the "no" word

Yesterday was a typical clinic day. Chloe's gvhd rash continues. Her creams are now burning her skin, so when I put them on she cries for 20 minutes because it hurts. The docs say that this is normal for the gvhd rash. We are trying a new cream, twice a day and alternating this other cream which has to be put on at different times than the other one. Jake joked that she is going to have to go around naked all day! So there is to be no tapper of her drugs yet. We have a family in our area who gives horse riding lessons and they called to put chloe on the list but of course we have to ask our doctors. They said no, maybe next year. Chloe had to blink away the tears, trying to be strong, and Jake said it was all he could do to not cry as well. We are getting annoyed with the "no" word at our house and shed many tears because of it.
I know that it looks inevitable Chloe won't go to school in the fall, but we started a new prayer in our family to ask specifically that she be able to go as soon as possible. And since we know the power of prayer, we would ask those of you who want to, to pray along with our family that she can return to school next year. I know with the tapper of drugs, she might not start in the fall, we are just hoping it will come soon. This has been really hard on us so we thank you for your care and support.

ronald mcdonald buddies

It has been a year since we busted out of the Ronald McDonald. This is one of my favorite pictures of me and Chloe at the apartment. Lots of times when we go down to clinic we drive past the street where the apt is and I ask chloe if she misses having to live there, and she firmly says no. I am grateful to be able to be home, but I honestly thought she would be further in the healing process. She is so tired of taking her meds twice a day, doing creams, changing dressings, and have a spaceball hooked up everynight and not going to school. She says she is tired of her routine. I don't blame her, because I am too. But I am thankful to Chloe for being such a special girl, I told her that not just anyone can beat cancer twice, and have to stay home all the time and do this crappy routine for four years, yes she is a special girl! I am thankful for my other special girl, Addie, who is a great big sister and who has to give up a lot because of her little sister's health issues. For Elsie who makes us laugh pretty much everyday, Rhen for being able to endure the first six months of his life in caos and having a smile that always melts my heart, for Jake who I could never live without and I am SO thankful not to be in the Ronald Mcdonald apartments. ( I was greatful for it, but don't want to have to go back).

lost and found....again

I think we could fill a whole book of things elsie does and says! This weekend was my turn to go to church and Elsie was really fidegty when we got there. During sacrament, she kept asking me if she could go get a drink and go to the bathroom, stating she had to go really bad. I told her no because being her mom I know when she really has to go or not. So finally it was over and I had Addie take her to the bathroom. Addie came back without Elsie. I asked her where she was and Addie told me when she was going into the bathroom, Elsie laughed and said she really didn't need to go to the bathroom, she just acted like she did, and that she had to get out of the church, and she ran out the door. So again for I don't know how many times we have done this, we go searching for her. She wasn't in her primary class, wasn't outside, wasn't inside. Finally after twice going around the church and outside, then recruiting some young women to help look for her we found her in her class sitting down. I have no idea where she went she just said she was hiding. Well at least in the end she choose to come back to church, right? (haha)

Rhen's lovin' the salsa

chip dippin salsa lover! ditches the chip and grabs his fist full of salsa.

Easter pics

Elsie apparently loves to pose for pictures as you can see in this one above with all my girls.

We had a fun easter. Dinner with Spence, Tal and Avery, nice weather, good company and a good burger, can't get better than that!

Stacie

sorry for all the pics. i was reorganizing a bunch of files on my computer today and figured I'd post some because I might not find them again. We don't have a ton of pictures of us because we're always taking pics of the kids. A couple of months ago i was able to get Stacie out of the house for a little winter activity and had the camera with me. So, i figured i'd post a few for posterity. She's a character.

This last pic is Spence sneaking up on Stacie with the beginnings of a vicious snowball fight. Spence lost.

serious about sleep.

hudson

this is my dad [Hudson] and I running through the woods of wyo. Yeah he's as cool as his name is. 27 yrs ago he was about as grey as I am. So I guess this is what I'll look like in 27 yrs. Sans mustache of course because i still can't grow one.

Lost

looks like i lost some links to friends and family blogs and some photos when transferring this over. Hang tight. I'll fix it eventually.

update

Chloe's rashes are thankfully getting better. The one around her picc line is taking awhile to heal though, but hopefully in a few days of what I have been doing to clear it up, will clear it up. I have been very frustrated with this disease, and having to take a step backward even frustrated me more. I guess we have to so that the GVHD will get under control. I have no idea if she will return to school in the fall now that they upped her dose of meds. It takes a long 5 to 6 month tapper to get her off them and she needs to be off of them to return to school, so who knows, but at least her rashes are getting better.


on a lighter note, Rhen can say: what is that (although it comes out in sounds rather than actual words), hot and ouch (not related to any incident :) very cute!