In Need of a Christmas Miracle

Clint's leukemia is back. Not that it actually ever went away. But it is really back. It has found a way around the Nexavar.
We have known for a few days that his counts were heading up and that he had peripheral blasts, but they had been fairly low. But today his blast count shot up to 60%. We had a clinic visit today where they pretty much went over our options 1)do nothing 2)do some low dose chemo at home and just see how long it lasts or 3)be admitted to the hospital for another round of high dose chemo. Dr. Hoda said he doesn't recommend option 3 at all, he just doesn't think there are any benefits to it. So right now we are going with option 2. He said at some point the leukemia will find its way around everything. So that's where the needed miracle comes in.
A miracle is the only option for a cure that we can see right now. I believe with all my heart that it is possible. We have already been the recipient of more than one. But I also know that my Heavenly Father has a plan for each one of us, and only He knows what that plan is. I pray everyday that His plan and my plan are the same thing. I just pray that Clint, myself and our boys will have the strength to deal with whatever this life has in store for us.
It has been a very emotional day for us today. But as hard as it has been we have been blessed so much more. I can not believe how much we have received this holiday season. It is really an amazing thing to see how much goodness there is out there. I hope that everyone out there has an amazing Christmas! If you can please keep us in your prayers, and pray for that much needed Christmas Miracle! Thank you all, Love you!

We're still here and doing pretty good. I have so much to post about but I am too tired to do it tonight. But I promise I'll try and do it soon!
Thank you so much to everyone out there who are doing so much for us. We are loving the 12 days of Christmas. And Santa delivered some presents for the boys early the other night. Plus the amazing anonymous donations we have received. And so much more. We are so blessed. I don't even have words to describe the love we have felt. I wish I knew who was doing all these wonderful things for us so I could thank you in person, but just know it means the world to us. I pray that one day we will be able to pay it forward.
I love the Christmas season!

Sorry I never posted about our results of the biopsy. It wasn't good but wasn't horrible, it came back with 15% blasts in his marrow. They feel like at least the drug seems to be keeping it under control right now so we just have to pray it will continue to do that
Clint has been feeling pretty good still. We are actually out of town this weekend. (kinda scary but exciting) More on that to come later.
Hope everyone has a great weekend. Thanks for all the thoughts and prayers, keep them coming please. Love you all!

waiting

Still haven't heard anything about Clint's biopsy results...Could make for a long weekend. But hopefully it'll be a good, long weekend:)
Other than that things are pretty much the same. Clint did have a bout of nauseousness yesterday which was no good (he really hates to puke, not that I blame him) but seems to be feeling better today so hopefully it was just a fluke.
Well we're off to try to find something (anything) to do today. Feel free to send over some ideas :)
Please keep praying for good biopsy results. Thanks Everyone!
Have a happy weekend!

We made it! We went to clinic yesterday. It was the first time we'd had to go to LDS Hospital since Nov 18! Yep that is almost 2 weeks! We are also coming up on our longest stay at home since Clint was diagnosed. We had 29 days of being home after transplant before he relapsed and had to be readmitted, and we are at 26 days at home right now:)
Clinic was good yesterday, but VERY long. Our appointment was at 11:15 and we ended up being there until after 4:00. They gave him a 2 hour IV infusion of something to help keep his bones strong, and then we got some platelets, and then they decided to do a bone marrow biopsy. Dr. Petersen is very curious to see what is going on in his marrow. His counts are still pretty good. They have actually started going down again, which has never happened before. The docs seem very encouraged that the Nexavar is definitely doing something, they just don't know exactly what, thus the bone marrow biopsy.
We aren't sure if we want to know what is going on in there or not. As Clint said yesterday sometimes ignorance is bliss:) But I am expecting good news this time. Clint has been feeling really good, and we really believe that this drug is working some miracles in there. So please keep Clint in your thoughts and prayers that we can get some good news from this biopsy.

On another note I really meant to do a thanksgiving post and I just wanted to name a few things I'm most grateful for...
Family-we have the best!
Friends-we have the best!
Doctors, Nurses, PA's (everyone at the hospitals)-we have the best of those too!
Miracles
All the countless blessings we have received (from those we know and those we don't, we have had so many amazing things happen, you know who you are even if we don't, thank you!)
All the prayers and fasting that have been said and done in our behalf
The Church of Jesus Christ of Latter Day Saints
My relationship with my Heavenly Father and Jesus Christ
and most of all
I'm SO thankful that my husband is still here. There were definitely times that we did not think he'd be here for the holidays. And I pray that we will have many, many more holidays together with our boys!
We truly are so blessed and I just want everyone to know how much it means to us. It is truly humbling to be the recipient of so many acts of service. It is amazing! Love you all!

**I hope everyone had a wonderful Thanksgiving! We sure did! And if anyone has any great ideas on what to buy two 7 year olds and a 4 (almost 5) year old for Christmas feel free to share :)

Sorry it has been so long since my last post. Things have been going really good. Clint has been feeling great and his counts are looking pretty good. We have been going to the AF Hospital for blood draws everyday, and have been getting platelets at least every other day. But at clinic today they lowered his platelet parameter to 30,000 and he was at 57,000 today so we don't even have to get a blood draw tomorrow! It is going to be a hospital free day!!! The docs seem happy with his counts and just told him to keep on doing what he's doing. We actually don't even have to go back to LDS Hospital until Dec. 1, that seems like an eternity (we are crossing every finger and toe that we won't be back before then:).
I just had to share this picture. This is Clint's stomach after giving himself an insulin shot:( He obviously had very low platelets this day.
And a few more pictures of what we've been up to...
Here is Noah getting his hard cast on
And this is what the end result looks like...yes, it's VERY colorful! We could not talk him out of getting this one.
Luckily he only has to have this full cast on for 3 weeks. We go back on the 30th to get a short cast on and we are really trying to convince him to try out a new color on the next one:)

Clint and I went golfing at Thanksgiving Point yesterday. It was so beautiful and so much fun (and a little cold). Clint played really well and I actually had a few good holes myself.
Here is our self portrait...Love this guy!

Well I am exhausted tonight so I'm going to go to bed. But as this Thanksgiving week is approaching I have so much to be thankful for. We are so blessed and we are so grateful for all of you that bless our lives everyday! We will never be able to thank everyone enough or repay all the kindness, but please know that we love you all! Good Night!

We were able to come home on Saturday! I know crazy huh?!? From the ICU to home in just a few short days. When Dr. Asch came in to talk to Clint before discharge on Saturday she told him she has decided that he is a cat because he has so many lives:)
It is so nice to be home and just be able to spend time with the boys. We sure do miss them when we are at the hospital!
Clint is feeling pretty good right now. He does have to get some platelets today, but we are able to just go over to American Fork Hospital to get them. His wbc was down to 600 today with only 16% blasts which is definitely better than the 80%+ blasts that he has been having. His blood sugar has been really high so he has to give himself insulin shots quite a bit (which looks awful to me but he says it doesn't hurt much).
So now we are back to just enjoying every day since who knows what tomorrow will bring. We are asking for prayers that this new medicine will help to put him into a remission (which will be a first) and that he can continue to feel good.
We are so blessed and I really want to thank our Heavenly Father for all the amazing blessings in our lives. I am amazed every day at the blessings we continue to receive. Thanks to all of you that add joy and hope to our lives everyday! We love you!

Out of the ICU...And a Broken Arm

We are out of the ICU! We were able to move back up to East 8 yesterday, which was great news. His breathing is doing much better. They are fairly certain he had a pulmonary hemorrhage (which is pretty much bleeding in the lungs). But by pumping him full of platelets (they moved his transfusion parameter from 15 to 75) and giving him some breathing treatments they were able to get it under control fairly quickly. He was able to start using the nasal cannula today instead of the full oxygen mask, which he was very happy about. The pulmonary docs are very happy with the way his lungs are sounding and the way his chest xrays are improving. So all that is really great news!
Now all we have to do is get rid of the leukemia...
His counts are continuing to climb, his wbc was 44,700 with 80% blasts today, which is definitely not great. We were able to start the sorafenib last night, and we are hoping that between the sorafenib and the hydroxyurea his counts will start dropping really soon. If not we will probably have to do another round of high dose chemo to try to get them under control, which at this point we are trying to avoid if possible.
All in all he is feeling pretty good. We have been able to get out for a couple of walks which is always nice. We are just trying to stay hopeful and positive (which is definitely not easy sometimes). But we know that God has a plan for us. And we know that He is a God of miracles. So we are praying that His plan includes another miracle for us! We are so grateful for all that we do have. For the amazing family and friends that we are blessed with. And for all those we don't even know who have prayed for us. We love you all and are truly blessed!

In other news...Noah broke his arm yesterday! I know, not a huge shocker for anyone who knows him :) He was climbing on the swing set at Clint's parents house and fell off. Surprisingly this is the first broken bone for our family. He just has a splint on it right now and goes back on Tuesday to get another x-ray and a cast put on. I will just be surprised if he doesn't break it again before they get a cast on it! My mom already said that he was trying to tackle Nate tonight (I told her maybe she should pull back on the tylenol, maybe he needs a little pain to remind him he has a broken arm).

Here is the x-ray. He broke both bones.

And here is our tough little man with his cool new sling! Love this kid!

ICU

Clint is in the ICU. His blood oxygen level was continuing to drop and they were worried that he might have some bleeding in his lungs, so they moved him down here about 1:30 am. They are giving him breathing treatments that are supposed to stop any bleeding in the lungs and some extra platelets. He is also on more oxygen then they allow upstairs.
Hopefully we can get him on the mend and out of the ICU within a couple of days. Thank you for all the thoughts, prayers, and support. Please keep them coming.

Rough Couple of Days

Well I guess I should start where I left off on the last post.
First the good news...We had our phone conference with the insurance on Thursday and it seemed to go well. I think Dr. Hoda made a good argument for us and Clint was also able to express that he wanted to be able to continue to fight his leukemia. The committee didn't ask many questions which we took as either a good sign (we made a good argument) or a bad sign (they already had their minds made up to deny us). They told us they'd have an answer by Monday but we haven't heard anything yet. But... on Friday afternoon we got a call from the drug company itself saying we had been approved for the drug through their REACH program (a financial assistance program). So we will be getting the sorafenib on Wednesday, which is great news!
Now the bad news...So we had a clinic visit on Thursday and Clint's leukemia is back. And like before it was coming back with a vengeance! On Tuesday when we had a blood draw at American Fork Hospital his WBC was 700 with no blasts and on Thursday his WBC was 10,300 with 37% blasts. They wanted to have us check in and start another round of chemo the next day but I told them it was Clint's birthday on Saturday so we would not be checking in until after that. They agreed so that was the plan, go home on an oral chemo called Hydroxyurea(sp?) and get blood draws daily at American Fork, enjoy Friday, party on Saturday, and check in to the hospital Saturday for a round of chemo. So that is what we did. Friday we woke up and went over to AF for a blood draw, his WBC had jumped to 20,600 with 77% blasts which made us nervous that we weren't going to make it to Sunday to check back in. Then we took Noah and went to Fox Hollow and golfed 9 holes (thank Kevin), it was really great weather! We took the boys up the canyon after school for a jeep ride (thanks for coming Trev & Mel, Camie & Jeff, and Mom & Dad J). We roasted hot dogs and had smores. And the boys thought it was super awesome that we had to pull Grandpa Jeppersons Razor all the way back to the trailer :)! It was a lot of fun! Saturday was the BIG BIRTHDAY! We had to run over to AF for another blood draw and were pleasantly surprised that his WBC had gone down to 7,100 with 65% blasts (yeah the oral chemo was helping) We had a birthday breakfast for Clint (orange rolls, bacon, eggs, & hashbrowns) and then we just relaxed for a while until the big party. That afternoon we had both of our families come over to our church for a couple of hours and just hung out. It was really good to see everyone and we had a really great time. Thank you so much for everyone for helping us put it together last minute. That evening we got ready for Halloween and went over to the ward trunk or treat (that thankfully was under the pavilion). It was pouring rain and pretty cold so after that we just went home and hung out with the boys and watched some halloween TV:)
Up until this point Clint had been feeling really good. Then that all changed. Saturday night about 11:30 he started getting some really weird pains in his hips and legs. It got bad enough that we called the hospital around midnight. They told him they thought that it was restless leg syndrome. They gave him info on how much meds he could take and that it should go away at some point. Well he ended up having one of the worst nights ever. He was up ALL night. He said it wasn't really that painful (although from the looks of it I would argue otherwise) but that it was just REALLY uncomfortable. Well by the morning he could barely walk. So we gathered our stuff and headed to LDS (I guess it was good we were checking in that morning anyways).
So he was in quite a bit of pain by the time we got to the hospital, so they gave him quite a bit of pain meds but they couldn't get it under control so they finally ended up putting him on a pain pump. They told us that it definitely was not restless leg syndrome but they didn't know what it was. They were worried that the leukemia might have formed a tumor and was pressing on his spine so they did an MRI. But thankfully that came back fine. He was pretty much just drugged up all day Sunday, I don't think he remembers much of it. I can't even count how many times he woke up and asked me what day it was and what they were doing to him! But don't worry Mark & Pam he does remember you guys being here :)(and thanks so much for lunch it was yummy, love you guys!) They decided to hold off on starting the chemo until we could figure out what was going on and he could make a coherent decision. His blood oxygen level was starting to get low so they put him on some oxygen to help it stay up.
This morning the doctors started to get really worried about him. They are pretty sure he has a really bad infection, but they don't know for sure. They were worried that he was developing sepsis. They started him on a bunch of antibiotics to hopefully get on top of everything. His blood oxygen level has gotten progressively worse throughout the day and right now we are just trying to keep him out of the ICU. We are on the most oxygen we can be on here on East8 so if he can't keep his oxygen level up they will be taking him to the ICU.
I'm not going to lie. I am really scared right now. The doctors came in this morning talking about "DNR's" and "are we really sure we even want to go the ICU if it comes to that". It is all just so overwhelming. We had my mom bring our boys up and Clints parents came up because we didn't really know what was going to happen. Gratefully so far he is holding his own and I am just praying that he is able to hold his oxygen level steady and that the antibiotics will do their work and he can start improving.
We really need prayers tonight. Please say a few extra ones for Clint. I will try to keep you all updated as much as possible. Thanks for all the love and support.

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:)

patiently waiting...and praying

So we had the bone marrow biopsy today. The test itself went well (or as well as they can go I guess). We probably won't get any results until Friday. So until then we just wait patiently and keep on praying like crazy for good news.
Thanks to all of you out there who offered a prayer or thought for Clint today. It's amazing what a difference it can make.
I'll try and post when we get the results. Prayer, Patience, Prayer, Patience, Prayer,.....
Love you all!

Need Prayers

We have a big day tomorrow and could really use some extra prayers!

Let me start by saying that we had a really great time away for our anniversary. On Wednesday we went to Midway. We golfed at Wasatch Mountain State Park, which was beautiful. We even saw a moose on the 9th hole! We stayed at the Zermatt (thanks Bryce & Allison) and then in the morning we headed to Wolf Creek (thanks LaDee) where we stayed Thursday night. We mostly just lounged around while we were there, we went for a few walks, it's really beautiful there. We had a really great dinner that night. It would've been a perfect couple days if only Clint wasn't having pretty high fevers the whole time:(
We were supposed to go get a blood draw at American Fork on Friday. But since Clint had still been having fevers and had a rash that was getting progressively worse we decided to just go to LDS for the blood draw. All his labs looked okay and Dr. Asch thought the rash looked a lot like a GVH rash (graft versus host). She told us to keep an eye on it and they'd check it again at clinic. Well we had our clinic visit today and everyone we saw said it definitely looked like a GVH rash. Which is good because if he has GVH there is a good chance that he will get GVL(graft versus leukemia) which is definitely what we want. So they took a skin biopsy today to see if that'll give us any extra info on the rash. His platelets have also been trending down the last week, which can be from GVH or can be from leukemia. So they gave him some platelets (and some potassium because it was low) and decided that tomorrow they will do a bone marrow biopsy to find out for sure what is going on in there.
So that is where the prayers come in. This bone marrow biopsy will either bring us really good news or really bad news. Also, Clint is pretty miserable with these fevers and this rash. So if we could get some extra prayers that this is GVH and that it will do it's job and then leave that'd be awesome :) Thank you so much for all the support! We couldn't do this without the amazing people around us. We love you!

I also want to give a BIG thank you to Clint's family and everyone who helped and came to the yard sale Saturday! You guys are the best! And a BIG thanks to Riker for doing the donor drive. I know I feel great knowing that I could possibly save a life! If you were not able to make it I will be posting the information on how you can sign up for the donor registry online really soon...so stay tuned!

Home

We're Home!!! We finally just said we're out of here! The doctors weren't super excited about the idea, but since they knew they weren't really doing much for us there anyways, they didn't fight us too much. Clint is still having a fever here and there, but they haven't been able to find anything. So we're hoping that with all the antibiotics he's on one of them will do their job. He finished his last dose of vidaza today so maybe that will help the fevers go away too, who knows.

Well tomorrow (or today now because it's after midnight), Wednesday, is the big '10 year anniversary' (I think I misled people on a post earlier to believe it was on Tuesday, but thanks for all the sweet messages, I just figured we'd celebrate a little today too:)! So Clint and I are taking off for a couple days (thanks to some amazing friends and the best transplant coordinator in the world) so I probably won't post again for a bit.

Just a quick leukemia update...Clint's counts are looking pretty good. The vidaza brought them down a bit, he had to have a blood transfusion on Sunday, but they seem to be coming back up again. We were lucky that we started the vidaza when his counts were almost normal, I think that helped a lot.
Yesterday was a little rough for me. I think I just needed one of those mini breakdown days. I was just feeling like all of our doctors have given up on Clint and it was very frustrating. I've been spending a lot of time on the LLS(leukemia & lymphoma society) message boards the last few days, just trying to find out if there is anyone out there in a situation similar to Clints. I have come across a bunch of new information, drugs, treatment options, etc. So we have been talking a lot to our transplant coordinator, LaDee, to see what she's heard about some of them. She is going to set up a conference with one of the docs soon so we can go over all the questions I have and see what our options are. I know that our situation is bad. Really bad. But I am going to fight for all the time we can get! Don't get me wrong, I have a lot of faith in our doctors. I believe they are doing what they think is best for Clint. I just want to know there is a plan in place if the vidaza stops working. So hopefully we can meet with the docs and get some answers about what treatment options are available to us, should we need them.
I know it will take a miracle to cure Clint of AML. But I believe in miracles. I believe they happen everyday. I have seen them happen for us already. And I see no reason why we can't believe we will get some more miracles.

Anyways, I'd better get some sleep. But if we could get a few extra prayers for Clint's fevers to go away that would be amazing! Again, we are so blessed and so grateful for all the love and support we have around us. Thank you so much!!!

***Don't forget about the Be The Match Donor Drive this Saturday! Come join me in signing up to be a donor and possibly save a life! And stop by the Jepperson Family Yard Sale Friday & Saturday!

My Mom

I don't know what I would do without you mom! Hope you had a super duper birthday! You deserve it so much! Thanks for always being there for me. I could not have dreamed up a better mom. I love you more than you'll ever know!!!
I know you'll probably kill me for putting this picture on here, but I wanted everyone to know what the best mom in the world looks like! We love you!!!

Jepperson Family Yard Sale #2

Clint's family is having another yard sale!!!

This Friday September 24 from 10-8
& Saturday September 25 from 8-4
Location: 1855 W 1100 N
Pleasant Grove

They'll have tons of great stuff!
So come by and find something you never knew you needed :)
Feel free to spread the word.....Thanks!

YOU COULD SAVE A LIFE

Riker, one of our nephews, is doing something amazing. For his Eagle Project he has decided to do a bone marrow drive. The donor drive is this Saturday September 25 from 3-5pm at the LDS Church building located at 1000 N 900 W in Orem. He is hoping to sign up at least 75 new donors during the drive that day.
Please, if you can, come support Riker, Clint, and all those waiting for a bone marrow or stem cell transplant by signing up to be a donor. If you have any questions about becoming a donor you can get more info by clicking here. Be The Match has asked the family to raise $1000 to help offset the amount it costs to register people, so if you would like to donate to Be The Match you can click here and donate through the friends4clint fund (just be sure to write Be The Match in the memo so we can be sure to get them the money).
If you have any questions please leave a comment or call one of the numbers on the flier below

A big thank you to Riker for doing this. And for all of you who support us everyday.
Please come sign up to Be The Match and you could Save A Life!!!

Back in the hospital :(

Well we are back up at LDS. We started the Vidaza on Wednesday as planned, then Thursday morning Clint woke up with a fever of 102.7. He walked the boys to school with me and when we got back it was down to 101.1. So we called up here and talked to Peter, the PA(physicians assistant), and he really wanted us to come up but we talked him into letting us just go over to American Fork Hospital to get blood cultures drawn and get some antibiotics, since we were supposed to go there to get our Vidaza treatment anyways. So we headed over to AF and were pretty much there most of the day.
The boys had a school carnival that night and Clint was pretty tired so we left him to rest while me and my mom took the boys to the carnival. When we got back around 8pm (with 10 bazillion balloon creations) Clint was shivering on the couch, so I made him take his temperature again. Well it was up to 104.2 which definitely meant we were heading up here to LDS Hospital.
We got up here about 9:30 and it took them a few hours to get his fever under control. It got up to 106.5, which was really scary. They still don't know what is causing the fevers, it could be the Vidaza or an infection, who knows. They started him on a few new antibiotics and so far none of his blood cultures have grown any infections, which is good, so we are thinking it is probably the Vidaza because it seems like he has always had fevers when receiving any kind of chemo. But only time will tell. He went a few hours this afternoon without a fever but it is starting to climb back up tonight :( Hopefully we can keep it from getting anywhere near as high as it got last night! The crazy thing is that this Vidaza is supposed to be a more mild chemo, with less severe side effects, but so far it has been a little rough for Clint.
I have told Clint and all the nurses that we better be out of the hospital by Tuesday because I do not want to spend our 10 year anniversary in the hospital (hopefully). But I guess we will just see what the next few days bring.

On a more positive note...we did have a really good week up until yesterday. Monday after our clinic visit Clint took me out to a romantic dinner. We ate at Log Haven, which is on old cabin up Millcreek Canyon. We ate outside in front of a beautiful, natural water feature. It was so nice to have a quiet, romantic dinner. Then on Tuesday Clint went golfing and played the best he has played in a while, and then that night we took the boys to see Despicable Me which was such a cute movie. And on Wednesday Clint and I were able to go to the temple and do some sealings, which was such a great reminder of how blessed we are to know that we can be together forever! We were able to witness sealings for people who died in the 1700's, so it was fun to think how exciting that was for them after waiting so long to have their work done. It also made me realize that I really need to get to the temple more often. But it was definitely an incredible few days!
I want to thank everyone for all your messages, well wishes, prayers, thought and love. It means so much to us that we have so much support! Love you all!

Clint's first post ever!!!

The past few months have been full of so many ups and downs, and ups and down, and crap and the unknown. How the heck are you suppose to know what to do and when to do it and if u can do it or should be doing it. So we got a bone marrow biopsy on Monday because they wanted to see if the Leukemia was still in the marrow. We got the results this morning, which they told us that there is about 4% of Leukemic cells or cells with those markers. So the plan is to start a treatment with a drug called Azacitidine or (Vidaza), which is a drug that becomes incorporated into DNA and changes the structure of the DNA to allow the genes that suppress growth of the leukemia cells to function. So now we have 7 days of this treatment which fortunately for us we should be able to do at American Fork Hospital. So the success rate is about 50% of this stuff having an effect on the leukemia, and each case is obviously different but people can have anywhere from months to around a year to possibly longer. So back to planning things and what and when and how to do, sure would be nice if we knew what was going to happen from day to day. We have our 10 year anniversary next week and would like to be able to do something for it but we will probably have to be around to see a doctor or something. Oh how crazy life is, but thanks for everyones love and support and understanding when we don't know what or when or why we are doing what we do. We hope to have many more good times with all of you. Life is still good and we are fighting for the best possible outcome from all of this crap, so thanks for all your hopes and prayers in our behalf.

Beautiful Temple Square

Things have been going really well since I last posted. We went to American Fork hospital for a blood draw on Friday and everything still looked good. His platelets were coming up on their own (52) but his hematocrit was right at his transfusion level (24) so he ended up getting some red blood that day. He had a white blood count of 800 and had 400 netrophils (so he was still a bit neutropenic). While we were getting our transfusion we were informed that LDS had called and said we didn't need to get another blood draw until our clinic visit on Tuesday! I wasn't quite sure how to feel about that. It was just weird after getting it drawn everyday to go for 3 full days without getting it drawn at all. So I was a little apprehensive about what his labs would show at clinic today....

But they were great! His platelets jumped all the way to 111. His hematocrit was holding at 26.7. His white cell count was 2900 and he had 1900 neutrophils!!! Dr. Asch was very happy with what she saw. So as you can imagine it was a very good (although long, as always) clinic visit! And we don't get another blood draw until Friday at AF. I think it's vacation time?!?


After clinic my mom was nice enough to drive the boys up to Salt Lake. We just hung out at temple square for a couple hours. We walked around the visitor centers and checked out the view from the Joseph Smith memorial building. We walked through the tabernacle and the conference center. It was really nice!

Here are the boys in front of the Christus statue

Nate & Clint

Nate in the JSMB

Clint again

And our forever family

It was a great day, followed up with some great food at Iggy's! Yummy Ribs! Thanks again Mom for bringing the boys up and for playing with us! We love you!!!


I also want to give a heart felt thank you to all of you out there who have ever donated blood. It is really an amazing thing you are doing for complete strangers. Every time Clint needs blood or platelets I think to myself "what would happen to him if these people weren't willing to donate?" It is a very scary and humbling thought. I am forever indebted to all who have donated. I love you!
I also want to let my Heavenly Father know how much I love him! I have been blessed beyond measure, and have been able to witness miracles firsthand. This experience has strengthened my testimony so much and has brought Clint and I closer than I even thought was possible. I am so grateful for eternal families. And for the knowledge I have of that incredible blessing. What an amazing thing it is to be a member of The Church of Jesus Christ of Latter Day Saints!

I am a lucky girl!

Another Good Day

Everything is still looking good today! Clint's platelets went up on their own for the 2nd day in a row. His hematocrit went down a little but not enough for a transfusion. His neutrophils are still at 100 so he is still neutropenic (has to be above 500 to not be). And his white cells came up to 500. He did have another fever this morning but it seemed to go away quickly, like usual. We think that his fevers might just be from his cells starting to come back since nothing has grown out of his blood cultures.
We did go golf 9 holes today! (Thanks Kevin!) It was so good for Clint to get out and do something. It still makes me pretty nervous to be outside with him neutropenic but he seemed really happy to be golfing. He felt pretty good, even afterwards (I thought he'd be exhausted)!
But I'm pretty sure the exhaustion has kicked in...Have I mentioned I LOVE this man!
Yes he might kill me tomorrow for posting this picture :)

Here are a couple pictures of Nik & Nate that I just wanted to post because I hadn't yet...
Here they are on their birthday. I still can't believe they are 7!!!
And here they are on the first day of 1st grade!
They were a little nervous and A LOT excited!
And here is one of Noah, just so he doesn't feel left out!

I'm so blessed to be able to be the mother of these 3 amazing boys! And to be married to their incredible dad! They are all so much fun and I love them so much! (I just need to try a little harder to remember this when we are doing homework:)

Here's to another great day tomorrow! Goodnight everyone!

I think today is a good day for a miracle

Well the past week had been going pretty good. We got Nik & Nate off to the first grade and they love it which is great! We'd just been plugging away trying to stay healthy. We had been going over to american fork hospital daily for blood draws, and so far things were looking fine. We went to a clinic visit up at LDS on Monday and Dr. Asch told us things looked good and we should get out and enjoy life a little. So here we were feeling pretty good about things.....
Until Tuesday morning. Clint woke up early with a fever of 102.7 (although he told me it was 101.9 and only admitted it was higher that night) but by the time we called the hospital to let them know a couple hours later it was already down to 100.3. They told us the doctors wanted to see us to draw some blood cultures and stuff. So we head up to LDS again. They do the normal blood draw, along with a bunch of other blood tests and we're sent to an infusion chair to wait. We're just thinking that maybe he needs some platelets or some red blood cells because he was feeling pretty tired that day. So while Clint is kind of in and out of sleep while we're waiting, I am checking online to see if our results are in (I can check on our insurance site, they post them as soon as they are available, which I've decided can be good or bad). Well the results come up and I start looking them over and I notice that both his platelets and hematocrit are both above his parameter for needing a transfusion. So I'm thinking great we won't have to be here too long. And then I see his blast count, which has been at 0 for a while now, which needs to stay at 0 (forever preferably), but it says 9...
I think I might have stopped breathing for a minute. Clint was sleeping, and I didn't want to tell him what I'd seen anyways. So I just sat there, for almost an hour, before the doctor finally came in. When he asked the nurse if there was a room available (because we were still in the infusion area) I knew we needed to brace ourselves for bad news. At this point I'm feeling really guilty for not telling Clint about the blasts, because I knew what was coming, although I'm not sure if that was better or worse. So Dr. Hoda tells us that there are blasts in Clints blood (yes I wanted to shake him and say, I know what do we do now, but I was really trying to be calm for Clint). He tells us that they are pretty sure they are leukemic blasts, although there is a very small chance that they could just be immature cells that show as blasts but will turn into healthy cells. He tells us they are sending them to the pathologist so they can look at them and see if they can tell for sure if they are leukemic or not, but that there was a chance they wouldn't be able to tell for sure without doing a bone marrow biopsy. At this point we start going over options of what to do from here (stay at the hospital to figure out his fever-which is completely gone by this point, maybe do another round of chemo, etc). Dr. Hoda said they would like us to stay at the hospital until the pathology reports came back, but this was at 11am and the reports wouldn't be back until 4 or 5pm at the earliest. So we told him we were going home. We did not see any point in sitting at the hospital doing nothing (other than another IV antibiotic that they ended up sending us home with anyways) when we could come home and spend time with the boys. Especially since we had no idea what tomorrow would bring.
So we left. We came home, played with the boys, had a nice night. And didn't hear anything from the hospital that night. Well this morning Clint woke up with the same crazy fever, but just like the day before it went down fairly fast. We decided to just go to american fork hospital for our blood draw. So we called up to LDS because we know that on Wednesday mornings they have tumor board (where all the docs meet to discuss all the transplant patients) and we let them know that the results of our blood work should be coming over soon so if they would discuss our case and let us know what the best next step would be that would be good. And then we wait...
Well about 11:30 we get a call from LaDee, our transplant coordinator, with amazing news. According to the pathologist the cells did not look leukemic, and there were no blasts in our blood draw today!!! LaDee was so happy on the phone, I wanted to reach through the phone and kiss her! It was the most amazing feeling I think I've ever had, I knew I had just witnessed a miracle! I just had a huge smile and wanted to dance around the house. We really wanted to do something to celebrate but couldn't think of anything that sounded fun and safe (we're still trying to keep Clint healthy ya know). So we just hung out with the boys, we took them over to the church to ride their bikes, and then we had a yummy dinner with my parents, and then went to Clints parents and had ice cream sundaes. It was a wonderful day!
This doesn't mean that we are out of the woods in anyway. And I'm sure we still have a long road ahead of us. But we are treasuring this day. This great news. And this miracle that we received today!
Today was most definitely a wonderful day full of miracles and love. I'm so grateful for all the prayers that are said in our behalf, I know that many of them were answered today! Love you!

**Sorry if this post doesn't make a whole lot of sense. It's really late, and I am in a weird state of mind, somewhere between complete exhaustion and witnessed a miracle today euphoria. So you'll just have to excuse the randomness:)

Sorry I haven't been very good at keeping up with the blog lately.
We got to come home from the hospital on Friday which is great. Stressful, but great. This is the first time we have ever been out of the hospital with Clint neutropenic (which basically means he has no immune system whatsoever). We have pretty much just holed ourselves up in the house and have limited our visitors. We are just trying really hard to keep Clint healthy, and so far it seems to be working. No fevers, no diarrhea, no nausea...so far, so good.
We go to American Fork Hospital every day to get Clints blood drawn to see if he needs any transfusions that day. Today was the first day he needed one, his platelets were pretty low, but luckily we had a clinic appointment today so we just did the transfusion up at LDS.
So far things are going well. Clint is feeling pretty good, just a little tired. He cleared his blasts on Saturday (which means they can no longer detect leukemic cells in his blood) so that's really great. So now we just pretty much wait to see what happens. They have taken him off all of his immune suppresant and anti rejection medications, except for the prednisone, and they are tapering him off of that fairly quickly. They are hoping by doing this it will help jump start the donor cells into fighting (hopefully fighting the leukemia and not Clint).
But for now we are just trying to cherish every day we have. We are enjoying spending time with the boys, and they LOVE having dad home everyday. I'm not gonna lie, I'm pretty terrified of Nik & Nate starting school on Wednesday. The thought of just how many germs they will be exposed to and probably bringing home with them is making me even crazier than I already am! But they are excited to start 1st grade, and really excited to take lunch to school. I can't believe those two are 7 already. I have a bunch of cute pictures from their birthday that I need to post but that will have to wait for another day, it is too late (or early) right now.
I just want to close by thanking everyone for all of the support. There is no way we could make it through this without all of you. All of the prayers, fasting, and thoughts are felt everyday and it means more than you will ever know. We love you!

I want to start this post by saying thank you. I have been overwhelmed by the prayers and the love and support that have been shown to us over the last few days. Both Clint and I have been blessed with amazing families and friends! So thank you so, so much!

Clint started chemo on Saturday and seems to be tolerating it pretty well so far. He is just a little tired. He has had a fever that gets pretty high at night which makes it pretty hard to get any rest. His blood cultures did show that he had some type of bacteria but the nurse said that it is a pretty easy one to get under control. So hopefully the new antibiotics they put him on will take care of that pretty quickly.
The chemo seems to be doing its job. His white blood cell count was down to 29,000 after only one treatment so that was a really good sign. And this morning it is down to 3,200 so hopefully soon he will have cleared all his blasts. The doctors were all pretty surprised at how well he is responding to the chemo, they weren't sure how well it would work with how aggressive the leukemia is. Even Dr. Asche, who is very blunt, and who told us on Saturday that if it was her in our position she would probably opt to go home and enjoy the time she had left, told us on Sunday that we had made the right decision to go ahead with the chemo. That made us feel pretty good, at least about that decision.
After his morning round of chemo on Sunday we were able to go home and spend some time with our family. It was a wonderful day. Clint and I both received blessings which was such a comfort. We also finally got to see our new beautiful little niece Lilly, who is the cutest baby girl ever (way to go Camie & Jeff, we love you guys)!
We had to be back at the hospital before 9pm so we could get his nightly chemo. He gets 2 kinds of chemo at night, one of them is a dark blue color. It is really crazy watching this blue medicine flow into him. It also makes his pee a greenish-turquoise color, which is a little weird.
We got to leave today again after chemo and all his other meds. We just went home and hung out for a little while, had a couple visitors, and then we went and had some family pictures taken. Luckily we have the most amazing photographer in the world right in our family. Kim and the fam met us at the temple and took a bunch of pictures of our family and of Clint with each of the boys. I am so excited to see them, I think they are going to turn out pretty cute. It was pretty emotional, but so worth it! I told Clint I felt like we were getting engagement pictures taken again, that is until all our boys jumped in :) It was a really fun time! Thanks so much Kim! (hope the boys are sleeping good for you right now)
So hopefully tomorrow we can get out of here after all his morning meds again. He should finish up with this round of chemo tomorrow night and then we just have to decide where we go from there. We still don't know for sure what we are going to decide, there are just so many unknowns and no good options. But I feel confident that we will make the decision that is best for us. I also feel a little hope, maybe unfounded, but hope nonetheless. Not necessarily that he will be cured of this leukemia, but that at least we will be blessed with a little more time than we first thought. And if that little more time turns into many more years, well let's just say you won't hear me complaining one bit!
I love that man more than I could ever say! I am the luckiest girl in the world to have found him and I wouldn't trade a second of our life together for anything. He is THE BEST man I have ever known and I am truly a better person for knowing him. And the best part is I get him FOREVER! Love you sweetie!!!

Goodnight all, please keep the prayers coming, we love you!

So I don't know how to start this post or what to even say, so you'll have to bear with me. I know it has been forever since I posted. I've really had such good intentions. I have so many pictures and things I've been meaning to post, fun things with the kids, jeeping up the canyon, not to mention the amazing golf tournament Clint's friends did for him(which deserves it's own post). But I've just been enjoying being home too much and have not even been on the blog for a while.
I guess it's a good thing we enjoyed it because it all came to a screeching halt yesterday. Let me start by saying since we left the hospital we have had clinic visits at least once a week. They have always been good, numbers looked good, everything looked good. Even last Wednesday at our last clinic visit everything looked good. So when we came to the hospital yesterday for our weekly clinic visit we were not prepared for the news we received.
Clint's leukemia is back. Not only is it back, it is back with a vengeance. When we came to clinic yesterday his white blood cell count was 68,000 (it was 12,000 on the 4th) and his blast count was 46,000 (meaning that 68% of his cells were leukemic). Today his white blood cell count is over 85,000 with about 60% blasts. So it is very aggressive.
Dr. Petersen and the PA Andrea came in and gave us the bad news. They also told us that we had 3 options to choose from at this point.
Option 1-Do nothing. Basically say enough is enough. Go home, work with hospice to get comfortable and try to enjoy the time you have left. Which for us choosing this option would give us only days to maybe a week at the rate his leukemia was growing.
Option 2-Start a drug called Vidaza. This drug has a 50/50 chance of slowing the production of leukemic cells. Which if it were to work should give us at least a little more time, maybe a few months, IF it works.
Option 3-Do another round of chemo with a fast taper of all the immuno-suppressant drugs he's on to hopefully stir up some graft vs host disease and some graft vs leukemia with maybe another transplant of Darrens cells if we need more. This is our only chance to cure the leukemia and at very best it has maybe a 10% chance of working.
So of course when they tell us these options everything in me is screaming well of course we fight, we choose option 3. But the more we talk about it the scarier this option seems. There are so many unknowns, we don't know how Clint will tolerate the chemo, we don't know if the GVHD will come on too strong and kill him, we just don't know what will happen. And Clint really does not want to spend what time he has left in the hospital. He wants to be home with me and the boys as much as possible. So we threw around thoughts on options 2 & 3 for a while with the doc and the pa and they had decided that we could take the weekend and think about it. We really wanted to at least have the weekend because it is Nik & Nate's 7th birthday on Wednesday so we thought if we could just be home for the weekend we could at least have an early birthday party for them. But then our fibrinogen(sp? something to do with blood, helping it clot, etc) test came back and it was really low. After that the Dr. came back in and said he really wasn't comfortable with us leaving the hospital. He was really worried that if we left there was a high chance of bleeding. And he felt that after all the information he had gotten back that if we didn't stay and get on top of the fibrinogen and the white blood cell count that in essence it would be too late to do much of anything. Dr. Petersen also felt that no matter if we chose option 2 or 3 we would need to do a round of chemo first. So instead of it being a quick clinic visit and then some birthday shopping, it ended up being the worst day of my life being asked to make an impossible decision.
So we checked in last night and they gave him cryoprecipitate which helps the fibrinogen levels come up and they also started him on a bunch of fluids to help prevent tumor lysis. They told us that if we stayed the night and got a platelet transfusion and cryoprecipitate transfusion and an echo of his heart (in prep for the chemo) in the morning we could leave for a few hours before they started the chemo prep and have a little bit of a party with the boys.
So that is what we did. We were able to leave around 2pm with strict instructions to return by 6pm, unless we were deciding to forgo the chemo and do nothing. Our parents and some of our siblings came up and we took the boys to the gateway. We went to build a bear and the boys each made a bear with a special recording from their daddy inside (that was hard to get through) then we played in the water fountains and then went and bought Nik & Nate a couple video games for their birthday and then ended with a snow cone. It was a really good day and so nice to see the boys having fun, but it was super emotional for Clint and I.
We came back to the hospital and started receiving even more fluids and they started the chemo around 10:30 tonight. We are hoping and praying that Clint can tolerate this round of chemo well because they said if he is feeling good we can go home during the day after the morning chemo and just come back for the chemo at night and to get fluids throughout the night. So hopefully we'll be able to go home for a few hours at least tomorrow. Doing the chemo will also give us a little extra time to make this impossible decision we are faced with, which is basically to throw everything the docs have at his leukemia with a very small chance of it working and possibly never being able to leave the hospital again, or try to control it for a while and have a better quality of life with the time you do have left.
I cannot believe this is happening. I am more scared than I have ever been. How are we supposed to tell the boys what is happening? I cannot even fathom a future on this earth without Clint in it. I want to yell at him to fight with everything he has, which I know he wants to do. But I also know that if his time is limited all he wants to do is spend time with me and the boys, and not in the hospital hooked up to things feeling sick. How do you choose between those two options? We have until Tuesday to decide which path we are going to take, that is when this round of chemo is done.
Please, please pray that we can make the best decision. Please pray for a miracle. Please just pray.

THANK YOU, THANK YOU, THANK YOU

I have not been very good at blogging this last week but I really want to start out by saying THANK YOU SO MUCH to everyone who came out to support us at the yard sale last weekend! I could not believe how many people donated things and how many people came and bought things. The plan was to start setting things out Friday so they could be set to go on Saturday, but as soon as they started setting things out people started stopping. They ended up having pretty much a nonstop flow of people all day Friday (seriously all day, even after dark people were still stopping) and most of Saturday! We have never felt more loved and it was so amazing to know how much support we have. I also want to let Clint's family know how much we appreciate them doing this for us. You guys are amazing and we love you so dang much!!! We seriously are the luckiest people in the world!

Clint has been doing really good since we've been home. Luckily (and surprisingly) he is the only one of us not to have gotten sick in the last week. We went to our first clinic visit on Tuesday and they said so far everything is looking good. His labs are pretty much right where they'd expect them to be at this point, so that's really great news. He continues to amaze me everyday. I was telling him today that I thought it was crazy that the docs made such a big deal of telling us how he'd need a caretaker to be available for him all the time, yet since we've been home I really don't feel like I've done anything for him. I told him he'd better start letting me do things to take care of him or I was going to start feeling pretty bad about my 'caretaking' skills :)
I had to throw this picture in here. This is Ali, she was our PA the day Clint got his diagnosis. And she is definitely our favorite! We love her! She is amazing and would give Clint all the crap he needed, because all of you who know Clint well know he can be pretty sarcastic and he is a smart A most the time! But she took it well and could always put us both in a good mood! Hopefully we'll be able to see her at clinic every once in a while!
I also had to put this picture on here. This is my Grandpa Ron. He is one of the funniest people I know. He got his hair cut pretty short a couple weeks ago and didn't want any of us to tell Clint before he saw him. When he got here he told Clint that they were twins now! These definitely are two of the best looking guys around! Love you both!!!
Well I better get to bed. The boys get up a little earlier than we did at the hospital :) Again thank you for all your love and support. Please remember to keep Clint in your prayers, we still have a long road ahead of us. Love you!

...oh and just a reminder, if you want to come play golf you need to get signed up this week. You can click here for all the info. It will be a lot of fun so don't miss out! I am also working on getting a marrow drive together to have at the tournament. I will post more on this as I get more info but if you want to do some research in advance you can go to www.marrow.org. Help us save more lives!!!

home sick

we're home.
it's great.

except.....
nate is puking. and i have a headache. and i'm exhausted. and now i don't dare sleep next to clint because i'm afraid i'm covered in nate's sick germs. so it looks like i'm sleeping in the hall to listen for the next puke fest.
lovely.
welcome home.

now let's just pray that it doesn't get passed on to clint. ugh.
maybe the hospital wasn't so bad!!!

A date night before we go home

Everything went good with the doctor today. The only bad news we got was that Clint shouldn't golf while he has his central line in :( He wasn't very happy about that news, especially because that was one of the things he was looking forward to most. But oh well he'll be ready to golf when the line comes out and then the weather will hopefully be a little cooler too!
Now it sounds like we will be coming to clinic twice a week for a while and then once a week until day 100. Then we will come in for the big checkup and bone marrow biopsy. This is when we will find out for sure if Darren's cells have taken over and if the leukemia is gone. So for now we will just keep him healthy, take his meds, and wait and hope for the best possible news!

Tonight we told the nurse we were leaving for a while and we went for a drive, picked up some pizza and went over above memory grove and watched the sun go down. It was a little cold (I know weird) so we mostly sat in the car and ate, but it was really nice. Almost like an actual date! It was a really beautiful night, these pics are from my phone so they're not the best but it'll give you an idea of how beautiful it was...
I really love it up here in the avenues. There are so many trees and I love all of the old houses. It is so nice to walk around up here, I will miss that part of being here. But I am so excited to go home, a little (or a lot) nervous too, but mostly excited! We would love visitors, so just make sure you're healthy and come on over to say hi!

Thanks so much for everything everyone has done for us. We are so blessed!