NOTE:

I wonder if Stacie knows that a vehicle recovery/extraction device is actually spelled WINCH, and not WENCH. I won't be telling my son about any wenches because it's inappropriate and i have no knowledge of any. I was going to fix it, but blunders like these make Stacie who she is. Love ya Stac.

OHHH BOY is he cute!

We can't tell who he looks like. It depends on the day somedays he looks like me and then other days I think he looks like Jake. He likes to blow bubble with his mouth and likes to make the sound of a cat in a fight (he doesn't do it very much though but it is funny). Hopefully in the next week or so we can stay together as a family in the ronald mcdonald house and Jake can hang out with his boy and give him tips on the different wenches, bumpers, spotlights and navagational systems he can have for his landcruiser!

bringin the 80's back!

Elsie wanted to put on some makeup and she actually asked to put some on which didn't happen with the fingernail polish ealier today. She did it all by herself and when she came up to show me she had so much on that I could smell it (this particular play makeup has a smell to it). She was pretty proud so I took a picture. Rhen is doing so much better in just one day of changing diet. I have been eating alot of broccoli at the hospital to get veggies, that's what I get for trying to be healthy, haha. I realized he really is a good baby, cause he doesn't cry he just grunts and toots and spits up all the time, it is just because I have all these other stresses in my life right now that it makes it all the more frustrating. I wouldn't be frustrated if we were living a normal lifestyle. He is getting bigger so fast I don't have time to take awesome pictures of him but here are a few.

Nice to come back to...

Last night Stacie and I did the old Switch-r-oo. Chloe looks a lot better than she did when I left Sunday night. Her rash is nearly gone, her skin is looking healthy again and I can tell she feels a lot better. She was a little irritated with me last night though. Chloe has been plugged up and her nose is real dry and it bugs her so she picks at it. Stacie discovered that if she covers her index fingers with band-aids she won't pick at her nose at night which is when she gets bloody noses the most. So following my wifes recommendations i put band-aids on her fingers and she was really upset about it. (she never got upset with mom) So i was trying to console her with a funny comment or something hoping she would stop crying and quit being mad at me. It was just a couple of band-aids anyway, whats the big deal? After a few of my comments she cries, "Nothing will make me happy!" Meaning that she wanted me to quit it with the lame comments. I couldn't help but laugh because of the way she said it which made her more mad. She'll thank me later.

So good news this morning. Her white blood cells are up to 300! They have to be at 500 for two days for it to be an official "engraftment" so we are getting close. They could ramain at 300 for a week or more though, it varies. She has been at 100 for a week now. However, we can be hopeful that they will rise sooner. Back in Dec her counts were 100-200 for a couple of days and then all of the sudden went up to 1200. I kind of doubt that will happen this time since it is after transplant. We'll have to see how the next week or two go. She is getting another transfusion of plateletts this morning.

So Spence was making macaroni for Elsie and Addie last night and Elsie wanted to help. She took some raw noodles and was biting on them while they waited for the water to heat up. Spence let her pour in the noodles, then she picks up the ones she dropped and threw them in and just to make sure there were enough she spit the ones in her mouth into the pan. Then she grabbed a fist full of cheese and held it until the noodles were ready. She is a handful sometimes, but she is stinkin cute.

If you think 8 pumps is alot...

chloe has eight pumps on her meds trailer, and tons of tubes coming out of her lines, but Mike the child life specialist was in her helping her do some crafts and he was saying a year ago he was in the picu and asked one of the nurses there how many pumps has she seen a kid hooked up to and she said 25!! And we thought 8 was alot. Well today chloe has been really good, her rash is clearing up thanks to the steriods and hasn't had to have any vesterile, anti iching meds. She has had a couple of bloody noses so she might have to have platelets again soon. We have been doing the Geo Saffari an education game they have here and I have a bid on one at ebay my girls love them! Jake is coming to trade me off cause I have to get home and get Rhen sleeping through the night, it was a rough night last night I didn't get much sleep his tummy is really gassy so his doctor told me to change my diet since he is on meds and still gassy. So no milk or broccoli or gassy foods, bummer on the milk but I am ok with the no broccoli! So we will see.

bring in the big guns

This morning the head doctor came in to look at chloe's rash. He explained that what she has is engraftment syndrome. That is when the new cells are creating white blood cells and they release proteins into the body and it causes rashes. He did say that is could turn into GVHD when the counts go up and a little bit of it is a good thing, so they are just watching it because it doesn't always turn into GVHD. They are going to treat it with the streirods to see if it clears it up, which in one day it seems to be looking better, not her feet but her belly and back and hands. I was glad that the head guy named Dr Pulsipher came in, he know his stuff and explains it good. He is one of the head BMT docs in the country.
So we just wait, I take pictures here but have no idea where the cord it to put the pics on the computer. Rhen is the most frustrating eater I have ever had! He wakes up in the night and will only eat for 4 minutes and he is done but then he will wait 3 hours to eat more. So I decided this weekend I am going to try to get him to sleep longer at night not feed him so much cause I just get tired of waking up for 4 minute feeding sessions. And like this morning he hadn't eaten since 5 oclock and it was 8 and he only ate for 4 minutes! ugh! He is gaining weight and getting bigger but he just will arch his back and not eat and be fine just looks around doesn't cry or anything. so last night was very frustrating, plus the nurse was reallly loud. I am going to try to not drink milk again to see if that helps, its a bummer cause they have really good chocolate chip cookies here and with milk it is so good. The shower situation really stinks here! The parent shower which is one shower for 23 rooms, I didn't even get one yesterday and I went to go in this morning there was already a line. It makes it more frustrating for me cause I haul a baby in his bouncer seat and all my stuff and then someone is in there! Oh the joys of hosptial life.

She's Crafty!

Chloe did some scrapbooking last night before bed. Just hanging out listening to her mp3 player and creating awesome pages of her BMT experience. She could chose stickers that say different words on them for each picture, one picture she choose the word best friends forever, I asked her who here best friends are and she looked at me like duhh and said, "kathy, tabitha, kathleen, leslie...and continued to name her nurses that she has had through out all this. Although this is soo sweet, all her friends are from the hospital and are 20 years older than her. She really likes them. They are so great to her, I am thankful to them. She also said she wished that there was a sticker that said pass it on, and I asked why and she said for when my cancer is gone. Although this isn't the right saying for what she meant, which was when this is past, or she wanted it over with, you know what she means to want it to pass on. On one picture she put a sticker that said lucky princess, and she explained that she is so lucky to have a mom and dad and sisters and nurses. How sweet that even when she is going through rashes and diaheria(?) and junk she is going through she still thinks she is lucky! She wrote how she loves her sisters so much and loves to play with them. She had fun doing it and wants her dad to bring his pictures he took so she can do more!

Where to obtain a calendar.

We have had several people ask us where they can get a Make-a-Wish Calendar. If you call Make a Wish you can buy one for just a few dollars and they will mail it to you, or you can swing by their office in Murray. Here is their contact info:

771 E. Winchester, Murray
801-262-WISH (9474)

1-800-860-9474 (toll free)

those dreaded steroids

I really didn't want to see her have to go on steriods, but if it will help with the GVHD then she needs to be on them. She had an uneventful night with I am glad about having a little one to wakeup with too. The doc's came in this morning and said her feet are getting worse so they want to start on a low dose of steriods to see if it will help and to also see if it really is GVHD, if it is it should clear up the rash in 48 hours. They are still thinking it is too soon for engraftment with a cord blood donor, but he said it isn't the first time they have seen it. I felt bad because when the docs came in I was telling them that all the side effects that I have read about of GVHD Chloe has most of them so I was thinking that is was...so basically I as telling them their job, so I feel bad cause I don't want them to think I know more than they do, I just don't want it to go to her liver. So although I hate having her on steriods it will show us if it is GVHD. The steriod they put her on she did well with in sept so hopefully she won't turn into a mean girl. I know I know you are thinking chloe be mean? Oh yea, steriods can make her into one! She is in good spirits today, she cracks me up because her feet were itching this morning so she asked the nurse for a drug to help her itching and after 15 minutes she was still complaining that they itched and she said to me "I think I asked for the wrong drug, I needed vesterile." It just is funny she knows and remembers the names of some hard named drugs. She is definatley heading for a nursing degree!! We will keep you updated on if the steroids help.

GVHD Already?

Chloe's bloody nose I left to help her with last night was followed by some more itchy palms and feet and just as we were getting settled again, another bloody nose. So we were up until 2 am and she is really tired and a little onery - though she won't admit it.

Today is the second day Chloe has had white blood cell counts of 100. I don't think it really means anything yet, although the Doctor thought they might be 0 today, so i guess that is a good sign. So it could mean that her donor stem cells are trying to engraft and are producing some white cells. One of the reasons we think this might be the case is that her mouth sores have gotten a little better - so maybe the few white cells she has are fighting off the sores. Full engraftment isn't until the white blood count stays above 500 for a few days which could still be a while. However, we're starting to wonder if the itchy palms and feet, bloody noses, vomiting, nausia, stomach pain and diarehha are actually symptoms of Graft vs. Host Disease (GVHD). GVHD is a side effect of bone marrow transplants and happens when the donor cells attack any remaining cells she might have in her body so they can take over. The symptoms she is having are often GVHD symptoms. You can read more about GVHD here.

The Doctor thought that is was a little early to be having GVHD as it usually happens when the white blood cells really start to rise. But, there are no other explanations as to why she is having all of these symptoms. A little bit of GVHD can be good as the donor cells kill of remaining host cells. So if there were any remaining Leukemic cells in her body(we pray there are not), a little GVHD can help kill them off. But, if the GVHD is not under control it can be life threatening. So it's kind of a double edged sword. Anyway, she continues to have those same symptoms today. They could get worse as the donor stem cells keep making their home in her bones and produce more cells.

Last week we were kind of excited for her because she had hair stubble all over her head. But this week it is all gone again. Delayed side effects of the chemo i guess. She had a couple of bad nose bleeds again this morning and had to get another platlette transfusion. We were thinking yesterday about all of the times she has been under anestesia for bone marrow samples or spinal taps, or all of the transfusions she has had. I don't have a number, but I think it is more than any kid should have. She said she likes the milk (anesthesia) the give her when she falls asleep though, it makes her feel silly. She was so tired this morning because of our late night last night that I made her take a nap. She wasn't pleased with me, but maybe she will thank me later. Probably not.

11:50 on a Saturday Night.

The itching is back. She was screaming tonight because her feet and hands were itching so bad. We tried creams, lotions, Calamine lotion, Benadryl, ice packs, walking, rubbing and finally found something that helped. Hot packs top and bottom. She was finally calming down and then, the bloody nose came back. It's almost midnight and she is all wired up because of all the itching and bleeding. I can't ever get her to bed on time like Stacie does, I don't have the skills.




Here is Chloe's float bed. The nurses decorated it for her with tissue paper, hearts, stars and a crown for her to wear. She was helping make some decorations for it for a little bit, then she was just tired. If you click on the picture you can see her giving her best parade princess waive. She got another pump added to her pole today for a new med we think is helping with all of the itching. I'm wondering if the itching is actually tingling as the chemo and radiation can cause tingly extremeties. It's just rediculously itchy and painful to her so it doens't seem like your average itchy rash. She has a rash on her whole body now and it doesn't seem to be itchy so maybe they are not related. Dang, bloody nose is back - gotta go.

Is it morning already?

For some reason Chloe is feeling pretty good this morning (not complaining, just surprised). I have no idea why, she hardly slept a wink. She has developed a rash all over her body and her palms itch like crazy. So she was up all night itching, she had a couple of accidents and i think her meds were making her a little loopy. She'd be screaming for mom one minute, the next she'd be giggling about how she could feel chunks in the ice packs, then it was back to screaming for mom again. All the tests for infeections are coming back negative and the doctor this morning is a little baffled about the rash and her intestinal condition but he doesn't seem to be worried about it. He says every kid reacts a little different as the donor stem cells start working so i guess we just have to wait it out and see what happens.

She just raised her bed up as high as it will go and everyone in the hall passes by waiving to her. The nurses are going to decorate her bed like a float so she can pretend she is a princess in the parade. I just hope she will take a nap later because she really needs one.

Unidentified floating object.

This post contains information of graphic nature and is not intended for young readers. Spence, you may want to ask Tal to leave the room while you read it since she is still a teenager.

Actually there weren't any floating objects. Chlo has been having a lot of stomach pain and diareha that is completely transparent fluid that is the color of cream soda. The doctor thought it might be CDif or Crypto which she has had before, but all the tests are coming back negative. They took some more samples today to see if they can get an bacteria to grow and figure out what it is. We have kept her nurse busy today with all the test, blood draws, bed changes, new meds and a 2 hr dressing change. She hates the dressing changes... even more so when she is really tired and mom isn't here. She has been feeling pretty junky again today and is not tolerating my teasing. I'm just trying to liven up the hum drum of the hospital, but i guess i need to lay off until she feels better.

Chloe keeps having nose bleeds too. Common among BMT kids I guess. She just had a platlette transfusion to help them clot sooner, and today another red cell transfusion. It's not normal for a blood transfusion to feel like just another day, is it?

I ate some chicken noodle soup that was heavy on the noodle, light on the chicken. Nevertheless, it was fairly decent.

can you say...lousy!

Chloe feels lousy! She is tired of being here! She has massive mouth sores and has constant diaheria and it is more than normal so they are checking for crypto again. It was negative for c-diff and she has been having accidents in her pants and that is what happened in september. They say that she probably wasn't exposed to it anywhere, she just has colonies in her body that have it and with her counts being so low she can get it real easy. She won't talk, and feels grumpy. She is getting plalettes today and some morphine for pain, maybe that will help her feel better. The docs say that it is okay that she isn't eating because they are giving her nutrients through IV. Rhen has been sleeping better I am getting meds for colic today his pediatrician is so nice I have her cel phone so I can call her, she thinks it might be alittle of both colic and reflux. I am having them check on the crypto and Rhen. I don't want him getting it.So it is a whole bunch of fun today haha

Calendar Girl

There are so many request for Chloe's make a wish calendar from the nurses I had to order some more! She is famous her in the ICS. One lady even wants to pay chloe to autograph it for her.
This morning the doctors came in while I was in the shower and when I got back the nurse let me know they came in and there wasn't anything new and it seems like her mouth sores were getting better and chloe spoke up and said that is because I riped them off (Ouch)! She said it so matter of factly. She won't eat anything. Yesterday all she had was 5 sips of carnation instant breakfast and that was it! Good thing she is getting lipids (fat) at night. The docotor said he expected her to engraft on day +21 which will be on feb. 5th. So we will see....

Happy Birthday to Chloe!!!!

Chloe is seven today! She is 7 years old on her day +7. We came and had a quick celebration and opened her presents and then Jake was off to our house. All the nurses are coming in to sing happy birthday to her and she has signs all over the room to help her remember. Jake put one on the ceiling so she could see it when she woke up! Well staying here is not as layed back as one might think. I have a newborn that has tummy aches and eats every two to three hours. I have to clean her mouth 4 times a day, take her meds 3 times a day change her two dressings once a week, help her go to the bathroom so some days I don't even get to the shower until 2. Which the nurses probably wish I would get one earlier so they don't have to see my bedhead. Addie says it can be really crazy. Rhen had a bad tummy ache last night, I feel bad cause he doesn't cry he grunts. the meds for reflux aren't working. His tummy was really hard and he was passing gas all night. I just feel bad for him cause nothing is helping him. We are excited chloe is seven and feeling pretty good today!!

Today was Monday.

I'm not kidding.

Dang Mouth Sores

Mouth sores are getting worse. Went from all over in her throat to her mouth as well. The nurse says another kid she was helping had the whole bottom of his mouth peel off in one piece. Sounds like they are a lot more painful than a canker sore. She gets morphine a few times a day, but it's not taking the pain away enough that she will eat. We had to switch all the meds we could to IV because it really hurts to swallow pills. She wouldn't eat anything today.

The Post-Friday Day.

Pretty much just another day down here other than some open sores developing in her throat which makes it really painful to swallow. It took a little while to talk her into taking all her pills since the first one hurt real bad. As a result, the 4 mouth care treatments a day aren't met with a lot of excitement either. All she would eat today was about 3 tablespoons of Rice Krispies. I couldn't get her to try anything smoother on her throat like pudding or jello - partly because she can't taste anything these days because of the recent chemo. I guess eating loses it's luster if you can't taste anything. Good thing she is on an IV with nutrients in it. Hopefully the sores won't get too bad so she will start eating more and avoid having to get a feeding tube in her nose. However, mouth sores have been a recurring side effect for her so as much as we don't want them to... they will probably linger. Her nurse says she may not be able to taste food again for several weeks so that's not going to help with her lack of appetite either.

Chlo was a little celebrity last night. I brought down a few Make-a-Wish calendars because Stacie promised one to some of the nurses. Once one was in the hall, news spread and a bunch of nurses stopped in to congradulate the calendar girl. One of them asked Chloe to sign her Calendar on the cover and on August (her picture is on both). So Chloe signed her name on the cover, then the nurse says "will you sign August for me too?" So Chloe opened the Calendar to the 8th month and wrote "august" on her picture. Cute girl.

I think everything is incredibly awesome at home. Stacie is lovely as always and getting Addie and Elsie back on some sort of schedule just so I can mess it up when i trade her places again - it's what dads do.

Rhen grew a beard this last week. He also aquired VC funding and started some kind of social networking deal to use on those "personal computer" thingies everyone is talking about these days. Google has offered to buy it for something like 30 million dollars. I told him he should jump on that 'cause he's going through diapers like something fierce. I guess he's just not interested since his end goal was not monetary but for the benefit of humanity. Apparently he is going to pursue a career as a backcountry skier because "success is measured by how happy you are (lifestyle), not by how much you made or how big of company you built" Well said Rhen. You know, all you can do is raise your kids the best you know how - they will make their own choices. Crazy how time flies, seems like he was just born a few weeks ago. I don't even remember teaching him how to ski.

nose picker

Chloe has been getting bloody noses this week, she keeps picking it and then it bleeds. No bloody nose was worse than last night though. Since her platlettes are low the blood won't clot to stop it so it bled really good for a half hour. They gave her some platlettes last night to help it and so upped the number for the platlette transfusion cutoff. So instead of a transfusing at 16,000 she will get it when they go down to 30,000. She got another one this morning but it stopped pretty fast. She was also given afrin to help her nose not feel plugged up so she will quit picking.

Last night she was a little chatty and we were talking with the nurse about taking pills and how some kids even when they are 11 years old can't take pills. I told her when she is done with treatments she can come back and teach kids how to take pills. She said she would only do it for kids who didn't know how. Then we talked about teaching Rhen to take pills (when he is older of course because of the choking issue). She said, "well then I will be done with taking pills so I will just have to teach him with m&m's or tic tac's." That sounded so good, she will be done with pills! She is a cutie. We had a rough night last night, chlo had a bad dream and rhen was crying and I ran out of diapers and then he wouldn't go back to sleep, he was wide awake. So I am really tired and my body just isn't made for this blue leather pull out bed!! I think I will come home this weekend to rest up my healing body.

Just waiting

The doc came in and just said now we wait. They laughed at her because while I was going to the bathroom Kathy her nurse came in and chloe asked for new tissues, and the nurse said there still are some in the box. Chloe said she didn't like the yellow tissues. I guess the turn yellow letting you know there are only a few left, but she didn't like the yellow ones. Right when I walked in I was confused because she just said to me mom I don't like the yellow tissues so they brought me new ones. I tried to get her to explain it to me but I didnt get it. All the doctors thought it was funny when they were doing rounds.
We played yatzee jr. last night and it was a good thing kinsey was here she figured out how to play it because I couldn't figure out the directions. It is nothing like regular yatzee. It is a short game, jake will like that. I was out in the hall telling a charge nurse how her BMT went because she wasn't there for it. I explained that chloe had a reaction right when the cells went in when her regular day nurse came over and said ya, her blood pressure dropped to 60 something over 20. I had no idea it went that low, and that they were in kind of a panic. They did good not letting us know they were rushing to help her. Chloe doesn't complain much and when she had her ab pain she slowly started to moan and it increased as the pain got stronger. The nurses admire that about chloe, she doesn't complain much. Later that night I brought it up to Chloe and asked how it felt when the cells went in and she just explained to me how it was hard for her to breath (breathing in really slowly to show me). I explained to her why it was hard for her to breath and she understood it better.
Rhen wore his shirt that Kristen O. gave him that says "lock up your daughters" and it spread fast through the nurses what the shirt said and they wanted to see it. They thought it was hilarious.
Chloe had some toast this morning and had 1 bite. She couldn't taste it. I made all those cinnamon rolls and oatmeal cake and she doesn't want them anymore, oh well. More for me! haha no I will wait and see if she wants them next week or something. Other than being a little more fiesty than usual she is in pretty good spirits, but all she feels like doing is watching tv.
It is stinkin cold today!!!

Day +1

Today has been pretty good. She woke up in a happy mood. Has had some stomach pain but the bmt preservative that she reacted to yesterday makes her have cramping and runny stools. She also noticed that her tastes buds don't taste food. She had some fruit snakes and told me she can't taste them. I guess that is from the chemo that she got last week. She loves talking to Rhen. Rhen most likely has reflux (thanks Brook) so I have some medicine coming on friday to help. He has some symptoms that I found on the internet. So we will see if that works. That is all for today. Just waiting, waiting. I have my vote on engraftment on day +16. Maybe too soon but I am thinking optimistically.

Day 0

Today was kind of a big deal for Chloe. All of last weeks treatments killed all of her own bone marrow cells to get ready for the new cord blood. The chemo she has had over the last three years has also attacked her marrow, but the combination fo irradiation and chemo she got last week obliterated it. If she didn't get a transplant today, her marrow would never recover. So today is referred to as Day 0, the starting point of engraftment and recovery. She has been very exhausted and not feeling good at all. She tries to feel good but just doesn't. Since today was a special day for her we were glad she was feeling a little better when she woke up. The way she has felt the last few days, I didn't think she would want any visitors other than family. But she was looking forward to a little party, and in a way i think she feels better just because she knows she is getting new marrow.

At 3:15 this afternoon, the cord blood was ready to go and the doctors and nurses came in with silly hats to sing Chloe Happy BMT day. Stacie bought Chloe a little scrapbook and disposable camera so she could make her own scrapbook of her BMT stay. Here she is taking a picture of a couple of her favorite nurses. Tabitha from Minnisota [R], and Kathy from Mass. [L]. They are both super nice to Chloe and took really good care of her today. Chloe's taking a picture with her little camera for her scrapbook. It was a good thing we did the little party thing before the BMT took place because Chloe quickly didn't feel well again. The cord blood transplant she got was from a boy that was born 9 years ago. The cord blood can be stored up to 25 or so years and still works great. To store it though, they have to mix in a chemical when they freeze it.

This is what a bag of cord blood used for a BMT looks like. The bag is hooked up to her IV and was all infused within 15-20 minutes. Miraculously, the cord blood just finds its own way into the bones.
They prepped Chloe with some drugs to offset the side effects of that chemical, but some kids react different than others. Within seconds of hooking her up to the bag she was bright red and in intense pain in her abdomen. She started screaming, throwing up and suddenly couldn't control her bowels either. Stacie made her favorite cake at home, froze it and brought it down for her. Chloe loved it, but it all came up. It was pretty messy and she was in a lot of pain for a while, but after 40 minutes or so she started feeling better. Within an hour or two she was feeling a lot better and painting, her sisters, my sisters, Stacie's and my moms fingernails with the polish she got as a BMT gift.

So now we just wait and see if the cord blood engrafts. We expect her to start feeling the effects of her chemo this week. So she'll probably get some bad mouth sores, feel lousy and some other side effects that sound junky. She has a calendar on her door where everyone can throw in a dollar and guess the day of engraftment (when her ANC counts are 500 or more for the second day). I gave Chloe a silver dollar and she has guessed the 7th of February. We'll see if she is right, either way she'll get her silver dollar back since the winner gets the glory and Chloe gets the cash. So engraftment can take anywhere from 3-5 weeks from what it sounds like. Different with every kid, kind of like side effects.

I joke sometimes that there is a lot of emotion in our house with all the girls. Actually it's not a joke, there is. But man, Chloe is a tough little girl. She is handling this better than a lot of men would.

Thanks to all of you for your prayers for Chlo-pie and our family. We really appreciate it. And thanks a grundle to the sweet lady that donated her sons cord blood 9 years ago - whoever/wherever you are!

Rhen the Motivational Speaker.

Here is Rhen giving Chloe a pep talk before her BMT. All of the sudden he has a real scruffy voice kinda like the old coach guy on Rocky. He pulls that same crooked face when he talks that way. Its surprising to hear such a little guy talk like he's 80 and from brooklyn. Or was he from Philly? I'm not a movie buff. But it was still funny to hear Rhen pumping Chloe up:

"Ya aint backin down Chloe, You're a wreckin machine and you're hungry... you eat transfusions like this for breakfast!"


I might have just made that up.

Torn

Well, I did leave in tears. I was so torn because I need to sleep to take care of her during the day but she was trying to figure out for me how I can stay with her at night. The room is small, not room for anything for him to sleep in and his head would get flat to sleep in his car seat all the time. I am so torn as to what to do. We have been battling this so long and I am getting exhausted of it, but I am sure chloe is more so than me. I still don't have any idea what to do, if anyone has words of wisdom to help me please do so, man it just stinks. Jake got no sleep last night and then to have a baby there too...I am just exhausted thinking about it. Well we are glad for her BMT today at 3:00, so wants the whole shabang...party hats, banner, songs and all. She is feeling good just really tired. One of the nurses said she had asthma, but she was coughing really loud all night. she would come in with a mask and gloves, but they couldn't sleep, plus with the spreading of germs, we wished she would've went home or something. she is a really nice nurse though. So she is pretty tired. Rhen did ok last night I tried not drinking milk, or chocolate to see if that helped and it did a little but she still was groaning early in the morning about 4 on. This is a venting entry, please forgive.

Sad Girls

Well, Stacie came down to hang out with Chloe while i spent some time with Addie and Elsie. They had a great time together, but Stacie left tonight in tears and i arrived to find Chloe in tears. Both because they wanted to be with each other. There is just nothing like having your mom with you in a time like this.

everything is a go for tomorrow. BMT should be late morning, early afternoon - then it's a waiting game for several weeks to make sure her body accepts the marrow and engraftment happens.

Chloe's doing ok but feels nausiated and wasted.

Chloe's Trailer.

Chloe's IV Pole. She is up to 6 pumps, looks like she'll get another tonight. She has 2 lines in her chest and one in her arm so there are 2 meds per line. We call it her trailer because it follows her wherever she goes. Which i guess isn't that far these days actually. The nurse said the most she has had on a pole was 7, so looks like Chloe will be there soon. One day she might want to look back and read the blog about this year and see her buddy, the IV pole.

Count your blessings.

I was just in the hall chatting with a couple of parents of kids who have just had bone marrow transplants. One had the exact same protocol as chloe has this last week, the other did all the same except one drug. Chloe has been feeling lousy and having some side effects, but from what it sounds like she has handled the TBI and Chemos pretty well so far. The other kids had a really rough time with either the TBI or Chemos. They referred to that week as the week from Hell. Chloe must have a high tolerance for pain or she is just not a complainer. I mean it hasn't been awesome, but not as bad as the other kids apparently experienced. It almost makes you wonder if she is getting enough to do the job. I just hope it gets taken care of this time. Hopefully she will keep handling things as well as she has; some of the side effects won't present themselves until next week.

She is finally done with the 3 a day baths! She loves baths, but she hates getting her pic line and broviak cleaned 3 times a day. She was very pleased to get her bandages back on and have a week break before having to remove them and sanitize the area again.

Addie the photographer

Addie wanted to take pictures last night and so she told Elsie how to pose and was so professional about it. This is Elsie's first glamour shot!

All Rhen's little helpers

I have a lot of help with Rhen. Addie follows me around the house waiting to hold him and Elsie just wants to give him kisses every time she see's him. I can' t even take a picture of him with out her racing to give him a kiss. He is a very loved boy! He has grown 1 " and now weighs 7.2 he is only in the 10 percentile but none of my kids have ever been big. He is so fun, but he struggles at night with pain in his stomach and then he finally explodes and it gets all over so last night I changed him twice from head to toe. All of my kids when they get to around 3 or 4 weeks have tummy problems so this is nothing new but boy I want to get some sleep. Last night we had a slumber party in my room and with Rhen waking up and Elsie sucking her fingers really loud, or as elsie would say learry loud, I didn't get much sleep. They had fun.

Hum Drum.

nothing new to report. Chlo feels kinda lousy today so she hasn't wanted to do anything. Still no news on the infection that they weren't sure about yet. The Doc says it won't hold up the BMT, so we're still on track. Depite the infections she is in good shape I guess, hopefully they will go away with the antibiotics.

Slacker

I'm taking Stacie's last post as a hint that i need to get on the stick. She asked me to update the blog with a new picture a while ago, but i was too lazy to make a new one so i just grabbed Everest temporarily because it was pretty.

Chloe started her Thiotepa chemo today which is a 4 hr injection. This one is pretty toxic and seeps out through the skin - as Stacie mentioned. So far she is doing pretty well with it and enjoys the baths. She doesn't like all her tubes hanging freely with no bandages on them though. Her friend Claire [who also just had a BMT] sent her some bath soaps, oils and lotions to help her skin feel better after all of the irradiation so we have been getting some good use out of those (thanks Claire and Fam). With several baths a day Chloe smells delightful and my hands are wonderfully soft from helping her.

As Stacie said (i'm repeating this because i've had a couple of people ask me this today), Chloe has developed C-dif again [a digestive system infection], a strep type infection as well as another that is unidentified. She's on antibiotics that will treat all of them and they will not hold up the transplant. They say these infections are common as we all have viruses like these in our body, but when our system is compromised they start to show up and cause problems. So hopefully they have caught them early and they will not cause any issues next week when she really starts to feel the effects of the chemo and irradiation.

She's having a hard time eating much since her menu is limited. Well i should say, the things she will eat -that are acceptable on her diet- are limited. After offering her many things... and a little persuasion, i finally talked her into eating a breadstick and some chocolate pudding.

Rhen has grown 15/16".

Our Mt Everest

As you will notice our picture is of Mount Everest, we put that on to symbolize our Mt Everest we have climbing now. It makes it alot easier to climb with wonderful friends and family helping us get to the top. We love and thank you all for helping.

so long TBI's

She had her last TBI treament yesterday! She was very excited and got a basket full of princess wands stuffed animals blanket and a kite. She was pretty proud of her accomplishment, as she should. I was so proud of her too, she did so well. She knew that is was a big accomplishment. She get so many comments on the hats that Kristen Longhurst sister made her and she always gives a big smile when she is told how cute it is. So Kristen tell her thank you.
She has some infections growing in her blood, on they think is strep, which we have through out our body not just in the throat. She got some anitbiotics for that and had a reaction to it where her face and hads turned bright red and it feels like you face is really hot. I have had a similar reaction to an anitbiotic and it really hurts. she didn't like that at all, and I don't blame her. They gave her some more benendryl and now they will just give the med over 2 hours and not 1 hour. Jake told me this morning that something else it growing in her blood but they haven't figured what that is yet. She started her drug this morning that she will have to take a bath 4 times a day cause it comes out her skin and and could burn her. The doc told me yesterday that this part of the week will be the hard part. She is a fighter. I was thinking today if this is real, sometimes I don't want it to be reality, but then it is. Chloe is such a great example to me!!

unwelcomed junk is back

She just can't kick this C diff! (darn it!) She is also getting a blood transfusion today. Her levels are a bit low so she is being preped for the blood with benedryl. Her last TBI is today at 3 oclock! Her cheeks are a little puffy because of it. They tell me it will go down today or tommorow. she is always a little groggy afterwards. They are bringing up a rhodes cinnamon roll for her today and hopefully she will eat it, she hasn't eaten much. We haven't heard back from the blood cultures for her fever, it takes a few days for anything to grow if there is any infection. We had a bit of snow here and another patient was being transported to the hunstman for TBI and the mini fan wouldn't make it up the small hill so the security guard made the tech get the wheel chair out and push the patient up the hill!! Can you believe that!! Poor girl, plus she is really little and she said it was really hard. Not only that but the patient is immune compromised!! sheeesh.

lets go at it again...

I got some sleep last night! Rhen slept great only waking up once! I slept at the Ronald McD's apt and that will be nice to have to get out of the hospital for a bit. Chloe was brave and handled me not being there like a champ, we said a prayer and sang a song before I left and she did great. Irradiation went fine this morning, her skin hasn't been bothering her, she just gets worn out, but when we got back she had some pain in her bum area up inside. She got some morphine, and is doing fine now. She was in some serious pain. Her C diff might have come back, they are just checking into it. It is a better day, not so busy and I have had some sleep. The second tbi was funny cause the guy came out to get me and he didn't have chloe so I got a little worried, he walked me back and told me she wanted to stay in there cause she wanted to finish her movie. I told him that he probably doesn't get that request very much to stay in the room. So when I got there she was sitting with a warm blanket and sitting on a chair and watching chip and dale. Funny girl. Chloe is having fun doing some family home evening packets, coloring them and cutting them out. I got all the Temple pictures to make into a book and she has fun looking at them. I am feeling better everyday and will get my workout by climbing the stairs 3 or 4 times a day. It isn't as easy as I thought with a new baby cause when I am feeding him I can't help chloe when she is pain and going to the bathroom, but I think it will get easier once I get use to it. I was on antiboitics and I think that is what was giving his tummy pain, because I forgot to bring it to the hospital and he was great last night and today he hasn't been groaning. He is a cute stinker! Jen you will love having a boy! Good luck with your labor! Much love to you all. ps she spiked a fever last night of 104, but she is doing fine and they are doing blood cultures. The irradiation could cause fevers. so we will see.

crazy, busy day

Today started at 5:30, with only 4 hours sleep. Rhen had a rough night tummy wise, he kept grunting and wouldn't let me put him down. Getting all the things done today that we needed to get done, with a newborn has been difficult. Just takes alot more time. Chloe started irradiation at 8:00 in the morning and I thought I was able to watch her on the tv and talk to her through the intercom but I guess they won't let anyone back in that area. So we waited in the waiting room, Ben and I (the tech). It was hard because it took longer than usual about 1 hour and 1/2 so we asked what was going on and I guess Chloe was wiggly and had to take a potty break. She was so brave! She came out of the office with a proud face on. She felt a little sick after and got a head ache. We had a little break until the next apt at 3 so I got all the Ronald McDonald house set up. I might sleep there tonight since I am stinkin tired! The next irradiation went better, shorter I mean. She came back to the hospital with a major head ache. she was crying alot it hurt so bad! We got some bigger strengh meds for her than last time. It finally kicked in after an hour or so. It was sad to see her in that pain, so we know now she needs meds when she is done. She is feeling great now and is chatty with Addie and Elsie and Dad. I just look at her and think how brave she is. She is taking this on with such stride! I think she realizes she just needs to get through this and kick her cancer cells out and she will be able to be a normal little girl. Well that is our day and it starts over tommorow same time same place. She is already a little darker skinned. It is like a tanning bed. She wants to go to cancun when she is done she tells us! So we are saving up for that trip. Then she can be tan the good american way through the sunshine! (with sunscreen of course) I will keep you all posted for tommorow, to let you know how she does then. Thanks for all your prayers and fasting!

Daughters are Dreamy

I just got off the phone with Chloe. She was exhausted from today but feeling chipper after a power nap so we had a long, nice chat. She told me all about her treatments and the van that is like a bus, but like a minivan too. I told her the Bishop had asked about her on Sunday and she was surprised that the bishop knew who she was. She says "how does he know everyone?" I told her it's just because he sees us at church and lots of people know about her. But she decided that it was because she had paid her tithing and he remembered getting her envelope. Then she asked me if she could do some jobs to earn money so she could pay more tithing.

While i was out cleaning the snow off the driveway yesterday Addie read up in the cookbook and made whipped cream all by herself and put it on the jello she made earlier in the day. It was good jello - we just polished it off. Stacie asked her to help out while she was gone, but i wasn't expecting her to cook. But hey, another cook in the house is always good. When i picked Els up at Julia's today she wouldn't get in the car, she wanted to walk home. So i drove real slow behind her and she made Spence and I laugh all the way home with her silly personality, tromping through the snow and making funny faces. She is a happy girl. I didn't do anything spectacular today other than sell a few doorknobs.

Ready or not....here we go

We are heading down today for the unwanted adventure. We start bright and early (6 am) on monday! Chloe has been asking more questions about her BMT and relapsing. I am glad because it helps her realize that it will help her. She told Jake last night that she was excited for her BMT because she gets a party and she can play with Mike (the child life coordinator). They make it really fun for her since it is going to be difficult for her.

When she gets her BMT they put a calendar on the door and people put in a dollar and the date they think the cells with engraft. Who ever wins gets the glory and Chloe gets the money. So if any of you want to tell us when you think it will engraft we can put the date on the calendar and put a dollar in the envelope. There is alot for us to be concerned about with germs. The food she eats has to be prepared at the hospital, no deli meat or meat. No salad or fruits such as strawberries, anything that can't be washed really well. No soft cheese. Her birthday is this month and I have to buy all new ingredients to make her cake. When I do make it I have to freeze it and then take it so the hospital can get it to just the right temp before she eats it. Anything I bring for her food wise needs to be individually wrapped and if I cook it I need to freeze it because the hospital has to bring it to the right temp, just like her cake. All her clothes we bring have to be put through the dryer and immediately put in a garbage bag. I had to go buy all new books and activities she would like cause they have to be new and put in a bag as well. No used books. She can't have visitors that are younger than 14. Even brothers and sisters, except in Rhen's case they make an exception. So...wow, there is more stuff but it would go on and on. My head was about to explode this week with all the meetings. And luckily we have insurance cause the BMT is about $265,000. And that doesn't include the doc fee's and such. Her BMT is on the 15th, it will be her second birthday! She is pretty excited to have two birthday's. Thanks for the special fast for our family today! We love you all! We say ready or not.. bring on the BMT...to get chloe better!!!

The 4th day of 2008.

The Doctors checked Chloe out one last time today to make sure she is in good condition to go throught the BMT. Lucky there has been no apparent damage to her organs from the chemo she has had. Her blood counts are great this week so she is in good condition to get started. Monday at 6 AM we're checking in with 3 days of irradiation twice a day and then 4 days of Chemotherapy. After that she gets a day of rest and then the transplant the next day. It generally takes about 3 weeks from the transplant date for the new stem cells to engraft and start producing new cells in her body.

Chloe will have a strict diet for a while. Everything has to be individually packaged or prepared by the hospitals special BMT kitchen. She can't have deli meats and cheeses, salads, and only fruits and veggies that can be cleaned really well, all cooked items have to be cooked by the hospital kitchen to temp. There are a lot of other restrictions but i just don't want to type them all. I'm lazy. If anyone wants the comprehensive list I can make a copy for you. Another interesting thing is that she will not be able to use a tooth brush for a few weeks as it can irritate the gums to much for someone with such a low immune system. Crazy low immine system huh?So she will have to use a swab and mouthwash many times a day instead.

Chloe is in pretty good spirits. It has been really nice that her counts are up as she has been able to play with her sisters and some cousins a bit the last couple of days. I know she is a little scared - so are we - but we all know this is what she needs right now. We talked all about the BMT last night and she seems pretty comfortable (maybe understanding is a better word) with whats ahead. Someone gave her a little fuzzy pink diary which she writes down her thoughts in each day. She is a cutie writing in it with her sparkly purple pen and trying to spell words like nupogen.

From what her Doctor explained today she is coming into the BMT in a really good position so we really hope it all goes well. Some of us will be fasting for her tomorrow if anyone else would like to join in. We sure appreciate all the prayers and fasting her her behalf already.

On a funny note, early this morning i was at the grocery store. The parking lot was empty and as i came out of the store this other guy ran and got into his car. No one was parked around him so he just took off forward through the other stall rather than back up. Only problem was, there was a light pole right in front of him that he didn't notice. Since he floored it, he hit the pole really hard and bounced back. Embarassed, he looked around to see if anyone saw him and I was standing right there. His surprise was quickly replaced with embarassment and he quickly drove off. I didn't mean to laugh at his expense, but after he left - I did. Just a little. Not outloud.

One Day Closer

I didn't mention this to Stacie the other day [which i have been chastized for] but on Friday they saw some blast in Chloe's blood samples. The blasts are the cancerous cells and she can't have any in there before going through BMT. I was really worried about it, but when I asked the nurse she said more than likely it was the nupogen shots she had been given that caused the abnormality. She had the shots to boost her immune system, but apparently they can cause a blood test to indicate blasts - so they have to do further testing. She had gotten so many nupogen shots I thought that had to be the explanation for the blasts and the docs didn;t seem to be worried. After investigation they found it was caused by the nupogen and we were very happy to hear that. Still, i should have told Stacie - lesson learned. But at least she didn't have to worry about it, right? So really i was being very thoughtful.

Chloe got a shiney new picc line yesterday. She is not excited about it and I don't blame her one bit. I'm sure it's just no fun having little tubes hanging off of you especially a picc line in right on the inside of your elbow joint. Today we had several meetings with different parts of the bone marrow team at PCMC to discuss what coming up. It was information overload, but we understood more this time than we did at her initial diagnosis so i guess that is a good thing. We're back again tomorrow for the official road map and all the detailed explanations of possible side effects and outcomes, it should be a splendid day.

According to the BMT case manager, the donor cord blood is on a plane right now and should be safely at Primary's tonight at 8:00. Unfortunatley we will never know who donated it, but we sure are grateful they did because it's giving our Chlo-pie a second chance.

Happy New Year!

... that's all i've got. Title says it all.

Radiation Treatment

We went down yesterday to meet with the radiation team at Huntsman Cancer Institute ( boy is that a nice institution) We were told about the side effects and how she will be placed to get her treatment. As a mom I tried to stay brave but they took us into this cold scientific space age type room and put her onto a bike seat against the wall. She has to be all by herself for about 40 minutes to get her treatment and I thought of leaving her there all by herself and just cried. I couldn't let her see me cause then she would be scared to do it. Wow, I wasn't prepared for that. She was so brave. While they took x-rays in the room and we had to leave her there by herself. I saw her in the monitor outside the room, she was alone and being so good. My heart broke and today I still get teary eyed about it. On sunday the Stake Presidency visited us and gave us blessings. They were wonderful blessings. We appreciated it very much.
We have to go down wed. thurs. and fri for more preperation meetings. Wow, this is really happening. I am scared and comforted at the same time. Thanks for all your prayers and please keep her and my other kids in your prayers as well, if you would, these next few weeks. Thanks so much!