Sorry I've been such a slacker about blogging lately. Things have been pretty good. Clint has still been feeling good, which is great! We even took the jeep up the canyon Monday which was tons of fun (minus the part where Nik was puking:()!
So we have a big day tomorrow. We have a clinic visit at 11:15 and then we have the conference call with the 'grievance committee' about the sorafenib denial. So we really could use some extra prayers. Especially that the insurance committees hearts will be softened and we can get approval for the sorafenib
Thanks so much! And I promise to update again really soon to let you all know how tomorrow goes.
We love you all and we are so grateful for all of the love and support we have everyday!

Home

Wow, it's been a while since I've updated on Clint.
Things have been a little crazy the last week.
We ended up getting to come home from the hospital on Friday which was great! Our boys had been hanging out with the K's (thanks so much you guys, they had soooo much fun, like always) so they were pretty exhausted when they got home that night. It worked out perfectly because I had just bought How To Train Your Dragon so we ended up having a great movie night! Then on Saturday we just hung out at home all day. It was so amazing just to have a 'normal' Saturday. We cleaned the car (and by we I mean my brother Chris:), we painted pumpkins, and we just enjoyed being home. I think Clint overdid it that day because he ended up having a fever most of the night :( We called the hospital Sunday morning and luckily they let us just go to AF Hospital to get blood cultures and stuff done. They started him on some more antibiotics, just to be safe, and luckily he has not had a fever since. We just took it easy on Sunday, Clint slept most of the day. Then on Monday we had another 'normal' day. School (wore Clint out by making him walk with me to pick Noah up from school and then walk with me to pick Nik & Nate up from school), homework (yelling & fighting because of homework:), playing, bath, bed.
On Tuesday we went back to clinic to have our first of three more days of chemo. We were there from about 8:15-2. Then on Wednesday back for more chemo, from about 9-3:30. Also had to get platelets on Wednesday, they were down to 12. And finally today, last day of chemo! We were at clinic today from about 9:45-3:30. The doctors don't have a lot of information to tell us. His counts are going down, so that is good. But today he still had 34% blasts in his blood, which makes me a little nervous since we don't have anymore chemo. We're just praying the chemo is strong enough to keep killing them off.
We have been trying to get our insurance company to approve the drug sorafenib. We have been denied twice now and started the 2nd appeal process today. It is the flt3 inhibitor that I mentioned a few posts ago, but it is only FDA approved for liver or kidney cancer or something, so our insurance company won't approve it for us. We sent over articles and a letter from Dr. Hoda but they still denied it. So now we have to go before a grievance committee and I'm praying this will do the trick. The hope with this drug is that it will keep the leukemia at bay long enough for us to get off the steroids and let some graft vs. leukemia kill off the remaining leukemia cells before it gets out of control again. I really think this drug is our best option right now, the problem is that it costs $10,000 a month. So if our insurance won't cover it then obviously it is not an option. It doesn't sound like the doctors really have another plan, as of yet, if we can't get this drug, and that makes me a little nervous.
I know I ask for too much, but if we could maybe get some extra prayers, fasting, whatever you can do, so that our meeting with the appeals committee will go well and they will approve Clint for this drug ASAP that would be amazing. Thank you so much! We really are the luckiest, to be surrounded by soooo many amazing people!
In good news, Clint has been feeling really good the last couple of days. So we're just keeping our fingers (and toes) crossed that it lasts. And that we can enjoy every minute!
Love Ya!

Be The Match

I know I've been promising I would do this forever, but better late than never right?!?
Here is the information to register for the bone marrow donor registry. If you register on this link it won't cost you anything. You can make a donation to the Be The Match registry if you feel that you are able. Click Here or go to http://join.bethematch.org/CedarHills. If it asks for a code it should just be CedarHills. Let me know if you have any problems.
There are so many people out there still searching for a donor. Please, if you can, register to be a donor. You really could save a life!
Thanks to all who have joined and will join the donor registry.

Attention All Runners.....

or joggers, or walkers.....

**CLICK ON PICTURE TO REGISTER**

Thanks Ence & Gray!

Food

So I guess I should start where I left off on the last post...
They hung Clint's first dose of Cyclophosphamide Monday night around 11:30 pm, so needless to say Monday was a very long night with a lot of interruptions. Clint got very little sleep since he had to get up about every hour to pee thanks to all the fluids they pumped into him. So yesterday he was pretty tired. I don't think it helped that his white blood count jumped to 54,000 with 56% blasts, I am sure that didn't help with his energy level :( They started the Clofarabine yesterday around 6 and did the Cyclophosphamide around 8:30 so he was done a lot earlier than the previous night so that was good. I think he was actually able to get some sleep last night so he woke up this morning feeling pretty good, yeah!
So far he is tolerating the chemo really well. And his counts only went up a tiny bit today (55000 wbc with 60% blasts) so the doctors are very hopeful that the chemo is working. Hopefully his counts will start coming down in the next day or so. We were able to go for a walk outside today which is always nice, although it does get a little sketchy pushing his IV pole around some of these old, cracked sidewalks :) But I think it was really good for him to get some fresh air and some exercise (he didn't get out of bed much yesterday).
And now to the exciting stuff.....He is actually eating solid foods again! WooHoo! He got moved up to the GVH1 diet yesterday, which pretty much consists of a few cereals (cream of wheat or rice, rice krispies, cheerios) some starches (white bread, plain bagel, mashed potatoes, saltines, etc.) and some fruits (applesauce, banana, or canned peaches or pears). He could only get one new thing to try, then he had to wait 3-4 hours to make sure it settled well, and then he could try one other new food plus the food he'd already tried. So yesterday he had cheerios (with soy milk because he can't have milk products, which surprisingly he liked:) for lunch and then for dinner he had cheerios and a banana. So today he got moved to the GHV2 diet, which included all the GVH1 stuff plus some proteins like chicken, salmon, turkey, eggs and a few different crackers and veggies. He had a hard boiled egg with a bagel and some pretzels for lunch and a chicken breast and applesauce for dinner. So far his stomach is holding up really well so tomorrow he should be able to advance to the low microbial diet, which is pretty much his normal diet. He is pretty excited because for some reason all he has wanted since he hasn't been able to eat is some chocolate donettes (from the vending machine) and Dr. Hoda told him that tomorrow he can have those donuts. So he has something to look forward to in the morning :)
Hopefully we will be able to go home on Saturday! At least for a couple days before the next chemo is due. As long as he continues to tolerate the chemo well and is able to start eating enough calories to get off the TPN then we should definitely be able to leave Saturday. Can't wait to spend a couple days at home with the boys, we sure miss them!
Thanks again for all the prayers & thoughts, we both feel them and need them!
Love you all! Goodnight!

Chemo Time Again

Well we had a good run there for a while of keeping Clint's counts under control. But that came to an end this morning. His white blood count jumped from 7700 to 22,000 and his blasts went from 11% to 47% overnight :( So that means it is time to start chemo again. They are hydrating him really good right now and then will hang the chemo around 11:00 tonight. This round is a mix of 2 different chemos, Cyclophosphamide and Clofarabine. They will start with only Cyclophosphamide tonight and then do both for the next 3 days. Then he will have 4 days off and then 3 more days of both. The doctors told us that this is about the last chemo there is to try, so we are praying with everything we have that this one does the trick.
Clint has actually been feeling pretty good the last couple of days. The boys came up yesterday (thanks mom) and we talked the nurses into unhooking him for about an hour so we could go outside and play with them. We walked down to memory grove and the boys were able to run and kick their soccer balls around. It was really fun, a lot better than being stuck in this hospital room!
Noah (and in case you were wondering...yes he did fall in:)

Nik

Nate

Clint & the boys

And the whole fam!

Clint has been on a clear liquid diet today, so he actually got to have some jello and some chicken broth! Yipee! He is not overly excited about it, he just wants some real food! Hopefully tomorrow they'll let him start with some toast or something, I guess we'll see.
Thank you all for the prayers and thoughts, please keep them coming. We need prayers that Clint's body will be able to tolerate this chemo. And that he will have the strength to fight through another round. And that this chemo will be the one to kill ALL of these leukemia cells!
Love you all!

**I also want to say congrats to Camie & Jeff on blessing their little Lilly. Sorry we weren't able to be there. We love you guys! And also thanks to all the Jepperson men (with a couple Terry's and a Brinkerhoff:) for coming up last night to give Clint a blessing. We are so grateful for the power of the priesthood and for all the righteous men in our lives who hold and honor it!

Quick Update

Well we ended up not starting the chemo yesterday. Clint's blast count has been hanging out at 2-3% the last few days which was not what anyone expected. When we saw the blasts in his blood when we came in on Sunday we all (docs included) expected them to shoot through the roof really fast because that is what they have always done in the past. Every day we have thought that they would be way up but so far they are just holding steady, which makes us wonder what is keeping them from getting out of control. We have decided to wait on the chemo for a bit and see what his counts do over the next few days. Hopefully we do have some GVL going on in there and it will continue to keep the leukemia at bay.
Clint's GVH seems to be getting a little better everyday. They still won't let him drink or eat anything until it completely stops, but we're hoping that at least by Sunday they will let him at least start having water and ice chips. But we'll see how things go. The rash is also seeming to be a little better. It seems to be breaking up a little and Clint says it's a little less itchy today. Yeah!
So for now we just continue taking it a day at a time. And keep praying for the best!

Better Get Comfortable...

Because it looks like we are gonna be here a while.
The Docs decided that if we still want to be aggressive against this leukemia then our best option would be to start another round of chemo, and they want to start it tomorrow. It will be two different chemos, on is called cytoxin and the other is called clofarabine. We start with a round of cytoxin and then three days of both chemos, then we have four days off and then three more days of both. We are hopeful that Clint will be able to handle these chemos as well as he has the other ones. And although the Docs make it clear that there is only a VERY small chance of it getting rid of the leukemia completely, there is a still a chance.
Clint is pretty miserable. They have him on 'gut rest' (yes supposedly that is an actual medical term). Which means he can't eat or drink anything. He has not eaten since Sunday morning and has had only a few sips of water to take pills. They finally started him on TPN(IV nutrition) yesterday so at least they are not completely starving him to death, but he just wants a drink so bad :( They say as soon as the diarrhea stops completely they will let him start on clear liquids and should be able to work back up to solids quickly. I just hope that with starting this chemo he will still feel like eating when they decide to let him try. His rash is also still driving him crazy. He has been really itchy today and nothing they give him seems to help at all.
It is really hard just sitting here knowing he is miserable. I wish more than anything that there was something I could do to even just make it a tiny bit better. I just hope he knows that if I could, I would take all this misery onto myself in a heartbeat. I love him more than anything!
They finally gave him some lasiks this morning to help him get rid of some of the fluid he's been holding onto. This morning his eyes were so swollen you could barely recognize him. And his ankles and feet are so huge!
I just have to keep praying that all this yucky stuff he is going through will be worth it. That Heavenly Father will grant us a lot more time together.
As hard as it is to remember sometimes, we are so very blessed. We have so many amazing people around us. Our boys are being taken care of and loved. We have so much to be thankful for and I just need to keep reminding myself that God is in charge, He has a plan for us, and we have to have faith in His plan.
I again want to thank everyone for the thoughts and prayers. They truly make a huge difference! And we could not make it through this without all of you!
Goodnight All!

Well we are back at the hospital :(
Saturday we got up early because the boys had an 8am soccer game. Clint wasn't feeling really great but was able to come to the game with us, which was fun because Nate scored a goal! Then we drove the boys up to my mom and dads cabin. We listened to conference up there and then left the boys there to play with cousins and drove home. Clint had been feeling pretty nauseous all day and he was starting to have more frequent diarrhea. He was also still battling with the rash and the fevers. But it was still tolerable.
Then came Sunday...He woke up feeling a little nauseous and wasn't able to eat much breakfast. He didn't feel good all day and just didn't look very good either, plus his diarrhea was really getting bad. Around 3:00 I made him take his temperature again and it had risen clear to 103.9 so I told him that I thought it was time to call the hospital. He did and of course they said come on up. We got to the hospital around 6 and they were at least able to give him something better to help with the nausea. They were also able to get him some fluids and stuff.
The Dr's decided because of the combo of the rash, fevers, diarrhea, and nausea it was time to treat the GVH before it did some serious damage to Clint. It is a fine line because the GVH can kill Clint as fast as the leukemia if they let it get out of control. They also did a colonoscopy and an endoscopy tonight just to make sure there wasn't an infection they were missing. They said both ends looked pretty good, his stomach is irritated inside and his colon looked like it had a moderate case of GVH. They took some biopsies and we should get those results soon. They started steroids today to treat the GVH and it seems like the diarrhea is already slowing down a lot. So hopefully Clint can start feeling better soon. (and hopefully they'll let him start drinking soon. they haven't let him eat or drink anything since we've been here, trying to rest his gut. but he's sooo thirsty)
They also decided to start the steroids because the GVH didn't seem to be causing any GVL(graft vs leukemia). He had blasts in his peripheral blood the last two days (2 on Sunday and 7 today). So it seems we are back to square one. Dr. Hoda came in today and went over our options of what comes next. There is another type of chemo we can try, although they don't think it has much of a chance of working other than to keep the blasts down for a while. There is a drug called sorafenib, it is a flt3 inhibitor (flt3 is the gene mutation Clint's leukemia has which makes it so hard to cure) so this would hopefully keep the leukemia away for a while, but in most cases the leukemia eventually finds a way around the inhibitor. Then there is always the option to do nothing, but right now that is not an option we are considering.
We are at the point again where none of the docs have much hope in anything being curative. But we know that Heavenly Father has a plan for us, and although we don't know exactly what that plan is, we just have to have faith and trust in Him. I also believe in miracles and see no reason why we can't receive one more. I am extremely grateful for all that I have been blessed with in my life and I am especially grateful for every day that I get to spend together with my amazing husband! And hopefully there will be many, many more days (preferably years:) together on this earth. But no matter what happens, we will have eternity! Love you sweetie!!!

News

Well we got some news from the bone marrow biopsy today. Not very good news. The leukemia is still there :( He had 9% blasts in his marrow, which is up from 4% two weeks ago. So I guess at least the Vidaza seems to be helping it not come back as fast, but unfortunately it seems to still be coming back.
Right now we don't really know what the next step will be. We have a conference scheduled with one of our doctors on Monday morning where we will be given information on all of our options and the pros and cons of each.
I've decided we are just going to try and enjoy the weekend. Just sit back, relax, and watch conference. I am really excited for conference this year, which sadly I don't know if I could honestly say before. I can't wait to hear from our Prophet and the other leaders of our church. Hopefully we will be able to gain knowledge that will help us make the decisions that are ahead.

Clint had been feeling pretty good this week until today. He had golfed Tuesday and Wednesday (and golfed pretty good too). But then today he sort of crashed. His rash is still driving him crazy, he's still having the fevers, and then this morning he woke up feeling pretty nauseous. He ended up puking up all his breakfast and wasn't able to eat a lot of food today. Hopefully tomorrow will be a better day.

Well I'd better get to sleep. I got less than 4 hours of sleep last night and the boys have a soccer game bright and early at 8am!! Fun, Fun! But if we could get some thoughts and prayers sent our way, that we will be able to make the best decisions this next week, it would be so much appreciated. Also, please keep Clint in your thoughts and prayers. It is so hard to see him so uncomfortable. I love that man more than I could ever express, like I've said before I'm definitely the luckiest girl in the world!
Goodnight All!

I just thought this post could use a picture. This is from our anniversary at wasatch mountain state park. Beautiful, isn't it! (and btw he was just practice swinging on this shot...didn't want you to think he missed the ball:)