"Just the Facts"--Able to get right up and not have to think about each movement. Eating well, maintaining weight and so far so good with no bad side effects, but feeling a bit weak today.
I said it before, we are waiting and holding our breath a bit to see if B will continue to improve and not get any bad side effects. It looks as thought his GVH rash is gaining some momentum. It has been slow to present but it is definitely lurking. This is curious as the pill that he takes to combat this is not showing up on his lab report. His dose was increased over the past week from 8 pills a day to 14 and still not showing up on the labs. We suggested that the refill was a different brand and we were told that that was not the issue. At the latest Doctors appointment, this subject became a hot topic and now has the big doctors attention. So we are hoping something is corrected on this soon, as we are watching the slow progression of the rash, and B is just coming to the end of the peeling feet, so we would really like to not have to go through that again.
On another lab report they did last week, but just got the results back, it was confirmed that B now has 100% of his donors blood. There isn't any left of his A neg blood cells. That was a great result and one we are rejoicing about. You might have noticed we are at day +77, we have come a long way and have been through a lot, yet we still have a ways to go. B weighed in at 142.5 today and even though this is a great improvement, he needs to get back to 170 to be himself again. He is still very skinny and the muscles all need to be rebuilt. Strength and endurance are going to be next on the training program after we get a bit more weight on. I have to say it has been nice to see some spunk in the guy these last 2 days! I am so thankful to all of you that are following, thinking of us and keeping us in your prayers. It has meant so much.
Until next time,
Hopeful Believer.
Saturday, April 16, 2011
Wednesday, April 13, 2011
Apr 13, Day +74 Well being to being well
"Just the Facts"-- Good good day, got voice back, showing some peach fuzz on the head and overall feeling some energy.
I woke up this morning to a sound I have not heard from sometime. It was the voice of someone I know and love and haven't heard in a while. B got his voice back. It happened overnight without any sign or fanfare and really, he didn't even notice it. I did! It was a very welcome sound and gave me a warm, comforted feeling deep in my heart all day long. Piece by piece we are getting B back. He has gained 10 pounds, from the low of 132 to 142 today. That 10 pounds has done wonders to his over all well being. He can walk more, think more, eat more, and over all participate in life a bit more. Of course we won't stop there, but it is amazing to see this transformation with just 10 pounds. The other piece of good news, one which B has been waiting for with earnest, is the arrival of peach fuzz on his head. B is so happy and excited about this. He doesn't see what other guys see in a shaved head. The fuzz is random and hard to see but with glasses and maybe some backlite it's there.
We got platelets today as the counts still are roaming a bit, but nothing could stop us today. B had energy and was a chatter box all day, and ended up losing his voice again, but that was because he wore his tired old voice box out. It was really good to see a glimpse of the old B coming back. He is on his way to being well. There are many things that all of us are learning through this experience, some are simple and some are very deep and complex. B shared with me that he is learning to "Trust in the Lord" sounds simple, right? But there are many complexities to doing just such a thing and yet, it can be very simple. I am sure he will share more of this with me later. I have found B to be very profound at times, when he shares his thoughts. And there have been a lot of those all floating around in his mind for the last four months. I am excited to see and hear the things he has learned and thought about and for the new life that seems to be budding forth.
Until next time,
Hopeful Believer.
I woke up this morning to a sound I have not heard from sometime. It was the voice of someone I know and love and haven't heard in a while. B got his voice back. It happened overnight without any sign or fanfare and really, he didn't even notice it. I did! It was a very welcome sound and gave me a warm, comforted feeling deep in my heart all day long. Piece by piece we are getting B back. He has gained 10 pounds, from the low of 132 to 142 today. That 10 pounds has done wonders to his over all well being. He can walk more, think more, eat more, and over all participate in life a bit more. Of course we won't stop there, but it is amazing to see this transformation with just 10 pounds. The other piece of good news, one which B has been waiting for with earnest, is the arrival of peach fuzz on his head. B is so happy and excited about this. He doesn't see what other guys see in a shaved head. The fuzz is random and hard to see but with glasses and maybe some backlite it's there.
We got platelets today as the counts still are roaming a bit, but nothing could stop us today. B had energy and was a chatter box all day, and ended up losing his voice again, but that was because he wore his tired old voice box out. It was really good to see a glimpse of the old B coming back. He is on his way to being well. There are many things that all of us are learning through this experience, some are simple and some are very deep and complex. B shared with me that he is learning to "Trust in the Lord" sounds simple, right? But there are many complexities to doing just such a thing and yet, it can be very simple. I am sure he will share more of this with me later. I have found B to be very profound at times, when he shares his thoughts. And there have been a lot of those all floating around in his mind for the last four months. I am excited to see and hear the things he has learned and thought about and for the new life that seems to be budding forth.
Until next time,
Hopeful Believer.
Monday, April 11, 2011
Apr 11, Day +72 The cost of fuel these days
"Just the Facts"-- Nine hour day at infusion, labs, 2 bags of blood, 2 bags of platelets, fungal meds, tired but feeling OK. 139.7 pounds!
B got all filled up today for the week we hope. It took all day to fuel him and I don't want to know what the cost was, whew, I know it is a lot. So far he is feeling pretty good. Still working on some small issues, but all in all he is progressing a little bit every day. The end of last week his meds were adjusted again. This always needs "a wait and see" attitude to watch what his bodies reaction will be. We are noticing some little things here and there, but most are manageable. The ice cream seems to be having it's way and putting on some pounds. Of course there are plenty of baked potatoes, mac and cheese and homemade breakfast sandwiches and piled on meat bagel sandwiches...making you hungry huh? I believe B is getting a bit stronger with every pound, but it is just bit by bit. So we will be patient and accept each measure and anticipate good lab reports. At day +72 we are into the last 30 days of the critical 100 day monitoring cycle. We have come a long way.
When you are ill for a while, it is easy to get discourage. You tend to be physically weak and that plays on your mind and heart, even if you are strong in those areas. Discouragement is a sneaky enemy, as it is like a slow bleed, a gradual erosion. As your circumstance grow difficult and prolonged, discouragement can settle in, layer upon layer, until you want to give up. The Lord tells us to "be strong and of good courage, to not be afraid, for He is with us wherever we go. Joshua 1:9 We believe this is true and have experienced it. We have chosen to live by faith in these Truths. rather than disbelief. If you are discouraged I would encourage you to pick up the Good Book and satisfy your need. It has the answers you are looking for.
Until next time,
Hopeful Believer.
B got all filled up today for the week we hope. It took all day to fuel him and I don't want to know what the cost was, whew, I know it is a lot. So far he is feeling pretty good. Still working on some small issues, but all in all he is progressing a little bit every day. The end of last week his meds were adjusted again. This always needs "a wait and see" attitude to watch what his bodies reaction will be. We are noticing some little things here and there, but most are manageable. The ice cream seems to be having it's way and putting on some pounds. Of course there are plenty of baked potatoes, mac and cheese and homemade breakfast sandwiches and piled on meat bagel sandwiches...making you hungry huh? I believe B is getting a bit stronger with every pound, but it is just bit by bit. So we will be patient and accept each measure and anticipate good lab reports. At day +72 we are into the last 30 days of the critical 100 day monitoring cycle. We have come a long way.
When you are ill for a while, it is easy to get discourage. You tend to be physically weak and that plays on your mind and heart, even if you are strong in those areas. Discouragement is a sneaky enemy, as it is like a slow bleed, a gradual erosion. As your circumstance grow difficult and prolonged, discouragement can settle in, layer upon layer, until you want to give up. The Lord tells us to "be strong and of good courage, to not be afraid, for He is with us wherever we go. Joshua 1:9 We believe this is true and have experienced it. We have chosen to live by faith in these Truths. rather than disbelief. If you are discouraged I would encourage you to pick up the Good Book and satisfy your need. It has the answers you are looking for.
Until next time,
Hopeful Believer.
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