Stir Crazy

Chloe had a rough day on thursday, not sick, but emotional. She had a few break downs of crying and saying it is just not fair. Since the weather got cold she can't go outside and play as much, so being couped up here has gotten to her. She complained of having to stay home all the time. So I took her out with Addie and got some ice cream at Caspers, and did a little holiday shopping at a store that isn't so busy. She was able to release some stress through fresh air and some laughter. They are some giggly girls, which made me happy to hear. We had a good time so Jake and I decided that it would be good for her to take at least two days a week where she goes to work with him, since there is only 3 of them there, and do some blogging and what not. I didn't realize how stir crazy she was getting because of the weather. She tries to stay so strong, but I realized that staying coupe up + steriods + Elsie (some days) = not so fun times for chloe. Elsie just pushes hers and Addie's buttons and since Elsie is the only one she can play with a lot of the time, it gets to much sometimes. So she is doing better now that she relieved some stress. Nurse Hillary called yesterday and told us on her next visit she needs an infusion of IVIG, which is antibodies. It will be a longer visit, so I will need to find a good book, any suggestions?

A clinic day

We had our clinic day yesterday and Chloe looks great. Her white blood counts are doing really good. 10.4 compared to some days last year at .5 or lower and her platletts are over 150,000, which they have been as low as 25,000, so that is great! We are excited about that. Getting her new bone marrow, however, has caused a new allergy which can happen with new marrow. Every week or so she breaks out in a major bumpy rash and her chest hurts and it itches a lot. I took a picture of her lastest out break and they seemed concerned and that we need to figure what it is. The rash broke out this weekend two days in a row. I have been racking my brain. So we will be trying to figure out what the allergy is linked to in the next month, she told me she likes to solve mysteries, maybe she will figure it out.


Last night we went driving around to see the christmas lights, Elsie kept saying "holy crap, that is fancy" at every house decorated to the max. Over and over. So at the end of the night she let us know that she has a new word, holy crap. We figured as much.

Thanksgiving

Stacie made a great Thanksgiving spread again this year. She was busy preparing and cooking pies all day before and made a great turkey dinner the next morning. We have this agreement where she cooks, and I eat it. It's been working out pretty well so far - especially for me. I did help with a couple of things, but she deserves the credit. It was just the 6 of us at home this year, but we enjoyed just being together. We burned calories just watching Elsie be herself. A couple pieces of pie wires her up. Actually, she doesn't need a couple pieces of pie. You can tell in this pic she was already hyper with no food in her tummy at all.


Friday we went up to WY for the annual Christmas tree extraction. There was very little snow this year in comparison to years past, but we could tell winter was setting in, it was really cold. Here we are after dragging our tree down the mountain. Chloe was the driver, I was the trailer hitch. We forgot to take our camera up for the tree hunt, so we just have a couple of pics when we got back to the car. Addie and Elsie were too busyy playing with cousins to get any pictures. Rhen was a trooper and didn't cry at all as we hiked all over. After 45 minutes of hiking in the cold, all the trees start looking better and better. We look forward to this every year because most of the Englands show up to get their trees as well. It makes for a fun outing with lots of laughs. I always remember the year Josh had the flu but didn't tell anyone. So we're all looking for trees and he's sneaking behind them to puke. That goes to show you how fun family traditions are. Even though Josh was puking, he just couldn't miss it. We were sad to have to leave when the entire family was together and making lots of tasty food; but really happy we were able to see them all, even if it was just a couple hour visit.

Here is Rhen - cute like his mommy. The tear on his cheek was from when we got him out of the car and bundled up. It just kinda froze there on his cheek and didn't move. Yesterday we wired up the tree and got it all decorated. Looks nice there in the corner next to the fireplace and fills the room with a pine scent. Crazy Christmas is here again already.



Hope you all had a great weekend!

Aunt Kinsey

The girls have been looking forward to a visit from Aunt Kinsey all week, so when she stopped by today they were super excited. While Addie and Elsie were at church Kins washed Chloe's hair and they got matching hair styles. Kins was pretty busy her whole visit playing games and looking at everything the girls wanted to show her. They Love ya Kins, thanks for stopping by!

I have been reflecting on the things in my life I am thankful for, this year more than any other year, most likely because of the past year our family has had. I am grateful for chloe's cancer free life, she is a fighter and I think of her example everyday. I am greatful for my whole family(especially Addie and Elsie) and lots of friends that has struggled along with her, visited her, helped me at home, helped us laugh and prayed in our families behalf. Now that our crazy year is coming to an end I feel thankful to be more myself. Stress is hard on emotions, personality, and just doing day to day things. I am grateful to feel excitement for things in life again. I am thankful for the things I have learned through cancer and hope I never forget them. For Jake, for being Mr. Mom and holding down a job while I lived in SL. He never once complained when I couldn't stay at the hospital with Chloe, for weeks at a time, while I was pregnant.

Chloe writes in her journal, for school, everyday. I told her this week needed to be about what we were thankful for, so she wrote she was thankful for the doctors and nurses that have helped her get better. Because without them, she wrote, I couldn't get better. We are thankful for all those who helped her for the past 3 1/2 years.

I AM grateful for this year because it brought us closer and we know things that we couldn't have learned any other way. Happy Thanksgiving to you.

picture: chloe is sporting new glasses!!

Just a chillin'

We caught Rhen buying a winch and a snorkle kit for the cruiser the other day. He looked pretty guilty. Luckily his daddy is a sucker for that kind of stuff and didn't mind to much. Rhen is going to have to start selling some doorknobs to pay for his habit.

Elsie gets a hold of the camera every once in awhile, well all the time and I have to go and delete all the random photos. But here is one she took of Rhen which is stinkin cute (below). Then addie likes to get his hair wet and do all sorts of hairdo's to his hair (above). He pretty much is one loved kid.

It was the night of the election. Addie, without us knowing was keeping a tally of the progress of the election. I found this the next day and thought it was pretty cute. Her keeping track and all. With her election this year she has learned a lot about presidential elections and was giving me definitions of electoral votes and such. She also in her class got to be a great american student by learning all states, capitols, writing the pledge of alleigance, and knowing where all the states are on the map. She is such a smartie.

taper paper

Yesterday was clinic and Chloe looks great. We got the prenisone taper!! It will be a three month slow taper but I hope the GVHD stays away this time. We also have to wait at least 3 month after she is off steriods and her anti rejection meds before we can think about school and such. So we are hoping for the best. Jake took her again because Rhen has a runny nose and fever due to teething. So as I talked to Jake on the phone on the way to clinic he informed me that at the LW gas station in Brigham city, along with the gas and mountain dew you can purchase, you can pick yourself up a nice 4 ft doll by the register. You either have your choice of the frilly girly doll, with lots of lace, or you can get an indian girl with the whole getup on. Now this is just a helpful suggestion to those of you who are last minute shoppers who go get gas and think, "dang, I forgot to get my daughter something for christmas." Well if you are anywhere near the LW's in Brigham City you don't need to worry.

So as I mentioned before Rhen is teething. He is getting three of four teeth, which I am thankful for, all my other kiddies didn't get their teeth until 14 months and in Elsie's case didn't get all her teeth until she was almost 3. It is very difficult for Rhen to teeth. He cries a lot can't deal. I am thinking of putting him in a T.A. (teethers anonymous) meeting so he can talk with other babies who are teething so then maybe he won't cry so much. Ibuprofin is his drug of choice, tylenol just won't cut it. So the days ahead are going to be a struggle but in the end we will have a pretty cute toothful grin!
Another thing about Rhen-man is that he learned his first word. I have tried to get it on video but as you fellow parent's know they never perform when you need them to. He learned the word ahh-oo. When he drops his bottle or toys he says ahh-oo. As my sisters can attest my other kids would say a random sound and I would make it into a real word like "oh she said this or that" but they really didn't. So this is how I know it is his first word cause he knows what it means. It is really cute!

We are all doing great. I can' t find the cable to download pics to the computer so I don't have pictures to display. I have some that I want to tell about but that will be for another time. So for now it is just words.

show and tell

Chloe's turn for show and tell in her class room was last week on friday. I broke down and let her go just for 15 minutes. I put a mask on her and gloves and she had a great time. She showed her class how much she loves to paint and read. Her favorite book, Miss Piggle Wiggle. They asked her to paint a picture at home so they can display it in class. She had a good time being there if only for 15 minutes. She also got to be the helper of the (15 minute) day.

The web cam isn't quite working how we thought it would. It might come down to not doing it at all and me teaching her what the kids are learning in school. We only see a 4inch by 4 inch view of her classroom, it is very confusing, hard to hear and we can't see anything they are writing on the board. She gets bored easy and I have to run back and forth between her and Rhen getting in the toliet and upstairs so I can't help her understand what they are saying. It is hard figuring out what project they are working on and never have all the papers they are handing out. It has just been more stress than I thought it would for her and for me.

Stormy clinic day (weather wise anyway)

I remember when chlo was first diagnosed in 2005 and every week we had to go down. Every monday, it was in the begining, and it would rain. All those spring rains would come on that day. I remember thinking that the heavens were crying for our Chloe, and so yesterday was a reminder of that.
Jake was nice to go to clinic for me yesterday, it was stormy and he didn't want me to take Chloe and Rhen in the blizzard of a day. It was nice to have a break and to get out with my good friend Julia. Chloe is doing very well her counts are great so they will start a slooow tapper of her steroids in two weeks. We have a love, hate relationship with steriods. It helps so much with different things, but it alters them and breaks our hearts to see her change shape and personality. We are glad for the tapper.
Chloe asked Dr Pulsipher yesterday if she could go skiing this year, and he said, "well I don't know about that." (thinking of Salt Lake resorts).
So Jake explained where we live. That we only have Beaver ski resort, and during the week there is nobody there. He said "oh I have been to beaver that won't be a problem during the week, there is no one there." (poor little Beaver Mountain, although it is a great place for kids to learn and I guess me too :). She was super excited!! So I added footage of her first year skiing to get her, and the rest of you ski bums pumped to ski this year!!

Having Chloe able to go skiing and go trick of treating, makes me want more. I want her to go to school, maybe for just one day a week or two, with a mask and gloves, of course. But no that wouldn't be safe and so it just won't happen. We were given an inch and I want a mile. And so I have to change my mind set, think of good things. We are on the down hill, normal life hopefully soon. She is doing well, and has lots of energy. I am thankful for that.


I'm pretty sure this was Chloe's first day two years ago with Addie, Jake and Aunt Kins. Chlo was able to watch Addie and picked it up so fast.

TRICK OR TREAT

We were excited to celebrate halloween this year, because Chloe was actually allowed with some convincing on my part (to the docs) to go out to a few houses. Here are some pics of the night. It was such awesome weather they didn't even need coats this year. That has never happened in Cache Valley in the 9 years we have lived here.

Rhen was happy, at first, to be the elephant that I had from when chloe was little but as you can see from the pics he just wanted it to be off. "sissy elephant".

Elsie is Erika from the Princess and the Popper. Her wig is as big as her whole body. I was worried she wouldn't be able to hold her head up straight. Of coarse she loved it and swung her head around over and over, and acting out (her dramatic lines) from any movie she can think of.

We were sooo excited for Chloe! She was sooo excited for herself to be able to go out on her favorite holiday! She was a nurse (we have all the get up for it so we thought we might as well, plus she had to wear and mask and gloves). I let them have their independence this year and go by themselves to a few houses. Then Addie dropped them off and went around some more.

Addie wanted to be a scary nurse, a vampire nurse. She takes peoples blood, but not from a syringe, but from her teeth. bbbbhhwwwaaa--hhhaaa-hhhhaaa!!!

We hope you all had a fun and safe Halloween.