"Just the Facts"-- Infusion center today, 6hours, 1 bag of platelets, still have the mighty rash, and weigh only 140 pounds.
Well, it would seem that I have fallen into a new rhythm for this blog and I don't think I am going to fight it. So you can expect to get an update about every other day or so. Of course if there is something significant, that will call for an exception. My sister says I should note this so that any absence of the blog won't cause any undo worry..I just figure you would realize that I am too tired and went to bed instead! B was at infusion 4 times this week and a big doctor visit as well. The big doctor saw his rash and went to town with a new battery of medicines. This new cocktail make him even further immuno-suppressed, so now we have to be extra, extra careful with just about everything he is exposed to. That is the last thing we want is more drugs, but guess you have to just go with that for now. B's rash is still pretty bad, but I can see improvement where his own skin is starting to show in places rather than the rash. It is still pretty painful to walk, so that has been cut back to just walking in the house to needed areas. It is like they are on fire, and now it has appeared on his hands. The best consolation for dealing with the severity of this rash, is knowing that some GVH is good to have and in the long run helps the grafting process.
While at the doctors, we got the results back from the biopsy, and it revealed that all the blood in B's system is now the donors. So his blood is now fully O neg. Those wonderful donated super cells had and still do have a big job to do. So far they are doing everything they should be doing and that is amazing. Exactly what we had hoped for. The other great news is that his blood numbers continue to work on their own and hit a level of 12 and held (RBC). Again, this is why we did this treatment. It has been a little over a week since B has had any blood infusion and he is at a 12! This to us is really news to celebrate, even if our feet are on fire! So we will continue to plod along trying to eat more to increase pounds rather than lose them and try to continue to walk to build strength and stamina. We thank you all for your continued prayers. It seems that this has been a long process, but truly we have accomplished quite a bit in the last 8 weeks.
Until next time,
Hopeful Believer
Saturday, March 12, 2011
Wednesday, March 9, 2011
Mar 9, Day +40!!! Walking on Ice
"Just the Facts"-- Feeling pretty good, with the exception of this head to toe rash, that is so itchy and burning, unable to walk on feet.
B had a home day today. Most would be bored, but after being in the hospital or going to infusion almost every day since mid January, a full home day feels pretty good. Still low on energy, but that will come. Our main focus is keeping the prescription cream on the affected area of this rash, which is everywhere! The feet right now are taking the most beating. B is unable to walk without feeling intense pain. So when I got home we put ice packs on his feet and wrapped them up. It was pretty funny looking, but did a good job in easing the pain. I am nicknaming him Ice Walker! What else are you going to do? We go to infusion tomorrow and get an update from the big doctor, so that should be interesting. We are hoping the numbers hold.
This week has been a blessed week despite the issues B is dealing with. We have been blessed with food all week. Sweet little angles had dropped by special dishes made with love. This is a help to me as I don't have to cook for myself and the girls, only B. He is on a special diet and cannot eat anything from outside the home. We have that worked out fairly well by now. It's a good thing his taste buds aren't working too good! The funny thing about his diet is he can only eat really well processed foods, which is the exact opposite from his all natural, organic style of eating. He is so skinny, that I give him drumstick ice creams anytime he wants. Guess at least that is one perk. Anyway the meals were a great blessing and a wonderful gift card surprise was too! Bless each of you for your thoughts and prayers towards B and our family. We are humbled by the love and support.
Until next time,
Hopeful Believer.
B had a home day today. Most would be bored, but after being in the hospital or going to infusion almost every day since mid January, a full home day feels pretty good. Still low on energy, but that will come. Our main focus is keeping the prescription cream on the affected area of this rash, which is everywhere! The feet right now are taking the most beating. B is unable to walk without feeling intense pain. So when I got home we put ice packs on his feet and wrapped them up. It was pretty funny looking, but did a good job in easing the pain. I am nicknaming him Ice Walker! What else are you going to do? We go to infusion tomorrow and get an update from the big doctor, so that should be interesting. We are hoping the numbers hold.
This week has been a blessed week despite the issues B is dealing with. We have been blessed with food all week. Sweet little angles had dropped by special dishes made with love. This is a help to me as I don't have to cook for myself and the girls, only B. He is on a special diet and cannot eat anything from outside the home. We have that worked out fairly well by now. It's a good thing his taste buds aren't working too good! The funny thing about his diet is he can only eat really well processed foods, which is the exact opposite from his all natural, organic style of eating. He is so skinny, that I give him drumstick ice creams anytime he wants. Guess at least that is one perk. Anyway the meals were a great blessing and a wonderful gift card surprise was too! Bless each of you for your thoughts and prayers towards B and our family. We are humbled by the love and support.
Until next time,
Hopeful Believer.
Tuesday, March 8, 2011
Mar 8, Day +39, Mash the Rash
"Just the Facts"-- Rash head to toes, urine is much better, feeling OK but for the rash, numbers look good!
Oops I did it again. After a very busy week, weekend and then back to the new work week and getting B taken care of in the evening, I ran out of time to send an update. So here it is. Yesterday, B had to go back to the infusion center for a post hospital check up of sorts. They did draw some blood and took vitals to assess his well being after being released on Saturday from the hospital. He was doing OK, still allowing his bladder to recover, but that area continues to improve. The report was good and he didn't have to stay too long. He is however, covered from head to toes with a skin rash. This rash is attributed to acute GVH. This is a complication from the transplant. If you have to get GVH, Acute is the one you want. It shows up in the first 100 days and usually does not go beyond that. Also to get a little GVH is considered a good thing from all the research I have read. So his immuno-suppressant drugs have been up'd and we slather a thick cream on him morning and night. I use a glove for this as one time I didn't and I thought my hand was going to fall off afterwards! This is the latest challenge for B to deal with and he is doing OK, except his feet itch, hurt and burn all at the same time. It does different things in various areas.
The really big news is that his counts are looking really good. We sorta lost track of the counts last week in the hospital as we were dealing with the blood in the urine crisis. So now we can get back on track. We also lost track a bit of when he was getting blood and platelets and how much. But we do know it has been at least 3 days since he has gotten any blood, maybe more. They set a new threshold for platelets at 30, so if he goes below this he gets a bag. Remember the 7 and 9 and 11 or 13 counts? We bounced around in that area for a while. So the White cell count is at a whopping 8.2! This is really great, that is in normal range. But the best news, is the Red cell count is at 11.4!!!! we have not seen that in all of 2010 or 2011 till now. That is what we did all this for, is to see that number grow. Is that not just so amazing! We are so blessed by this report today, it makes putting up with the itches and issues OK to deal with, but of course we wish they would go away promptly. Now, we will plod along and deal each day with what is presented to us, but knowing the blood issues are improving each moment. And all this is what I consider answered prayer! Thank you. Thank you.
Until next time,
Hopeful Believer.
Oops I did it again. After a very busy week, weekend and then back to the new work week and getting B taken care of in the evening, I ran out of time to send an update. So here it is. Yesterday, B had to go back to the infusion center for a post hospital check up of sorts. They did draw some blood and took vitals to assess his well being after being released on Saturday from the hospital. He was doing OK, still allowing his bladder to recover, but that area continues to improve. The report was good and he didn't have to stay too long. He is however, covered from head to toes with a skin rash. This rash is attributed to acute GVH. This is a complication from the transplant. If you have to get GVH, Acute is the one you want. It shows up in the first 100 days and usually does not go beyond that. Also to get a little GVH is considered a good thing from all the research I have read. So his immuno-suppressant drugs have been up'd and we slather a thick cream on him morning and night. I use a glove for this as one time I didn't and I thought my hand was going to fall off afterwards! This is the latest challenge for B to deal with and he is doing OK, except his feet itch, hurt and burn all at the same time. It does different things in various areas.
The really big news is that his counts are looking really good. We sorta lost track of the counts last week in the hospital as we were dealing with the blood in the urine crisis. So now we can get back on track. We also lost track a bit of when he was getting blood and platelets and how much. But we do know it has been at least 3 days since he has gotten any blood, maybe more. They set a new threshold for platelets at 30, so if he goes below this he gets a bag. Remember the 7 and 9 and 11 or 13 counts? We bounced around in that area for a while. So the White cell count is at a whopping 8.2! This is really great, that is in normal range. But the best news, is the Red cell count is at 11.4!!!! we have not seen that in all of 2010 or 2011 till now. That is what we did all this for, is to see that number grow. Is that not just so amazing! We are so blessed by this report today, it makes putting up with the itches and issues OK to deal with, but of course we wish they would go away promptly. Now, we will plod along and deal each day with what is presented to us, but knowing the blood issues are improving each moment. And all this is what I consider answered prayer! Thank you. Thank you.
Until next time,
Hopeful Believer.
Sunday, March 6, 2011
Mar 7, Day +37, Home Again!
"Just the Facts"-- Fueled up, slept in own bed, no tubes or poles, just a nasty rash, and limited bladder control.
Sorry for the lapse again, yesterday was a banner day! Our youngest daughter played a CIF Championship soccer game with her varsity team and WON! Nice way to go out. This week they go on to State. Then I went straight from the game to pick up B from the hospital and take him home. He was too tired to go for a beach cruise, but that was OK with me. It was great to get him in the house and back into a routine. It is always some work to get him home, as I am up and down the stairs quite a bit, but still that is OK, because we are both home. Now we get back to our infusion center schedule 3 times a week. The rash B has is attributed to acute GVH. This is good as this type of GVH usually does not last past the first 100 days. So we will see. We were able to finally make it to the beach today and then later after a nap over to the big bay to watch some sailing. We were also able to celebrate the 18 year olds birthday with dad! It was a great day.
I am continually being blessed by kindness of family, friends and neighbors. It seems every time I turn around someone says something full of care and concern or a note shows up in the mail, or groceries at my back door or an e-mail message. Each person is unique and special and that is the way they were created, It is such a blessing to see the special gifts each person has for kindness and blessing others. Some are wonderful prayer warriors and this is a powerful gift. All of you special quality people and your special gifts have been an awesome blessing to our family and we so thank you for that.
Until next time,
Hopeful Believer.
Sorry for the lapse again, yesterday was a banner day! Our youngest daughter played a CIF Championship soccer game with her varsity team and WON! Nice way to go out. This week they go on to State. Then I went straight from the game to pick up B from the hospital and take him home. He was too tired to go for a beach cruise, but that was OK with me. It was great to get him in the house and back into a routine. It is always some work to get him home, as I am up and down the stairs quite a bit, but still that is OK, because we are both home. Now we get back to our infusion center schedule 3 times a week. The rash B has is attributed to acute GVH. This is good as this type of GVH usually does not last past the first 100 days. So we will see. We were able to finally make it to the beach today and then later after a nap over to the big bay to watch some sailing. We were also able to celebrate the 18 year olds birthday with dad! It was a great day.
I am continually being blessed by kindness of family, friends and neighbors. It seems every time I turn around someone says something full of care and concern or a note shows up in the mail, or groceries at my back door or an e-mail message. Each person is unique and special and that is the way they were created, It is such a blessing to see the special gifts each person has for kindness and blessing others. Some are wonderful prayer warriors and this is a powerful gift. All of you special quality people and your special gifts have been an awesome blessing to our family and we so thank you for that.
Until next time,
Hopeful Believer.
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