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.
Brownie Peppermint Bark Pudding Trifle
1 day ago
1 comment:
Oh, Amy. I wish there was something that I could do to help. I will be praying for you and Clint. I love you both. Thanks for keeping us updated. If you need to chat, give me a call.
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