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!
Tuesday, August 24, 2010
Monday, August 16, 2010
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!
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!
Saturday, August 14, 2010
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.
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.
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