last day of the 4th for Ads

Addie is excited it is the last day of the 4th grade, but wants her teacher, Mrs Dattage, to go to the 5th grade. She really liked her.

It was a really hard year for our family and Addie stepped it up and was able to take responsibility for her own homework, tests and other problems that came up. There were many times when we had to drop everything and head to SLC for Chloe. She rarely complained about having to give up certain activities or missing out on events at school to do so. She is such a good big sister. I'm sure it was not easy for her to be herself and try to live a normal life with everyone always asking her how Chloe is doing - not so much how she is doing. But she was always supportive of Chloe and understood that we didn't have a choice in the situation and that we would just have to do our best, work together and pull through. It was hard for her to not have a whole family together and not have her mom there (in person) to help her and talk to for weeks at a time. Doing that by phone is great, but it's just not the same as having your mom there with a shoulder to lean on. Addie has had to sacrifice a lot over this last school year and probably doesn't get enough recognition for being such a tough and good girl. We are very proud of her for being a good example to us and doing so well in school despite all the chaos. She has grown up through this whole thing too, and so we say "good job Ads!!" We love your guts! I'm serious.

grateful

I noticed yesterday I refer myself to others as, "I am Chloe's mom". Whether on the phone with the Doctors, using the phone to get into the I.C.S, other mom's at the hospital or others I may come in contact with. My eyes filled up with tears to realized how proud I am to be Chloe's mom. Her sweet spirit, her ability to fight cancer twice, her determination and her cackle laugh. And yes even when she never wants to eat the food I make I am grateful to be her mom. She is my hero. She downs 20 pills a day without complaint and heaven forbid if I forget that dang magnesium pill! She itches all over and doesn't complain, I have to ask her if she would like me to put some cream on it as she itches and doesn't speak up. I complain sometimes that I can't go very many places, well she can't go even less places and when I tell her she can't go, she may be sad, but that girl rarely complains. She is a deep thinker. We had a family home evening a couple of weeks ago about talent's and we all wrote down talents we thought the other members of our family had. Elsie said that Chloe has good manners. So that week we were suppose to work on one of them so they don't go to waste. Well we all pretty much forgot, except chloe. We were in the car eating after clinic and I gave her some food and she said thank you. She said, "I have been working on my talent of having good manners this whole week!" I remember her being so polite the whole week and never gave it a second thought. She is such an example. Then today she went and unloaded the dishwasher without me asking! I am grateful to be her mom!!

Well, she just informed me that when I pick up her pills she would like some rolls, pink milk powder, and animal cookies with frosting. Those are her list of favorite things to eat right now and she wants them all the time. So off I go to get my chlo-pie some goodies.

chloe, the marketing expert.

Driving to Salt Lake for an appointment we had this conversation:

Chloe, out of the blue: "I just don't get it Dad!" (with a little anger in her voice)

What's that Bud?

Why does AT&T think they are so much better than everyone else?

What? What do you mean?

Well, they are always saying how much better they are than everyone else and how their network is better than anyone else's network. I don't think there is anything wrong with T-Mobile!?

So we had a short lesson on economics, competition and market share. I was surprised she had such strong feelings about services she hasn't used. Good for TMobile that Chlo is watching out for them.

clinic appointment

Chloe had an appointment today and it went pretty well. She had to have an infusion of antibodies (didn't even know they infused antibodies) She doesn't have enough of them to fight infection(to bad they can't just give her a whole bunch so we would't have to worry so much about her getting sick :). Kids with cord blood, usually get 5 or 6 in the first 18 months after BMT. Chloe did well, and seem to have no side effects. They premedicated her,w hich I am glad. It went faster than planned (there wasn't as much to infuse as they thought) which is good so she wasn't so bored out of her mind, because she can't be in the transfusion room where all the movies and tv are. She can't fight infection so they keep her away from all the kids there, so they had to do it in the doctors office rooms. She asked every ten minutes when we they were going home.
Her levels for GVHD look good so we are back on every other week clinic visits. We aren't tappering her meds just yet, they want to wait one more doctor visit before starting that.

School is out in two more days!

all about hair

We just wanted to show everyone how much hair Chloe is getting! I could actually spiked it up today! She was pretty excited about that. It is so dark!

Elsie's long hair just had to go for the summer. She would scream every time I brushed it and I got tired of hearing her high pitched scream. So I chopped it off! I think short hair suits her personality better and it looks learry cute!


Today at church Jake asked Elsie if she got her big brown eyes from mom, and she said, "No dad, I got them from Jesus, mom can't buy them for me, Jesus made them."

The Rhen Man

Jake thinks it is really cool to have another guy around the house. He takes pics every chance he gets so we thought we would post some. He has such good smiles for us all the time. Even if I just look at him he smiles!




I got Rhen all dressed up for church last sunday. He looks so stinkin handsom and along with that smile boy he is going to get away with stuff, I just know it!

school cam

I talked to the school about Chloe's situation, they have been really nice about it even though they have never dealt with this situation before. We decided to enroll her back into school and have a web cam placed in the classroom, and at certain times, when math is being taught, we can go in and turn our cam on at home and she can sit and listen and learn. I hope this will work and the teacher she is given will be on board with this. They are getting a new principle next year and I hope he is too. I just talked to Mr Larsen about it, and he said he would inform the new principle about it. So this will be good and give her a connection with school so if the doctor says she can go back in the middle of 2nd grade she can easily adjust. Although we can't count on that happening. Chloe is excited about it.


Jaked mowed the lawn today, it was long.

popsicles please

Jake has made it a craving amoungst our family, to have yummy pace bars! Asking for a popsicle has become a daily routine. And we love to share, so the neighbor kids love them too! Kyler comes and says "stace, can I have a popsicle?" and those of you that know Ky will know his exact facial expression and could never say no to that! The favorite is red and you can see why! Now I am a rootbeer flava girl myself (they have way more flavors now days) but they are all enjoyable. Now if the weather would stay warm for longer than 1 day or 2 days, we could enjoy them all the more.

close one

So I was all in a worry today when I took chloe's dressing off and there was a huge rash underneath, and thought I saw a blister! (gvhd gets worse if it blisters) so I called the doctors about it but they were busy so they needed to call me back. So I was waiting to put her dressing on until I heard from them. I waited longer than an hour and needed to put the dressing back on. I told chloe to let me see if it is getting worse when I realized it was just her scar from her last central line. wheeew! I just put the dressing on top of the rash which wasn't pleasant for her but hates to go without it covered up. I can't wait to get that thing out but she hates to get poked sooo it will stay in until she doesn't have to go everyweek. Which I don't know when that is.

Has Anyone Seen This Man?

This is my brother Josh. For the last 32 years he's made my top 6 list of most influential siblings.

We just wish he, his wife Stacy or any of their five girls would update their blog. Come on, throw us a bone. Talking on the phone is all fine and dandy but we need photos, video clips and that sense of humor that only Josh has.

clinic apt

yesterday was clinic. I left Rhen with Jake because it was a long day. Her clinic appointment went good and her levels are coming down so when we visit next week and if her levels are still down she can taper the tacro! One of her immune suppression pills. Then we had an eye appointment to see if her eye site changed or got any cataracts from treatment. He found a little scar on her right eye. It could be caused from radiation or an infection. He says it is old, which means it appears white and not red. He says it isn't anything to worry about right now, but we do need to continue to follow up in a month to see if it gets any bigger. So we will see. He said sometimes when there is a scar you always see a small black dot, but hers is small enough it might not bother her.
So on my way home Jake said the Rhen was pretty fussy. When I got home, and thought he just needed to see me, which he was happy to see me but then he still was fussy and I decided to put him in his jammies and try a nap. Right after I took him out of his clothes he was happy and smiling. So I guess he doesn't like overalls! haha

Preschool Graduation

They let Elsie graduate from preschool! Now on to kindergarten? crazy.

wanna go for a bike ride

Chloe was been feeling better the past few days, maybe it is because she is ,aahh, eating! The medicine to increase her appetite has worked we like that! So Addie, Chloe and I went on a bike ride last night and Chloe had to stop and rest a lot since her legs aren't back to normal yet. We were going up a hill and she had to stop and she causually said sort of puffing, "I need to workout." I laughed and said well you kindof just went through a big deal. So she just said, I know but I still need to workout.

pumping gas above the clouds.

I was lucky enough to be invited by Marcus to come along on a jet refueler training flight the other day. Marcus has had a tough road the last couple of years kind of like Chloe and recently had his Make-a-Wish day which invloved the military and fighter Jets. He was also invited to go on a refueler traning flight and bring some friends. I was lucky enough to be invited - thanks Marcus. Marcus came in his cool new flight suit complete with his own wings. I was impressed with his knowledge of all the different types of jets the Air Force uses. It was an educational day for me because I knew absolutely nothing about it. If you look closely you can see the pilot was reading Pride and Prejudice while he was waiting for his tank to be filled up. They have to be real careful cause if you drop the gas cap at this altitude, you're in trouble - army dude has to shimmy down the boom and stuff a rag in the spout, it's windy- just a raw deal all around. Premium Unleaded only. Pretty crazy this guy is only about 20' away from the big plane packing fuel.

The plane that we were in was about the size of a 747 and competely open inside for cargo. There is a pod in the back where the boom operator lays down to refuel the jets. We were able to crawl down there to get some photos and watch them do it. It was pretty amazing to see. The fighter jets were from Boise on a combat training mission and took a break to come get some fuel. You can see their bombs and guns mounted on their planes. I think they refueled 6 of them while were were up. It's a little unnerving to be in a plane that not only has it's own fuel, but something like 80,000 lbs of jet fuel in its wings, belly and tailfin. Seems kind of like an explosion waiting to happen in the air, but we made it home so I guess it's all good. Thanks Marcus, that was a super cool day.

PS - if you are on a military base, don't take any pictures unless you can prove that someone gave you permission to do so - there is a good chance that some security dude thats been on his shift for too long will jump out of his truck and scream at you as if he'd told you 10 times not to take any pictures. Apparently there was a sign posted somewhere. We should have known i guess, but they told us to bring cameras.

Wellsville Mile

Addie was so proud of herself, and we were just as proud! She finished the mile without stopping and finished the race in 54th place, out of the 4th grade girls. The Wellsville mile includes all the 4th and 5th graders in the district. It is a great tradition and their were alot of runners.
She got an award, a big liter of lemonade and got to keep her number. She was running so fast I could hardly get a picture of her. I also tried to make it to the finish line before she was done, but pushing a stroller and trying to keep Elsie with me, and all the people that were there to get around, made it so we didn't get to see her finish.
She did an awesome job! She wants to practice all year so that next time she can get a medal, I think that is a great idea! Go Addie!!

It could be better...but it could be worse

There are more signs of GVHD for chlo-pie. So we have to go down once a week to keep an eye on it. At today's apt they checked her levels, and they are elevated a bit so we need to keep her on her liver medicine, which she was so hoping to get off of but she can't. She lost some weight and won't eat hardly anything. That is also a sign of GVHD, loss of apetite. So before they get her on steriods, which the nurse practioner wanted to do because of her levels, the doctor wants to try a medicine that simulates her appetite. She has been on it before when she lost her 10 pounds in the begining and it worked then so hopefully it will work. Steriods just aren't fun. Although it was frustrating news we are hopefull that it won't elevate even more. Her counts are low so we are keeping her inside, bummer, just when the weather turns nice. Addie was sweet today and stayed in and played with her when she could've gone out to play.

Rhen is cool

On saturday we were out working in the yard and Rhen came out to give moral support. It was so easy to work on sprinklers and pulling weeds and moving shrubs with that face to look at!!

so happy together...

Chloe has been feeling pretty tired the past few days, but of coarse won't slow down. She says she is tired but wants to keep playing. We went up Providence canyon for dinner with Spence and Tal, rode around with 4 wheelers and ate some dinner. Although it was short we had fun. When we got home she just wasn't her happy self so I took her temp. She had a fever, but not high enough to call the doc. I was so worried that we would have to go to Salt Lake and not be together for mothers day. Luckily it never got too high, but she is still tired and needing rest. I know she is tired when she gets upset and raises her voice to us. That just isn't her and she has done that for the past few days now. She won't eat much and she is losing weight, we try but it is a struggle. Hopefully she won't need a feeding tube or TPN. Even when we are home things are a constant worry for me. But we are here for mothers day and that alone is the best present.

Happy Mothers Day to all you wonderful mothers!!

Moms are Marvelous.

This is a bit early, but as it turns out (if you read the last post) i'm the type of guy that remembers useless things and sometimes forgets the important stuff. As a result, I try to just do stuff while i'm thinking about it because I know there is a good chance I'll forget later. And its more of a surprise if it's not right on Mother's day right?

So, i came upstairs tonight to find Stacie, Ads and Chlo doing Yoga. Lights low, soothing music in the background. This is the 3rd or fourth time I've witnessed this mother daughter bonding moment as it's one of Stacie's routines.
So today i decided to capture some of their sweet moves so they can look back and remember what a great mom she is. It's fun to see girls that want to be so much like their mom. I wish I were more like her too. Love ya Stac. I'm not kidding.





By the way... Not sure who said it but apparently: Blessed are the flexible, for they shall not be bent out of shape. Thats why I bend over to get a popcicle out of the freezer as often as possible and flex my muscles for Stac every chance I get.

Mom, I tried to find pictures of when you taught me, Zach and Josh how to crochet and we were all sitting around crocheting slippers. But I couldn't find any. Man those were comfy slippers. Soft yarn blend, moderately loose stiching pattern = delight.

Love ya Mom.


Ya, my mom even taught me how to crochet, and I'm cool with that.


Hey someone email me on Friday and Saturday so i don't forget the actual day of Mother's Day.

update

chlo has been doing really well, her rash is clearing up with the creams but if I forget one time it gets worse. She gets really tired after playing so hard all day long but that is a good thing. We go back to clinic in one week.

Elsie wants to go into business with Jake, and call it Jake and Elsie's. She wants to sell faucets, car statues and doorknobs! She has her showoff days at preschool where we go and see what she learns, she has told neighbors that preschool is boring, but going and seeing her at school she is always being told to sit down, come back or don't do that. So I can see how it seems boring to her curious personality.

Rhen lost his voice and it is hard to hear him cry. No strep, just a red throat and possibility of allergeys? (crazy). Anyway I thought I could try to help him get back to sleep better when we came home but now with his voice gone it breaks my heart to start the crying it out technique. So that will have to wait, I have to go in his room alot to give him his binki when he wakes himself up ( I don't really like him being a binki sucker in that reguard).

Jake never ceases to amaze me, on sunday I was looking at a magazine and it mentioned the word "ZEN" and I have heard people refer others as being zen, so I said what is zen anyway, not expecting an answer, but Jake so matter of factly said, it comes from the Japanese word, Keizen meaning continual improvement. I looked over at him as he was just casually looking at another magazine. " How do you know that?" " I read it somewhere." Why is it that he can remember something like that but not remember things I tell him? I was pretty impressed though.

Addie is training to run the wellsville mile, the day of clinic, so I won't be able to see her run it. she is pretty excited about it but says she always gets side aches and breathes really hard. I showed her some breathing techniques that help me and she says they are working a little. If you walk the race you will be disqualified. She was worried about being able to run the whole way, but I know she will do great!

As for me I am feeling good and glad the weather is nice so I can get out and get my hands dirty in my yard! It has been fun to be home and I am gradually getting back into my normal routine, which makes it less stressful. It was also good to finally go to church and see familiar faces!

takin it easy

Today has been a great saturday! Elsie a few days ago learned to ride her bike without training wheels! We didn't even have to teach her, she, the crazy girl she is, just got on the bike and took off. No holding or coaching! We couldn't even get her to slow down for a picture, she was off doing all the things addie and chloe were doing. She hasnt' been off of it since. Everyday she wants to ride it!

This morning Rhen woke up pretty early, around 6:30 so he and jake went up in the mountains fj style. The ride was soo smooth that Rhen slept the whole time (the old ones are a little loud and bouncy). A lot of guys have hobbies such as boating, hunting, sports or other things. jake has his cruisers! Old and new we love them both!

Make a wish girl

At Make a wish they have a room with 24 or so black and white pictures of wish kids and their story. They sent us a big photo to Chloe of her and a letter saying it is hanging up in their building and thought we would want a copy of it. I thought that was great and we will go see it hanging up on our next appointment.

The other day her GVHD rash got really bad and it started to worry me. It was burning and it had spread to her tummy and all over her legs and arms. The treatment we were suppose to use the pharmacy had to order so we had to wait a day or so. It was really worrying me, but when we started the creme it started to work immediatley. So I was very relieved! Hopefully it will stay away.