unexpected clinic

Thursday we called her bmt doc because of concerns of her picc line being infected. We went down to clinic the next day, she is fine but her GVHD which is exposing itself with rashes and open sores is not going away (not to mention she has ezcema all over her body as well)! they upped her steroids, and her anti-rejection meds, and I have to changed her dressings daily with new cleaning stuff and put creams on her body three times a day again. Geez, this doesn't ever seem like it will end!

oh the joys...

Elsie has been having a few difficult days. When she get's tired she gets naughty. Two nights ago we went in the garage to find blue crayon all over our cars. She insisted she didn't do it that her imaginary friend elsie did it. Well we made her clean it up, then go to bed. Yesterday she still insisted that she didn't do it and went off to school. I get a phone call from the school later, it is the principal saying Elsie is here in his office. In her class you get three warnings of bad behavior and on the fourth you get sent to the principle. She told him the reason she was bad is so she could go home. I talked her into staying, and thought I would find out what happened when she was done with school. I actually kind of laughed about it, until later. So I picked her up, and by the way she acted like nothing ever happened, she was her usual uppity self. So I asked her what happened. She began to tell me that her friend told her they should get in trouble so they can get sent to the office. So she said, "I didn't want her to feel bad so I did it to. She made me do it."(oh peer pressure starts early!)
It is really hard to reason with a five year old who is named Elsie, but I tried anyway. This when I started getting frustrated. I was still frustrated that she drew all over the car, and now she was screaming at me that she didn't go to the principals office her friend made her. Well the explaining I did for that reason and the fact that I told her she won't be able to go to her aunt Tal's house well she just full on went crazy. So after lunch I sent her to her room, obviously she needed a nap. She refused to take her nap and screamed and kicked when told to do so. She stayed in her room for quite awhile.
Addie came home, and told me that Elsie confessed to coloring on the neighbors side of the fence too. I had her clean that off and while doing so she told me she did color on the cars. I thanked her for being honest and told her she could play in the backyard but with no friends. Next thing I see is her out in the other neighbors yard jumping on the tramp with them. I called her in. She explained she knew I would get mad but did it anyway. So to make this long story even longer, haha, she threw two or three more screaming fits and was sent to bed. I thought she would just fall right to sleep but no, she was up until late pretending to read. Well at nine oclock or so we get a phone call from the Jones's explaining they found a blue crayon in Kylers pocket, and told us he said he did the crayon artwork, and Elsie wasn't there. I am not so sure she wasn't there, because she new where all the crayon marks were. Anyway it was a crazy day yesterday, and this morning Elsie told me the story of the boy who cried wolf, and I asked who told her the story and she said Dad.
All in all it was pretty funny, except for her screaming and kicking tantrums ( I hate those!)


btw: this picture was taken when we got the travel kennel for the dog and Elsie wanted to see if she fit in it.

moose's new trick

yea we have a smart dog, not only can he rip pillow fluff (above picture) to make himself a bed, he can also do this... (sorry it is in two videos, I stopped the first video by mistake to early). We think our dog is pretty cool.

do you remember when...

It is always fun to look back to when you were a kid and say oh do you remember when we did that, or do you remember when you said that. Jake always remembers his dad saying, "Whud ya learn" whenever they did something wrong (and got caught). So now, us as parents will be remember for things we say. Our kids will remember their dad always saying, "look over there kids, sure is pretty, we sure live in a pretty place."
When we are in the car driving sardine or skiing on the slopes we can count on Jake saying, that sure is pretty. Which is great, he has such a postive attitude, it just struck me yesterday while we were skiing at the Beav and after he had said it three times already, so we tease him! (Hey Jake, your sure are at a pretty place in this picture!!) We love you!

this and that.

This kid has had a rough week, he won't let me put him down and he cries when I do put him down. He won't eat, and started throwing his food across the room. He has a new game where he smacks me in the face whenever I am holding him. He thinks it is pretty funny, but me, not so much. So I started giving him little taps back or pushing his head back, and he thinks that is even funnier, so I think we are not going to get him to stop that game (not very smart on my part).

The other day was garbage day adn cute Elsie, came in very excited and said "look what I found on the ground!" She had something on her shoulder and all her treasures in it. Someone had thrown away a plastic drapery holder that has a handle it must not have gotten dumped so she thought it would make a good purse. One mans garbage is another Elsie's treasure.

We will be going private

We have debated for a long time to have our blog private, and haven't done it for the fact we felt Chloe's courage of battling cancer could help someone, and to let people stay informed of her treatment and well being. She is now in a good place and we hope battling her cancer is over, and since things have calmed down we are making our blog private. We will make it private in a month, so if you know we don't have your email and would like an invite, comment and let us know. We are so thankful to prayers said inbehalf of our family, and support and love we have felt through the toughest thing our family has to go through and hope Chloe's story, her courage, and her sweet spirit has helped someone.

a monday clinic day

Chloe had an eye appointment scheduled for her year evaluation and you don't mess with the eye doctors appointments down at PCMC. If you call in June to get an appointment the earliest they have opened is November 30th. It is crazy busy, so we just changed our clinic day to monday instead. We were running a little late this morning, I was all ready to take Chloe, but Rhen woke up in the worst mood, Addie was sick so we changed plans and Jake went instead, good thing too. I was worried he wouldn't make the 9:00 eye apt and they would cancel us and then have to wait 6 months for another one, but when I called to let them know he was running late he said there was no worry. When Jake got there, the one hour apt turned into 3 hours. Clinic called me at home wondering where we were. It was packed and took forever. I am glad I didn't take Rhen, it would have been miserable.
Clinic went great, she looks great just really dry skin. She started another sloooow tapper on her meds, 1 mg every two weeks.
I don't know whether the eye doc talked to her about contacts but, she came home and asked for contacts for her birthday and went on and on about how she can't wait to get them and she is tired of the glasses. I am sure the glasses are getting old but I can't imagine my chloe without them and her looking at us over her rims of her glasses.

Rhen-man vs. Ave-dog

the battle is on to see whose are the cubbiest.
the cheeks... Ave-dog wins hands down! horray! says avery.




the feet.

Rhen man pulls through on this one, sorry Ave-dog

haha right on! says Rhen.

Ave dog looks a little stunned thinking, I thought I could pull through with my finger toes! dang it.

...and he finally walks at 14 months

Rhen is on his feet, finally! He walks around wobbley like my very cute grandpa Lewis. He looks so big and feels like such a big boy as he grins from ear to ear when we cheer and clap for him. Now I can't wait until spring so he can cruise around outside. He loves to play catch with any ball in the house. He waits for Jake to come home and when he does he wants to go find a ball and play catch down stairs with his daddy. He seriously has a good throw, he has practice since he throws everything he ever gets in his hands, including a wood box which the corner of it tagged me in the temple and hurt. Jake said I looked like a character of Lost.
He still is lactose intolerant, and Jake always jokes when I am gone to Young Womens, that he just feed Rhen some yogurt and cheese and wonders if he will be ok tommorow (because he used to give Rhen whatever he wanted cause his boy should eat dairy, he's missin out). He is getting another tooth, he is as skinny as can be, his cousin Avery, who is half his age just out weighed him. So watch out Rhen she is going to take you down!

long clinic

If there is a big storm, guarantee we have clinic. Ever since she was diagnosed 4 years ago, everytime it is either raining or snowing. Sardine Canyon was so bad, at one point we couldn't see the hood of our car. It was learry scary, as Elsie would put it. Luckily it was the family meeting day so Jake drove with me.
The drive took a long time, clinic took along time with audiology, xray, clinic, more xray's, clinic again, and our meeting with her bone marrow doctor. The yearly meeting went good. He said that since she has made it to a year past transplant, and since she was on sirolumous ( a drug being tested which we were lucky to be picked, and is given before marrow transplants) her chance for relapse is 10% and it goes down to 2% by year 5. Those statistics are from the other patients who were given that same drug. She still has chronic GVHD so we are still in the bone marrow team and not turned over to oncology team, which it may be a while. They are slowly tappering but chronic GVHD is hard to kick and it flares up when you tapper. Chronic GVHD never stays after 5 years and basically gives up. We don't want it to last that long, we hope it gives up earlier and she can return back to school in the fall. The doc wants to set that goal, but you never know. Then we drove our long drive home in white out conditions, going pretty slow. It was a long day.