Thursday, November 18, 2010

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!

Monday, November 8, 2010

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!

Thursday, November 4, 2010

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!

Tuesday, November 2, 2010

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.

Monday, November 1, 2010

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.