nothing real blogworthy happened today.

Actually Julia helped us out again by watching Elsie so I could go to work. That was very blogworthy. Thanks Julia. Thanks everyone who has helped me with that, I really appreciate it. I'm a sarcastic blogger, but I'm serious about this one. We have had lots of help from neighbors, friends and family and we are really grateful. Julia and Elsie went to a make-up party of some kind - Mary Kay? Elsie looked beautiful when I picked her up. It was probably her most exciting day in a while. She likes to put on make-up and play dress-up. She is constantly asking me if she can put on mom's liptick or whatever. Sorry Stac, I've caved a few times. There is a good chance some of your stuff may be ruined or missing in action.

4 more weeks!

Hopefully April will go well and Chloe will finally be coming home at the end of the month. I think Stacie and Chloe are getting a bit anxious to come home, and we're anxious for them too. On the way home tonight Elsie asked me when we'll be a big family again with a mom and everything. She's a cutie.


Of course I couldn't let another weekend go by without posting some pictures. Rhen gets bigger every week. It's fun to hang out with him and try and get him to laugh. I usually end up laughing more than he does because the girls all love him so much they smother him every second he is awake.

a hard goodbye

We got to spend an enjoyable weekend together. Grandma and Grandpa England came to give me and Jake a needed time together. We haven't been without the kids 8 months so it was fun to be together. Thanks G and G! We also had a visit from Kelly and Andy, Kinsey, and Spence and Tal. Although everyone wasn't able to come inside it really lifted my spirits to see them. But it always ends too soon. We had a yummy homemade sunday meal that Kelly made and then it was time for them to go. The girls really wanted us to switch. Me come home and Jake stay with Chloe. They just really miss the parent that isn't there with them all the time. We will have to wait until the next week to switch. It gets hard me and chloe together 24/7, and having to stick around here all day so it was hard to say goodbye.

Congrats to all our friends who have had their babies this weekend!!

who has more hair?

Chloe was holding Rhen this morning and I just loved the view I had.
They were both watching a cartoon and they have almost the same amount of hair!
Jake came late last night cause they all just missed Rhen so much. He is a pretty missable guy! Jake was making him laugh this morning and Addie and Elsie were loving all the new sounds he can make. He really is the coolest boy we've ever had! I worry so much that I am just ruining his life with the stress and trying to figure out his sleep patterns (have never had a crappy napper) but Jake reassures me that I need to take er easy.

I'm gunna wash that soap right outta my hair

None of us really understand, unless you have acually gone through it, how hard it is to loose your hair, and to loose it twice! Sweet chloe knows how hard it is. Yesterday was the day to change her dressing , so that is the day she gets to have a bath. I went in to tell her to get out. She looked up at me with her cute smile with the bottle of shampoo in her hands. She said, "I want to wash my hair". I told her," you go ahead, you have some hair to wash." She was so proud that she had hair to wash. She even put some conditioner in it. Now chloe doesn't look in the mirror when she doesn't have hair, she avoids it at all costs. But she got out of the bathtube and looked and said,"I do have hair coming in!"

No tag team, gets hard

Jake poor Jake was up all night with Elsie throwing up every 15 minutes. I called this morning to say good day to addie before she went off to school, to find that Jake had a worse night than I did. We don't know what is was from and she hasn't thrown up since, but poor Jake had no one to tag team this situation. He is really tired. We need to get that girl to stop sucking her fingers!

Chloe is great today, nothing new to say about her. Me, I am just scrapbooking to keep me busy. We made it an effort to turn off the TV most of the day today and do other things, that has been good. It is just hard, there is not really much to do and what we have to do gets old.

Today is day +72, we're getting close!

Third LP

Last night we were watching America's Funniest Videos and they were talking about the next clips were going to be accompanied by the band spinal tap, chloe perked up and said "I have had lots of spinal taps!" It was cute.
Her clinic apt was just the same ol same ol. The LP went fine, only one more to go! They changed her fluids to the day since I told them that she prayed the other night that she wouldn't have go to the bathroom at night as much, I asked her how many times she goes at night and she said about 6 times. No wonder why she was so emotional the past few days. After her prayer the next day I asked her how many times she went and she said 4. I told the doctors and they will switch them during the day and for less time. I still need to get her to drink more during the day. Rhen is doing good. I switched him from soy formula to just lactose free formula, he seems to being doing great, and his spit up is way less.

I have eaten too many girls scout cookies! Those chocolate mint cookies are dangerous.

Address

Just to let you know, if you want to send chloe a letter to say hi or whatever, the address we are at for the next 4 weeks is [email us] I am pretty sure that is the zip code. She would think that was pretty cool.

Footprints in the sand

The footprints in the sand poem never meant more to me than is has through my experience these past 6 months. Cancer takes all the strength you have and makes realize you can handle more than you ever thought you could. In the past few months when it was so hard I couldn't think I could go on anymore the strength of Him carrying me was felt. Because when I think of how we do this day after, I am sure of how we do it. We are carried.
Today is a beautiful day it is 65 degrees! Chloe feels good and is eating better today. Her hair is coming in more and more each day. Tommorow is her third LP and I really didn't mind them pre transplant but now I have to give her medicine every six hours after it is done for 2 days. I just got done giving her anitbiotics every 8 hours but starting wednesday I give her pills every 6 hours. Sometimes I feel like aughhh! And now that is when the earlier statement is evident again.

Easter is Excellent.

It was such a nice day today we had to get out for a minute just to take a couple of pictures of the kids in their easter clothes. Somehow Stacie talked me into going to the mall last week and buying Easter dresses for Addie and Elsie (Stacie already bought something for Chloe and Rhen). Shopping is high on my list of least favorite activities and it was way too busy at the Gateway. But anything for my wife.

a highlight of my week.

After a week of not seeing this kid, it's always fun when I get here to releive Stac of her motherly duties for a bit. Rhen always looks me right in the eyes as I feed him and is fixated the whole time. I guess I should check and see if I have something on my face, but i like to look at him too. Made me miss the old days when our girls were tiny. They grow way too fast.

Today looked really nice outside, but we were deceived. We thought about trying to find a deserted park to fly a kite or something, but it's still pretty cold. Too cold for Chlo anyway so I guess we'll paint some eggs or something.

Staying in

I have made the decision to stay at the aptartment and not go places with Chloe. After being couped up in the hospital we both wanted to go places, but after the last hospital visit we are staying in more, which is good and bad. I am going a little crazy but at least hopefully we are preventing any more hospital stays. It has been so beautiful here and I thought about going on a walk cause the fresh air would do chloe good, but where I am, isn't that safe. I am a little scared. A lot of the scary stories I hear on the news are right down the street from where I am. So I am looking forward to Jake coming down to give me a break. We will be staying in for easter, but we are use to it anyway it is hard telling your kids that every holiday will be different for a while. We have been doing this for so long, but you still don't get use to telling them we can't go to any easter hunts.
We wish everyone a happy easter!

I'm a Momma's Boy

Yep, it's official - I'm a lot like my mom. My mom knows all kinds of interesting facts on just about everything. The reason why is if something sounds interesting to her she google's it, reads a book or drives to the place to see what the fascination is and listens to talk radio all the way there to learn more interesting things.

Spence started an NCAA bracket deal at work. I know absolutely nothing about college basketball because i just don't follow sports. Last year to fill my bracket out i chose teams alphabetically which was a lousy way to chose teams. This year I decided to chose Oral Roberts to win it all just because it sounded like a funny name for a university. They lost their game in the first round so i'm out already. As it turns out, on the chart there are numbers that indicate the teams placement and wins and losses for the season. That should have been an indication to me which teams I should select but I just never paid attention. This makes me look like a real dork for any guys reading this but I don't care. In my disappointment I googled Oral Roberts. Turns out the school was started in 1963 or so by a guy named Granville Oral Roberts who was a televangelist. Students were required to sign an honor code that they would not drink, smoke, dance, party and whatnot. Apparently Mr. Oral Roberts was kind of a big deal in Oklahoma and started a big hospital and was determined to find a cure for cancer (thanks wikipedia).

So Mom, thanks for passing on your desire to know stuff about stuff. Now everyone that reads this blog knows why a school in OK has such a strange name. When I told Spence who Oral Roberts was he says, "Dude, that was a total mom thing to do. Ten years from now you'll know everything about everything just like she does."

Rhen is cool.

Stacie tried to catch Rhen's Grandpa Passey look on film today. Grandpa used to put his hand out like this and his crooked finger would hang there and he'd say something like, "Well... back in 1984 I bought some stocks in AT&T and GE...." I'd ask him about stocks and Grandma would always say, "Oh here we go again, why did you ask him about stocks Jake?" and she'd always be trying to feed us something. Even if we just ate. Grandma and Grandpa always spoiled us, I miss those two.

Rhen keeps putting his hands in this praying postion. It's his favorite position to sit in. I think he is just really comfortable this way, or he is just praying all the time that his dad will be cool when he wants to skip school and go skiing.

Actually, it will probably be me taking him out of school to go skiing.

new hair...no fingernails

Chloe has prickles of hair coming in! Her eyebrows and eyelashes are coming back and they are dark. The tiny hair that is coming in is black too. She wants it to stay that way but who knows if it will. Some does stay dark and some go back to the same color as before. You can sort of see the fuzz.

Her finger nails are falling off while the new ones are coming in. The annoy her because the are peeling off and it hurts. She cracks me up, there isn't much to do all day so she plays the xbox and I guess she has played it a lot cause barbie was warning her to not do something and she said, I know that barbie. It was funny.

No stomachoscopy

Clinic went really well this morning. She was happy and giddy and they were glad to see that. It was fun to have the doctor be postive to us and say no more leukemia chloe, no more chemo no more hair loss, lets get this cancer to stay away! She was real upbeat about it and lets face it a lot of the times they are more serious. It was a positive visit. Only 2 more LP's to go, and then on day +100 they reevaluate her and if she isn't on steriod and is good she can get her line out and go home and only come back every month! She will most likely be +100 to go home because of her unrelated donor. Those who have sibling donors or their own marrow can go home earlier I guess. I got to see our friend Jenny Clawson and her son Noah at clinic today! It was fun to see them and I was glad to see cute Noah. Hang in there guys!! You both looked great!
We got a visit from Kinsey last night to watch American Idol it was fun to have a visitor, I wasn't much company though because I was so tired. Rhen has not been sleeping. Ok, we made the mistake of seeing if it was really lactose intolerance or if it was the new bottles that I was giving him. I have bought a lot of formula and we wanted to use it. I feed him three times with regular formula (cause he eats it better than soy) but man, it is lactose intolerance! The boy has not slept since saturday. He is in pain and cries when I lift his legs up. So I am debating whether to keep him on soy (which he will eat, but plays around with it and takes him forever to eat) or go on lactose free formula. Anyone have an experience with this, please help a tired mother out!

invincible

Addie is already in her teen years it seems. I thought it was just boys that think they are invincible, but maybe girls do too. Addie was just wearing a T-shirt today and was about to head out the door with no jacket on. It's not summer yet and still pretty cold in the morning. Trying to be a responsible parent I told her she needed at least a jacket if she wasn't going to wear a coat. As you might imagine, an arguement followed. And I got that look that says, 'you are sooo lame dad.' So i happened to be on the phone with Stacie at the same time (men are good at multi-tasking) and after my arguement with Ads about why she needs a jacket I said to Stac, "why do our kids think I'm an idiot?"

Elsie was nearby in the bathtub and heard me say it, so when I walked in she says "It's ok dad, I don't think your naked." Good thing cause I was fully clothed. Elsie can always make me laugh, no matter whats going on. I joke about how hyper she is - well its not really a joke, she is hyper a lot - but she sure makes life fun.

Addie was up late playing with Spence and Tal last night (I was off doing taxes which was super fun), but she was up early this morning to finish up some school work and do some reading. She's a responsible girl, really she is - why won't she wear a jacket when it's cold out? Stacie says I need to pick my battles 'cause if she gets cold she'll wear a jacket next time. I picked this battle and she leaft wearing her jacket.

When you are old Addie, and reading this archive to remember your old decrepid dad, I hope you realize that you are probably still alive because I made you wear your jacket today.

giddy chloe

Chloe is feeling so happy and feeling good. She runs over to me a couple times a day to see how I am. She took care of me today instead of the other way around. I needed a nap learry bad so I laid down with Rhen and she took great care to turn down her TV and take care of getting her meds so I could lay down. She even took my phone in her room so that she could answer it if it rang. when I woke up she was there to ask me how my nap was. Great girl. We have clinic apt tommorow and I don't know if she will have a stomachoscopy or not, it didn't say on the discharge papers. I will let you know how it goes tommorow. It will be nice to get outside.

p.s. Jake you are a great dad!

expert at sales.

Addie and Elsie were playing outside with the neighbors and Addie decided that they should start a rock business. So they gathered up some rocks and got the toy cash register from inside the house. Elsie was one of their first shoppers and Addie talked her into buying a lot of rocks. Later they came in from playing with their cash register and Addie says, "Dad, we had a really profitable day today." Seeing the cash register I played along and was congradulating her. Then she opens the drawer and there was a bunch of real cash in there. Elsie emptied her piggy bank that had some money Grandma and Grandpa had given her for her birthday and blown it on some rocks. Addie had a $20 bill and some other misc change and bills. She was stoked about the sale, Elsie was excited to have her new rocks and neither one of them planned on putting Elsie's cash back in her piggy bank. They already made the deal. Addie was 20 some odd dollars richer and Elsie had a nice set of rocks. I had to argue with both of them that Elsie was not going to blow her wad on rocks.

would you, could you in a train?

If Stacie were here she would have done something cool for St. Patrick's Day. Because she isn't here but wants to be, she suggested I make some green eggs and ham for the girls. I didn't think they'd eat it. Honestly I was seriously debating it myself as I was cooking them and they were in the slimy, chunky, half cooked state - and green. I was about to just bag it and eat some Cherrios. The eggs tasted just fine though and the girls ate them all. They were excited for St. Patrick's day and made sure we all wore green. I was already dressed so I had to change my shoes to some with green on them. They were really worried i would get pinched at work today. I told them if anyone pinches me at work, there will be some problems. I wore green anyway.


Chloe was real giggly when I called her and Stacie tonight. It's nice to hear her sweet little laugh again after she's been feeling junky for a while. Hopefully she'll keep feeling better and better.

poop again...sorry Jake

I am wondering if chloe's fever and stomach pain was caused by constipation. I haven't worried about that for the six month because she is always on antibiotics. She didn't eat much at the hospital and then all the sudden started eating mac and cheese and dairy might have backed her up. Here is why I think that. Well for one she has had this problem before. Her stomach hurts and throws up because she is backed up. She had runny poop at the hospital, and then we get discharged on antibiotics and she has formed poop here. This morning she had another one that was formed. So what I am figuring is that she was backed up and the loose stuff was going around it. This is what I was told before when she had this problem. She would throw up because her stomach was full of poop. Today she was in a really good mood running around (as much as she can). She was just acting totally different. So these are my thoughts on this past week. I might be wrong and as Jake could tell you it isn't the first time.
Me and Rhen had a cuddley day watching Pride and Prejudice (the 6 hours version). I had to break him into his sensitive side. To Jakes relief Rhen slept threw almost it all. I watch this every year around this time. It is my favorite movie, and around this time for the past 5 years hard trials have come my way and this is my sit down and enjoy a good movie.

sad sayonara.

Elsie has had a hard time the last few times we have gone down to visit Stac, Rhen and Chlo. I think that week Stacie spent at home reminded Elsie how much she loves having her mom around every day. Today she was crying as we left because she really wanted to stay with her mom. On the drive home she said, "it would be a lot better if our house was around the corner from the apartment. Then we could just walk home instead of driving for so long. But, our neighbors would have to move their houses down there too, because we like our neighbors."

The weekend was too short, but we're glad Chlo was able to leave the hospital on Saturday and is doing pretty well, other than just feeling junky. We're still unsure where the fever was coming from but hopefully whatever it was will just go away. She always enjoys having Addie and Elsie around, even when she doesn't feel so hot. Everyone is sad when we have to split up again, but that's just the way it goes. It won't be too much longer and we'll be back at home being really noisy and the kids will leave their bikes out in the street for all the neighbors again.

Addie and I played a mean game of chess when we got home. She is pretty good at strategery, but made a careless mistake. I let her win the last couple of times we played but a dad has to keep it challenging or kids will think life is cake all the time. Sometimes it's lumpy, green milk. At least she's had the cake so she knows what to look forward to.

I taught Rhen how to weld over the weekend. He's pretty good, but he has a thing or two to learn. He made this moose to the left. Pretty decent for a 2 month old I guess but I don't think it's his best work. He hasn't really found his niche yet, but he's cranking out some decent stuff.

Rhen keeps making faces and gestures that remind me of Grandpa Passey. He raises up one of his hands to the side and has this look on his face like he's going to say something. Grandpa always raised up his hand and said,
"well..." before he started a story. I think I might float Rhen a few bucks, open an account for him at Etrade, give him a notebook and see if he has Grandpa's genes or not. There is a good chance he does. I don't have a knack for stocks, but maybe that's one of those things like red hair that skips a generation? I don't know if that's really true - about the red hair- just something someone said once. I miss hanging out and talking with Grandpa.


(Rhen didn't actually weld this statue. I'm serious, he really didn't. My comments above were stretchy sarcasm. John Kearney actually welded that and he did a fantastic job. It's in Chicago somewhere. This is a bragadocious thing to say but if Rhen did weld, you can rest assured it'd be something cool. I really like that kid. I'm not kidding).

walking the dog

Chloe has some meds she gets several times a day that look like this. We call them space balls, not sure why. They are pressurized somehow to release just the right amount of medicine into her central line over a certain amount of time. So Chlo drags the space ball around the apartment holding onto the IV line like it's a leash. It's kinda cute because she will pretend it's her little pet sometimes. I told her maybe we should just get some more space balls because they don't bark all night, poop all over everything or eat all of our shoes. For some reason she is not convinced, go figure.

mama loves her little boy

Rhen started to laugh the other day at the hospital. It was so cute and it made both me and chloe laugh so he laughed some more. It was really cute. I am pretty sure he will have blue eyes like his daddy. He also shares some other attributes like his dad. He definatley has his sneezes. If they sneeze you can see a whole lot of spray! Sometimes when he hiccups he will do a hiccup burp, do both at the same time. It sounds like it hurts. He also is a ridiculously fast typer like his dad. Smoke starts to shoot out the keyboard.

day +61

We are over half way through the 100 days. It seems so close... hopefully we won't have any complications to deal with. We got the ok that Chloe can come home today. Nothing has grown and C-Diff came back negative so far. So we don't know what infection caused the fever. They will check for GVHD next week sometime, the doctors have a gut feeling that something is going on that is why they didn't discharge her earlier. I am glad that while we wait for the test we can be discharged. We will just watch her here.
Addie is handling this the best she can. I try to talk to her about it but she is like her dad. She doesn't express her feelings well. She likes a lot of attention, and we try to give her as much as we can, but it is hard. She helps chloe feel better while they are here. They are really great friends.
Elsie is understanding more why we have such a crazy life. The Ronald McDonlad house has tickets for the zoo and we were going to go but I said Chloe won't be able to go and you guys would feel bad if you couldn't go. Later on Elsie said that we better wait until chloe has hair to go to the zoo cause if I didn't have hair and was sick and you went to the zoo I would feel sad.
Rhen is getting better and better the older he gets and even though he doesn't sleep through the night I have learned to pray to get better sleep when he does sleep, rather than asking for him to sleep through the night. That just made me more frustrated. I fell comfort when I think of us coming home. But this disease is not a predictable one so in the back of my mind I have to know the reality that it might not be on day+100.

rice krispies does a body good

She is doing much better this afternoon, after I finally had to get mad and force feed her rice krispies like a baby, after that she realized that is helped her feel better so now she is eating some toast. I keep telling the nurses that she is much better so we will see what that bring tommorow. Maybe we won't have to stay this whole weekend.

frustrated

We don't get to be out of here this weekend. She just isn't getting better. I had to hold back my tears while they were telling us we need to stay. Her fever is gone but she has really low blood pressure and her stomach pain hasn't gotten better. She won't eat anything either fearing she will just throw it up. She hasn't wanted to hold Rhen, she doesn't talk much. She just sits and watches TV. What else can you do if you feel yucky. They are scheduling a stomachoscopy on monday, they are scheduling it for monday in hopes that our unwelcomed friend C-Diff is back.
I want to ask them why can't we just go home on antibiotics and if it is C-Diff they can just perscribe the meds to take care of that and if it isn't we will be back on Mon anyway for the stomachoscopy. It is frustrating. It seems useless to be here just waiting when we can wait at the apt. We both are just so frustrated with this disease. I don't want to even write anymore. Cancer sucks!

ho hum...

Nothing new to report. We are hoping to go home tommorow, she just needs to eat. Her tummy doesn't hurt today so hopefully the antibiotics are doing the job. Well, the other day Jake and I were worried about relapse. I hear of stories of patients here and then get worried. So I asked the Doctor about relasp statisitcs and here they are: She is on an experimental drug protocol. There are 62 kids on this protocol and their cure rate is higher than those that are not on it. However, there are a lot more kids that are not on the experimental protocol so that may skew the statistics some. So with kids on Chloe's protocol there is a 63% chance of no relapse, where the other kids have 40% chance. I don't know if this makes sense, statistics never have made sense to me. He said there are other things to worry about other than relapse as well, like GVHD, which can be deadly.
So after a year he said we can breath easy about relapse, but after 2 or 3 years you can breath a lot easier. So we still have to worry a little bit even at a year. It makes us worry and is constantly on our minds but we are trying to take one day at a time. But, at the same time we think about what the future might hold.

Rhen slept good last night, me and chloe did not.

it's something unpredictable, but in the end its life...

Chloe must have known something I didn't. Yesterday she didn't want to be discharged until her stomach felt better and she stopped throwing up, but I coaxed her to get her meds at the apt. the docs said we could go. She was apprehensive, but didn't want to let me down so she finallly agreed. Well we are back, at the hosptal. This morning at 6:30 I went in to flush her line from her fluids at night and took her temp. She had a temp and was crying of bad stomach pain. I called and were told to go into the clinic. They were concerned about her so they want her to stay. They want to do a whole cycle of antibiotics, hoping to get rid of any infection (which she didn't grow anything yet). They think it might be the bodies reaction from coming off of the steriods. If her stomach pain doesn't go away with the antibiotics they are going to do more extensive tests for GVHD. Go down her nose and get tissue from her stomach (all while she is asleep) and test it for the disease. All the nurses were bummed out to she her here again, but what do you do. I feel bad for her, but she understands why this is happening. She didn't want to leave in the first place. She just wanted to get better. I feel bad for Rhen, poor kid is never able to have a routine. He seems to be handling it well he is asleep right now so I shouldn't worry so much about him. Chloe is drugged up with some oxicodine, so she is feeling better. To make things worse when we went to get into the car to head to the hospital she tripped and fell and now her ankle really is hurting her. Well this is life.

...we are NOT having the time of our life. (greenday song)

Bustin Out!

One more thing about poop and then no more, I promise Jake. No one could be more grateful than me knowing the it was constipation that was making him fussy and not the crazy lifestyle. I worried so much that it was because he wasn't in a stable enviroment, that he was constantly sleeping in different locations. The guilt was very stressful and now he has been so good, I have never been so grateful for poop. Ok done.

Chloe had no fever yesterday!! She was off her antibiotics and didn't develop a fever so we are bustin' out, hoping never to come here again! One of the tech's said that all the BMT patients always come back at least once. We will cross that off our list, and never come back - to be admitted at least. Now we just have to pray that she doesn't get signs of GVHD!

My plan for today is to order a burger in a can, and just kick back and enjoy!

ps. sweet blog Jake!

anyone ready for spring?

our blog is. . . . . . . . . . . . . . . it's ready for the 70's too.

huh?

were Stacie's last two blog posts really about poop? including the smell, consistancy, color and regularity? we need some more excitement Stac. Poor Rhen, this will come back to haunt him someday.

never been happier to change a poopy bum!

Rhen pooped on his own this morning! I was so excited, so the apple juice must be working. I wasn't mixing it with water so I will start now that he pooped on his own. It was still pretty thick but it didn't smell as bad. He is a lot happier which makes me a lot happier!

Chloe is going to stay one more night. She had a LP scheduled anyway for tommorow so we will stay so we don't have to come back. They are taking her off the antibiotic to see if she spikes a fever. The doc is just really concerned about her fever she spiked on Sat of 102.4 which is really high. Nothing has grown in her blood cultures. They just want to make sure it isn't GVHD. She is off the steriod so now is the time we watch for that. So we are here one more night. Has anyone slept on a big huge boulder? I did last night. A big long blue leather one. They really need to upgrade the sleeping arrangements for the parents here. I want to look into getting some donated cause they are learry uncomfortable.

eewww that smell...

So I think Rhen has been constipated. He had such a hard time sleeping friday night, I was frustrated, I have tried everything so in the morning I helped him out a little to poop and it was green and boy it smeltbad! So as always I googled it. They gave me a few suggestions to help constipation and he slept really well last night and he has been taking better naps during the day. I helped him poop this morning too and it smelled just as bad and was a little more green. So I am giving him a little bit of juice in the day like it said on this website that a doctor recommended. Hopefully that will work. He has been pretty good since. He sure has been a hard one to figure out, but maybe if I didn't have some much other dang stuff to worry about I would have thought, oh I stopped nursing and he is on formula, and he hasn't pooped in a week or so...hum maybe he is constipated. My head hurts! Maybe I should start drinking Mountain Dew.
Deep thoughts by Stacie
how come Jake knew the word bragidosious and used it in a sentence. He has never use the word before. And how come I challenge the word, saying the word isn't a word, when I know darn well that Jake is a walking dictionary.

This fever won't go away.

We usually have to stay in the hospital 24 hrs after her last fever so we thought we'd be back out of here today. I guess we're not so lucky this time. She spiked a fever again yesterday afternoon that was pretty high. She is on several antibiotics to fight off infections and got a rash from one of them. There is a chance the fever is because of a reaction to the meds, but to be safe it looks like we'll be here for a couple more days.

tasty tips. because i care about your nutrition.

Looking for a meal idea for your emergency preparedness kit in your car? Maybe a tasty treat while camping? Heck, you could stash a bunch of these in your desk at work. In this modern age of always on the go, who doesn't crave a cheeseburger in a can?

Fresh out of the can, isn't that delightful?

you can read about this scrumptious entree here.

back in the ICS

the last couple of days chloe hasn't been feeling super awesome and sleeping alot. This morning she had a blockage in her line when i was flushing it after some meds so I brought her up to the hospital. Of course, once we got here the blockage was gone. I think i must have broken up the clot she had while i was flushing it. 2 hrs later she had a fever and we had to have her admitted. Stacie drove down with the kids today so we could all be together for the weekend. She arrived just in time to leave again and take Chloe to the Hospital - which was nice because Chloe was really missing her mom. The doctor says usually if there is a blockage, kids have a fever within a couple of hours so i guess we are no exception. He doesn't think the fever will last, and we hope he is right. So it looks like we will be here in the hospital again until Sunday at least. It was nice to see some of her favorite nurses, but we don't miss this place at all.

Stacie says Rhen won't sleep, but after she left to the hospital he and i had a man to man talk and he slept for several hours. Actually it took me an hour or so to get him to calm down (would have taken Stacie 5 min.) and then i had to hold him the whole time or he would wake up. But after not seeing him for a week, I was ok with that.

Elsie told me today that the Fj might be a jeep because jeeps have spare tires on the back that are centered, but cruisers have spares that are offset to one side. She didn't use those words so it took me a while to figure out what she was saying, but by the time I did I was impressed. I point out cool vintage cruisers to the kids when we see them (as every dad should), but I didn't teach her that characteristic. Smart little 4 yr old.

useless fact: the fj's spare is actually offset just a hair.

Nice to be home

It is really nice to be home! It makes me want this to go by really fast. Probably seems like it's gone by fast for all of you, but for us not so much.
I had a doctors apt for Rhen and he is growing in height. He pretty well jumped from 20% to 60%. He is only ten pounds and his head is pretty much the same. The doctor asked if his dad was tall. So maybe he will be a tall kid. Jake informed me that he has grown 2 inches. Do you grow at 32 years old? Guess so. His dr said that I am his security blanket, I am all he knows so he likes to be held. She also put him on soy formula which I have seen a huge difference in his sleeping at night, which is great for me.
Hey Jake, after I got all the painting done and all the fix-its around the house I had some extra time so I did go and hike Everst, it was a little chilly so you will have to take two light weight jackets. It took me about 5 hours, which I was pretty please with myself, althought next time I will try to do it in half that. The scenery was pretty amazing I will have to say, so I decided to hang glide off the summit, it was pretty awesome. So basically it was a pretty normal day for me.

sleepy second day after monday

It's been a real quiet day today. Chloe worked on a bunch of school workbooks this morning and then read the front pages of all of our family's and neighbors blogs. She likes to read, and she was having fun looking at all the pictures of her cousins and neighbor kids. She keeps asking me where I'm going to take her backpacking next and if we can stay for a few days instead of just overnight. She wants a longer hike too. Not sure how soon she will be able to do something like that but I'm thinking Everest when she can, anyone been there? Seems like a decent hike, ok scenery - can't be too long. might need to take a jacket.

She's was real tired last night and this morning so she took a nap. She laid down over five hours ago and she is sleeping like a rock so I hate to wake her up. We have to stay up later to take her meds and hook up her IV, and then the IV alarm goes off early in the morning when it is done; i think she is just tired from a weeks worth of not enough sleep. Her tummy has been bugging her too, she prob just feels junky. She is a little sweetheart.

03.04.05

Today's date turned our life upside down. It marks the three year anniversary of Chloe's diagnosis. It is not a day I like to remember but since we are still fighting it, I remember. But I know I will for the rest of my life. I remember that day like it were yesterday and how we were brought into the doctors office with a couch in it and we both looked at each other and thought this can't be good. You never can be prepared to hear your child has cancer. I thought, "what did you say?" We were told there is no time to waste and to get down to the hospital right away there was a room ready for us. Jake couldn't drive, he called his mom but he couldn't tell his mom, the tears were just coming hard. The Cochrans were watching our other kids and I just hugged Megan and cried when we got there. They helped us with our kids and got us some food, we packed and off we went. On the way down we tried to talk about other things. But how could we not think of this. Chloe has no idea what was going on. She was 4 years old. To distract her, or more likely myself, I asked her what she wanted to be when she grew up and she replied, "A mom." At that moment I felt how much the Lord loved her, even more so than I did (which you think is impossible cause you love your kids so much). I knew he would take care of her. I thought 'I hope it will be possible for her to be a mom,' and I realized you can be a mom whether or not you give birth or not.
It was a friday so a lot of the procedures that were done we were all by ourselves. Sitting in waiting rooms with no one else, together with our own thoughts. I remember letting her go off to get surgery [installing her central line] thinking this man is taking her, I have no idea who he is and now he is taking my precious girl away to have surgery, this is crazy. We were educated, informed, told all about the side effects and the treatment protocol. We were scared. It was going to be a long journey, little did we know it was going to be longer than we thought.

Chloe you are amazing! I love you.

Monday

Nothing real exciting today. We had a doctor appointment at 8:30. She seems to be doing great. We bought a bunch more meds for the next week or so which was really exciting. It's been kinda fun to spend some one on one time with Chloe when she is not bed ridden and hooked up to a bunch of pumps.

We were reading Charlie and the Chocolate Factory last night which made us hungry for some chocolate and wonder how we could get a hold of some of those Oompa-Loompas. Seems like they would come in handy around the house, maybe the garage, kitchen when we feel like something scrumptious.

So Stacie got home late last night and first thing this morning she is repainting the family room. "It's therapy" she says, "helps me relax and get my mind off things." Sounds like if I kept doing some stuff to make her stressed we'd get a lot of work done around the house.

Hey Stac, i'm going to start another business that will require me to be out of town a lot and i'll be gone for two months starting Friday. Sorry, you'll have to take all the kids. (there are lights to be hung and jambs to be painted in the storage room, garage needs cleaning and painting, if you could wire up some flood lights in the back and install a water filtration system i'd appreciate it. Oh, and the oil in my truck needs to be changed - Synthetic, not conventional. May as well wash, wax and rotate the tires while you have it out.) Oh, and i'm forwarding all the business phone lines to your cell phone while i'm gone. The guys in the office are just real busy with other stuff. Thanks, preciate ya.

the weekenders.

We had a fairly decent weekend down here all together. It's nice to get together even if it's just a few days. We went for a drive yesterday to get out of the apt. for a bit. It was nice to all be in the same car even though all the girls were arguing, being loud and pestering Rhen. It reminded us of the good ol' days, driving places all together, kids laughing and playing so loud we can't hear each other talk. Good times. I think it was the second time we have all been in the same car since Rhen was born so it was extra special.

Kelly made us some fabulous breadsticks and soup which made our Sunday very nice. She is a great cook just like her mom. She also took some pictures of the Rhenster. We had a hard time getting him to smile so hopefully a couple of them will turn out. He smiled a lot the rest of the weekend and was sleeping pretty decent. I think he just needed to have that manly smell of his dad around. Actually, it sounds like he is doing even better since Stacie got home (so far) comfortable in his own room.

It was fun to see the girls playing together and laughing really hard. When they left tonight, Chloe was tired from all the fun she is not used to. Stacie found some time to cut my hair that i botched trying to cut myself. She cleaned up my mistakes and now I look a lot younger and my arms seem to be more muscley. I was really grateful to her because I have been super concerned about my hairstyle lately.

better when we're together.

Crooked Boy.

Crooked Dad.

(smiles, that is).

Get that camera out of my face!

Save me a piece of that corn. Save me a piece of that corn for later!

It's always a good time with sisters.

Rhen, wondering who the guy is that claims to be his dad.

pretty girl. happy boy.