The white blood count yesterday was 5.5, so they stopped the shots. Today it dropped to 2.5 without the shots, which we were pleased with. So the white count is doing just what we want and that is what is most important.
On the other hand, they are still puzzled by all my fevers. Pretty much the last 24 hours I have had a fever every 4-6 hours, when my Tylenol where's off. They all think it is the graft coming in but at the same time do not want to stop these strong antibiotics. When all your counts are already low, a 100.2 fever just wipes you out! So we have been begging for Tylenol and they have been good about giving us approval to take it. Problem is at 4 am you have to call the inpatient unit and get permission. So sleep is lacking a little...
They also talked today about doing two test that would let us know if their were donor cells in my blood. They said just take the first test as a baseline and do not get too excited about it.
My appetite is still extremely low. Between that and the fevers, I am not the most jolly person you have ever seen. But we are taking it day by day.
Monday, April 30, 2012
Saturday, April 28, 2012
DOT +18
The white count as started to really come in to 3.6! And the docs seem very happy about that because those cells can help fight and keep these infections away.
I am still running several fevers per day ranging from 100 to 101.5 and the docs think they are coming from the graft coming. But with such serious infections in my bloodstream last week, the docs are not stopping the meds yet because those fevers "could" be an infection. (although they think that is a longshot)
So the main thing we are waiting on now is for the fevers to go away and be able to drop the strong antibiotics. Due to all this, it has been very hard for me to eat. My appetite it basically zero and I have to make myself have a few bites of food. Hopefully soon that will come back because I love to eat!
With the white count coming in nice we are really excited! But since the last time, we are excited with caution. The next few weeks will be interesting watching the white blood count but not knowing the full details. But the best things come to those who wait! And we are praying that it's the best possible result!
Burns
I am still running several fevers per day ranging from 100 to 101.5 and the docs think they are coming from the graft coming. But with such serious infections in my bloodstream last week, the docs are not stopping the meds yet because those fevers "could" be an infection. (although they think that is a longshot)
So the main thing we are waiting on now is for the fevers to go away and be able to drop the strong antibiotics. Due to all this, it has been very hard for me to eat. My appetite it basically zero and I have to make myself have a few bites of food. Hopefully soon that will come back because I love to eat!
With the white count coming in nice we are really excited! But since the last time, we are excited with caution. The next few weeks will be interesting watching the white blood count but not knowing the full details. But the best things come to those who wait! And we are praying that it's the best possible result!
Burns
Thursday, April 26, 2012
DOT +16
Well, I have been in the "big house" the last few nights for the continuing fevers. After the last hospital stay, they pulled my original line (big iv) and waited 2 days and then put another in. On Tuesday they ended up pulling that line also because we felt it was getting infected also.
The infection that I got is a really nasty one and is hard to get rid of. They have me on daily meds and more pills than I want to talk about. So this time they discharged me without any line and I will go to the clinic and get a regular iv everyday for my meds. (oh joy for all those needle sticks!) The infections love to live in these central lines and can really grow in them.
Infections are a big part of a bone marrow transplant risk, so that's why they are taking this so serious. Especially during the time right now when I barely have any white blood cells. Sometimes we get so focused on the infection we forget to ask about the graft.
On a better note, my white blood count is up to 0.6 now and moving slowly! Slow is good from what they are telling me. I need those good white cells to help fight this infection. They will wait for a graft study to really see who's cells they are.
Otherwise we are good. I now have NO hair. The nurse in the hospital took a razor to it because it started to fall out like crazy and it was gross. It really is not that big of a deal since I have had a buzz cut for so long.
Thanks for all the prayers, text, calls, cards, and thoughts! This one is definitely harder, but the prize at the end will be even bigger!!
The infection that I got is a really nasty one and is hard to get rid of. They have me on daily meds and more pills than I want to talk about. So this time they discharged me without any line and I will go to the clinic and get a regular iv everyday for my meds. (oh joy for all those needle sticks!) The infections love to live in these central lines and can really grow in them.
Infections are a big part of a bone marrow transplant risk, so that's why they are taking this so serious. Especially during the time right now when I barely have any white blood cells. Sometimes we get so focused on the infection we forget to ask about the graft.
On a better note, my white blood count is up to 0.6 now and moving slowly! Slow is good from what they are telling me. I need those good white cells to help fight this infection. They will wait for a graft study to really see who's cells they are.
Otherwise we are good. I now have NO hair. The nurse in the hospital took a razor to it because it started to fall out like crazy and it was gross. It really is not that big of a deal since I have had a buzz cut for so long.
Thanks for all the prayers, text, calls, cards, and thoughts! This one is definitely harder, but the prize at the end will be even bigger!!
Tuesday, April 24, 2012
DOT +13
Unfortunately the last 36 hours have not been 'smooth sailing.' Yesterday Burns needed both blood and magnesium transfusions, which made for a long day in the clinic. However when we got home, he took a turn for the worse. He slept all afternoon, and when he came out around dinner, he started to run a fever. It slowly crept up to 100.5, which is the magic number to call the inpatient clinic. With all that happened last week, they wanted us to come in for blood cultures to make sure nothing new was going on. Thankfully they had us in and out in pretty quick. BUT, his fever spiked up at 102.5 and was accompanied with severe chills. Needless to say we were up most of the night. Today, the fevers continued so they decided to check Burns back into the 'big house.' They gave two explanations for the fevers. One is that his picc line might be infected with what he still has from last week. Another more positive reason, is that you can get fevers when the graft is coming in!! So it's great that the graft is coming in, but bad that he feels so rotten! They are hoping when his fevers die down he will be able to go home. While there, we will bring him his biscuitville in the morning, and whatnot throughout the day! We will keep you posted. Thanks for all the support!
Sunday, April 22, 2012
DOT +11
The last few days have been long ones. Good news is the pain behind my right kneecap is not a blood clot and they will look more into it tomorrow. I am still running small fevers in the 99 range and the medicines for these bacterial infections just wipe you out.
But, it's good be in the apartment and not the "big house". My white blood count is still .2 and I did not need any other supplements today. We will continue to treat the infections aggressively and also look more into my knee this week. Other than that, rest is a big key. Also, my appetite has gone to nothing, so we are trying to eat as much as we can. Some of those boost drink have been helping me get some calories.
Thanks for all the support, prayers, cards, calls and text! The last few days have worn us out, but will hope to rest well tonight and be right back to our full strength.
Saturday, April 21, 2012
DOT +10
After a long day of transfusions, and waiting on ultrasounds, the Blackwell's are tired! Burns hemoglobin dropped again, so he needed a unit of blood today. His creatinine was elevated, and they are concerned it might be due to his immunosuppressants. They drew some tests today, and we should get the results back soon and will adjust the medicine accordingly. They are staying on top of it early, to avoid further damage to his kidneys. We inquired about him possibly receiving one iv antibiotic instead of having to swallow so many pills. Just the thought of them make him nauseous- who can blame him, you should see the number he is on! Hopefully we can get the 'ok' on that.
Yesterday he woke up with a pain behind one of his knees. We thought maybe he just pulled it or leaned on it awkwardly. Today, we showed the PA and it was swollen, and he sent us to get an ultrasound, which unfortunately resulted in hangin out in a waiting room for a few hours- thank goodness for the ability to rent movies on iTunes! They think it might be a blood clot, but with his platelets being so low, they will be hesitant to do much unless absolutely necessary. The PA was going to call us tonight if it came back serious, so knock on wood, I think we are in the clear!
Till tomorrow...
Laura
Yesterday he woke up with a pain behind one of his knees. We thought maybe he just pulled it or leaned on it awkwardly. Today, we showed the PA and it was swollen, and he sent us to get an ultrasound, which unfortunately resulted in hangin out in a waiting room for a few hours- thank goodness for the ability to rent movies on iTunes! They think it might be a blood clot, but with his platelets being so low, they will be hesitant to do much unless absolutely necessary. The PA was going to call us tonight if it came back serious, so knock on wood, I think we are in the clear!
Till tomorrow...
Laura
Thursday, April 19, 2012
DOT +9
It was great to be back in the clinic today. The germ I got has grown out more in the cultures and they now know a lot more about it. They say I picked a "tough" one but that there is a medicine out there they will get it. During this time of treatment I will have to be in a private room and be on "contact isolation" to protect other patients from getting the germ. That is not that bad, just a pain every time you have to go to the bathroom or get a drink you have to get all dressed up like in the pic below. Plus you look funny, haha.
Below are my labs from today:
Test---------------- Burns------- (Normal Range)
White Blood Count---- 0----(3.2-9.8) (this will go to 0)
Hemoglobin----------- 8.8----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---------------11----(150-450) (they try and keep it above 10) C
Creatinine------------1.7----(.6-1.3)
White Blood Count---- 0----(3.2-9.8) (this will go to 0)
Hemoglobin----------- 8.8----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---------------11----(150-450) (they try and keep it above 10) C
Creatinine------------1.7----(.6-1.3)
You can see that I have "bottomed" out a good bit. Now we wait for the WBC to slowly come in. The docs and nurses do not seemed alarmed and say they like it to come in extra slow, which means the graft can be part of that and not my original cells.
So we head back to tomorrow and see what this roller coaster has for us. Also, its about that time to start thinking about when my hair will start falling out. Last time I kept some, I am not sure I will be so lucky this time.
Thanks for all the support!
Wednesday, April 18, 2012
DOT +8
I'm out of the big house! A picc line was put in today that allows me to get my meds outpatient. The docs and nurses in the big house were all great and really focused on getting me to a point where I could check out.
I'm feeling better but still tired. My white blood count is still zero so they have doubled up the nupegeon shots that will help jump start the stem cells to make white blood cells. So far, this is all normal and much slower than last time. (which is good)
I will stay on some iv antibiotics for a few weeks at the clinic to make sure these bacterial infections are long gone. Otherwise we just head into the clinic daily to check my counts and wait for the graft to come in.
Thanks for all the support!! It means the world to us....
Burns
I'm feeling better but still tired. My white blood count is still zero so they have doubled up the nupegeon shots that will help jump start the stem cells to make white blood cells. So far, this is all normal and much slower than last time. (which is good)
I will stay on some iv antibiotics for a few weeks at the clinic to make sure these bacterial infections are long gone. Otherwise we just head into the clinic daily to check my counts and wait for the graft to come in.
Thanks for all the support!! It means the world to us....
Burns
Tuesday, April 17, 2012
DOT +7
I am still in the big house, but they keep saying tomorrow might be when I can escape. No more fevers so that's a good sign that they can put another line in to use as an outpatient. I have never understood hospital stays as they are where the sick people are but they don't let you sleep longer than an hour at a time. They draw blood around here at midnight?? What?? You just have to laugh at it!!
My WBC is still zero. So hopefully that means my stem cells were beat up pretty bad and Johns cells are setting up shop and will start producing white blood cells soon. The last transplant I was at zero for just one day. (this is day 5 of zero). My hemeglobin this morning was 7.5 so I had to get another unit of blood. Most of my other counts have been ok. We are trying this time to not pay too close attention to the daily labs and look at the trends and bigger picture.
Dr. Chao is on call in the hospital so I see him a lot. He said today that these bacterial infections should not affect the graft from coming in. Good news!! And every time we talk he is trying to get me out of here. He has a great repuatation of getting people out of the hospital the minute they can.
Dad brought breakfast and Laura brought lunch and dinner. Some might think this is funny but over my 34 years and a ton of overnight stays (some as long as 7 weeks) I have NEVER eaten a hospital meal dilivered to my room! I know, I'm spoiled. (ask Laura..) I hope this is my last one and I am not going to end my streak now!
Otherwise I am good. For a line infection that got to my bloodstream I feel really good. I have had this in the past and felt so bad I could barely lift my head. My bet is I will be on a lot of iv meds for several weeks to make sure this stuff is long gone. But that we can handle at the apartment.
Again, all the cards, text, messages, thoughts and prayers mean the world to us! It keeps us going every day!
Burns
My WBC is still zero. So hopefully that means my stem cells were beat up pretty bad and Johns cells are setting up shop and will start producing white blood cells soon. The last transplant I was at zero for just one day. (this is day 5 of zero). My hemeglobin this morning was 7.5 so I had to get another unit of blood. Most of my other counts have been ok. We are trying this time to not pay too close attention to the daily labs and look at the trends and bigger picture.
Dr. Chao is on call in the hospital so I see him a lot. He said today that these bacterial infections should not affect the graft from coming in. Good news!! And every time we talk he is trying to get me out of here. He has a great repuatation of getting people out of the hospital the minute they can.
Dad brought breakfast and Laura brought lunch and dinner. Some might think this is funny but over my 34 years and a ton of overnight stays (some as long as 7 weeks) I have NEVER eaten a hospital meal dilivered to my room! I know, I'm spoiled. (ask Laura..) I hope this is my last one and I am not going to end my streak now!
Otherwise I am good. For a line infection that got to my bloodstream I feel really good. I have had this in the past and felt so bad I could barely lift my head. My bet is I will be on a lot of iv meds for several weeks to make sure this stuff is long gone. But that we can handle at the apartment.
Again, all the cards, text, messages, thoughts and prayers mean the world to us! It keeps us going every day!
Burns
Monday, April 16, 2012
DOT +6
The last 24 hours have been a little wild. Yesterday I was very tired and took a nap. When I woke up I was starting to get a fever. We thought it was from the nupegeon shots I started yesterday. When the fever hit 100.5 at 7, we called the inpatient unit and they told us to come in for some testing.
They drew some cultures and started me on 2 different types of iv meds. With no white blood cells, any fever I have they must act upon fast. We stayed on the inpaitient ward until around 1 am and finished the meds and went back home. When we got home, another fever poped up and rose to 102.1. We called back twice and they told us to take Tylenol and wait it out till the morning since I already had a lot of iv meds. Not much sleep last night!
When we got to the clininc this morning, a culture had grown out of my central line (a huge iv where all my meds go in) So they had to pull my line and check me into the hospital for a few days of intenses antibiotics. They cannot put another central line in until blood cultures are all negative. I need the central line on order to get all my meds as an outpatient.
The bacterial infections that grew in the test were gram positive and gram negative. They are about to start several different iv antibiotics as I type and they hope it will be cured up pretty fast. Good news here is that I think we caught this very early. Another reason they have the 24 hour care for patients like me that need attention fast.
So I am in the "big house.". The joke around here is the outpatient clinic is called the "out house". I never thought I would say this but...send me to the outhouse!
Luckily it should be a short stay. Laura, mom and dad will be so kind and bring me food. I CANNOT stand hospital food. Then soon we will be back in our apartment.
Thanks for all the support!!
They drew some cultures and started me on 2 different types of iv meds. With no white blood cells, any fever I have they must act upon fast. We stayed on the inpaitient ward until around 1 am and finished the meds and went back home. When we got home, another fever poped up and rose to 102.1. We called back twice and they told us to take Tylenol and wait it out till the morning since I already had a lot of iv meds. Not much sleep last night!
When we got to the clininc this morning, a culture had grown out of my central line (a huge iv where all my meds go in) So they had to pull my line and check me into the hospital for a few days of intenses antibiotics. They cannot put another central line in until blood cultures are all negative. I need the central line on order to get all my meds as an outpatient.
The bacterial infections that grew in the test were gram positive and gram negative. They are about to start several different iv antibiotics as I type and they hope it will be cured up pretty fast. Good news here is that I think we caught this very early. Another reason they have the 24 hour care for patients like me that need attention fast.
So I am in the "big house.". The joke around here is the outpatient clinic is called the "out house". I never thought I would say this but...send me to the outhouse!
Luckily it should be a short stay. Laura, mom and dad will be so kind and bring me food. I CANNOT stand hospital food. Then soon we will be back in our apartment.
Thanks for all the support!!
Saturday, April 14, 2012
DOT +4
We are 4 days post transplant and the roller coaster ride has started. At times, I am feeling pretty good and then things go south, but that is expected. Yesterday I had to get my third unit of blood and some magnesium because those counts were low. The magnesium really messed with me causing me to feel real hot and break out into terrible itching. So they stopped the mag before it could be finished. Good news was today all my levels were good and no supplements were needed!
My white count both yesterday and today was zero. Scary to have no immune system. They will start tomorrow the nupegeon shots to help jump start the stem cells to producing some white blood cells. We do not know how long that will take. The last transplant, my white count bounced back real fast, which was the problem because it was my own stem cells that started to produce white blood cells. This time we hope my cells have been damaged too much and Johns cells will be able to start producing white cells and multiplying slowly bringing in the new immune system.
I can definitely feel that they have really beat my immune system up this time. I have been very tired and just hanging around the apartment. Both Laura and I's parents came by today for a nice visit and Laura and I plan on having a quite couple of days. We will wash lots of hands and take many of meds.
Thanks for everyone reaching out to both Laura and I! It means the world!
God is good.
My white count both yesterday and today was zero. Scary to have no immune system. They will start tomorrow the nupegeon shots to help jump start the stem cells to producing some white blood cells. We do not know how long that will take. The last transplant, my white count bounced back real fast, which was the problem because it was my own stem cells that started to produce white blood cells. This time we hope my cells have been damaged too much and Johns cells will be able to start producing white cells and multiplying slowly bringing in the new immune system.
I can definitely feel that they have really beat my immune system up this time. I have been very tired and just hanging around the apartment. Both Laura and I's parents came by today for a nice visit and Laura and I plan on having a quite couple of days. We will wash lots of hands and take many of meds.
Thanks for everyone reaching out to both Laura and I! It means the world!
God is good.
Thursday, April 12, 2012
DOT +2
After both stem cell infusions and two units of blood, I am starting to feel better. It's amazing sometimes how much better you feel after a unit of blood. (sounds gross and vampire like but it's the truth)
Today was a long day at the clinic but both Laura and I rented a movie and made the best of it. Along with the unit of blood I got a liter of iv fluids because my blood is showing some signs of dehydration. But most of my fluids are again going to my belly. I'm starting to look pregnant again, maybe 2 months, haha. They will montitor that close over the next few days to make sure I am not retaining to much fluid.
Since I was feeling well, we got to grill out some steaks tonight. Which was a nice treat and also could help my hemoglobin. Dr. Buckley always encouraged me to eat meat growing up.
John is feeling much better now and is back at work. He had some leg pain but that is going away pretty quick.
We head back in the morning for another round of blood test and see what needs to be done next. Thanks for everyone's support!
Burns
Today was a long day at the clinic but both Laura and I rented a movie and made the best of it. Along with the unit of blood I got a liter of iv fluids because my blood is showing some signs of dehydration. But most of my fluids are again going to my belly. I'm starting to look pregnant again, maybe 2 months, haha. They will montitor that close over the next few days to make sure I am not retaining to much fluid.
Since I was feeling well, we got to grill out some steaks tonight. Which was a nice treat and also could help my hemoglobin. Dr. Buckley always encouraged me to eat meat growing up.
John is feeling much better now and is back at work. He had some leg pain but that is going away pretty quick.
We head back in the morning for another round of blood test and see what needs to be done next. Thanks for everyone's support!
Burns
Wednesday, April 11, 2012
Second Day of Transplant #2
The second half of johns cells were transplanted today. I got another 3 million stem cells to build a new immune system. The transplant went great and was infused is a short 40 minutes.
Due to this being the second go around and the addition of radiation, the effects have been harder. Most of that has been in my stomach as an acid pain or burning sensation. (different from last time which was nausea) The clinic gave me some iv Pepcid and I can take some of over the counter the next few days to help me eat and drink. Some of the drugs I am on are hindered by the pepcid so I have to use it sparingly.
I can definitely tell they have brought my immune system down lower this time to try and help the graft come in. My hemoglobin was 7.0 today, the lowest I can remember since I was 10 or so. They gave me a unit of blood in addition to the cells and will probaly repeat another unit of blood tomorrow.
I am slap worn out right now! I am really glad that the preparation and transplant is behind us and ready to start the waiting game. Right now it is hard to express in words all that is going on. My nurse today did a great job of keeping all of us laughing through the transplant. Laugher is the best medicine!
Here are some pics and will post again tomorrow...tired!!
Due to this being the second go around and the addition of radiation, the effects have been harder. Most of that has been in my stomach as an acid pain or burning sensation. (different from last time which was nausea) The clinic gave me some iv Pepcid and I can take some of over the counter the next few days to help me eat and drink. Some of the drugs I am on are hindered by the pepcid so I have to use it sparingly.
I can definitely tell they have brought my immune system down lower this time to try and help the graft come in. My hemoglobin was 7.0 today, the lowest I can remember since I was 10 or so. They gave me a unit of blood in addition to the cells and will probaly repeat another unit of blood tomorrow.
I am slap worn out right now! I am really glad that the preparation and transplant is behind us and ready to start the waiting game. Right now it is hard to express in words all that is going on. My nurse today did a great job of keeping all of us laughing through the transplant. Laugher is the best medicine!
Here are some pics and will post again tomorrow...tired!!
Tuesday, April 10, 2012
Day of Transplant #2
First off, we found out that they collected 5.6 million stem cells from John yesterday- HUGE! That is miraculous! (We have to give Eliza credit for giving him his shots!). John was such a trooper both yesterday and today. He is the true embodiment of a perfect brother, one who would literally do ANYTHING to help his brother out. As soon as we found out that we had to do a second transplant, John immediately and willingly agreed to be the donor, knowing what he would have to go through. He is giving Burns such an amazing gift- the chance for a better, healthier life- something that no one else can give; all I can say is, what a remarkable brother, and person!
Burns handled radiation wonderfully yesterday! He was a bit nervous, having never experienced it, but as with everything else he faces, tackled it head on. Luckily he didn't have any of the nausea that they said some people experience, but he is a little tired today, but that is probably an accumulation of all the chemo and stress of the entire experience. Burns has been so strong this whole week, and the weeks leading up to this. He has kept his normal positive attitude, even when times would get tough. I can not fathom staying positive, after what he has been through his whole life, but yet he does. He has an amazing inner strength that keeps him going, which I have always admired so much.
We finished the first transplant around 4:00 today. It took about 1 1/2 hrs. Burns joked that the actual transplant is the easy part! It goes by faster than a blood transfusion!! Our emotions were all over the place today. Honestly, there were tears shed. Some of anxiety, and frustration of having to go through this again. But mostly, there were tears of hope. Hope of Burns not having reactions. Hope of Burns not catching viruses. However most of all, hope of the graft working- and it will this time.
Burns and I thank you all so much for the continued support. All of the messages mean the world to us!
Laura
Monday, April 9, 2012
DOT -1
Hey it's John. We are back at it again here in Durham. I came up yesterday just in time to watch the leaders tee off at the Masters. Great fun watching Bubba pull off the unprobable win.
Eliza has been giving me my neupogen shots (to boost my cell count) since last Thursday. The first few were a little rough but we got the hang of it. Thx babe!
Today was my first day on the apheresis machine. 7 hrs later we had a large bag of stem cells that Burns will get tomorrow. He had his last round of chemo (radiation) this afternoon. He and Laura both look great and are nothing but positive.
Mom fixed us all a wonderful dinner and we are all hoping someone gets up and goes to bed so we can do so ourselves.
Thanks again for ALL the great emails and posts. Burns' will to live a longer life with Laura is so strong. I'm just lucky to be able to lend them a hand.
Good night!
Eliza has been giving me my neupogen shots (to boost my cell count) since last Thursday. The first few were a little rough but we got the hang of it. Thx babe!
Today was my first day on the apheresis machine. 7 hrs later we had a large bag of stem cells that Burns will get tomorrow. He had his last round of chemo (radiation) this afternoon. He and Laura both look great and are nothing but positive.
Mom fixed us all a wonderful dinner and we are all hoping someone gets up and goes to bed so we can do so ourselves.
Thanks again for ALL the great emails and posts. Burns' will to live a longer life with Laura is so strong. I'm just lucky to be able to lend them a hand.
Good night!
Sunday, April 8, 2012
2nd DOT -2. Happy Easter, Happy Masters and Happy last day of Chemo
Another successful day! Not much side effects from the chemo besides some stomach pains that were short lived. Today was the last day of chemo and tomorrow is the radiation piece. Then transplant day is Tuesday!
John made it up here fine and is doing good with his shots. He starts his collection in the morning at 8 and I do not have to go in till 1 because radiation is at 4:30.
We had a nice Easter dinner here with Mom, Dad, John, Laura and I. Some flank steak, pasta, and they all had a salad. (I skipped salad for veggie soup). It was something else cooking dinner through the excitement of the Masters! Who knows, maybe the masters has keep us feeling even better this go around.
My counts are still just below normal but are expected to fall fast over the next 5 days. So I am expecting my energy level to drop fast. During chemo they give you lots of steroids to help with the side effects. They also plan the best golf tournament of the year to help too, haha.
So we are about to hit the tough zone but it's nothing we cannot handle. John's here to what brothers dream they would do for each other. Laura's here in Sickness and in health doing everything to make this as easy as it can be and be the best support team. Mom and dad are coming back tomorrow to help with all the logistic's and trying to keep all of us comfortable. And me, I am ready to try and beat the heck out of this thing and get a graft to set in!
Thanks for everyone checking in. Happy Easter!!! Happy Easter!
John made it up here fine and is doing good with his shots. He starts his collection in the morning at 8 and I do not have to go in till 1 because radiation is at 4:30.
We had a nice Easter dinner here with Mom, Dad, John, Laura and I. Some flank steak, pasta, and they all had a salad. (I skipped salad for veggie soup). It was something else cooking dinner through the excitement of the Masters! Who knows, maybe the masters has keep us feeling even better this go around.
My counts are still just below normal but are expected to fall fast over the next 5 days. So I am expecting my energy level to drop fast. During chemo they give you lots of steroids to help with the side effects. They also plan the best golf tournament of the year to help too, haha.
So we are about to hit the tough zone but it's nothing we cannot handle. John's here to what brothers dream they would do for each other. Laura's here in Sickness and in health doing everything to make this as easy as it can be and be the best support team. Mom and dad are coming back tomorrow to help with all the logistic's and trying to keep all of us comfortable. And me, I am ready to try and beat the heck out of this thing and get a graft to set in!
Thanks for everyone checking in. Happy Easter!!! Happy Easter!
Saturday, April 7, 2012
2nd DOT -3
Another good day with the 3 doses of chemo. They give you lots of steroids during it, so that helps you feel much better and control the side effects. One strange thing is that the hiccups are bad. Seem peanut butter and a prescribed medicine help those. (Laura taught me the spoonful of peanut butter and they go away quick)
My counts are still up but should start diving soon:
Test---------------- Burns------- (Normal Range)
White Blood Count---- 2.7----(3.2-9.8) (this will go to 0)
Hemoglobin----------- 9.2----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---------------56----(150-450) (they try and keep it above 10) C
Creatinine------------1.6----(.6-1.3)
John is doing good and is headed to Durham tomorrow so he can have two days of collections. The shots have set in and he can really feel them working. Each day it will get worse but he is doing good.
This second go around has a different feel. We know where to go and what is going to happen, for now. I think the nurses like our question count down from 1.4 million questions to only about 100. I wish we could say we don't know a lot about this stuff but we do. Practise makes perfect.
The apartment is much nicer now with our couch and chairs. Tomorrow is the last day of chemo and then total body irradiation on Monday which is scheduled for 4:30 and might take an hour or so.
One thing is we are ready! Our spirites are up and we have gotten in a good routine to make the best out of it.
Your support is a MAJOR part of keeping us going everyday! Thanks!
My counts are still up but should start diving soon:
Test---------------- Burns------- (Normal Range)
White Blood Count---- 2.7----(3.2-9.8) (this will go to 0)
Hemoglobin----------- 9.2----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---------------56----(150-450) (they try and keep it above 10) C
Creatinine------------1.6----(.6-1.3)
John is doing good and is headed to Durham tomorrow so he can have two days of collections. The shots have set in and he can really feel them working. Each day it will get worse but he is doing good.
This second go around has a different feel. We know where to go and what is going to happen, for now. I think the nurses like our question count down from 1.4 million questions to only about 100. I wish we could say we don't know a lot about this stuff but we do. Practise makes perfect.
The apartment is much nicer now with our couch and chairs. Tomorrow is the last day of chemo and then total body irradiation on Monday which is scheduled for 4:30 and might take an hour or so.
One thing is we are ready! Our spirites are up and we have gotten in a good routine to make the best out of it.
Your support is a MAJOR part of keeping us going everyday! Thanks!
Friday, April 6, 2012
Thursday, April 5, 2012
DOT 2 Day -5
Today was a good day with the chemo and no reactions so far. This week is also one of my favorites as it is "Master's Week!". I got to see a lot on my iPad through streaming video and that helped the time pass. Not much better than some Augusta National to pass the time! This week is master week with some chemo, not chemo with masters week. Masters wins!
John is doing well in Wilmington. He started his shots this morning with 2 shots in the morning and 2 in the afternoon. We thought it would be one, but they split them up in smaller doses so he needs two each time he gets a dose. Hopefully his pain will be manageable for the next few days.
They are doing two new things this go around. One is the addition of radiation to prepare for the transplant. Another is a replacement for my immunosuppressmet drug I take every day. I will now take two different ones and drop the cyclosporine. Prograf, twice a day,and cell cept, three times a day will be the drugs. Hopefully these will help the graft come in.
So tomorrow is day -4. Laura is doing good and we grilled a good hamburger out tonight. With the weather better, we hope to use the grill more.
Thanks for all the support! It really makes a huge difference!
John is doing well in Wilmington. He started his shots this morning with 2 shots in the morning and 2 in the afternoon. We thought it would be one, but they split them up in smaller doses so he needs two each time he gets a dose. Hopefully his pain will be manageable for the next few days.
They are doing two new things this go around. One is the addition of radiation to prepare for the transplant. Another is a replacement for my immunosuppressmet drug I take every day. I will now take two different ones and drop the cyclosporine. Prograf, twice a day,and cell cept, three times a day will be the drugs. Hopefully these will help the graft come in.
So tomorrow is day -4. Laura is doing good and we grilled a good hamburger out tonight. With the weather better, we hope to use the grill more.
Thanks for all the support! It really makes a huge difference!
Wednesday, April 4, 2012
Day before we start
Laura and I are here in Durham ready for "round 2". We got here about 12:30 and have been busy since then. I had a ct done and Laura started getting the apartment ready. We had our two chairs and couch delivered today and that is going to make all the difference in the world. The old rentals were just not that comfortable!
Below is the schedule for next few days. We are here and John is starting his shots in Wilmington and then heading up to Durham on Sunday.
Thursday 5th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots
Friday 6th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots
Saturday 7th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots
Sunday 8th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots and travel to Durham
Monday 9th:
Burns: radiation treatment and clinic visit
John: 1st day of stem cell collection and 2 nupegeon shots
Tuesday 10th:
Burns: transplant day!
John: second day of stem cell collection
Wednesday 11th:
Burns: rest of stem cell transplant
Leaving today was not fun, I cannot lie. But we are in good spirits and are ready to tackle this chemo again. Saying goodbye to the dogs was tough but they are in good hands with their grandparents. I cannot imagine the people who do this and have to say goodbye to their kids.
All the support we have gotten has been tremendous. We cannot thank you enough. Hopefully the next few days will go as well as it did the first time, with limited side effects from the chemo.
Thanks for checking in on us! God is good!
Below is the schedule for next few days. We are here and John is starting his shots in Wilmington and then heading up to Durham on Sunday.
Thursday 5th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots
Friday 6th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots
Saturday 7th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots
Sunday 8th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots and travel to Durham
Monday 9th:
Burns: radiation treatment and clinic visit
John: 1st day of stem cell collection and 2 nupegeon shots
Tuesday 10th:
Burns: transplant day!
John: second day of stem cell collection
Wednesday 11th:
Burns: rest of stem cell transplant
Leaving today was not fun, I cannot lie. But we are in good spirits and are ready to tackle this chemo again. Saying goodbye to the dogs was tough but they are in good hands with their grandparents. I cannot imagine the people who do this and have to say goodbye to their kids.
All the support we have gotten has been tremendous. We cannot thank you enough. Hopefully the next few days will go as well as it did the first time, with limited side effects from the chemo.
Thanks for checking in on us! God is good!
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