"Just the Facts"-- Slept well, eating well, feeling good, getting some walking in between rains, so good to be home.
There is lots to do still to help B get settled at home. But we are working through it. Even though we have scrubbed everything clean, you can't believe where you put your hands throughout the day. I need to keep the anti-bac wipes in my pockets to whip out at any moment. B says it is so good not to have hospital food. That is really saying a lot, as I haven't really cooked yet. He has been having frozen meals with the exception of cooked eggs this morning. His taste buds are a bit finicky which is common with post chemo patients. The fact that he is eating at all is amazing. Most patients loose their appetite altogether. He is down to 151 lbs, and very cold, but that is because he has no fat on him, but I plan to change that. The lounge is working out great and he feels like he has lots of room to move around and still be isolated from the rest of the house. He got to see his folks today, just from a distants as his dad is sick, but it was good to see them just the same.
I don't have any counts for you today, as hey, no blood draws today. That process begins tomorrow and every other day thereafter. We will go to the infusion center at 8am and he will be tested and they will determine what he needs based on his levels. He could be there 1 hour or 6 hours only the blood test will reveal this. Of course, we are hoping for raised levels in all areas. This first week is critical for the doctors to assess if home care is working out according to plan. Our planning was put to the test today, as the first full day home and we had to call in the back up home care. My Mom joined the BMT home care team before she went through orientation, as I had to take our youngest to urgent care for a back injury from her soccer game yesterday. It turned out to be a sprained muscle,which except for some aching isn't that serious. I am so thankful as I am not ready to be back at a hospital any time soon. Mom did a good job too! So I expect a few hiccups in the beginning, but then things should smooth out and get into a groove. The Lord wants us to lean on Him when troubles come, that way He can be our strength. Well I can attest to His faithfulness in this area. He has been my strength for some time now, and I am so thankful to Him for that and to all who have kept B and our family before Him. Also a special thanks to all the FB friends and their sweet comments.
Until next time,
Hopeful Believer.
Saturday, February 19, 2011
Friday, February 18, 2011
Feb 18, Day +22, Home Sweet Home!
All the excitement of the thought of going home had B a bit tired. A slight fever in the morning caused some anxiety, but it came back to normal. An orientation about going home and home care, a plethora of prescription drugs, 2 bags of platelets, and a training session for me to learn to flush the catheter and viola!
We are off. By the time we got out the double doors we were bushed. But not too much for a quick cruise to the beach and no nausea, yea! We got to the car just before the rain came down. We were going to try to catch a bit of the soccer game, or even a quick hi to our youngest, but the prudent decision to get home was made. B was overwhelmed at being home, it meant so much to be free, and then to come home to heal was over the top. He took a quick nap, had a snack and then got comfy in his "lounge"!
So I think the last count for White blood cells I reported was maybe at 4, well this morning it went to 6.2. Well that is so great, but the platelets are still a bit low, 13, hence to 2 bags to go. They have been watching these counts so they could see how well B was progressing, but the real measure for us was revealed today when B got a report on his Red blood cells. Since February 2010 the highest B's Red Blood Count has been is a 9. He hasn't had any blood infusion for 3 days and his RBC went from 9.2 to 9.7 to 10.2. Wow, that was the most fabulous news of all, see that means that the new bone marrow is working and making Red Blood Cells. We were beside ourselves happy! Even though today was a very busy, tiring day, reflecting back it was a miraculous day as well. One,will we never forget and one, we will always be thankful for. Now we look toward beginning phase 2. Healing at home and all that goes with that. Thank you and bless you.
Until next time,
Hopeful Believer.
Feb 17, Day +21, Get out of Jail/Hospital card
"Just the Facts"-- Counts up up and away! Drip pole was stripped, no more leash/tubes, a little tired but freedom is so close. Slight fever.
We started the morning with news that the White cell counts went from 1.8 to 2.2. So that was good news as they are continuing to climb. Then B's drip pole got stripped, and the last tube connected to B's catheter was detached. So the rest of the day he was walking the ward without his pole or tubes. He said it felt odd and he got so many double takes from the nursing staff. He was a bit tired today, perhaps all the excitement about going home, as the BMT post hospital coordinated called to set up going home orientation. First we have to set up the pharmacy orders and that is saying a lot. So by the end of the day, after I left the hospital B called to report the latest count. He is at a 4!!!!! Remember I said the normal range is a low average of 4.3 to 10.8. So this was of course great news, as I will go get my guy tomorrow!
So the day tomorrow is filled to the brim with activity. By the time we get home we will both be bushed.
B of course will want to take a nap in his own bed. But before we get home and nice drive by the beach to smell the ocean air and see the water is just what he doctor ordered, (not really) but it is what we are doing!
B is excited to see his youngest daughter as he hasn't seen for for almost 4 weeks. It will be a precious reunion. We will start a whole new phase of treatment now, keeping him healthy at home, getting down 40+ pills a day and watching for GVH. The GVH window is the 100 day mark, so we have a ways to go. In the meantime, we will work hard to keep a sterile house, be careful of his special diet and keep all illness and potentials issue away. B won't be able to be in any crowds, and when he is around people he will have to wear a mask. Also he will be going to the Moores Cancer Center 3 times a week for test and infusions and whatever. This will continue for at least the 100 days. He will continue to be weak and strength will come slowly. But first we need to get some meat on his bones, as he weighed 153 today. He has lost 26 lbs since entering the hospital. We will have to fix that right away. It sounds like a lot of work and of course it is and will be, but we cannot express just how overjoyed we are to have B home. This is answered prayer to the max. Bless you all.
Until next time,
Hopeful Believer
We started the morning with news that the White cell counts went from 1.8 to 2.2. So that was good news as they are continuing to climb. Then B's drip pole got stripped, and the last tube connected to B's catheter was detached. So the rest of the day he was walking the ward without his pole or tubes. He said it felt odd and he got so many double takes from the nursing staff. He was a bit tired today, perhaps all the excitement about going home, as the BMT post hospital coordinated called to set up going home orientation. First we have to set up the pharmacy orders and that is saying a lot. So by the end of the day, after I left the hospital B called to report the latest count. He is at a 4!!!!! Remember I said the normal range is a low average of 4.3 to 10.8. So this was of course great news, as I will go get my guy tomorrow!
So the day tomorrow is filled to the brim with activity. By the time we get home we will both be bushed.
B of course will want to take a nap in his own bed. But before we get home and nice drive by the beach to smell the ocean air and see the water is just what he doctor ordered, (not really) but it is what we are doing!
B is excited to see his youngest daughter as he hasn't seen for for almost 4 weeks. It will be a precious reunion. We will start a whole new phase of treatment now, keeping him healthy at home, getting down 40+ pills a day and watching for GVH. The GVH window is the 100 day mark, so we have a ways to go. In the meantime, we will work hard to keep a sterile house, be careful of his special diet and keep all illness and potentials issue away. B won't be able to be in any crowds, and when he is around people he will have to wear a mask. Also he will be going to the Moores Cancer Center 3 times a week for test and infusions and whatever. This will continue for at least the 100 days. He will continue to be weak and strength will come slowly. But first we need to get some meat on his bones, as he weighed 153 today. He has lost 26 lbs since entering the hospital. We will have to fix that right away. It sounds like a lot of work and of course it is and will be, but we cannot express just how overjoyed we are to have B home. This is answered prayer to the max. Bless you all.
Until next time,
Hopeful Believer
Wednesday, February 16, 2011
Feb 16, Day +20 Home is so close!
"Just the Facts"-- Feeling stronger, no pain, lots of walking, drinking lots of water, and numbers flew!
Wow, what a difference a day will make. B did really well drinking water yesterday and walking the ward. The BMT team was impressed. Last night when I left his White Blood cell count was at point 7, so this morning it measured out at 1.8! It grew twice as much. This was great news all around. The entire staff kept congratulating him. Then one of the PA's(Physician's Assistants) said walking will make them grow and B said why didn't you tell me that. So today he had done 50 laps. 26 laps is a mile, so I guess you could say he is bit motivated. He can almost taste home. They have switched all his medicines over to pill form in the last 2 days and now he only has one bag on the drip pole with on one tube going to his catheter. He is almost unleashed! We are trying to be patient and not get our hopes up, but I have to admit our hopes are up!
Although we are about to be released any day, they are cautioning B that he is not out of the "Woods" yet. He still is highly susceptible to infections, illness and there is still the looming GVH. Also his blood still need to produce at full levels and that won't happen for a while yet, so he will have to go very slow and pace himself. They will watch closely (every other day) for the first 100 days post hospital. The reality of what B has been through is never very far away, as the ward is full of BMT patients and some are not faring as well. B heard just today that one man died this week. They don't really see each other too much as they are restricted to their rooms and cannot come out due to potential compromise of their immunity systems, but we have seen some. B was given a special pass by his Big Doctor to be walking outside his room. That has been a life saver for him. Before this process started B always said he wanted to go to Hawaii afterwards. That dream has long since been replaced with just the dream of going home and getting comfortable. I started this blog looking at my 2011 calendar and reflecting on what the page said. Well I have been so busy, I just looked at what February said, Faith, Family, Friends, and truly that is what has carried us to this point today. Thank you.
Until next time,
Hopeful Believer
Wow, what a difference a day will make. B did really well drinking water yesterday and walking the ward. The BMT team was impressed. Last night when I left his White Blood cell count was at point 7, so this morning it measured out at 1.8! It grew twice as much. This was great news all around. The entire staff kept congratulating him. Then one of the PA's(Physician's Assistants) said walking will make them grow and B said why didn't you tell me that. So today he had done 50 laps. 26 laps is a mile, so I guess you could say he is bit motivated. He can almost taste home. They have switched all his medicines over to pill form in the last 2 days and now he only has one bag on the drip pole with on one tube going to his catheter. He is almost unleashed! We are trying to be patient and not get our hopes up, but I have to admit our hopes are up!
Although we are about to be released any day, they are cautioning B that he is not out of the "Woods" yet. He still is highly susceptible to infections, illness and there is still the looming GVH. Also his blood still need to produce at full levels and that won't happen for a while yet, so he will have to go very slow and pace himself. They will watch closely (every other day) for the first 100 days post hospital. The reality of what B has been through is never very far away, as the ward is full of BMT patients and some are not faring as well. B heard just today that one man died this week. They don't really see each other too much as they are restricted to their rooms and cannot come out due to potential compromise of their immunity systems, but we have seen some. B was given a special pass by his Big Doctor to be walking outside his room. That has been a life saver for him. Before this process started B always said he wanted to go to Hawaii afterwards. That dream has long since been replaced with just the dream of going home and getting comfortable. I started this blog looking at my 2011 calendar and reflecting on what the page said. Well I have been so busy, I just looked at what February said, Faith, Family, Friends, and truly that is what has carried us to this point today. Thank you.
Until next time,
Hopeful Believer
Tuesday, February 15, 2011
Feb 15, Day +19, Skinny Binny wants to go home!
"Just the Facts"-- Got Platelets today, was a bit tired, numbers up slightly and drip pole was stripped.
So today presented some very good news. B's white cell count from yesterday went from point 3 to point 4 back to point 3, then this morning it was at point 6!!!! Yay, this is what we have been waiting for. All the nursing staff heard about this and have been commenting. It was a celebration of sorts. They say now, it will continue to climb and not bounce down. His platelets were at 11 so he got infused 1 bag. Now that count is at 15, so we will see if those hold or increase. He drip pole was stripped first of several medicine bags. He only has 2 tubes connected to his catheter, and then tonight his pain med delivery box was removed. All of a sudden there is more space in his tiny room! The best news was from the doctor doing rounds, saying that if he can drink 2 liters of water for the next 2 days and not have a fever, diarrhea or vomit, then he can go HOME! So B is on a mission to get the water/liquid down. Not easy for him due to the chemo removing his desire to eat much or drink. Dehydration is a major reason these patients have to get readmitted to the hospital. The other precaution was that he absolutely cannot get a fever, sick, diarrhea or vomit when at home. So we have our marching orders.
I can't tell you what this news had done for B's mind. To know that freedom is around the corner is amazing.
B is down to 158 pounds. He is just a skinny thing. So we will try to get him to fatten up a bit when he gets home. Also his head is showing some bald spots where the shaved hair has fallen out. But none of this is a problem when the thought of going home is within reach! He is still fragile and we will have to be very careful that we don't forget this and over do it. But we just can't wait for a homecoming. This is answered prayer and witness to the faithful that prayers are heard and answered. They are powerful and desired. We thank each of you for your wonderful support. I have not gone one day without feeling an army of support around us.
Until next time,
Hopeful Believer
So today presented some very good news. B's white cell count from yesterday went from point 3 to point 4 back to point 3, then this morning it was at point 6!!!! Yay, this is what we have been waiting for. All the nursing staff heard about this and have been commenting. It was a celebration of sorts. They say now, it will continue to climb and not bounce down. His platelets were at 11 so he got infused 1 bag. Now that count is at 15, so we will see if those hold or increase. He drip pole was stripped first of several medicine bags. He only has 2 tubes connected to his catheter, and then tonight his pain med delivery box was removed. All of a sudden there is more space in his tiny room! The best news was from the doctor doing rounds, saying that if he can drink 2 liters of water for the next 2 days and not have a fever, diarrhea or vomit, then he can go HOME! So B is on a mission to get the water/liquid down. Not easy for him due to the chemo removing his desire to eat much or drink. Dehydration is a major reason these patients have to get readmitted to the hospital. The other precaution was that he absolutely cannot get a fever, sick, diarrhea or vomit when at home. So we have our marching orders.
I can't tell you what this news had done for B's mind. To know that freedom is around the corner is amazing.
B is down to 158 pounds. He is just a skinny thing. So we will try to get him to fatten up a bit when he gets home. Also his head is showing some bald spots where the shaved hair has fallen out. But none of this is a problem when the thought of going home is within reach! He is still fragile and we will have to be very careful that we don't forget this and over do it. But we just can't wait for a homecoming. This is answered prayer and witness to the faithful that prayers are heard and answered. They are powerful and desired. We thank each of you for your wonderful support. I have not gone one day without feeling an army of support around us.
Until next time,
Hopeful Believer
Monday, February 14, 2011
Feb 14, Day +18, Bouncing like a ball
"Just the Facts"--Tired, walking, ready to go home, counts are bouncing.
The big doctor was by today, to let B know that he will be gone to an out of town conference for 1 week. He said he didn't expect to see B in the hospital when he returned. B loved this comment, because it helped him overcome the disappointment of the wake up he got last night that let him know the White count went back down to point 2. All was not lost, as when I left tonight it was back up to point 3. So you can see that it is doing a bit of bouncing, just like the platelets. The Bone Marrow disease B has is part of the culprit. It provided a hostile environment to set up house, so the super cells are really having to work extra hard to get set up to start production. We keep being told that it could climb any day now. So we wait.
We have see some of the closely cropped hair on B's head fall out. So now without any shaving, there are several bald spots. This is why we cut it off. The fall out is messy, annoying, and depressing, so taking control is a lot better and cleaner. It is interesting to see how this process with the hair is going. B will most likely get both blood and platelets tomorrow as both are getting low again. One of these days very soon, they will increase on their own, and we will be so overjoyed!
Until next time,
Hopeful Believer.
The big doctor was by today, to let B know that he will be gone to an out of town conference for 1 week. He said he didn't expect to see B in the hospital when he returned. B loved this comment, because it helped him overcome the disappointment of the wake up he got last night that let him know the White count went back down to point 2. All was not lost, as when I left tonight it was back up to point 3. So you can see that it is doing a bit of bouncing, just like the platelets. The Bone Marrow disease B has is part of the culprit. It provided a hostile environment to set up house, so the super cells are really having to work extra hard to get set up to start production. We keep being told that it could climb any day now. So we wait.
We have see some of the closely cropped hair on B's head fall out. So now without any shaving, there are several bald spots. This is why we cut it off. The fall out is messy, annoying, and depressing, so taking control is a lot better and cleaner. It is interesting to see how this process with the hair is going. B will most likely get both blood and platelets tomorrow as both are getting low again. One of these days very soon, they will increase on their own, and we will be so overjoyed!
Until next time,
Hopeful Believer.
Sunday, February 13, 2011
Feb 13, Day +17 Are we climbing yet?
"Just the Facts"-- Headache all day, more tired today, less pain.
Well, from day to day, you never know what you will encounter. B did not get any platelets or blood today, and it seems he was more tired. Even though he did get some walking in, he could not go for long without needing to nod off for a bit. It has happens like that every other day or so. Yesterday I mentioned that the White cells showed up. The number was point one. Also it is important to note that he did get platelets yesterday. So at midnight the new numbers were: White cells point 2! Platelets 13. This was exciting to hear the Whites grow. Then at noon today the White cell count was point 3! Yahoo, but we didn't find out until later that the platelet count was at 15!!! He didn't get platelets today. That means they generated on their own. So it sounds like we are beginning to climb. The reading from tonight at midnight will be a tell all. So I could be getting a call at 4am tomorrow, Monday to get the latest exciting news. B's mind right now is very sensitive. He really cannot handle any negative information. He interprets everything as meaning he will have to stay longer. So this climbing news couldn't have come at a better time.
At the home front we are taking an optimistic view at all this and preparing for B's return. The house was scrubbed yesterday, and washing protocol signs will go up this week as a reminder to all in the house just when you will need to wash your hands. Of course the upstairs will be off limits for most everyone. Wipe down rituals will begin this week as well, and the cars will be thoroughly cleaned. Just about anywhere B will be needs to be fully scrubbed to keep him healthy. So a big thank you to the cleaning crew, also I think there is a seamstress and a laundress in there too! So nice to get those cards of encouragement. It really is a sweet blessing. We know we are surrounded by so many giving and caring people and it is amazing to be the recipients of this kindness. Stay tuned, hoping to have some late/early breaking news!
Until next time,
Hopeful Believer.
Well, from day to day, you never know what you will encounter. B did not get any platelets or blood today, and it seems he was more tired. Even though he did get some walking in, he could not go for long without needing to nod off for a bit. It has happens like that every other day or so. Yesterday I mentioned that the White cells showed up. The number was point one. Also it is important to note that he did get platelets yesterday. So at midnight the new numbers were: White cells point 2! Platelets 13. This was exciting to hear the Whites grow. Then at noon today the White cell count was point 3! Yahoo, but we didn't find out until later that the platelet count was at 15!!! He didn't get platelets today. That means they generated on their own. So it sounds like we are beginning to climb. The reading from tonight at midnight will be a tell all. So I could be getting a call at 4am tomorrow, Monday to get the latest exciting news. B's mind right now is very sensitive. He really cannot handle any negative information. He interprets everything as meaning he will have to stay longer. So this climbing news couldn't have come at a better time.
At the home front we are taking an optimistic view at all this and preparing for B's return. The house was scrubbed yesterday, and washing protocol signs will go up this week as a reminder to all in the house just when you will need to wash your hands. Of course the upstairs will be off limits for most everyone. Wipe down rituals will begin this week as well, and the cars will be thoroughly cleaned. Just about anywhere B will be needs to be fully scrubbed to keep him healthy. So a big thank you to the cleaning crew, also I think there is a seamstress and a laundress in there too! So nice to get those cards of encouragement. It really is a sweet blessing. We know we are surrounded by so many giving and caring people and it is amazing to be the recipients of this kindness. Stay tuned, hoping to have some late/early breaking news!
Until next time,
Hopeful Believer.
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