the value of a second opinion.

A different doctor (than the one that saw her at clinic this afternoon) came to visit Chlo after she was admitted. She says, "I just don't think this is GVHD so lets go do a couple xrays to clarify." These are different xrays than the ones done previously. They went downstairs and Chloe pulls a couple of sweet poses on the xray table. The glamour shots come back, doc takes a look and a couple of prescriptions later Stacie and Chloe are on their way home. Nice...

Good thing Stacie likes rollercoasters.

and.... she's back.

Seems like we make this same post over and over. Stacie and Chlo went in to PCMC for a checkup today and won another overnight stay. She has had GVHD and some diarehha for a while and they think the two might be linked - meaning the squirts are being caused by the GVHD. (she'll appreciate us talking about her bowels on here when she is a teenager). If the two are linked, she will probably have to start taking some steroids. And it sounds like she may end up staying for several weeks while they provide her nutrients by IV. She will not be able to eat for a while so they can make sure her bowels are clean and not being adversly effected by food consumption.

Anyway, they want to keep her for a bit to monitor fluid intake and output, among other things. You'd think we would learn and just have an overnight bag in the car when we go, but we try to be optomistic and rarely do. Maybe one of these days we'll catch on and be prepared - seems like a policy that occasionally works for the scouts.

some days are better than others.

Today was fairly decent. I met up with Bono for some cheese fries at the Training Table and then we washed it down with a smoothy and watched people walk by in his hotel lobby. People are funny. His smoothy had blueberries in it. It looked really tasty. It's weird my hands look about 20 yrs older than me in this picture. They always look older in hotel lobbies.

Stacie stayed home with our kids cause thats how she rolls. She's such a good mom taking care of the kids when I have to be out hanging with rock stars and whatnot discussing Peace on Earth. It was crazy though cause when I first got there, Bono still hadn't found what he was looking for - but when we were haning out... he found it (as you can see in the pic). It was unreal. Sometimes you can't make it on your own, you know?

gotta love big sisters

I knew is would be inevitable. The girls are dressing Rhen up. I came home from running an errand and Addie and chloe were laughing hard. They had put Chloe's clip on earrring on Rhen and by the looks of his face it didn't appreciate it, or the laughing!! (next is fingernails painted!)

Addie wanted to cut her hair! She was very nervous about it because she has spent a lot of time growing out. But she cut it for school and is pretty happy about the results. I don't know whether she likes long or short but anyway she puts it, is cute!

tapper off one more pill

Yesterday we take one pill away. It is a drug to prevent GVHD, she has been taking four and now she is down two. She has two more tappers and that will be the last pill of that drug. Then we wait. Hoping no GVHD. She has to be off the drug 3 months before they know if she can officially go off this drug. So we are praying. Clinic went good yesterday, we have some more poop tests to do and they don't know what is wrong with her leg but all in all it was a standard visit. It was Jakes turn to take her so he had some bonding with Chlo. They went to the make a wish building to visit and up through Avon to come home.
We wish we could go every other week but we still have to go weekly.

quick overnighter

So friday night we decided last minute we'd head up to WY to visit Grandma and Grandpa. It's been almost a year since Stacie and Chloe have been there, and Chloe has been wanting to go sooo bad. The girls were so excited and as usual asked us every few miles if we were almost there yet. While up there Stacie and I rode a few miles on our bikes. It was a short ride because we tried to fit it in while Rhen was sleeping and we took some backroads we weren't that familiar with. My suspicions that Star Valley would be a great place to ride around were confirmed. There was no traffic to speak of, clean air and it's a great view no matter where you look. Unfortunately you have to work just as hard to ride 20 miles or so up there as you do here.

We spent the morning helping my parents finish up installing this mammoth basketball standard they bought and then tested it out. The unit was called the Rainbow Dominator. I'm not sure who chose that name because it's kind of an oxymoron it seems - Rainbows and Dominators paint different pictures for me, but who am I to judge. I slammed it a few times just for fun (the hoop may or may not have been down to 8' tall). Chloe came out for a bit and had to wear a mask because of the wind, but she had fun throwing up some points. So did Addie and Elsie. I think this pic is when Chloe was on a roll and hit several in a row. She's got mad skills. Spence was fairly decent at being the rebounder, but i think the shoes he chose to wear hindered his performance. Here's a pic (thanks Dad). Stacie learned how to shoot a layup which was fun to watch, she's got it down now so if you challenge her - beware. Tal even stepped up with her 8 1/2 mo. belly and sunk one after the other. I guess when you're the star player of the state champion team you've still got it even when you're pregnant.

Zach and Mal stopped by today which was wonderful. Liza's growing fast and Elsie's energy kept her entertained for a little while. They both kept us all entertained really. Wish we could see them and the Englands of The Lone Star State more than we do.

Water - Sometimes you're in it.

The other night Spence and I went out to Cutler for a little wakeboarding with Jared Jensen. Preciate ya Jared. He pretty much schooled us in everything, but we're ok with that. Here's a couple of pics of the action. We did some wakeboarding and Spence was determined to jump the entire wake all night. He finally did it on his last run at dusk. I tried to get a good pic, but the lighting was less than ideal so the camera wouldn't take the pic fast enough. I'm sure there is a setting, but of course I never read the instructions. So here is a pic of spence wake surfing. Jared was doing some sweet jumps back and forth. Spence and I were mostly just happy to be vertical and make it across the wake.




We had a good time, though Spence tried to sabotage my first time wake surfing. Mid air he decided that maybe getting tangled in the rope was a possibility, and a bad idea. No we're not wearing a T-shirts - that just this weird pattern in the pigment of our skin.

Here's Spence showing us how it's done.

Just for fun

I wanted to post my kids photos of when they were all 6 months old to compare. They are all a big mix of each other and of us. It is fun to see the similarities and the differences. Addie when she was six months would just sit there for hours if I let her and play and never move and would eat most anything especially nutrigrain bars and it was hard to get a smile out her, you would make the funniest sounds and jump up and down and still she would just look at you with the look that she has in this picture. Chloe would try to get undressed and always grabbed things like her tag on the bumper pad, and always had a plummers. She was very easy going. Elsie she was a smiley girl and a go getter, she loved to eat cookies and she army crawled very very fast! Rhen he wants to crawl so bad(he doesn't even sit up yet)! He is very grabby and won't stay still. He has a smile for everyone. Rhen is a lot like chloes personality so far, he is smiley like Elsie, but the older he get he looks more like addie. I wish I would have video taped more so I could remember. They are fun kids!

Clinic went good

Chloe is looking really good the doctors said. She still has problems walking and they took xrays yesterday of her hip and knee this time. Vincristine, a chemo drug she has gotten have toxins in them and damage nerves. So they hope this is just the case. She needs to do physical therapy to help and Brenda says that it has helped some kids in the past. So that is what we will try. Her poop problems are getting better and her tummy doesn't hurt as bad anymore. She is beating Rhen big time in the hair compitition (boy Rhen when ya gunna get some more hair)!
So monday night we ripped out the leaning wall in the back yard with the help of Spencers amazing strength, Jakes screw placing ability and both brains put together we wouldn't have been able to get it out! Well the fj helped a little! Now the not so fun begins by rebuilding it. I am excited for next year though, cause I will be able to plant a garden and not have it fall over.

Home Again.

Luckily Chloe and Stacie's trip to the hospital was a short one. Last night Chlo called me bawling because she had to get an IV in her foot. She was really upset about it because she already had one in her hand. She needed an Anti-body transfusion and for some reason it was painful for her in the IV she already had placed in her hand. It was sad to hear her explain how it hurt when they placed it. Maybe she just needed her dad to say it would be ok. Stacie said she cried for me the whole time - she cries for Mom the whole time when I am there.

After her transfusion and much confusion between doctors and nurses, it was decided that she could come home last night. They got home around 11:30 or so and went straight to bed. We wish they hadn't used the term "mass" in her colon when describing the problem. Hearing it that way... panic set in. When she relapsed there was a mass in her bicep which is how we knew something was amiss. Luckily it is just a blockage, but strange. The docs were reluctant to give her laxatives to remove the blockage because when it breaks it up there is a chance of infections getting into her blood stream, but other alternatives are probably more dangerous. Something needs to be done to get rid of it so hopefully a few Miralax coctails will do the trick. We'll just have to keep an eye on her and make sure she doesn't spike a fever. No news on why she is getting blocked up and all other BMT patients have the opposite issue. We're back to SLC on Tues.

In other news, Rhen drank some apple carrot juice last night that he enjoyed quite a bit. The rest of us had wonderful fajitas that the Ball's grilled up for us. Thanks Justin and Callie, you saved Addie and Elsie from a bowl of cereal or something else that I would have whipped up in Stacie's absence and it surely would have been mediocre.

quick stay at the ICS (hopefully)

Chloe has poop problems. The doctor asked us to come down for some test and an xray to see what is going on with her bowels. We got down here last night went down for some xray's to rule out anything serious. Which it doesn't seem to be anything serious, so that is good. They are looking at her xray's and they see a mass in her colon which might be just backed up stool, which they think is weird because BMT patients don't get constipated. So they are having someone else look at them to see if they are thinking the same thing. Well they just came it to say constipation is what it is but they aren't sure how to treat it. Either with oral meds or an iv up her nose to drip some meds to get it moving, or an enema. Enema's are a no no with cancer patients but her counts are good so we will see what they say in a bit. So it looks like it will be a short stay, maybe even come home tonight. They just really worry about stool consistancy, and color when she already has a little bit of gvhd.

Addie's birthday party

Addie is one year old in this picture(so cute) and now...she is ten. She is so fun to have around. We had a birthday party for her 10th birthday on the 7th of July. We had two of her cousins sleep over, Jamie and Jonie. We slept in chloe's trailer, and they had a lot of fun and talks of body parts and functions were at a minimal (haha). Which is a big change from the last outing these four went on a year ago. They had fun in the sun and water. Chloe was the judge of the tricks they did on the slip and slide. They come up with some pretty good ones. Addie thinks Rhen's swimming pool is "sweet" so they played in that too.
They played dress up in my clothes and shoes and did a green facial mask and they thought they looked like monsters. Addie's scary face is pretty scary, man! Chloe just watched she didn't want the green stuff on her face. She pretty muched watched most of the time, but that is ok. Since her time in the hospitals these past years she is used to more adult interaction with nurses and doctors so she and Kinsey hung out (plus she can't keep up with the kids).

Aunt Kins came to the party and we are so glad she did! It was fun to see her and my girls really love her!

They had a really good time and Addie and Chloe wishes they could see them more.

clinic day again

Yesterday was Addie's birthday and she had fun with two of her cousins and her sisters. We will post pictures later when we aren't so tired. Clinic day always wears us out, the driving, the construction, the waiting for doctors and nurses, the driving some more. Jake crashed when he got home. I am tired from all the party planning I did this week. Having two birthdays in one week gets busy. I only let them have friend parties every 5 years so it acually is fun.
Chloe is doing awesome. They are still watching her everyweek because of the tapper of meds but her rash is getting better, and all the tests came back negative, so Yay! We need to figure out some excercises to help strengthen her legs, she fell again the other day and hurt the other foot, so now it is even harder to walk. And she said, "I was just getting better at running." So if any of you know of good excersices to build up muscles and ligaments send them my way, or maybe I could just google it (my famous words). She is such a great girl and through this she has compassion that is greater than a lot of kids her age. She just seems older. I was just thinking about it yesterday as she said some things that brought it, again, to my attention. That is a blessing!

4th of July

We were inside most of the day on the 4th. It was a pretty windy day and Chloe can't be out in the wind. Although it was a boring day for me, my kids didn't mind it much, they just played down stairs. We finally were able to go outside at dinner and have hot dogs and light our fireworks. I have remind myself just this one summer, and hopefully next one we can do more things.

Chloe is doing good. She said to me the other day she can feel herself able to run a little faster. She was pretty excited about that. Yesterday Jake took her to get her trailer (we store it inside Jake's office building so it won't get damaged by the weather)to have at our house and Jake mentioned to her how nice it is to not have a picc or central line anymore. He asked her if he made her feel like more of a normal kid. She said that getting poked doesn't make her feel normal. So I think it will be awhile before she feels "normal". She looooves her trailer and they played in it all night and this morning bright and early they were up playing in it! We are so glad we did make a wish. It makes her so happy to have her tent trailer.
We still have to go down to clinic once a week. Her rash was worse last week but it seems to be calming down this week so we are glad about that. No news on her tests, and she still has the poop problems, so I am thinking one of them will come back postive.

Elsie's Birthday Party

Today Stacie planned a birthday party for Elsie and invited some of her neighbor friends to celebrate with her. She was so excited for her party and had a lot of fun getting wet, sliding, jumping and of course opening presents. Thanks to all her friends for coming to have some fun with her and bringing her some sugar (candy). Much to Stacie's chagrin I bought Elsie a cold Dew for her birthday. All she needs is more enegry. She was more excited about the Dew than the swim shorts I got for her. It's always the cheap stuff that kids like the most. Although, Stacie picked her up a High School Musical microphone that she will love more than anything. She is always singing - really loud sometimes - so she will get a lot of use out of that.


Elsie's friends in attendance (not all pictured at once) were the Kyler and Kayden Jones, Lauren Wright, and the Ball girls Aubrey, Alyssa and Jenna. Their parents will be pleased to know that they all ate their lunches quite well and were very polite as they always are. We're lucky to have good neighboors with such good kids for our girls to play with.


This is Rhen. He served as lifegaurd this afternoon. You can see he was pretty astute, looking for crisis situations. Good thing no CPR was needed as his lung capacity is limited on account of his size.




I was going to take Chlo to work today, but she really wanted to be here for the party. Really bad. So, we relaxed a little and let her get in her suit and have some fun. Hopefully that won't come back to bite us - or her i should say. It's hard not to get a little more relaxed as she gets off meds and a little more back to normal. She is getting tested today to see if she has Crypto or Cdif again or if the symptoms are more GVHD. Hopefully it is something that will go away quickly. Here she is hobbling up some speed and sliding down the slip and slide. She had a lot of fun and was really glad she was able to party a little.





Chlo was excited to get a note from Chanse in the mail today. Thanks Chanse, keep getting better!

Clinic

Today was clinic, and it went good. She was able to get her picc line out which she was very excited about. She was brave and said she wouldn't mind getting poked every week. They did this because her rash is so bad around the dressing it pusses and the dressing won't stay on. Plus the puss can get the site infected, and we don't want that. They are still concerned with her GVHD. We are tappering one of her drugs so they worry more about it flaring up worse. It is worse than last week (the rash) and she is starting to get diarrhea, which is another sign. We are just praying the it doesn't get worse. Her ankle is still bothering her and it is hurting worse and needs meds to help with the pain. It just isn't use to playing and running and her bone density is low there so she just needs to get use to using it and also eat more calcium.
We are going to have the 4th of July festivities at home this year. We got some sweet fireworks and some good hotdogs! Elsie's birthday is on the 3rd and that is when they have the statium fireworks, I am pretty sure we will be able to see them from our house so we will enjoy them here.
Hope you all have a fun and safe 4th!