This is the better news post I was hoping to write!
As you all know, we had a terrible scare on Wed. the 26th. Zed's liver functions were skyrocketing each day and he was in terrible pain all night Tues. When the Dr's came in to discuss his case they were pretty grim to say the least. The liver specialist was quite blunt and to the point, saying that if his counts continued on this trend, his other organs could follow and the inevitable would happen. After he left I looked at the nurse and said "what do I do with that?"
She just sort of looked sad and gave me a hug and told me she was sorry.
I was also sort of getting mixed signals from the oncology team, who were saying that even though his counts were going up, he wasn't in liver failure yet and his counts could remain high for days before that happened. Then I ran into the Dr who was on hospital rounds this week,(each week the Dr changes) and asked him point blank, should I get my children here? His answer was, "probably, I'm sorry."
So at that point, I knew I needed to act fast because of the approaching holiday travel rush. My first thought was that I would just ask Kory to come, but then I knew Brady had been having a difficult time being without his dad, so one thing lead to another and everyone made arrangements to come. Walmart was generous enough to pay for 1 flight under the circumstances, and Kory had some sky miles, so he, Brady, and Chelsi flew from Utah. Kristy and Jason changed their plans as they were going out the door to Wyoming and drove with Kristie and Parker here instead. Melissa had to drive to Billings and fly to Denver with a 3 hr layover and arrived here at midnight. I hated to take that step, but didn't want to look back and regret that I waited too long.
It was a very stressful and terrifying experience, not knowing how this would all play out. The arrival of the kids helped soo much!
I talked to the High Priest Group Leader ( Bro. Ed Smith) and asked him if maybe he could bring the kids from my hotel after the shuttle brought them from the airport, and he said "no, let me go get them." He and his wife took 2 cars, gave one to Kory and led him to the hospital, where they decided to spend the night with me. Kory drove back to the airport at midnight and got Melissa. The Smith's also insisted we use their daughters house who was out of town, it's about 10 min from the hospital. Then they wanted to know if we needed them to cook us a Thanksgiving dinner as well. What amazing people!!
We were'nt sure we would have much to be thankful for on Thurs. morning, but one count had come down slightly and the other rose slightly. So we said, "hey we'll take what we can get!"
I also forgot to mention that they had decided to give him 2 bags of platelets and go for the liver biopsy on Wed. also. They were able to go down through his jugular vein and had little bleeding.
Zed responded well to seeing the kids and one of the liver specialists said later, "my team tells me that you guys had a lot to do with these counts coming down." Friday morning one of the counts had come down over 1000 points, after going up more because of the biopsy-it sort of aggravates the liver-the other count came down about 200 points. We were thrilled to say the least. This morning, one count is at 432 and normal range is between 8-48, highest level had been 2618. The other count is at 554 with normal range between 7-55, highest level had been 994. So he is definitely moving in the right direction! He still has a ways to go, he is still putting on water weight, but they said that is to be expected, they may try to remove some of the fluid in his abdomen next week if needed, but only if his platelets will allow.
He is resting much more comfortably and will talk with the kids a little. He also has been able to hold a little food down, his food of choice is lemon italian ice. They did let him say hi to Parker and Boston briefly, which was very nice. The staff has been so awesome! They have tried to accomadate our family in whatever way they can-letting 4 kids spend the night here Wed. It makes you feel good when several of the nurses have let me know how worried they were and have been praying for him, also tells me how sick he was!
Sorry, I didn't intend for this to be a novel. But now last but not least, our family wants to thank everyone who might read this for all of the faith, prayers and fasting on our behalf!!! I know what a miracle has happened and how it happened! We have been amazed at how many people told us they were fasting and praying for him. Our bishop at home called a special ward fast, Roice was inspired to call a family fast, my dear friend Colleen called old friends in Riverdale, Zed's family, the Smith's and Kristie's family also. It was so comforting to know that so many people were helping us. What would we do without the gospel and our faith? Kory rallied my kids and has been such a rock and it has helped so much to have them all here, I hate to see them leave, but know they have jobs they need to get back to.
He still has a ways to go, but is definitely doing better. He is resting much better and trying to eat so that is so nice to see. Again, thanks so much! We love all of you and appreciate your concern for this dear, sweet man.
Love Lannis
Saturday, November 29, 2008
Tuesday, November 25, 2008
Update from Mayo-Day 18
Well, I will try this again, somehow the update I just wrote didn't work, so I'm starting over.
Some of you have called and know pretty much the latest that is going on, but I will try to summarize for the rest of you.
It has been a trying week to say the least, we knew this wouldn't be a walk in the park, but it seems like everything I worried about is happening. Saturday evening Zed's nose started bleeding about 6:30 and we couldn't really get it controlled until about 4 am. I was putting pressure on the bridge while the nurses were putting cold compresses on his forehead and getting platelets in him. He also had blood running down his throat, which caused coughing and vomiting, and made things worse. Once we finally got it stopped, they told him to try not to disturb the clot and so he could hardly breathe. It was a very LONG night. He also gained 2 kilograms of water weight in 12 hrs which is a lot!
Sunday morning he finally said, "I'm getting rid of this clot" which scared me to death. I thought we were going to start all over again, but it actually helped and he could finally breathe normally again. He had a pretty good day Sunday and even managed to lose some of the water weight, with the help of some diuretics. But on Monday morning his weight had gone back up and his liver functions had gone WAY up. They do labs every morning and give us the report so we know where we are. (His blood counts are actually looking pretty good.) Anyway, after discussing this with the team of Dr's, they have decided that he may have a condition called, "Veno-Occlusive Disease". This is something they have been keeping their eye on but when the liver functions went way up they felt that may be why his legs and feet have been swelling, he has had rapid weight gain and swelling in the abdomen. It is a condition that is caused by the high dose chemo and described as a "potenially serious" problem. What happens is that the tiny vessels in the liver become swollen and clogged and therefore the liver is unable to process the blood and clear the toxins out of the body. They called in a couple of liver specialists to consult on the case as well. They can't be 100% certain that is what he has without a biopsy, but don't want to do one as it would be too risky because of his low platelet and clotting problems. They did decide to try an "anti-clotting" medication that may thin out the blood in the liver and allow it to start working properly again. They have also taken away any medications that may be stressful to the liver. About the only thing they can do now is wait and watch and hope that it starts to heal on its own. I said before that one of the lessons that we were probably supposed to learn from all of this was patience and it is really being tested! The Dr's here seem to be very good about making sure that I am aware of everything they are and can be doing, but sometimes you wonder if they are telling you everything and you want them to say exactly what it is and whats going to happen, even though I know they don't have crystal balls.
The High Priest group leaders have come and given him a couple of blessings and have been very good to keep calling to check on how things are going. We appreciate the calls of encouragement and concern, they help to keep me from getting too discouraged. He does have some pain and they are good to control it for him, but it does make him sleep alot. But I think that helps him not only to heal, but to be able to deal with all that is happening. He keeps asking where the back door is though. He doesn't really have a desire to eat and I have to keep nagging him, while being careful that whatever goes down, stays down. He calls me "the food pusher".
I know you are all praying for him and we appreciate your faith and prayers so much. It's about all we can do, and does bring peace and comfort. I hope to be able to post in a few days with better news, I'm trying to just take things "one day at a time", until then thanks for all the love and encouragement. Hope you all have a Happy Thanksgiving with your various families.
Love,
Zed and Lannis
Some of you have called and know pretty much the latest that is going on, but I will try to summarize for the rest of you.
It has been a trying week to say the least, we knew this wouldn't be a walk in the park, but it seems like everything I worried about is happening. Saturday evening Zed's nose started bleeding about 6:30 and we couldn't really get it controlled until about 4 am. I was putting pressure on the bridge while the nurses were putting cold compresses on his forehead and getting platelets in him. He also had blood running down his throat, which caused coughing and vomiting, and made things worse. Once we finally got it stopped, they told him to try not to disturb the clot and so he could hardly breathe. It was a very LONG night. He also gained 2 kilograms of water weight in 12 hrs which is a lot!
Sunday morning he finally said, "I'm getting rid of this clot" which scared me to death. I thought we were going to start all over again, but it actually helped and he could finally breathe normally again. He had a pretty good day Sunday and even managed to lose some of the water weight, with the help of some diuretics. But on Monday morning his weight had gone back up and his liver functions had gone WAY up. They do labs every morning and give us the report so we know where we are. (His blood counts are actually looking pretty good.) Anyway, after discussing this with the team of Dr's, they have decided that he may have a condition called, "Veno-Occlusive Disease". This is something they have been keeping their eye on but when the liver functions went way up they felt that may be why his legs and feet have been swelling, he has had rapid weight gain and swelling in the abdomen. It is a condition that is caused by the high dose chemo and described as a "potenially serious" problem. What happens is that the tiny vessels in the liver become swollen and clogged and therefore the liver is unable to process the blood and clear the toxins out of the body. They called in a couple of liver specialists to consult on the case as well. They can't be 100% certain that is what he has without a biopsy, but don't want to do one as it would be too risky because of his low platelet and clotting problems. They did decide to try an "anti-clotting" medication that may thin out the blood in the liver and allow it to start working properly again. They have also taken away any medications that may be stressful to the liver. About the only thing they can do now is wait and watch and hope that it starts to heal on its own. I said before that one of the lessons that we were probably supposed to learn from all of this was patience and it is really being tested! The Dr's here seem to be very good about making sure that I am aware of everything they are and can be doing, but sometimes you wonder if they are telling you everything and you want them to say exactly what it is and whats going to happen, even though I know they don't have crystal balls.
The High Priest group leaders have come and given him a couple of blessings and have been very good to keep calling to check on how things are going. We appreciate the calls of encouragement and concern, they help to keep me from getting too discouraged. He does have some pain and they are good to control it for him, but it does make him sleep alot. But I think that helps him not only to heal, but to be able to deal with all that is happening. He keeps asking where the back door is though. He doesn't really have a desire to eat and I have to keep nagging him, while being careful that whatever goes down, stays down. He calls me "the food pusher".
I know you are all praying for him and we appreciate your faith and prayers so much. It's about all we can do, and does bring peace and comfort. I hope to be able to post in a few days with better news, I'm trying to just take things "one day at a time", until then thanks for all the love and encouragement. Hope you all have a Happy Thanksgiving with your various families.
Love,
Zed and Lannis
Friday, November 14, 2008
"The Haircut"
I know in the earlier post I said I wasn't going to post any pictures, but then the nurse suggested we go ahead and just get rid of the hair today, so here are a few pictures of the big step. It started to really come out this morning in the shower and has been a nuisance all day, he quite likes being rid of the fuzz and falling hair. I think he looks pretty good.
Day +7 and counting
Well we're still here, Zed has'nt escaped yet, though he has threatened to. Not much new to report except that everything they said about this week was true. He has definitely hit bottom.
His blood counts are in the "basement" and so therefore his side effects are showing up. He has had nausea, not too much vomiting though, diarrhea, VERY sore throat, hair falling out in handfuls, persistent nose bleeds and just feeling very tired and "yucky".
They do tell us that this is all expected and not to worry, so that brings peace of mind, but still hard to watch and thankfully he is able to sleep alot. They put him on a pain pump today so that hopefully he can even out the pain control and not have peaks and valleys. His throat hurts so much that he can hardly eat or drink. In fact it looks like he is trying to swallow a brick by the look on his face. His appetite is practically non-existent so getting him to try to eat or drink is hard to do.
He is starting to feel slightly better, Wednesday was probably his worst day yet, although he didn't have a very good night Thursday either. They are giving him blood again today, and have given him platelets a few times also.
According to what they are telling us, possiby Monday his counts will start to rise again, therefore making him feel much better. So we are slowly getting there, but probably won't leave the hospital until middle or end of next week.
I am not posting any pictures this time, you wouldn't want to see them. (I'm just saying)
*Note to my children-don't freak out by that statement, he's just not looking real great right now, but doing ok!
So as always, thanks for all your prayers and phone calls of concern! We love you and are hoping against hope that we might be home for Thanksgiving.
Love to all,
Zed and Lannis
His blood counts are in the "basement" and so therefore his side effects are showing up. He has had nausea, not too much vomiting though, diarrhea, VERY sore throat, hair falling out in handfuls, persistent nose bleeds and just feeling very tired and "yucky".
They do tell us that this is all expected and not to worry, so that brings peace of mind, but still hard to watch and thankfully he is able to sleep alot. They put him on a pain pump today so that hopefully he can even out the pain control and not have peaks and valleys. His throat hurts so much that he can hardly eat or drink. In fact it looks like he is trying to swallow a brick by the look on his face. His appetite is practically non-existent so getting him to try to eat or drink is hard to do.
He is starting to feel slightly better, Wednesday was probably his worst day yet, although he didn't have a very good night Thursday either. They are giving him blood again today, and have given him platelets a few times also.
According to what they are telling us, possiby Monday his counts will start to rise again, therefore making him feel much better. So we are slowly getting there, but probably won't leave the hospital until middle or end of next week.
I am not posting any pictures this time, you wouldn't want to see them. (I'm just saying)
*Note to my children-don't freak out by that statement, he's just not looking real great right now, but doing ok!
So as always, thanks for all your prayers and phone calls of concern! We love you and are hoping against hope that we might be home for Thanksgiving.
Love to all,
Zed and Lannis
Friday, November 7, 2008
It's Transplant Day!!
The day we have waited for finally arrived! The transplant team said it would be kind of anti-climatic and it sort of was. But we are thankful that everything went along very smoothly and was a little boring, but we like boring! (as opposed to the alternative) They were scheduled to start this morning at 11 am, but because of an earlier transplant in another room that went longer than expected, they got started at 12:55. He was given 6 bags of stem cells and finished at about 2 pm. It was a little like a party in that some of the staff were all coming in to wish him well and see how things were going. They even said we should be singing "Happy Birthday" or some sort of welcome home song to his returning cells.
They hooked him up to oxygen and a heart monitor and checked his vitals before and after every bag to make sure everything was going well. They had warned us that some of the side effects could be, a rise in blood pressure, severe flushing and nausea. He didn't have any of those and they said that was rare. Also a weird side effect of the preservative that the cells are stored in is a "creamed corn" or "garlic" smell in the room. Even that was very minimal.
He slept quite a bit after he was done because of the pre-meds that they gave him, but felt well enough to eat dinner. They told us that within about 45 minutes the stem cells migrate right back to the space in the marrow where they were taken. They don't fully understand how this happens, it's amazing. So now we move forward to day +1, +2, and so on to "engraftment", when the cells start to make new blood cells. He will be in the hospital for another 10-14 days until that happens.
It is a very interesting, well orchestrated process and a little nerve racking when you consider what they are actually doing to your body. This whole process takes you kind of to the brink of death and then they "rescue" you, (that is what they call it.) It has been an exciting day for us and we are thankful all went well. Thanks so much for all of your good wishes and concern. We are so blessed to have so many friends and family praying for us. We love and miss you so much!
Zed and Lannis
They hooked him up to oxygen and a heart monitor and checked his vitals before and after every bag to make sure everything was going well. They had warned us that some of the side effects could be, a rise in blood pressure, severe flushing and nausea. He didn't have any of those and they said that was rare. Also a weird side effect of the preservative that the cells are stored in is a "creamed corn" or "garlic" smell in the room. Even that was very minimal.
He slept quite a bit after he was done because of the pre-meds that they gave him, but felt well enough to eat dinner. They told us that within about 45 minutes the stem cells migrate right back to the space in the marrow where they were taken. They don't fully understand how this happens, it's amazing. So now we move forward to day +1, +2, and so on to "engraftment", when the cells start to make new blood cells. He will be in the hospital for another 10-14 days until that happens.
It is a very interesting, well orchestrated process and a little nerve racking when you consider what they are actually doing to your body. This whole process takes you kind of to the brink of death and then they "rescue" you, (that is what they call it.) It has been an exciting day for us and we are thankful all went well. Thanks so much for all of your good wishes and concern. We are so blessed to have so many friends and family praying for us. We love and miss you so much!
Zed and Lannis
Doing all the cross checks to make sure he is getting correct cells
Closer view of bag number 1
He was able to sleep during most of procedure,bruising on stomach is from shots they have to give him daily in different spots
He was hooked up to heart monitor and oxygen during transplant as a precaution
Cells fresh from freezer
Monday, November 3, 2008
Update of Week One
As of the last update, we thought they were releasing Zed from hospital on Fri (24th). But he had to be "fever free" for 48 hrs before they would release him and he had his last fever fri morning. They also found that he needed a blood transfusion so they kept him in hospital until Mon morning (27th). They arranged for a home health care agency to come to the hotel room to administer his iv antibiotic on Mon evening and show me how to do it for 2 doses on Tue and 1 on Wed morning. When we saw the Dr on Tues morning, he said Zed still looked really good and would admit him on Wed. He told us that the bacteria was a staph of some sort that I can neither pronounce nor remember and that he did'nt want to see him back in his office next week to say "3 times a charm". He was re-admitted Wed afternoon (we asked why they just didn't keep him in and they said the insurance likes to "separate" one admission from the next to keep billing straight. Who understands insurance companies?!?!)
So on Wed they started giving him pre-chemo medications and started Chemo on Thur (29th) @ 8 am--every 6 hrs round the clock for 3 days for 1st medication, 2nd medication started 1 time daily for 2 days on Nov 2nd, and then 3rd medication 1 time daily for 2 days starting Nov 4th. Each medication comes with its own set of side effects and precautions. First one called, Busulfan, can cause severe diarrhea, fever and sore throat. Second one called, Melphalan, can cause terrible mouth and throat sores. So they make him keep ice in his mouth 1/2 hr before, during the treatment, and 1/2 hr after. This medication doesn't stay stable very long so they rush it from pharmacy to him and practically shoot it into him. The iv pump sounded like a milking machine while he was receiving this one. The third medication is called Thiotepa and is excreted through the sweat and can cause skin burns if left on skin, so he will have to shower 2-3 times daily while on this one. Things are going well so far, only had severe nausea one day, other than that, they have been able to control it pretty well. He also had a fever spike
one night (101) which kind of scared all of us. They had to do blood cultures and urine samples etc. per the protocal of the hospital for fevers, but it went down and has not returned and cultures were negative--Whew!
We have both watched more TV and surfed the web more than we have in a year, and I brought some craft projects along to keep me busy too. We are still doing well, hoping that everything continues to go as scheduled. They tell us most of the side effects will actually show up next week and he may think "why did I do this", but we hope that they will be minimal. He still feels real good and has a good appetite and attitude, he is keeping all the nurses laughing especially after naming his iv pole "spot". When it beeps he tells them, "hey Spot is barking." He also likes to draw pictures on the white board in the room of his full urinal.
Thanks for the phone calls, we have nothing but time, so don't worry about "bothering" us. I spend each night here on a recliner (torture chamber ha ha) that folds down, and go back to the hotel for a couple of hours each day to shower, change, do laundry, etc. So that about wraps up the latest from Arizona. Sorry to make you jealous, (everyone but Utahna) but it has been in the 90's every day. We do miss the crisp fall air though, never thought I would admit that. Transplant day is Nov 7th!!
Love you all very much!
Zed and Lannis
So on Wed they started giving him pre-chemo medications and started Chemo on Thur (29th) @ 8 am--every 6 hrs round the clock for 3 days for 1st medication, 2nd medication started 1 time daily for 2 days on Nov 2nd, and then 3rd medication 1 time daily for 2 days starting Nov 4th. Each medication comes with its own set of side effects and precautions. First one called, Busulfan, can cause severe diarrhea, fever and sore throat. Second one called, Melphalan, can cause terrible mouth and throat sores. So they make him keep ice in his mouth 1/2 hr before, during the treatment, and 1/2 hr after. This medication doesn't stay stable very long so they rush it from pharmacy to him and practically shoot it into him. The iv pump sounded like a milking machine while he was receiving this one. The third medication is called Thiotepa and is excreted through the sweat and can cause skin burns if left on skin, so he will have to shower 2-3 times daily while on this one. Things are going well so far, only had severe nausea one day, other than that, they have been able to control it pretty well. He also had a fever spike
one night (101) which kind of scared all of us. They had to do blood cultures and urine samples etc. per the protocal of the hospital for fevers, but it went down and has not returned and cultures were negative--Whew!
We have both watched more TV and surfed the web more than we have in a year, and I brought some craft projects along to keep me busy too. We are still doing well, hoping that everything continues to go as scheduled. They tell us most of the side effects will actually show up next week and he may think "why did I do this", but we hope that they will be minimal. He still feels real good and has a good appetite and attitude, he is keeping all the nurses laughing especially after naming his iv pole "spot". When it beeps he tells them, "hey Spot is barking." He also likes to draw pictures on the white board in the room of his full urinal.
Thanks for the phone calls, we have nothing but time, so don't worry about "bothering" us. I spend each night here on a recliner (torture chamber ha ha) that folds down, and go back to the hotel for a couple of hours each day to shower, change, do laundry, etc. So that about wraps up the latest from Arizona. Sorry to make you jealous, (everyone but Utahna) but it has been in the 90's every day. We do miss the crisp fall air though, never thought I would admit that. Transplant day is Nov 7th!!
Love you all very much!
Zed and Lannis
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