goes to Duke, but I don't know, they've been saying that for awhile! I guess we'll see.

Friday, February 14, 2003 10:41 PM CST

I guess we knew it would happen, Jordan's temp went up on Monday so he's spent the week in the hospital. We were really surprised when we took him in to find out that he didn't have any white blood cells. It's a little more nerve-wracking that his doctor was surprised also, but he put him in isolation and got him on some good antibiotics and a shot every day again to raise his counts and now he's doing better. His cold is almost gone and his temperatures down, counts are up some, they're hoping to send him back home tomorrow. This chemo drug he had last time wasn't supposed to lower his counts, but it isn't taking them nearly as long to rebound this time. Along with that Haley and Kyle were out of school most of the week with fevers and Kyle has a little bit of an ear infection, I guess we just couldn't avoid it, but everyone's doing better now, just a few sniffles here and there. Kevin and I are a little run down from taking care of sick kids all week so we'll be glad when this passes!

Friday, February 7, 2003 2:46 PM CST

Jordan's still doing well. His counts are down a little, but that was expected and he can still be home because his body is making white blood cells. He's scheduled to start his next round of chemo in 3 weeks if his counts are high enough so now we have to keep him fever-free for that time and he'll be able to stay home. I don't know how easy that will be right now, though, Kyle and Zach have ear infections and Zach has pink eye. Kevin's got a cold, but of course he thinks he's dying. Haley and I are still okay, though and hopefully we can keep it from Jordan. It sure is nice to be home!

Wednesday, February 5, 2003 11:16 PM CST

Jordan is back home again after another round of chemo. It was really easy for him, his only side effect was a little rash on his belly (besides the effects on his blood, of course). He didn't have to be in isolation this time so his stay wasn't too bad anyway, he got to go to the playroom and he kept the child life specialists busy playing! Unfortunately Zachy isn't feeling very well now, we got home with Jordan and had to take Zach to the ER, but he's on antibiotics and should be feeling better tomorrow. He has pinkeye and ear infections. He always picks them up when he's in daycare. Haley and Kyle are doing well, they're really glad to have Jordan home and luckily they haven't picked up any of Zachy's ailments!

Saturday, February 1, 2003 8:15 AM CST

Jordan started his chemo last night, there was a one day delay because the Dr. didn't realize that the hospital had to order it. The drug he's on doesn't attack the bone marrow, just the monocytes, so he won't have to be in isolation and if everything goes okay he'll get to come home probably on Wednesday. He'll be happy, too, because he won't need any shots to bring his counts back up since they won't be suppressed. Of course the chemo isn't bringing him down any, he's running up and down the halls with his cape on, he's Batman right now.

Wednesday, January 29, 2003 at 03:43 PM (CST)

We have photos in our photo album now, unfortunately we can only put in three at a time so we'll have to add new ones often.

Monday, January 27, 2003 at 06:07 PM (CST)

Jordan went back to the doctor today and they said he was done with his shots for now, YAY! His white blood cell counts are where they are supposed to be, everything looks good. Thursday he is going back in for more chemo, but it will be less intensive this time so he shouldn't be inpatient for as long.
Haley got her report card, A honor roll, we're so proud of her. And Kyle is still doing well in school, although he still tends to get upset in the mornings when we drop him off.

Friday, January 24, 2003 at 11:25 AM (CST)

Jordan is still at home and doing well. All of the kids are a little stir crazy with it being too cold to go outside, but Haley has a basketball game to cheer at tonight so she'll burn off a little energy.
We got a little bit of good news today, Kevin is finally attached to a company here, but it's temporary while we're waiting for them to decide if they will reassign him here. Once he signs in there he won't be AWOL anymore, YAY!

Thursday, January 23, 2003 at 06:54 AM (CST)

We created this page so we could keep everyone updated on how Jordan and the other kids are doing.
Right now Jordan is at home, his WBC counts are still pretty low so we have to be careful, but he was inpatient for 3 weeks so it's good to finally be home and sleep in his own bed.
We don't know what's coming next yet. It's either more, less intense chemo, or they will go ahead with the cord blood transplant. If Kevin doesn't get sent back to Korea he will probably stay here in GA with Haley, Kyle and Zach while I go to Duke (NC) with Jordan. That way Haley and Kyle can stay in their schools. That's the plan right now anyway, we have to wait and see what happens with Kevin's reassignment, it's not going too well right now.

Thursday, January 23, 2003 at 06:30 AM (CST)

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