Oh my, I have really fallen down on the job! It only has taken me 3 weeks to write about Josh's December labs. Christmas was so super crazy this year with Josh working the whole time I feel like this week is the first time I've had a chance to breathe!
Josh went for labs the week before Christmas and everything looked good. The liver numbers were back down this time, although still not normal. We were happy to see that they really are just bouncing around. Hopefully when his body gets used to the constant chemo he will level out.
In other news we will be making a few changes to try and help Josh deal with the one and only major side effect he has experienced - fatigue! Seriously, the man is just so tired. In the months before he was diagnosed he was getting increasingly fatigued, although we didn't really realize how severe it was. After his blood levels stabilized after getting on Tasigna he was feeling so much better. And really he still is, but at the same time is so exhausted compared to how he felt five years ago. Of course there are many things that factor into that, between the night time working schedule and 3 demanding kiddos. But it is very obvious to me what he is experiencing is not normal. He had a week off at the beginning of December and we kept basically the same hours that same week. That is when I realized how much the chemo must be affecting his sleepiness, cause I did not experience anywhere near the same amount of sleepiness as he did.
And really I think the bulk of the problem is that he is struggling to sleep during the day. He wakes up at the six hour mark and just can't sleep any more. So I've been reading up on it and we are going to make a few dietary changes that I hope will help him! I'll keep everyone posted!
We go back for another bone marrow test on the 18th. Hard to believe it has been three months since the last one!
Thursday, January 5, 2012
Thursday, November 24, 2011
Elevated Liver and PCR results!
So it feels like years since I've posted any updates! So sorry for that. I don't know why but sometimes it is harder to put into words than other times. Even when it is good news! And trying to get Josh to write it is like pulling teeth! :)
Josh went for his regular labwork this month and everything was good, other than some elevated liver enzymes. Since he started the Tasigna treatments his numbers have been bouncing around, and this month they just happened to be up. They didn't want to treat it or change his Tasigna dosage, but they did say it is important to keep an eye that it is just bouncing up and down and not trending upward. I just got on the MD Anderson site and looked at all of his labs from the last year to get a real idea of what is going on. I know it seems from the outside that not much is going on with Josh's body but on the inside things are constantly changing! Not a month goes by where his numbers are staying the same - one month a certain thing is up, the next month it's down.
Despite this changes, overall he is doing phenomenally well! As a matter of fact, his bone marrow results came back with some amazing results! Mostly it is a lot of technical mumbo jumbo, but his PCR results are a bit easier to understand. So far his results have been:
I know most of you don't care about this, but for strangers coming to the blog dealing with your own diagnosis I want to show what the MDA lab report says about how they measure PCR. I have seen on other blogs when it is reported differently and it can be confusing. This is what the report says:
Hopefully that explains it to those of you looking for specifics. I have gotten so many emails from strangers and fellow CML sufferers and caregivers as a result of this blog. I sincerely hope that you all find something of use here in what we have written. Even if it is just to have the comfort of knowing you are not alone on this path!
We appreciate your continued prayers, especially for Josh's liver! We also have another prayer request that I will hopefully blog about later this week. We have REALLY appreciated those of you taking the time to shop Amazon through our link! I have no idea who it is, but we have already made enough to pay off one of the 30 MD Anderson bills sitting on our desk! Thank you, thank you!!
Josh went for his regular labwork this month and everything was good, other than some elevated liver enzymes. Since he started the Tasigna treatments his numbers have been bouncing around, and this month they just happened to be up. They didn't want to treat it or change his Tasigna dosage, but they did say it is important to keep an eye that it is just bouncing up and down and not trending upward. I just got on the MD Anderson site and looked at all of his labs from the last year to get a real idea of what is going on. I know it seems from the outside that not much is going on with Josh's body but on the inside things are constantly changing! Not a month goes by where his numbers are staying the same - one month a certain thing is up, the next month it's down.
Despite this changes, overall he is doing phenomenally well! As a matter of fact, his bone marrow results came back with some amazing results! Mostly it is a lot of technical mumbo jumbo, but his PCR results are a bit easier to understand. So far his results have been:
- April 2011 - 91.43 %
- July 2011 - 5.19 %
- October 2011 - .09 %
I know most of you don't care about this, but for strangers coming to the blog dealing with your own diagnosis I want to show what the MDA lab report says about how they measure PCR. I have seen on other blogs when it is reported differently and it can be confusing. This is what the report says:
Coexpression of b3a2 and b2a2 BCR-ABL fusion transcripts is detected byreal-time PCR.
The percentage of BCR-ABL to ABL transcripts is 91.43.
COMMENT: Quantitative real-time PCR analysis performed on RNA from thissample for the BCR-ABL fusion transcript resulting from the t(9;22) inleukemia. BCR-ABL and ABL transcript levels are detected simultaneouslyand quantitative results expressed as the ratio of BCR-ABL to ABL levels.This ratio may vary up to one-log because of methodological reasons. Asof 8/2/07, the assay has shifted to a new platform.
Hopefully that explains it to those of you looking for specifics. I have gotten so many emails from strangers and fellow CML sufferers and caregivers as a result of this blog. I sincerely hope that you all find something of use here in what we have written. Even if it is just to have the comfort of knowing you are not alone on this path!
We appreciate your continued prayers, especially for Josh's liver! We also have another prayer request that I will hopefully blog about later this week. We have REALLY appreciated those of you taking the time to shop Amazon through our link! I have no idea who it is, but we have already made enough to pay off one of the 30 MD Anderson bills sitting on our desk! Thank you, thank you!!
Tuesday, October 25, 2011
Security?!?
I have been falling behind on my blogging duties! We did finally make it to Josh's bone marrow test last week! If you remember we had a mess trying to get it scheduled, but finally we were healthy enough to go.
It was kind of a fiasco - there was a moment where an employee actually used the phrase "Do I need to call security?" Yeah, that kind of day. If you know Josh and me then you know we're rule followers. There's not much that makes Josh angrier than people who try to bend the rules cause they don't want to put the effort forth to do it the right way. Well, before you get sedated for a bone marrow test they tell you not to eat or drink after midnight the night before. Technically I guess, nobody told us that. When you look at your appointment online there is a link that says "click here for special instructions". So we read them and knew that he shouldn't eat or drink. Well, there is also a line that says:
Simple enough, right? The first time we had this done we didn't believe it and he did not take his meds. So then in the operating room minutes before he was put under they told him, ohhhh, go ahead and take it. So he drank a mouthful of water with pills. So this time we were trying to keep him on a good schedule as far as timing of the chemo so he went ahead and took his pills with a sip of water.
So we get upstairs and are filling out the forms in the anesthesia services center. It asks if you ate or drank and he said no. And then it asks if you took your scheduled medication. Josh circled yes. And then it asks you how much water did you drink with it. And then there is a blank line to write the answer on. So Josh looks at me and asks what he should put there. I'm all, "ummmm, a swallow?" Well Josh thought he should be more accurate in his guess. So he wrote the amount 1.5 ounces. A complete RANDOM guess of how much water it takes to swallow two large pills. No big deal, right?
Well next thing we know they call him up there and tell him they can't do the surgery cause he drank water. We explained that the form THEY provide us says to take your meds. And that last time he took them while standing outside the operating room. They told us the problem wasn't that he took them, it was cause he drank too much water. We explained that it was a tiny regular swallow of water and because the form didn't specifically state what kind of answer they wanted we guessed and wrote ounces. So I told them to just give me the form back and I will change it to whatever they needed us to say. WELL, they wouldn't let us see the form again. And that's when things got ugly. I was FURIOUS!! It took everything I had in me not to yell.
Josh just about choked down those nasty pills with the tiniest amount of water possible, and because I did not know their secret code word "swallow" we were going to be delayed by hours. We just about moved mountains to get us there while the doctor was in, while we weren't sick, while Josh wasn't working. On top of that my mom took off work to watch the kids and Wyatt was still sick and was puking that morning without his mommy. ALL we wanted to do was get out of there and get home.
SO I talk to the lady at the front desk and tell her it would be super polite and helpful to let people know that if they took their medication the write term they are looking for is how many "swallows" of water you had. If that is what they wanted they should have written a little blank like this:
Easy enough, right? Nope. They said they can't tell people what to write on the form. So I ask her if a gulp would have been too much. A sip? A teaspoon? Hmmm. Nobody knows the answers to these questions. Isn't this the most absurd thing ever?
I mean, people who are there getting this done are going through HELL. No matter what cancer it is, how old the person is, or whatever - you can pretty much guarantee that this is the worst time of their life. To have to deal with such stupidity is just absurd. They should really be more professional than this.
And the problem was this one woman - she was HORRIBLE. Just so condescending and rude. She even has the nerve to claim that they didn't tell us to take the medicine and that the anesthesia people are separate from MD Anderson. So we walk away and the woman started talking about me with another customer. That was when Josh lost it. He got up and literally yelled at the woman. That was when she asked if she needed to call security. I was happy my man stood up for me, though! :) I went and talked to the patient advocacy people and they were pretty outraged about the whole situation.
The instructions to take you medicine should be removed. AND the people who work in that office should know what information if being mailed to patients. AND the form you fill out should give a clear expectation of what they are looking for. I felt like I was playing a game of Password and they want you to guess what the secret word is to describe the amount of water in one swallow. So ridiculous!
So we sat for hours pushing our doctors appointment late resulting in us not getting home till late in the day. It was really maddening. We only met with the doc for a few minutes, but he told us that he thought Josh's three month BMA results were "outstanding." So that was exciting to hear. Of course we won't know about this next round of tests for a couple more weeks. Praying for good results!
We have already started getting funds deposited into our Amazon account from people shopping through our link, so THANK YOU!! Every penny makes a difference for us. Josh went to the Light the Night walk so I will have him write about it later this week!
Thanks for listening to my ramblings about our horrible MD Anderson day! I know it was something REALLY not important in the scheme of things, but it was important to us at the time! Here's a pic of Josh with Noah after he taught him how to ride his bike without training wheels. So thankful he was here to do it!
It was kind of a fiasco - there was a moment where an employee actually used the phrase "Do I need to call security?" Yeah, that kind of day. If you know Josh and me then you know we're rule followers. There's not much that makes Josh angrier than people who try to bend the rules cause they don't want to put the effort forth to do it the right way. Well, before you get sedated for a bone marrow test they tell you not to eat or drink after midnight the night before. Technically I guess, nobody told us that. When you look at your appointment online there is a link that says "click here for special instructions". So we read them and knew that he shouldn't eat or drink. Well, there is also a line that says:
You may take your other medications as you normally do, but only with small sips of water to swallow
your medications.
your medications.
Simple enough, right? The first time we had this done we didn't believe it and he did not take his meds. So then in the operating room minutes before he was put under they told him, ohhhh, go ahead and take it. So he drank a mouthful of water with pills. So this time we were trying to keep him on a good schedule as far as timing of the chemo so he went ahead and took his pills with a sip of water.
So we get upstairs and are filling out the forms in the anesthesia services center. It asks if you ate or drank and he said no. And then it asks if you took your scheduled medication. Josh circled yes. And then it asks you how much water did you drink with it. And then there is a blank line to write the answer on. So Josh looks at me and asks what he should put there. I'm all, "ummmm, a swallow?" Well Josh thought he should be more accurate in his guess. So he wrote the amount 1.5 ounces. A complete RANDOM guess of how much water it takes to swallow two large pills. No big deal, right?
Well next thing we know they call him up there and tell him they can't do the surgery cause he drank water. We explained that the form THEY provide us says to take your meds. And that last time he took them while standing outside the operating room. They told us the problem wasn't that he took them, it was cause he drank too much water. We explained that it was a tiny regular swallow of water and because the form didn't specifically state what kind of answer they wanted we guessed and wrote ounces. So I told them to just give me the form back and I will change it to whatever they needed us to say. WELL, they wouldn't let us see the form again. And that's when things got ugly. I was FURIOUS!! It took everything I had in me not to yell.
Josh just about choked down those nasty pills with the tiniest amount of water possible, and because I did not know their secret code word "swallow" we were going to be delayed by hours. We just about moved mountains to get us there while the doctor was in, while we weren't sick, while Josh wasn't working. On top of that my mom took off work to watch the kids and Wyatt was still sick and was puking that morning without his mommy. ALL we wanted to do was get out of there and get home.
SO I talk to the lady at the front desk and tell her it would be super polite and helpful to let people know that if they took their medication the write term they are looking for is how many "swallows" of water you had. If that is what they wanted they should have written a little blank like this:
______________ swallows
Easy enough, right? Nope. They said they can't tell people what to write on the form. So I ask her if a gulp would have been too much. A sip? A teaspoon? Hmmm. Nobody knows the answers to these questions. Isn't this the most absurd thing ever?
I mean, people who are there getting this done are going through HELL. No matter what cancer it is, how old the person is, or whatever - you can pretty much guarantee that this is the worst time of their life. To have to deal with such stupidity is just absurd. They should really be more professional than this.
And the problem was this one woman - she was HORRIBLE. Just so condescending and rude. She even has the nerve to claim that they didn't tell us to take the medicine and that the anesthesia people are separate from MD Anderson. So we walk away and the woman started talking about me with another customer. That was when Josh lost it. He got up and literally yelled at the woman. That was when she asked if she needed to call security. I was happy my man stood up for me, though! :) I went and talked to the patient advocacy people and they were pretty outraged about the whole situation.
The instructions to take you medicine should be removed. AND the people who work in that office should know what information if being mailed to patients. AND the form you fill out should give a clear expectation of what they are looking for. I felt like I was playing a game of Password and they want you to guess what the secret word is to describe the amount of water in one swallow. So ridiculous!
So we sat for hours pushing our doctors appointment late resulting in us not getting home till late in the day. It was really maddening. We only met with the doc for a few minutes, but he told us that he thought Josh's three month BMA results were "outstanding." So that was exciting to hear. Of course we won't know about this next round of tests for a couple more weeks. Praying for good results!
We have already started getting funds deposited into our Amazon account from people shopping through our link, so THANK YOU!! Every penny makes a difference for us. Josh went to the Light the Night walk so I will have him write about it later this week!
Thanks for listening to my ramblings about our horrible MD Anderson day! I know it was something REALLY not important in the scheme of things, but it was important to us at the time! Here's a pic of Josh with Noah after he taught him how to ride his bike without training wheels. So thankful he was here to do it!
Thursday, October 6, 2011
Help us pay MD Anderson!
So we finally took the plunge and signed up for an Amazon Associates account! This week we got this CRAZY stack of bills in the mail..... ALL from MD Anderson. We have known what we owe and what we will continue to owe each year, but trying to figure out how to make it work is still keeping us awake at night.
So Amazon to the rescue! All you have to do to help us out, is click on the widget on the right side of the screen to take you to the Amazon site to make the purchases you normally would. You don't have to buy anything special, or a certain amount, but they give us tiny percentage of all purchases that come through this blog.
We figure a few pennies is better than nothing, right? And if any of you are Amazon addicts like myself, then maybe we could actually pay a few bills this way over the course of the year. Last year we did ALL of our Christmas shopping via Amazon! Nothing says convenience like delivered to your doorstep!
This was not meant as an advertisement, but simply to say we would appreciate your help! Thanks in advance! :)
So Amazon to the rescue! All you have to do to help us out, is click on the widget on the right side of the screen to take you to the Amazon site to make the purchases you normally would. You don't have to buy anything special, or a certain amount, but they give us tiny percentage of all purchases that come through this blog.
We figure a few pennies is better than nothing, right? And if any of you are Amazon addicts like myself, then maybe we could actually pay a few bills this way over the course of the year. Last year we did ALL of our Christmas shopping via Amazon! Nothing says convenience like delivered to your doorstep!
This was not meant as an advertisement, but simply to say we would appreciate your help! Thanks in advance! :)
Wednesday, October 5, 2011
Sick as dogs!
So we are soooo sick over here! Annie started with a runny nose, and then it turned into a cough, and then I got it along with a fever, then Josh got a fever and cough, now Noah is coughing.......... well, you get the idea!
Sadly we had appointments at MD Anderson this morning, including a bone marrow aspiration for Josh. If you remember Josh does not want to do the test again without sedation, and they won't sedate if you are sick. So we sadly had to cancel. Which, really, I'm glad cause the last thing I would want to do is go hang out for hours around people with no immune systems.
Of course when we talked to them they told us they wanted us to bring him into the ER to get checked out. Evidently that is their standard care for people with leukemia with a fever. I explained how this is obviously a virus the whole family has, so they then told us to go see a local doc. Well that just seems silly, cause we still have to pay out of pocket for that, and for what? For them to say he has a virus? And they wouldn't even know what to be concerned about for a patient with CML. It just seems silly. Obviously if he gets worse or whatever we will take him in, but for now I'm not worried about it.
But of course we have had a mess rescheduling. Dr. Quintas is out of town next week, and well, we just still haven't gotten it all figured out.
This will be the first time in six months that we have gone longer than 4 weeks without bloodwork! Scary!! We could use prayers for a quick recovery for the WHOLE family. I will be so thankful when this is done! The house is SUCH a mess and I haven't cooked in days. At least we're so miserable we generally don't care about it! :)
We'll keep everyone updated when we find out more!
Sadly we had appointments at MD Anderson this morning, including a bone marrow aspiration for Josh. If you remember Josh does not want to do the test again without sedation, and they won't sedate if you are sick. So we sadly had to cancel. Which, really, I'm glad cause the last thing I would want to do is go hang out for hours around people with no immune systems.
Of course when we talked to them they told us they wanted us to bring him into the ER to get checked out. Evidently that is their standard care for people with leukemia with a fever. I explained how this is obviously a virus the whole family has, so they then told us to go see a local doc. Well that just seems silly, cause we still have to pay out of pocket for that, and for what? For them to say he has a virus? And they wouldn't even know what to be concerned about for a patient with CML. It just seems silly. Obviously if he gets worse or whatever we will take him in, but for now I'm not worried about it.
But of course we have had a mess rescheduling. Dr. Quintas is out of town next week, and well, we just still haven't gotten it all figured out.
This will be the first time in six months that we have gone longer than 4 weeks without bloodwork! Scary!! We could use prayers for a quick recovery for the WHOLE family. I will be so thankful when this is done! The house is SUCH a mess and I haven't cooked in days. At least we're so miserable we generally don't care about it! :)
We'll keep everyone updated when we find out more!
Wednesday, September 7, 2011
Best blood yet!
We are very happy to announce that Josh had his best labs since he was diagnosed! Very excited over here. Everything important was in the normal range this time - even his platelets! They finally inched up to the normal range, so we are thrilled.
This month has been crazy, and Josh experienced his first illness since his CML diagnosis. We weren't sure how he would deal with it - some sort of cold/virus the kids picked up and brought into the house. It seemed to hit him quite a bit harder than the rest of us, but within a week he was feeling better. It was a relief - I was worried it would really knock him down longer than that. He even went into work completely miserable! Which I guess is no good, but I'm saying at least he felt like he could handle that. :)
We have such a weird situation. Exactly a year ago we were in the hospital. A year ago to the day. Of course last year we were delivering our baby girl, and this year we were checking up on Josh's leukemia. To say we never would have dreamed that in a billion years is an understatement. Last night I was laying in bed thinking about how surreal this whole situation is. I remember the night before Annie was born - I was so nervous knowing I was going in for my third cesarean. Nervous that the baby would be OK. Fast forward one year and I was so nervous about this cancer staying suppressed. This was our first appointment where we just really had to maintain healthiness, and I was more than a bit worried about it.
We even had planned a birthday party for Annie this same evening, but at the last minute canceled inviting all our friends. I just had this horrible feeling of "what if the bloodwork comes back bad?" I didn't think I could handle entertaining a whole crowd. Instead we just had family over and had a really fantastic night at home celebrating our precious angel.
I keep thinking about how long it took us to get pregnant with Annie (which didn't happen with the boys) and I just know God brought her at the exact time we needed her. He knew that Josh would experience his very first cancer symptom just minutes after she was born. He knew we would be in a hospital where people would take care of Josh. Not many people can tell you the exact day and time they had their first symptom. But we have it seared into our memory that day Annie Rose was born. Heck, we even have a picture. Of course at the time we had no idea what it meant, and I seriously just thought Josh was being more than a bit of a drama queen. Of course now we know that they exact same repeated symptom is the ONLY reason we made that appointment for the doctor in March. And really is there ANYTHING better in this world than a tiny baby to melt all your cares away? I truly believe she is the best medicine Josh can get!
I'm not sure if we have mentioned it before on this blog, but this cancer has essentially limited us from having any more children. We were told from our very first appointment at MDA that it is important for us to not get pregnant while Josh is taking the chemotherapy. Well, he will be taking it forever. They told us that some patients, after stabilizing, go off the pills for a few months in order to conceive safely. At this point that is just not a risk we are willing to take - it is not as if we don't have kids yet, which is probably the only thing that would be worthy of that risk.
On the other hand, it has also put an end to our dream of adopting. It would be very difficult for us to get past the physical health part of qualifying - they are looking for a doctor to say that you "have a normal life expectancy." When we ask the docs about this they say they don't know what Josh's is (since he is so young and the drugs are so new). And even if we could qualify in that manner the financial situation is just not getting any better. Those few dollars we had planned on saving specifically for adoption are now going straight to MDA, and will be for as long as we can see.
I just wanted to explain this so people will understand why Annie is so precious to us. We know she will be our last baby, even though our hearts long for more. And our hearts break for those sweet babies that are waiting for forever families, knowing that we will not be able to bring one home. So please excuse our sappy lovefest we have when discussing our baby girl!
So to sum it up we spent the day giving thanks for Josh's continued improvement and for our little girl. Two amazing things worth celebrating, don't ya think? Next up for Josh is another round of bone marrow testing at the beginning of October. Please join with us in praying for a complete cytogenetic response!
This month has been crazy, and Josh experienced his first illness since his CML diagnosis. We weren't sure how he would deal with it - some sort of cold/virus the kids picked up and brought into the house. It seemed to hit him quite a bit harder than the rest of us, but within a week he was feeling better. It was a relief - I was worried it would really knock him down longer than that. He even went into work completely miserable! Which I guess is no good, but I'm saying at least he felt like he could handle that. :)
We have such a weird situation. Exactly a year ago we were in the hospital. A year ago to the day. Of course last year we were delivering our baby girl, and this year we were checking up on Josh's leukemia. To say we never would have dreamed that in a billion years is an understatement. Last night I was laying in bed thinking about how surreal this whole situation is. I remember the night before Annie was born - I was so nervous knowing I was going in for my third cesarean. Nervous that the baby would be OK. Fast forward one year and I was so nervous about this cancer staying suppressed. This was our first appointment where we just really had to maintain healthiness, and I was more than a bit worried about it.
We even had planned a birthday party for Annie this same evening, but at the last minute canceled inviting all our friends. I just had this horrible feeling of "what if the bloodwork comes back bad?" I didn't think I could handle entertaining a whole crowd. Instead we just had family over and had a really fantastic night at home celebrating our precious angel.
I keep thinking about how long it took us to get pregnant with Annie (which didn't happen with the boys) and I just know God brought her at the exact time we needed her. He knew that Josh would experience his very first cancer symptom just minutes after she was born. He knew we would be in a hospital where people would take care of Josh. Not many people can tell you the exact day and time they had their first symptom. But we have it seared into our memory that day Annie Rose was born. Heck, we even have a picture. Of course at the time we had no idea what it meant, and I seriously just thought Josh was being more than a bit of a drama queen. Of course now we know that they exact same repeated symptom is the ONLY reason we made that appointment for the doctor in March. And really is there ANYTHING better in this world than a tiny baby to melt all your cares away? I truly believe she is the best medicine Josh can get!
I'm not sure if we have mentioned it before on this blog, but this cancer has essentially limited us from having any more children. We were told from our very first appointment at MDA that it is important for us to not get pregnant while Josh is taking the chemotherapy. Well, he will be taking it forever. They told us that some patients, after stabilizing, go off the pills for a few months in order to conceive safely. At this point that is just not a risk we are willing to take - it is not as if we don't have kids yet, which is probably the only thing that would be worthy of that risk.
On the other hand, it has also put an end to our dream of adopting. It would be very difficult for us to get past the physical health part of qualifying - they are looking for a doctor to say that you "have a normal life expectancy." When we ask the docs about this they say they don't know what Josh's is (since he is so young and the drugs are so new). And even if we could qualify in that manner the financial situation is just not getting any better. Those few dollars we had planned on saving specifically for adoption are now going straight to MDA, and will be for as long as we can see.
I just wanted to explain this so people will understand why Annie is so precious to us. We know she will be our last baby, even though our hearts long for more. And our hearts break for those sweet babies that are waiting for forever families, knowing that we will not be able to bring one home. So please excuse our sappy lovefest we have when discussing our baby girl!
So to sum it up we spent the day giving thanks for Josh's continued improvement and for our little girl. Two amazing things worth celebrating, don't ya think? Next up for Josh is another round of bone marrow testing at the beginning of October. Please join with us in praying for a complete cytogenetic response!
Friday, August 5, 2011
An upward trend?!
Can you believe it has been a month already since Josh's last bone marrow test? We were surprised as well! We went for bloodwork and review this Wednesday, and we were please with the results. Remember that Josh's platelets had been falling? Well they were up a bit this month, so that was very exciting for us. Hopefully that is the start of a trend and next month maybe they will be back up to the normal range. They were 113 this week and normal is 140-440 for those of you interested in numbers. His white blood cell count was also a bit higher this time, and I consider that good. He was at the bottom of the normal range, and there is the possibility of going too low, so we were happy to see it right in the midrange of normal.
Other than that things have been fine. They got the other test results from the bone marrow back, but they told us they didn't have a good sample to test with. They were only able to test a small portion of it, but what they did test looked great. They were looking for the Philadelphia chromosome and they didn't find any, so that is good. It would have been nice to have a complete test, though! They said for some reason sometimes the cultures just don't grow like they are supposed to and there was no real reason for it.
Please pray for Joshua to have continued rest! Besides the crazy rash and itching it is his only other major complaint. He has started taking his meds at a different time to hopefully enable him to get some coffee to drink on the way home. He was taking them at 9:30 AM and PM, but now he has switched to taking them as soon as he wakes in the evening around 5 and then again at 5AM. That is a little tricky cause he has to take them at work, and his desk is so very busy it can be hard to time things like that. But we did splurge and get him a fancy watch that he can set alarms on and that has been helping (you know, when he remembers to put it on and bring it with him).
And ya'll, this is just from me, but please pray for him to not feel so burdened all the responsibilities he has. He has the weight of the world on his shoulders, and then to add in a difficult job, managing leukemia, and our ever dwindling finances, well, it has been hard. Please pray peace for him and that he can learn to truly relax when he has the opportunity. He took a couple of vacation days and we spent them together at the state homeschool convention and it was a really nice escape. And it really helped for us to be reminded of why we do what we do! I know it encouraged both of us, so we're praying that this encouragement pushes us through this next hard period. We appreciate your prayers joining ours! :) Thanks, friends!
Other than that things have been fine. They got the other test results from the bone marrow back, but they told us they didn't have a good sample to test with. They were only able to test a small portion of it, but what they did test looked great. They were looking for the Philadelphia chromosome and they didn't find any, so that is good. It would have been nice to have a complete test, though! They said for some reason sometimes the cultures just don't grow like they are supposed to and there was no real reason for it.
Please pray for Joshua to have continued rest! Besides the crazy rash and itching it is his only other major complaint. He has started taking his meds at a different time to hopefully enable him to get some coffee to drink on the way home. He was taking them at 9:30 AM and PM, but now he has switched to taking them as soon as he wakes in the evening around 5 and then again at 5AM. That is a little tricky cause he has to take them at work, and his desk is so very busy it can be hard to time things like that. But we did splurge and get him a fancy watch that he can set alarms on and that has been helping (you know, when he remembers to put it on and bring it with him).
And ya'll, this is just from me, but please pray for him to not feel so burdened all the responsibilities he has. He has the weight of the world on his shoulders, and then to add in a difficult job, managing leukemia, and our ever dwindling finances, well, it has been hard. Please pray peace for him and that he can learn to truly relax when he has the opportunity. He took a couple of vacation days and we spent them together at the state homeschool convention and it was a really nice escape. And it really helped for us to be reminded of why we do what we do! I know it encouraged both of us, so we're praying that this encouragement pushes us through this next hard period. We appreciate your prayers joining ours! :) Thanks, friends!
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