October 30, 2012
Having shared our excitement about a break from the hospital, I have to add something. As much as we love our friends, we have to request NO VISITORS. It's dangerous, and we want him to get well and avoid the trauma that an illness under these conditions would bring. THANK YOU!
Tuesday, October 30, 2012
October 30, 2012
New doctor, actually a senior doctor from the group of hematologists/oncologists who are responsible for Brian's care, Dr. Lemmons, came in today with Fellow - Dr.Maese and said Brian can go home for a few days because the counts are coming up...so we will head down tomorrow. He's still very much without immunity, so will have serious restrictions as far as visitors- like at the hospital- but at least he will get a break before the next round of chemo. He will be at home, except he could take his truck for a spin...:), which I know he would like the freedom to do. We will have home health checking on him. I will be the protective paranoid mama, (and rightly so). We have to return to SLC on the 8th, then he'll be re-admitted on the 12th for a proceedure to put in a new central line and probably start the chemo right after that, depending on the counts. So I am excited as well to be home and see the family too. Sure glad the weather is good for this.
New doctor, actually a senior doctor from the group of hematologists/oncologists who are responsible for Brian's care, Dr. Lemmons, came in today with Fellow - Dr.Maese and said Brian can go home for a few days because the counts are coming up...so we will head down tomorrow. He's still very much without immunity, so will have serious restrictions as far as visitors- like at the hospital- but at least he will get a break before the next round of chemo. He will be at home, except he could take his truck for a spin...:), which I know he would like the freedom to do. We will have home health checking on him. I will be the protective paranoid mama, (and rightly so). We have to return to SLC on the 8th, then he'll be re-admitted on the 12th for a proceedure to put in a new central line and probably start the chemo right after that, depending on the counts. So I am excited as well to be home and see the family too. Sure glad the weather is good for this.
Monday, October 29, 2012
Saturday, October 27, 2012
October 27, 2012
Today was another beautiful autumn day in Salt Lake. Brian has had some close friends and family drop by and some good times the last couple days. I think he is a bit tired after it all as he is now having a early evening nap. He has been feeling well and in good spirits, gaining a little weight back, even getting workouts in his room with physical therapy. They work him pretty well. Still waiting for the counts to come up, but that's OK. We can deal with this. Kind of funny...from his room we can see the lights and giant video screen tonight at Rice-Eccles Stadium (University of Utah), where the "U" is playing California It was just a year ago, in a couple weeks, that we came up here to watch Brian and the HHS Tigers play Spanish Fork in the state football championship semi-finals, and again the next game for the championship. That stadium holds a lot of big memories for our family, starting back in 2005. I think about those times every time I drive by... special memories.
Today was another beautiful autumn day in Salt Lake. Brian has had some close friends and family drop by and some good times the last couple days. I think he is a bit tired after it all as he is now having a early evening nap. He has been feeling well and in good spirits, gaining a little weight back, even getting workouts in his room with physical therapy. They work him pretty well. Still waiting for the counts to come up, but that's OK. We can deal with this. Kind of funny...from his room we can see the lights and giant video screen tonight at Rice-Eccles Stadium (University of Utah), where the "U" is playing California It was just a year ago, in a couple weeks, that we came up here to watch Brian and the HHS Tigers play Spanish Fork in the state football championship semi-finals, and again the next game for the championship. That stadium holds a lot of big memories for our family, starting back in 2005. I think about those times every time I drive by... special memories.
Thursday, October 25, 2012
October 25,2012
Brian continues to be blessed with good health while waiting for his counts to come up. He is in excellent spirits and making friends with all the great nurses, techs and doctors. The food here is pretty good actually and Brian is gaining some of the weight back that he lost on chemo. Today he weighed 195lbs., and he ate a lot! Just to maintain they said he needs about 3,000 calories. We want to get him back up before the next round of chemo.
I have met a few of moms here and visit with them from time to time. All so far have or have had worse situations than we have, which is even more humbling.
I have met a few of moms here and visit with them from time to time. All so far have or have had worse situations than we have, which is even more humbling.
Tuesday, October 23, 2012
October 23, 2012
Today was another good day for Brian. In fact, so was yesterday. Brian is feeling well, eating well -everything is presently good. We hope and pray this will continue, and that he will be able to stay healthy! This is a good place to be, and they're taking good care of Brian.
I heard that the Dance Concert last night at HHS was fabulous! I wish we could have seen it! Thank you to Jennifer Turnbow and all the wonderful people who did that for Brian, and for all those who came to support this. The fundraiser at Lin's Market was another huge undertaking, so many worked hard and supported it as well. We continue to be the recipients of support and love from friends and people we don't even know, and it's just amazing and humbling. Thank you so much to each one of you. You not only help take some of the load off, but you are lifting us also!
Today was another good day for Brian. In fact, so was yesterday. Brian is feeling well, eating well -everything is presently good. We hope and pray this will continue, and that he will be able to stay healthy! This is a good place to be, and they're taking good care of Brian.
I heard that the Dance Concert last night at HHS was fabulous! I wish we could have seen it! Thank you to Jennifer Turnbow and all the wonderful people who did that for Brian, and for all those who came to support this. The fundraiser at Lin's Market was another huge undertaking, so many worked hard and supported it as well. We continue to be the recipients of support and love from friends and people we don't even know, and it's just amazing and humbling. Thank you so much to each one of you. You not only help take some of the load off, but you are lifting us also!
Sunday, October 21, 2012
October 21, 2012
Tonight I am thankful for all of the blessings we have received on this journey. Brian had another good day, and now has his hair buzzed off and is adjusting well to the change. He was shedding so bad, it was messy and itchy and it had to go. He had a good time with his buddy Mike taking it off bit by bit, from one wild style to another till finally just cutting it all off! I'll have to post a photo or two... Tonight he also got to get out and stroll the empty hallways (with a mask on) and get some exercise going up the stairs for the second time. It's like escaping, and fun to do! :) I believe in the power of prayer and am thankful for Heavenly Father's constant love and blessings in our lives.
Tonight I am thankful for all of the blessings we have received on this journey. Brian had another good day, and now has his hair buzzed off and is adjusting well to the change. He was shedding so bad, it was messy and itchy and it had to go. He had a good time with his buddy Mike taking it off bit by bit, from one wild style to another till finally just cutting it all off! I'll have to post a photo or two... Tonight he also got to get out and stroll the empty hallways (with a mask on) and get some exercise going up the stairs for the second time. It's like escaping, and fun to do! :) I believe in the power of prayer and am thankful for Heavenly Father's constant love and blessings in our lives.
Saturday, October 20, 2012
Friday, October 19, 2012
October 19, 2012
So, here we are. Progressing nicely and hoping it continues to go smoothly. Today Brian is adjusting to the fact that he is losing his hair. Not that he's a "high maintenance" kind of a guy. ha ha. But I suppose he is worried about how he will look. We're trying to assure him it's not a big deal, but I suppose it's easier when you aren't the one losing your hair! I am even wondering if it's psychologically like when you lose something more permanently, even though for him it won't be. I reminded him of our friends Shay and Lane, and how they pulled through it. He's got a couple beanies already and his ball cap from home. He'll be fine. It's just a hard reality check. You can't tell he's lost any yet, it's just shedding a lot. He wants to just cut it off and keep from getting hair all over his pillow! I reminded him of all the people who are pulling for him... and now he's napping. Probably needs that nap.
So, here we are. Progressing nicely and hoping it continues to go smoothly. Today Brian is adjusting to the fact that he is losing his hair. Not that he's a "high maintenance" kind of a guy. ha ha. But I suppose he is worried about how he will look. We're trying to assure him it's not a big deal, but I suppose it's easier when you aren't the one losing your hair! I am even wondering if it's psychologically like when you lose something more permanently, even though for him it won't be. I reminded him of our friends Shay and Lane, and how they pulled through it. He's got a couple beanies already and his ball cap from home. He'll be fine. It's just a hard reality check. You can't tell he's lost any yet, it's just shedding a lot. He wants to just cut it off and keep from getting hair all over his pillow! I reminded him of all the people who are pulling for him... and now he's napping. Probably needs that nap.
Thursday, October 18, 2012
October 18, 2012
Today Brian had a great day. Like not even being sick. It was a pretty day up here, and the cool night brought out brilliant fall colors in many trees in Salt Lake. What a pretty day.
We have decided to try and limit visitors to see Brian, because basically one of the biggest threats to his life at this time is that somehow he contracts some illness- a flu, a cold bug, a virus or some other illness. Getting something at this time with such limited immunity could be devastating. We would prefer visits only by immediate family, so if people would like to do something for Brian, do him a favor and send a note, facebook, phone call, text, Facetime or Skype. It is difficult to say "don't come", but this is a way you can help him. I've heard too many stories up here of what happens and we want to protect him from a frightening detour to the ICU. Thanks for understanding and supporting us in this effort. I hope that the word gets around. We appreciate greatly all the love and support of everyone. You all have been so great!
Today Brian had a great day. Like not even being sick. It was a pretty day up here, and the cool night brought out brilliant fall colors in many trees in Salt Lake. What a pretty day.
We have decided to try and limit visitors to see Brian, because basically one of the biggest threats to his life at this time is that somehow he contracts some illness- a flu, a cold bug, a virus or some other illness. Getting something at this time with such limited immunity could be devastating. We would prefer visits only by immediate family, so if people would like to do something for Brian, do him a favor and send a note, facebook, phone call, text, Facetime or Skype. It is difficult to say "don't come", but this is a way you can help him. I've heard too many stories up here of what happens and we want to protect him from a frightening detour to the ICU. Thanks for understanding and supporting us in this effort. I hope that the word gets around. We appreciate greatly all the love and support of everyone. You all have been so great!
Wednesday, October 17, 2012
October 17, 2012
Yesterday was a pretty good day. Visited with friends and seemed happy as can be. Back bothered him from yesterday's LP(spinal) but not till afternoon. Slept well with meds... feeling OK and sleeping more this morning. So far so good. One more day and the white blood cell count should start coming back up. It takes 3 days after chemo for the chemo to clear out of the body and then the blood cell counts start to come back up. Yesterday's excellent news was that the results from the 3rd LP came and the spinal fluid is clear for the 2 nd time and there are no leukemia cells there any more. :)
Yesterday was a pretty good day. Visited with friends and seemed happy as can be. Back bothered him from yesterday's LP(spinal) but not till afternoon. Slept well with meds... feeling OK and sleeping more this morning. So far so good. One more day and the white blood cell count should start coming back up. It takes 3 days after chemo for the chemo to clear out of the body and then the blood cell counts start to come back up. Yesterday's excellent news was that the results from the 3rd LP came and the spinal fluid is clear for the 2 nd time and there are no leukemia cells there any more. :)
Monday, October 15, 2012
October 15, 2012
Today was overall a good day for Brian. He's feeling better and he's finished with the 1st round of chemo. Now the wait for the cell counts to come up. When the white blood cells reach 500, he will be able to go home. Then he will get to wait until they get to 1000, and back to the hospital for another round. He'll be homebound because of the low immune system, but I am sure he'll be glad to get a break! Tonight, he has played video games, ate a good dinner topped off with a milkshake (yeah, they are after him to gain weight back), talking with friends over the computer and playing guitar. They're pumping him full of water (of some kind) but that doesn't bother him. It's so nice when he feels good. :)
Today was overall a good day for Brian. He's feeling better and he's finished with the 1st round of chemo. Now the wait for the cell counts to come up. When the white blood cells reach 500, he will be able to go home. Then he will get to wait until they get to 1000, and back to the hospital for another round. He'll be homebound because of the low immune system, but I am sure he'll be glad to get a break! Tonight, he has played video games, ate a good dinner topped off with a milkshake (yeah, they are after him to gain weight back), talking with friends over the computer and playing guitar. They're pumping him full of water (of some kind) but that doesn't bother him. It's so nice when he feels good. :)
Sunday, October 14, 2012
October 14, 2012
Brian slept well last night and no fever this morning. One mouth sore - . But he ate really well this morning: eggs, sausage, hash browns, bisquit & gravy, orange juice and milk. He needs 3,000 calories per day to maintain. Didn't get that yesterday. We are trying to keep him eating and drinking lots, plus always keeping his mouth clean. One of the side effects of chemo are these mouth sores which can turn into problems so serious they end up in the intensive care. So one more chemo tonight and in the morning tomorrow and the first round will be done. Takes 3 days to rid the body of the chemo and then the cell counts can come back up. So, we are learning every day here. A couple more weeks and should get his first break from the hospital.
We went to the chapel in the hospital this morning for sacrament meeting and there was a wonderful spirit there. This is a branch is from a married student stake from the University of Utah. 35 couples serve in the hospital. Then, two brethren came by just now and brought him the sacrament. That was nice. Brian of course, cannot attend the meeting because of his depleated immune system.
We also learned today that the blood products they use here come from a company in the SL Valley called ARUP. Brian has B- blood. Blood platelets have been in short supply from negative blood, and they used the positive ones with another drug like the shot they give mothers with the RH factor, so they don't have problems. But those platelets didn't stay with him very well. The ones that match better stay with him longer. Interesting. So, the platelets only last 3 days after donation, so it looks like some in the family may be giving platelets and blood on their trips up, to help the supply even though there isn't a guarantee that he will get their's but it will help the supply. He's getting blood right now and smiling and visiting with friends about the whole thing. Of course, anyone can give blood or platelets. If it wasn't for donors, he would not live through the leukemia. Humbling.
Brian slept well last night and no fever this morning. One mouth sore - . But he ate really well this morning: eggs, sausage, hash browns, bisquit & gravy, orange juice and milk. He needs 3,000 calories per day to maintain. Didn't get that yesterday. We are trying to keep him eating and drinking lots, plus always keeping his mouth clean. One of the side effects of chemo are these mouth sores which can turn into problems so serious they end up in the intensive care. So one more chemo tonight and in the morning tomorrow and the first round will be done. Takes 3 days to rid the body of the chemo and then the cell counts can come back up. So, we are learning every day here. A couple more weeks and should get his first break from the hospital.
We went to the chapel in the hospital this morning for sacrament meeting and there was a wonderful spirit there. This is a branch is from a married student stake from the University of Utah. 35 couples serve in the hospital. Then, two brethren came by just now and brought him the sacrament. That was nice. Brian of course, cannot attend the meeting because of his depleated immune system.
We also learned today that the blood products they use here come from a company in the SL Valley called ARUP. Brian has B- blood. Blood platelets have been in short supply from negative blood, and they used the positive ones with another drug like the shot they give mothers with the RH factor, so they don't have problems. But those platelets didn't stay with him very well. The ones that match better stay with him longer. Interesting. So, the platelets only last 3 days after donation, so it looks like some in the family may be giving platelets and blood on their trips up, to help the supply even though there isn't a guarantee that he will get their's but it will help the supply. He's getting blood right now and smiling and visiting with friends about the whole thing. Of course, anyone can give blood or platelets. If it wasn't for donors, he would not live through the leukemia. Humbling.
Saturday, October 13, 2012
October 13, 2012
Just thought I'd tell you that can watch Brian on KSL tonight at 6:30 and 10:35. The Sports guys did a really nice story. Also, today was the 9th day of chemo, then tomorrow and off of it for a while. He's still doing well, and we found out on Friday night that he has the best kind of AML, that most...likely will not require a bone marrow transplant. He has responded well to chemo, but at the end of the 10 days of treatments, he seems more tired. Actually had me a bit worried earlier, but he came out of it. We just are praying for no complications; they're all too common and troublesome. Thanks to all the people who have done anything for us. We love you and you strengthen us!
Friday, October 12, 2012
October 12, 2012
Today was a bit of a recovery day. We had a big day yesterday, especially the latter half. We got good news at around 6pm, when Dr.Sato came in with a big smile on her face to announce to us that the test results came back from the bone marrow biopsy. The specific type of AML that Brian has is the best one to get - not usually requiring a bone marrow transplant. It can be treated with chemo. So we were glad to hear that. Then, with our new orange HHS Tiger t-shirts, we tuned into the game at home on a laptop. We had friends bring in Panda Express, and Brian ate pretty well. We got to see (but not hear it all) when they gave the banner and the helmets to Randy for Brian. Wow. Very awesome. Then we watched the game. A headache took over for Brian about half way through, but he managed to watch clear to the finish. It was an incredible game, and we know the boys gave it all they had. I thought it was interesting when he said that the team will do well if they don't fight. So, I hope they stay united, and work together to get better every day. We are taking it here one day at a time. There was a segment on Brian today on KSL Sports on TV. It was really nice. It will be on tomorrow again at 6:30pm and 10:35pm, if there aren't any changes. Thank you Rod Zundel.
Today was a bit of a recovery day. We had a big day yesterday, especially the latter half. We got good news at around 6pm, when Dr.Sato came in with a big smile on her face to announce to us that the test results came back from the bone marrow biopsy. The specific type of AML that Brian has is the best one to get - not usually requiring a bone marrow transplant. It can be treated with chemo. So we were glad to hear that. Then, with our new orange HHS Tiger t-shirts, we tuned into the game at home on a laptop. We had friends bring in Panda Express, and Brian ate pretty well. We got to see (but not hear it all) when they gave the banner and the helmets to Randy for Brian. Wow. Very awesome. Then we watched the game. A headache took over for Brian about half way through, but he managed to watch clear to the finish. It was an incredible game, and we know the boys gave it all they had. I thought it was interesting when he said that the team will do well if they don't fight. So, I hope they stay united, and work together to get better every day. We are taking it here one day at a time. There was a segment on Brian today on KSL Sports on TV. It was really nice. It will be on tomorrow again at 6:30pm and 10:35pm, if there aren't any changes. Thank you Rod Zundel.
Thursday, October 11, 2012
Oct. 11, 2012 10:30a.m.
Brian had a pretty good night. Upset stomach this morning but restling well now. No fever for 48 hours. Another spinal today, then the afternoon should be nice. We'll put on our orange shirts and try to get the game online tonight! We loved the orange shirts, they turned out so neat. Nurse liked them too. Thanks everybody. You're the best friends ever.
Brian had a pretty good night. Upset stomach this morning but restling well now. No fever for 48 hours. Another spinal today, then the afternoon should be nice. We'll put on our orange shirts and try to get the game online tonight! We loved the orange shirts, they turned out so neat. Nurse liked them too. Thanks everybody. You're the best friends ever.
Wednesday, October 10, 2012
October 10, 2012 7:31p.m.
O.K. This is Brian's mom here. It's high time I started checking in with reports on Brian. His sister, Charlotte, created this blog for us so we could communicate with the many who are concerned and want to know how Brian is doing.
So, hi everyone. Thank you for all your prayers, fasting, and love you have sent our way. It is totally amazing and overwhelming to try to fathom what is happening to Brian and what is taking place at home in So. Utah and Hurricane in behalf of Brian and our family. We feel so loved and it is such a wonderful thing. The entire last week has been somewhat surreal. I wanted to pinch myself and wake up.
Tuesday, Oct. 2, Dr. Carter called us in to tell us he had consulted with specialists in St. George, and Brian had Leukemia. We needed to get him to Salt Lake as soon as possible, although we could drive him up. We called his Dad (Randy) from work and managed to check in to the Huntsman Cancer Center by 7:30p.m. They wasted no time in beginning testing and treatment. The next day they recommended he be transferred to Primary Children's Medical Center because it would be better for him here. They're doing a clinical study here with a 4th chemo drug which has been shown to have even better results than the regular 3 drugs. We got lucky when the computer chose Brian to be one of the patients who would recieve the drug, as opposed to one in the control group. I think that was really an answer to so many prayers. So here we are.
Since that night, he has had platelets and blood transfusions many times. It gives a whole new meaning to Red Cross blood drives. I look at them hanging on the IV tree and think if it wasn't for those donations, he would be gone.
Today he is on the 6th (of 10) night of chemo. They do it at night, the idea being that people will sleep through some of the discomfort. The first couple nights were tough, with fevers, nausea, headache and pain from various things. Brian has stayed calm and patient through it all. If I hear a little groan, I know he's hurting. The good news is that since he has been recieving chemo, things are much better because the Leukemia cells are much less. His body also has no white cells for defense.
Perhaps you are thinking you didn't want to know all of this...so sorry about that. I'm going to make this a journal of sorts as well. I don't plan on putting out anything that is too personal.
So tonight he is doing well, I am happy to report. If you looked at him, tonight, you wouldn't know he was sick. He's had some platelets and a couple units of blood and he's texting friends and playing video games. He's had visitors today and honestly, the nurses are young and cute tonight. He just rolls with it all, keeping to his activities. I hope tonight is a good night. It should be. Now that the doctors and nurses have fine-tuned the medicines & chemo he has been sleeping well and much more comfortably. So I have less worry, and I just pray there won't be any unexpected problems arise, and that we can continue to stay the course.
There will be 4 courses of treatment consisting of 10 days of chemo, followed by 2 to 3 weeks of cell count recovery. That's when you wait for the numbers to come up in the blood tests. When they reach a certain level, he will be able to go home for a day or two, to maybe 3 weeks, when the white cell count gets high again. Then it's back in the hospital for roughly another month to repeat the same process. Over all, there will be 4 courses, with an estimated 6 months duration, if everything goes well, This is the plan. Time will tell. We pray that everything will go well.
O.K. This is Brian's mom here. It's high time I started checking in with reports on Brian. His sister, Charlotte, created this blog for us so we could communicate with the many who are concerned and want to know how Brian is doing.
So, hi everyone. Thank you for all your prayers, fasting, and love you have sent our way. It is totally amazing and overwhelming to try to fathom what is happening to Brian and what is taking place at home in So. Utah and Hurricane in behalf of Brian and our family. We feel so loved and it is such a wonderful thing. The entire last week has been somewhat surreal. I wanted to pinch myself and wake up.
Tuesday, Oct. 2, Dr. Carter called us in to tell us he had consulted with specialists in St. George, and Brian had Leukemia. We needed to get him to Salt Lake as soon as possible, although we could drive him up. We called his Dad (Randy) from work and managed to check in to the Huntsman Cancer Center by 7:30p.m. They wasted no time in beginning testing and treatment. The next day they recommended he be transferred to Primary Children's Medical Center because it would be better for him here. They're doing a clinical study here with a 4th chemo drug which has been shown to have even better results than the regular 3 drugs. We got lucky when the computer chose Brian to be one of the patients who would recieve the drug, as opposed to one in the control group. I think that was really an answer to so many prayers. So here we are.
Since that night, he has had platelets and blood transfusions many times. It gives a whole new meaning to Red Cross blood drives. I look at them hanging on the IV tree and think if it wasn't for those donations, he would be gone.
Today he is on the 6th (of 10) night of chemo. They do it at night, the idea being that people will sleep through some of the discomfort. The first couple nights were tough, with fevers, nausea, headache and pain from various things. Brian has stayed calm and patient through it all. If I hear a little groan, I know he's hurting. The good news is that since he has been recieving chemo, things are much better because the Leukemia cells are much less. His body also has no white cells for defense.
Perhaps you are thinking you didn't want to know all of this...so sorry about that. I'm going to make this a journal of sorts as well. I don't plan on putting out anything that is too personal.
So tonight he is doing well, I am happy to report. If you looked at him, tonight, you wouldn't know he was sick. He's had some platelets and a couple units of blood and he's texting friends and playing video games. He's had visitors today and honestly, the nurses are young and cute tonight. He just rolls with it all, keeping to his activities. I hope tonight is a good night. It should be. Now that the doctors and nurses have fine-tuned the medicines & chemo he has been sleeping well and much more comfortably. So I have less worry, and I just pray there won't be any unexpected problems arise, and that we can continue to stay the course.
There will be 4 courses of treatment consisting of 10 days of chemo, followed by 2 to 3 weeks of cell count recovery. That's when you wait for the numbers to come up in the blood tests. When they reach a certain level, he will be able to go home for a day or two, to maybe 3 weeks, when the white cell count gets high again. Then it's back in the hospital for roughly another month to repeat the same process. Over all, there will be 4 courses, with an estimated 6 months duration, if everything goes well, This is the plan. Time will tell. We pray that everything will go well.
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