test results...

Well it is GVHD. They have four stages of it and she is at stage 2. She has some sores on her stomach and closer to her rectum she has some white bloods cells eating away at the folds on the wall of it. That is what GVHD is. It sounds gross and I am not very good at explaining things, so sorry. I showed her the pictures of her stomachoscopy and she said gross!
She will start on low dose steroids, and be on a clear liquid diet for at least a week. So although GVHD is scary,but it could be worse than it is. She can at least drink something and not totally off food. She was pretty sad about that but more so cause someone is telling her another thing that she can't do. Cause to be honest, she doesn't eat THAT much when we are here anyway.
We have had fun reading and painting. Her spirits are pretty good considering. She was really excited that she didn't have to be poked this morning.
She gets her first dose of predisone right now through her IV. She will have to get her PICC line back in, because they want to do liquid steriods, since it is a low dose. It sounds like we will be here at least another week. They want to make sure her poop is formed before she goes home (again, sorry chlo for having to say so much about your bathroom situation).

more tests, nothing new

today Chlo had a Colonoscopy. It was a bummer, but we weren't getting any answers from other tests they ran. Everything is coming back negative so it must be GVHD that is causing the problems in her gut - or so we think. So they took some biopsies of her intestines while they were in there to grow some cultures and see what they can figure out. Hopefully tomorrow we will have some hint of an answer. But we've been waiting for answers all week so i guess we won't get our hopes up.

Last night I spoke with the father of a little boy who has GVHD issues in his intestines and it sounds very miserable and pretty scary. They have been living at the hopsital for 4 months trying to get rid of it. Probably a severe case, but we have no idea what the protocol will be to treat it so who knows how long we will stay. Never thought we'd say it but we really wished it were Cdif instead.

testing

Cdif A test is negative. B is still not back yet. Doctor Boyer thinks we should just do a stomachoscopy to get a biopsy and check fo GVHD. We just want to get the bottom of the problem so we're on board with that. There is a chance she has another type of virus so she's being tested for that as well. Looks like we'll still be here for a while.

Addie and Elsie are getting really excited for school. I called home last night and they told me about all their cool school supplies that they are organizing in their backpacks for the first day of school. They get to meet their teachers this week so they are really excited. I think Elsie is the most excited about riding the bus. Previously one of the less experienced docs told Stacie that Chloe's counts were good and she might be able to go to school. I asked one of her more regular docs yesterday and she said don't even think about it.

Weekend Update without any SNL people. None.

This post is really long and it just seemed like it needed a picture so here you go.

Friday night and Saturday Stacie was gone to Twin Falls with the young women of the neighborhood for the new temple open house. She loves hanging out with them, i think it makes her feel young again. Well, younger. She's still pretty young. Although she has 4 kids which makes her seem kinda old. They seem to enjoy her company too and she might be the instigator of somewhat mischevious [yet harmless] activity, but it sounds like they all had a good time.

The girls, Rhen and I had a fun time together at home, but i always appreciate Stacie more when she is gone. Ironic because it's likely easier and less stressful for her when I am gone. In the morning we had to run in and get some xrays for Chloe. Of course they didn't have record any orders from her doc because thats the way it goes on the weekends. So we had to go back home, call the Doc and wait for the orders to be re-sent then back to the hospital for the xrays. While we waited for results we decided to head up to the mountians in the cruiser. The scenery was great, but there were tons of people up there. I missed the vacant Wyoming mountains, but enjoyed the great scenery we have in Utah right in our back yard. The kids all had fun despite the rough roads, and i brought everything but diapers for the Rhenman and he had a little too much to drink. Poor kid. I was almost prepared, but thats not the scout motto now is it?

Saturday night Chloe spiked a fever so she and I drove down to SLC for a little getaway. As we were driving I told her I was sorry we had to go again and she says, "I just wish i was just normal dad." She was sad, but didn't cry or anything. She's used to it by now and knows she needs to. She asked me all kinds of questions on the drive down, including what Grandpa does running the sleep study lab. I explained why people have to go there and she said, "boy, i'm glad i don't have that problem because I'd be so sleepy and onery."

By the time they poked a few veins to find a good one for her IV it was late and I don't think we got to bed until 2:30 or so. She is feeling ok. Just has some flu like symtoms and we're waiting for some tests to find out if her problem is a Cdif or Crypto type bug, or a more serious GVHD problem in her intestines. She has had no problem providing stool samples, but the tests take some time i guess. So we just hurry up and wait for now. She was not excited to be awakened by another poke for blood tests this morning. It's always nice to see the Russells, Godderidges or others but we wish it wasn't always here. The Russells who live just around the corner from us, are staying in a room just around the corner from us here.

We have been down here so much over the past 3 1/2 years we can't help but wonder sometimes when we will have a more normal life. Yet, every time I come here I am so grateful for how normal our life is. I hope those of you who read this don't assume we write what we do because we're looking for your pity - thats not the case at all. We're very aware of our blessings and appreciate them every day. We record things here on our blog so we can remember them later and hopefully our kids can look back at the experiences and remember what made them who they are. Since we got here Saturday I have run into several families we know who were doing well at home but are back with some serious trials. Yet they are so strong even when the outcome is uncertain. It's made me really grateful for our burdens that seem so much lighter than they could be. Cancer has a way of making you appreciate little things. For me, some of those are having one on one time with Chloe even if it is in a hospital room or my phone call from Elsie last night that went something like this:

"hey dad. I miss you cause you're down there but not here."
I miss you too els. What have you been doing?
"We played a lot and there was this guy and he hurt his brain. Aaaaah! That loud noise is Rhen crying. but it's cause he didn't eat all of his milk."
Really? what did you play?
"Nothing."
You just said you played alot?
"Nope, we just didn't do anything. Just played. Well I gotta eat some froot floops or something. Its because i'm hungry. Love you dad!"Click.

Chloe and I were watching the Olympics and Phelps mom was explaining how he had ADD when he was a kid. Chloe asked what that is so I explained. She says, "I'm pretty sure Elsie has that."

poor chlo

I have been worried about chloe since Friday and we got some xrays of her abdomen and she isn't constipated, but still goes to the bathroom 7 times in a 24 hour period. She had the chills all day yesterday and last night about 10pm she got a fever, so she was admitted. Last night she looked sick had dark circles under her eyes, so I wondered if she was getting dehydrated. When they got there she has low blood pressure which is an indicator she is dehydrated, her stools were a green color, indicating infection, so they are testing it. So they are just hanging out today waiting for tests, but they did start her on a antibiotic already which they always do when she gets a fever, and flagil seems to work great for her. I have no idea how long they will stay. Jake is staying with her, I have meetings with her teacher this week and school, so I needed to be home. We try to stay possitive but this really gets old.

Rhen wants real food, none of this baby stuff!

Lately Rhen when we are at the table eating dinner he does not want anything to do with his food in a jar. He wants the real stuff. So last night we had a bbq with Kinsey, Spence and Tal so Jake handed him a hot dog and it went straight to his mouth. Then he washed it down with a Henries Rootbeer (he knows what the good stuff is)!

a day in the life of Elsie

You may ask yourself, is that snow? Oh no it is hundreds of pieces of packaging styrofoam that our little elsie got all over the front yard ( and notice in the first picture her sneaky little grin, and then the second one realizing she is going to have to clean all of them up). We got a package from UPS today and it is to hard to resist those things so I told her Elsie she could play with them ( first mistake) thinking she would just play in the box with the in it (second mistake). She started throwing them in the air one handful at time, so I just let her know that she would have

to pick them up when she is done. The next thing I saw was the box empty and they yard was full of the little tiny styrofoam. She decided she would get up on the second step of our planter boxes and jump in the box tipping it over and spilling them and them picking up the box and dumping the rest out and played around in them breaking them into smaller peices.
It was getting time for dinner so we went inside letting her know she needed to pick up the mess. She cried and didn't want to pick them up by herself. I realize this is a big job but I warned the girl. Five minutes later Addie came in to tell me the four neighbor boys were out there picking them up and Elsie was just sitting there. Elsie came in moaping. She wouldn't go out and help at all and screamed and cried, so if she wasn't going to help, I had her stay in her room the rest of the night. Leslie and Joanna and her boys, kinsey (who came to our house for a fun visit) and Elsie's sisters are good samaritans, they cleaned up most of the mess. Elsie, well she screamed and cried for a while but then she just fell asleep in her room. Hopefully the lawn mower will pick up the little tiny peices we couldn't get.

Clinic

Chloe had clinic today, she is finally on every other week, which is nice. She hates to get poked. She screams, and screams, so it isn't pleasant for her or the parent helping her. She is doing good, but we saw a doctor that didn't know a lot about her case, he is just a new BMT doc so it seemed I knew more about BMT care than he did. I was a little frustrated because I had questions concerning her 6 a day poop problem, and they didn't know anything about it. They are going to bring Chloe up in their BMT meetings to see if she can be an exception and go to school, but we aren't counting on it. Chloe wanted me to ask.
Her ear is hurting really bad but they couldn't see anything becasue she has so much wax in there. We have some medicine to remove the wax so they can see. She has no fever so we are hoping it isn't an infection. Elsie, having the energy she has, accidently whipped her in the ear today with a towel and she screamed, poor girl.

Jake put the cruiser to the test when we got home, with Rhen, they went clear up millville canyon , which is very very rocky, and the cruiser did awesome, he said. Rhen loved it. They are alway a happy boys when they come back from wheeling up in the mountains.

The Weekend of August 2nd and 3rd, 2008.

Nothing too exciting has been happening around here which is just fine. Stacie and a friend went to Park City Saturday from morning til night so they could get a break from reality. It probably wasn't a long enough break but I think they had a good time being kidless for the day. It was a much needed break for the both of them I think. All moms should probably get a break like that on a monthly basis. I barely made it through a day alone last week and that pales in comparison to the last 10 yrs Stacie has stayed home with kids.

I had big plans to get a lot of things done Saturday while Stacie was gone. Then I realized I am but one man, with 4 kids. I told Stacie I probably wouldn't do much because i'd be baby sitting, but she says "I do it everyday Jake!" She's probably right, but she should know by now that if she keeps her expectations low she won't be disappointed. So I just mowed the lawn, did some weed eating and sprinkler fixes to try and keep our yard from being the embarassment of the neighborhood. Then we cleaned the house a bit and had the Jones' and Englands (Spence and Tal variety) over for some dinner and dutch oven cobbler that Jason made. I think it was the best cobbler i have ever eaten. Unless someone else reading this has made cobbler that I have eaten - then yours was the best. If not, Jason's holds the title.

Much to Stacie's dismay, our garden boxes in the back yard are not any further along. I like to work on personality traits so i can be a well rounded person - this summer I'm working on procrastination. I've been meaning to tally up the results on how i'm doing but I've been busy. Maybe next week or the week after. Right now I'm just really working on planning ahead. That way I know which direction I'm headed and I don't have to do anything right now.

I have included some pics of Rhen-man about to leave with Stacie for church. He is such a smiley kid. When he's real excited he'll smile real big and tuck his chin into his chest like this. He does this pretty much every time he sees his mom because he loves his mommy like nothing else. Its so funny when Rhen wakes up from a nap because as soon as we can hear him all the girls beg to get him out of his crib and go running towards his room. He's one loved little boy. He'll probably be rebellious because he's smothered all the time. Sorry the pics are blurry but thats the chance you took reading our blog.

This morning our good young men dropped by to give us (Chloe and whoever is staying home with her) the sacrament since she still can't go to church. It's really nice of them to do that for us. All of our kids sat so quietly, even Elsie. I couldn't beleive it because Els was bouncing off the walls this morning. Thats just an expression I know, but Elsie literally does it. She sure is enjoying her childhood which is great and thankfully it seems like she is out of her destroy stuff stage. Now she is into a torment her siblings stage. She gets on Addie and Chloe's nerves and knows it so she just keeps pushing their buttons. It starts as soon as they wake up and goes on pretty much until they fall asleep. Maybe when school starts Stacie will get some of her sanity back, but she will definately miss all the helpers at home.

I hope you all had the best weekend you've had since the last really good one.

"just call next time!"

After we were discharged yesterday, after being admitted for 2 hours, one of the nurses said for us to just call next time we want to say hi :).
Luckily it was a short stay, they just keep getting shorter. Chloe had a not so ideal day yesterday at clinic. She had to get poked twice at clinic because they needed her levels but all the steriods she has been on makes it so her veins are small and they hide. So that was miserable they couldn't find them and they had to pull in and out while she screamed, then they came in to tell us they are worried she has GVHD so we need to stay to get a stomachoscopy for it. I was soooo hoping that wasn't the case because depending on how intense the GVHD is the treatment is less than ideal. She would go on steriods, which are not fun at all, and then she can't eat, to give her belly a rest. Now, those of you who don't know about steroids, they make you hungry, I mean chloe could down a whole 12 inch quiznos sandwich back in the day. So the two would be a horrid combo. So I said a quick prayer, we were admitted, she was poked again twice (couldn't find her veins, poor girl) and then they decided to get some x-rays before they go and do a stomachosocpy just to rule that out. I saw the xray when they were done and there was tons of "stuff" blocking the way all up and down her colon. So prayers are answered and we are home. I feel so greatful.