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:

•  April 2011 -     91.43 %
•  July 2011 -         5.19 %
• October 2011 -     .09 %

Great, right?  The goal is to get down to 0!!  So incredibly close, right?  It is super encouraging! 

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!!

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:

You may take your other medications as you normally do, but only with small sips of water to swallow
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!

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!  :)

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!

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!

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!

Some bone marrow results....

So our lovely trial nurse emailed us earlier this week to let us know that they had some partial test results!  Yes, early!  They completed part of the test in house and sent the other part to the Mayo Clinic to be processed, so we will have to wait on those a bit longer.

The news is GOOD!  Josh's PCR test came back with good results.  Obviously we are looking for a number of 0.  But that is going to take time to achieve if we ever hit it.   But until they see zero they are looking for a 3-log reduction as the goal.  So I was right in reading Josh's chart for his original PCR test - he had 91.43%.   So to lay out the numbers....

91.43     - 0 log reduction (base count)

9.143    - 1 log reduction

.9143   -  2 log reduction

.09143  - 3 log reduction

So this most recent test result came back with a result of 5.19.  So you can see we got a 1 log reduction, but we've got quite a ways to go to hit 3 log, if I am figuring this whole thing out correctly.  I know people see these results and think that means everything is completely hunky dory, but I just have to keep it in perspective that yes, things got better, but he has a long way to go. I found this transcript of Dr. Druker explaining the meaning of these tests.  I thought it might help others cause he explains it really well, so here is the important part (warning, this is long and the formatting copied poorly!)....

How do we monitor CML?
Clearly, we can monitor blood counts. We can also test for the presence of the abnormal chromosome that marks leukemia cells, the Philadelphia chromosome.
We can look for the Philadelphia chromosome either through cytogenetics, it can be done on bone marrow, or we’ll look at 20 dividing cells.
We can also use FISH (fluorescence in situ hybridization), either on blood or bone marrow, where we look at 200 cells, either dividing or non-dividing, or a polymerase chain reaction (PCR) where we can look for traces of leukemia in as many as a million cells.
So, let’s talk about this in a slightly different way, and let’s think about this in terms of numbers of leukemia cells. The ideal would be not to have any leukemia cells.
If you didn’t have any leukemia cells, you don’t have leukemia, and if we can ever get you to that point, we can say that you’re cured.
At diagnosis, most people with CML will have a white count of 50,000 to 500,000. A normal white count should be 5,000 to 10,000.
That’s anywhere between 5 to 50 times the upper limit of normal. In a normal bone marrow, there are 1 trillion cells.
Now that sounds like a big number, but that’s how many normal cells are in a normal bone marrow. If the bone marrow’s been taken over by leukemia, you have as many as 1 trillion leukemia cells. That may sound like a huge number, but that’s how many cells a normal bone marrow has, and now your bone marrow has leukemia.
The first goal of therapy is to get your white count down to normal. If you have a normal white count, we would call that a complete hematologic response. So a complete hematologic response simply means a normal white blood count.
Now the problem with that is that we really don’t know how much lower you’ve gone, how close you are to zero. We’ve only reduced the number of leukemia cells by maybe 10-fold, perhaps down only to 100 billion leukemia cells. So we’ve got to do much more sensitive testing, and this is where cytogenetics comes in.
This looks for the abnormal chromosome. This abnormal chromosome, which marks the leukemia cells, comes about because 2 chromosomes, chromosomes 9 and 22, exchange pieces, and you end up with a short chromosome 22, which is called the Philadelphia chromosome, and a longer chromosome 9.
It’s this short Philadelphia chromosome that we can look for in the bone marrow that marks leukemia cells and is actually what causes leukemia. This is what we look for in cytogenetics. We look for the presence of the Philadelphia chromosome.
As I mentioned, we look at 20 cells. Typically, when someone is diagnosed, all 20 of their bone marrow cells will have the Philadelphia chromosome. So it’ll be 20 out of 20 Philadelphia chromosome positive.
Now when somebody has a normal white blood count, what if they still were 20 out of 20 Philadelphia chromosome positive?
What that tells us is that most of their blood cells are still leukemic despite having a normal white blood count, and our estimates would be that that patient has 100 billion leukemia cells left.
Now, the reality is it’s better to have a normal white count than a white count of 500,000, but you could still be left with a lot of leukemia cells.
So the next goal of therapy would be to try to get somebody down to 0 out of 20 Philadelphia chromosome positive, also called Philadelphia chromosome negative, or a complete cytogenetic response. All those terms mean the same thing. It just means we’ve gotten you to Philadelphia chromosome negative.
In reality, we’ve only looked at 20 cells. A normal bone marrow has a trillion. We’ve just looked at a drop in the bucket. We’ve got to get much more sensitive tests if we’re going to figure out how well controlled somebody’s disease is.
Again, however, it’s far better to be Philadelphia chromosome negative than Philadelphia chromosome positive. So we need a more sensitive test known as PCR.
PCR testing is, for those of you that follow some of these crime scene dramas, the cops go to the scene of the crime, they scrape a piece of blood and figure out who did it. We can sort of do the same thing with a test tube, a vial of blood.
We can look for a trace of leukemia in that vial of blood. So with PCR testing, we can amplify a signal, and we can see 1 leukemia cell in between 1,000 to 1 million normal cells.
Now this PCR testing can be qualitative. It simply gives you a positive or negative. It tells you if this Philadelphia chromosome abnormality, which we’ll now call BCR-ABL, is present or not present. We can also do a quantitative test where it gives us an estimate of the number of leukemia cells.
So if we put this back on our graph, the reality is that we now can go from 1 trillion cells down to 1 million leukemia cells, but we have to make a couple of points here.
First, if you do an equivalence ratio, 1 in 1 million is equivalent to 1 million in 1 trillion. So PCR undetectable could still mean you have 1 million leukemia cells left. It doesn’t mean cured, and it also means that we can’t do anything more sensitive to look for lower levels of leukemia.
So PCR undetectable or PCR negative doesn’t mean cured. It just means the lowest level we can identify.
The second point is that about 80% of patients treated with imatinib will be between Philadelphia chromosome negative or complete cytogenetic response and PCR undetectable.
Most people will be there. The only way we can monitor patients in this range, where the majority of people are, is through PCR testing.
So let’s look at this graph, looking at PCR values, and here I’ve taken what’s now known, on the left-hand side, something called the International Scale where newly diagnosed patients arbitrarily would have a value of 100, and I’ve done 10-fold reductions, and you can see on the very far right we have a 3-log reduction. That just means 1,000-fold reduction in the number of leukemia cells, and that has some prognostic importance.
We can make a couple of other points.
First, I’ve shown this on a quantitative scale, meaning the quantitative PCR that gives us a number. If we did a qualitative PCRthat just said present or absent, all of these values would be positive. You couldn’t tell the difference between a newly diagnosed patient who would have a value of 100 and a very, very well-controlled patient, who would have a value of 1, which would likely be a complete cytogenetic response, 0.1 or even lower. So the reality is this quantitative PCR gives us a far better insight into how well controlled people’s leukemia is.
Second, clearly quantitative monitoring is preferred. It gives us an indication of where people are. The problem, though, is that different labs will give you different results. If you come to my hospital in Oregon or Dr. Neil Shah’s hospital in San Francisco, we’ll give you different results. We are working on standardization so that you can go anywhere in the world and have the same testing done and the same results done, but unfortunately we don’t yet have a standardized test. Until then, my
recommendation is that you send your samples to the same lab so that you can follow a trend.
For those of you who are interested, Novartis has set up a program called the CML Alliance™ and they currently use 2 labs. If you’re currently not being done at one of these labs, I would urge you to think about working with your physician through the CML Alliance, to have your testing done routinely at a standardized testing laboratory.
A third point about monitoring is that negative results also depend on the quality of the lab and the quality of the sample. The sensitivities vary from lab to lab, from 1 in 1,000 to 1 in 1 million, and so negative at 1 in 1,000 is not as good as negative at 1 in 1 million. Different labs, again, will have different results.
What do I consider a good response?
There’s a 3-log reduction. Any time you get it, it is a great place to be. (That’s me – Harvey)
Six months, 1 year, 2 years, that’s a great place to be.
The risk of relapse is a half percent per year, and it decreases over time. So at a half percent per year, that means that at 10 years, 5% of people in that category would relapse.
With a complete cytogenetic response to Philadelphia chromosome negative, there is a 2% risk of relapse per year, and by year 4 of maintaining that response, it declines to a half percent per year. So my view is that a stable complete cytogenetic response is equal to this 3-log reduction.

So if you are still reading this then I am way impressed.  It is pretty sad that I now find all this stuff interesting!  It feels good, though, to know what we are up against.  We are feeling encouraged with these results!  We will keep everyone updated when we get the rest of the results next week. We're still waiting on the cytogenetics to come back, which will tell us about those pesky chromosomes!

Twelve years!

It's so hard to imagine, but today is our twelve year anniversary!  Craziness, right?  I know without a doubt that twelve years ago we couldn't even imagine what was in store for us in the coming years.  But I do know that all my dreams came true when I married this man - the one and only person that God created for me to do life with. 

We did not have a wedding, cause there were no funds for it.  For a while we were engaged and just kind of thought that somehow, magically, a wedding would happen.  But when we realized that was out of the picture we picked a random day a few weeks away and made an appointment with the Justice of the Peace in College Station.  Not exactly the most romantic thing ever, but I am over it now! ;)  Back then I was pretty sad about missing out on the wedding hoopla.  We even had dreams of renewing our vows with an actual wedding 5 or 10 years down the road.  But when we hit those milestones it was already SO unimportant to me it didn't even cross my mind.  :)

Josh and I have never had the funds for extravagant gifts, and today is no exception to that.  I can honestly say the best gift I could have been given is the two months Josh was home with us after his diagnosis.  It was so amazingly nice to get to spend so much time with him.  All day, all night.  Every shopping trip, errand, and playdate.  As he was getting ready to go back to work last month we discussed that this was the most time we have spent together in the last 12 years.  It reminded me very much of the first few months after we started dating my freshman year at A&M.  We were so hopelessly head over heals we spent every single moment together, much to the detriment of our grades and other friendships.  It was an unexpected gift to get to have that much time together again, which we probably won't ever have again while we are young.

I have loved Josh since I was 16 years old and we met working at Oshman's Super Sports.  I got that job because I figured it was a good place to meet guys, and I was right!  I liked 2 guys there - Josh and the boy I dubbed "fine guy in bikes."  Luckily Josh won out!  I was pretty persistent - even though I told him I liked him the next year, he told me he didn't feel the same way.  But I wasn't to be turned away - I followed him to A&M.  Luckily I was able to convince Corrie to go with me so I didn't look like too much of a stalker! ;)  And I snared him and he didn't even know what happened!!  LOL

Anyways, I love thinking about how we fell in love and how wonderful it was, and it always makes me realize that it still is wonderful.  He is truly the only person that would put up with me for this long, and I am well aware that I am not an easy person to love.  He talks me down when I get worked up about things and knocks the sense into me that I almost always need.  He even makes me laugh when I'm furiously angry, and he's the only person who can get away with such shenanigans.  I got him a father's day card that explains exactly how I feel.  It reads, "I love you, I love us, I love our family."  Perfectly said.

More waiting!! (of course!)

So, after all our anticipation, we are still waiting on results.  And instead of getting them on Friday like we thought might happen they told us it will be 2-3 weeks!  Isn't that craziness!?!

When you have appointments at MDACC they schedule each little thing out for you and give you this printed schedule each day.  Cause you end up roaming all over the huge complex just to get everything done.  So you can print it at home or you can go to the front desk and have a nurse print it for you when you get there.  So I just figured we would have the nurse do it, cause I didn't want to mess with it last night.  And can you imagine that we were there so early there wasn't a single person at any of the desks yet?  So I had to call my mom and guide her through the process of finding it online just so we knew what floor and desk to go to!  I guess I learned my lesson about being prepared! :)

So Josh gave blood, which was nice and easy.  And then we made our way to the other side of the complex for the BMA.  If you remember Josh was REALLY worked up about this, even though it would be with sedation this time.  He couldn't eat after midnight, which if a big deal for Joshua - I have never met a person so intent on eating immediately when he wakes.  He drives me crazy with it at times!  So we go there at 7:00 and they told us that they had to change the times and he wouldn't be able to go in till 8:00.  So we waited and waited and finally they took us in and got him all hooked up to the IV and all the other gadgets.  So she tells us they will be giving him Propofol, and it seemed familiar but I was so intent on listening to her I didn't really think much about it till later in the waiting room.  Does it sound familiar to you?  If you are thinking Michael Jackson then give yourself a gold star cause you are right!  Josh now says he completely understands why MJ liked it so much!  LOL 

He said that the anesthesiologist told him "you'll feel some pain in your hand and then the next thing you'll remember is me saying Josh, Josh, wake up".  And sure enough he says that is exactly how it happened!  They wheeled him out in a wheelchair and I just wish I had my camera with me cause he just looked GONE!  So very confused and drunk looking!  And he just kept talking to me with slurred speech - it was really funny.  He kept talking about giving the thumbs up and then while we were waiting for the next appointment he likened himself to a robot in the wheelchair.  He was cracking me up!  And he wasn't the slightest bit concerned about eating for quite some time after the test.  I'm really tickled with his goofiness after the procedure! He says it was absolutely perfect and it is the only way he will do the bone marrow tests from now on.  I am so glad!  Especially since he will have to have another one in October.

The nurse that processed Josh for the BMA was so funny - the discharge instructions are pretty normal, like not operating heavy machinery or drinking alcohol.  But then they stress don't make any major purchases or important decisions.  She did clarify though, to ignore those instructions if he felt like buying me some jewelry today! :)

We waited for an hour for the five minute EKG and finally gave up and made our way upstairs to see Dr. Quintas.  And we were able to visit for a long time with the super sweet trial nurse, whom we love.  So that was really nice.  Only saw Dr. Quintas for a few minutes, but he said Josh is doing great.  Remember there are three responses they are looking for?  You can read about them here on this site.  The first response is a hematologic response, which he has achieved.  His platelets did fall some more in the last month, though.  They were at 99 today and normal is considered 140-440.  He said that his low count is from the nilotonib, and not from the leukemia, so they are not worried about it.  They did say they will keep an eye on it but that it is very normal for platelets to fall in the first few months and then level out as your body gets used to the drugs.

The next response is the cytogenetic response, and he is hoping that Josh has already hit that.  They won't know this until the results from the BMA are in.  You can see that they want this within 6 months, but he says that being on such a high dose of the stronger drug should bring that response already.  So we are very hopeful that is what he will get!  He did stress over and over that three months is extremely early into treatment, and that the treatment of CML takes time.  If he is doing over the top well he would already have a molecular response, so we will anxiously await those results as well.

So basically the responses are just a blood response, then a chromosomal response, and then finally a molecular response.  Of course these are all tied to the fact that he takes his chemo every single day.  If he were to stop taking it at any point, even ten years from now the leukemia would come back.  They did stress today that mutations are very rare which I think made Josh feel a lot better.  It is just scary, though, cause we know that it does happen.  I was asking Dr. Quintas about specific numbers that we should see with these results and he gave me some figures but then told me to not really worry about it.  I had to look at him straight in the eyes and inform him that I WOULD be worrying about it.  This is my man we're talking about!!  Dr. Quintas made us laugh cause he then made some sort of joke about how he didn't know how Josh could forget his pills with a wife like me!  ha ha ha  He has me all figured out in a few short visits!  I like it!

So all in all, today went well.  As crazy as MDACC makes me, I really love Josh's trial nurse and his doctor.  It is always nice to actually get to see them when we go in.  We did get a refill of meds, so we are good to go for the next three months.  Josh will go in monthly for blood tests until October when we will once again have bone marrow tests.  We will let everyone know when we get the test results back.  Isn't it just mean to make us wait that long??!  :)

Getting ready!!

So tomorrow is the big day!!!  Our first appointment is bright and early at 6:15!  Seriously already feel like crying just thinking about getting up early enough to get there on time!

Josh has a blood draw, bone marrow aspiration w/sedation, EKG, and a visit with the doctor.  So I'm fairly certain that will take ALL day, even though we are starting at the crack of dawn.

Hopefully he will get another prescription filled while we are there to restock his meds.  It is so strange to me but you have to keep the bottles for the trial and return them to the trial nurse.  Isn't that weird?  I snapped a pic of Josh's before we packed them up to go.  It is crazy to think that those few bottles of pills are what is keeping him alive!

And check out this other part - I think it is so funny that they treat it as though it is so very dangerous and you must dispose of properly.  So glad Josh is swallowing four of these daily! ;)  If we walk out with another bag of pills I will once again feel like we are stealing - I am still so amazed that they are giving them to us for free! 





And this is what the pills actually look like.  The NVR is for Novaris, the manufacturer.  And TKI is for tyrosine kinase inhibitor - the class of drug that Tasigna is. 






And the last thing we are returning is his medication diary, where he has recorded the time of every single pill he has taken over the last three months.  We keep it conveniently attached to the fridge!

Josh just got out of the shower since he won't be able to bathe for 2 days after his BMA and we're packing up the bag for the hospital right now.  We're feeling quite anxious about tomorrow - Josh mostly for the bone marrow test itself, and me mostly for the outcome.  We never got the situation with the nurses worked out about when we will get the results, so we're not even certain we will have anything to report tomorrow at all.  Josh's job allowed him to take a vacation day Thursday night, so we are pleased with that.  He didn't want to have to sit up in an uncomfortable chair all night with the pain he will have in his back from the tests.  That also allows us to meet with the doctors again on Friday if need be.

It seems that the way that they measure your success with the meds is through a test called a PCR.  If I am reading his test results correctly from the first test, he had 91.43% as his PCR results.  The goal is to get as close to 0% as possible.  Want to see why we are a bit confused?  Here is a copy of just the top quarter of this test result page....

REAL TIME BCR INTERP PB                          
BCR-ABL qRT-PCR:

Coexpression of b3a2 and b2a2 BCR-ABL fusion transcripts is detected by
real-time PCR.

The percentage of BCR-ABL to ABL transcripts is 91.43.

COMMENT: Quantitative real-time PCR analysis performed on RNA from this
sample for the BCR-ABL fusion transcript resulting from the t(9;22) in
leukemia. BCR-ABL and ABL transcript levels are detected simultaneously
and quantitative results expressed as the ratio of BCR-ABL to ABL levels.
This ratio may vary up to one-log because of methodological reasons.  As
of 8/2/07, the assay has shifted to a new platform.

And the font is half as large as the one here, and then there are about 40 more pages of test results from that same day.  See why we are confused?  I will be glad to see the doctor tomorrow and get to talk to someone about all this!

We'll post again tomorrow night after we have time to process everything that happens tomorrows.  Prayers are appreciated - especially for Josh to be calm for his procedure.  Thanks guys!

Sunday Scripture!

I am a dreamer.  Nearly every single night I have long, detailed dreams.  About once a month I dream that I did not actually graduate from A&M and my degree is taken away from me.  And it seriously takes me 2-3 minutes when I wake up to realize that it is not true.  And I feel such a sense of relief.  Now I also have GREAT dreams that take me a few minutes to realize are not true.  And when it hits me I feel so horribly sad.  But last night I had an amazing dream - all about my sweet Joshua.  And I can't remember the details, but it was just this overwhelming, wonderful feeling that he loves me and I love him.  Just pure joy.  And when I woke up I laid there and realized I was dreaming and started to feel sad for a second, and then it hit me that my dream was true!!!  I know it sounds so silly but it was really just the most fantastic feeling in the world.  And it just made me feel so thankful, before my feet ever touched the floor.  God has just lavished me with His love through this man. So thankful!!

Ephesians 5:19-20

¹⁹ speaking to one another with psalms, hymns, and songs from the Spirit. Sing and make music from your heart to the Lord, ²⁰ always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.

And amazingly this verse lead right into the other thing I wanted to share today - a song Josh and I are loving right now.  It is an old hymn that Casting Crowns has on their newest album.  It is AMAZING!!!  I could just listen to it over and over again, and I suggest you do too! :)  I love how it shows Christ's whole life - living, dying, buried, rising, and the glorious day when He comes again. I'm so thankful for this amazing plan God has for saving us!




GLORIOUS DAY
Artist: CASTING CROWNS.
Album: Until the Whole World Hears


One day when Heaven was filled with His praises
One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me

One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now He’s ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again

One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One, bringing
My Savior, Jesus, is mine

Oh, glorious day

3 Month Cancerversary!

I know when most people celebrate anniversaries they also say "I can't believe it has been that long already!".  But you know, the last three months have been the LONGEST of our lives.  It seriously feels like Josh has had cancer for a year at least.  But nope, just three months to the day.  At least he did it on April Fools Day so we have an easy date to remember! ;)

We have kind of really built up this 3 month check in, cause this is when we finally get to meet with the doctor again to check in.  Josh goes for his bone marrow tests on Wednesday, and he is pretty worked up about it.  I tried to talk about it in the car yesterday and he was quick to cut me off cause he just does not want to think about it at all.  My poor guy.  I know how worked up I got about all three c-sections (since I knew about them in advance) so while I don't know the physical pain of bone marrow testing, I completely understand the mental aspect of preparing for something of the sort.  We're also not even sure they will have the results at the appointment next week, so we could be getting worked up over nothing.  I can't imagine they will process the bone marrow tests before then. Although the PCR test can be done with blood, so perhaps they will have that test result available.

We are having a bit of confusion about whether or now Josh needs to go in for bloodwork before Wednesday.  I downloaded this pamphlet from MDACC about BMA with sedation and at the end of it there was this highlighted section that said to make sure you have bloodwork done 48 hours before and not the day of or results will be delayed.  Not really sure if that is accurate for Josh's situation, but we emailed the Leukemia center to find out.  Still waiting on that - hopefully not cause it is a long trip for just a ten minute blood draw!

Things have been pretty intense emotionally this last week or so preparing for next week's visit.  All the what ifs and concerns just never seem to leave my brain.  I think the hardest part is that next week we still won't really have a clear picture if the meds are working.  CML is so crazy cause when you look at the early test results of people who three years down the road are doing well, they often look exactly the same as the people who are dead three years down the road.  The percentages and reductions are so very drastic at first it always seems like good news, but in reality just .1% on some of these tests is the difference between someone who is responding well and someone who is not. 

We took the kids to the beach this week and it was a nice diversion.  But at the same time I couldn't help but to watch Josh play with the kids and wonder how many more times we will get to do this together.  My brain has been doing that with nearly everything we do lately.  CML has given us this urgent desire to spend every single moment we can with the people that matter most to us.  We really enjoyed every moment having fun - watching the kids delight in the simple joy of the ocean. 

Everything that has gone on in the last 90 days has really made us ponder those big life questions.  You know, looking at what we do with our time.  How we live our life.  What we choose to do.  What we need to do to feel satisfied and fulfilled.  It is definitely not something that was on my radar a few months ago, at least not seriously.  We definitely had some very superficial answers to those questions because they weren't really a concern for us.  You know, it seemed like we just had so much time.  The realization that time is not guaranteed has been extremely difficult to stomach.  It was tough 90 days ago and it is still tough today.  We have been praying for God's direction in many areas that used to seem so very cut and dry.

I don't even know how this post got so down - just really trying to keep it real and honestly portray what is going on with us right now.  I have been asked why I am doing this blog, and really it is help me.  I don't know why but it just makes me feel better to get this all out "on paper".  And my hope is that someone else who is going through this exact situation can find some sense of comfort in what I have written.  Even if it is just to know that somebody else has been through the exact same emotions they have.  I have already gotten a couple of amazing emails from strangers dealing with CMl, and it has definitely made even the few posts I have written worth while.

And I know this is a blog about Josh and I sure seem to write about myself a lot.  You can rest assured, though, that when I'm writing about what I am going through, Josh is also experiencing.  We are so very similar with our emotions and reactions to things I often find myself saying to him, "I know this is crazy, but lately I have been feeling...." only to have him respond "I was just thinking the same thing last night."  So peeking into my brain gives you a peek into his as well! :)  Happy Three Month Cancerversary, honey!

Upset tummies!

So this week has ALL been about puking.  It has been craziness at the Marlatt house!  Annie was the first one to start puking, and if you have seen a teeny tiny baby puke you know it is seriously one of the saddest things you will ever see!  Then I caught it, then Wyatt, and finally Josh.  Noah J is the only one who has made it through completely well!

So Josh woke up yesterday afternoon feeling sick.  He's still asleep right now, but I'm hoping that when he gets up he will feel better.  Luckily he hasn't puked any of his Tasigna, which was his main concern.  One thing he has noticed is that ALL of the side effects he usually has from the Tasigna have been very exaggerated.  Lots and lots of muscle cramps and aches and his knee was hurting pretty badly last night.  Praying that today he fully recovers!  Even though it is raining I would love to get out of the house!  4 days of not leaving the house could be more than I can take. :)

On an unrelated note, we wanted to share a link to a family that we know from our homeschool co-op.  They are adopting not one, but three special needs kids from Eastern Europe and are trying to raise the last bit of funds they need to complete the adoptions.  So they are having a raffle for an iPad2 (or a $500 Apple gift card).  Anything that you can give to help will make a huge difference.  We have been supremely blessed by the monetary generosity of our friends, family, and strangers these last few months.   Praying the same thing for the Johnson family!  All you have to do is click the link and then click on the "ChipIn!"  button and the money goes straight to their family.  You can see where all the money is going on the left hand side of their blog.  They just got back last week but are already heading over again for a court date tomorrow.  And then it appears that these kids might be home in as short as a month.  Please pray about what you can give to help these precious babies!

Happy Father's Day!

Happy Father's Day to all the dad's out there!  We had quite a lovely Father's Day celebration here at our house, but we celebrated on Wednesday.  The kids have been keeping a secret for so very long, and they were pumped to finally let the cat out of the bag.

So did you know that Josh is obsessed with the Dad Life video?  Well so are the boys.  They seriously have most of it memorized.



Don't you just love it?  There is not much funnier than Noah saying, "24/7, 365, check me!"  And Wyatt loves to say "Hold up!  Is that a weed in my fescue?  Aw naw, round up to the rescue!"  Josh loves "Keep your peanut butter hands off my 50 inch Vizio."  And together their favorite line is "hydrangeas, begonias, crape myrtles, ornamental turtle!!!"  So they figured out that Daddy already has hydrangeas, begonias and crape myrtles, but you know he doesn't have an ornamental turtle.  SO that is what we decided to get Josh for Father's Day.

I know some of you are going, really?  A concrete turtle?  Yup.  That's how we roll in the Marlatt house - we tend to never buy expensive gifts for each other, especially things that are "from the kids".   And Joshua loved it!!!  It made me and the kids so happy to see how tickled he was with it.  SO now we have a lovely, tacky turtle greeting all who enter our home! I took the boys out to Frazier's and they picked out this turtle that Wyatt thinks should be named "Microwave Cute."  Not really sure what that means.  Then we painted him these lovely colors and I was actually impressed with the kids.  They did it all by themselves and it didn't come out too bad.  Wyatt specifically painted some eyebrows on the turtle, which you know all turtles need.

He only got to sleep in a little cause he had to get up to take his pills, so the kids were happy they got to bring him the turtle in bed!  We took Joshua out to breakfast at Le Peep and then just spent the rest of the day together.  I had plans to make his favorite dinner but we ran out of time and ended up using our free meal coupons at Texas Roadhouse, so nobody was too sad.  So he got his favorite meal tonight instead, so it was kind of like getting an extra meal.  We finished celebrating the day with Josh's favorite fair treat - Fried Oreos!  A couple of years ago we went to the State Fair and we walked for what seems like miles just so Josh could find the fried oreos booth.  And of course he loved them just as much as he thought he would!  I had never made them before but figured it would be easy enough and would be a great, quick surprise.  I was shocked how easy it was and how delish they were!  The kids wouldn't eat them, so Josh got more than his full share.  :)

We are so very thankful to have Joshua in our lives.  He really is the most amazing Daddy.  Always sacrificing so that the rest of the family is happy and taken care of.  He's not one of those dads that is on his phone all the time, out playing golf, or watching sports on TV.  Instead he's making milk cups, washing bottles, changing diapers, playing countless games, and doing LOTS of wrestling.  He really puts his kids #1 in his life.  And that is why they love him so!!  So thankful that we got to have a day to honor him.  Love you Joshua!

Poor baby noodle!

Remember how I said the kids are so very aware that something is wrong?  Well tonight we got our first good taste of how worried they are, and it just breaks our hearts.

We had Wii family night tonight, so the kiddos got to stay up late.  And they had no naps, so I guess their emotions were right at the surface cause they were so exhausted.  But at the end of the night right before we tucked them in Wyatt just climbed up in Josh's lap and melted down.  In his sad, sad voice he said, "I want to give you a card cause there is blood in your arm!"  And then he just cried and clung to Josh like he was leaving him or something.  You know to a 4 year old giving someone a card can make everything better. And it is just so very sad that he has no other words to describe what is wrong other than "there is blood in your arm".  Josh has been continually poked in the arms over the last 2 months, but he is careful to remove the bandages before we get home, so I'm not really sure why this aspect has upset Wyatt.  And why out of the blue, when we having been discussing it or even been to the doctor in the last six days.  And that is almost the saddest part - evidently this in on his mind a lot.

We did our best to comfort him, and he was finally calmed down cause I took him to the school room and let him write in Josh's father's day card.  We decided we are going to celebrate Father's Day tomorrow, so he can give the card to Josh first thing in the morning.  That works out best for us anyways, since Josh works Sundays and couldn't really spend the day with us anyways. 

So please pray for our little Wy noodle - that his heart is protected from all that is going on.  That he isn't afraid.  And that he is able to talk to us when he is worried.  It is so hard for him to verbalize this kind of stuff at his age, so he definitely needs prayers in that area.  Thanks, friends!

Sunday Scripture!

So I've been thinking that I would start posting each Sunday with scripture, a hymn, or a song that has been on my heart this week.  Maybe it will help someone else who is dealing with a similar situation.  Or at least let you know another way you can specifically pray for us this week, so you can know what promises we are clinging to.  I figure most weeks will be a simple scripture, but I happen to have a lot to say tonight. :)

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6-7)

 God has also been really laying on my heart how He has provided for us in the past.  The words "don't forget, don't forget, don't forget" have been just repeatedly going through my mind.  Specifically how scared and desperate we were feeling before Josh got his job at UP.  He had just graduated and I was finishing up teaching my 2nd year at a job I was miserable at, and 9 months pregnant.  With no hopes for any job for Josh.  We were barely making it on my teaching salary and I just didn't know how we would ever survive.  So we decided that I would just teach another year and Josh would stay home with Noah until he found a job.  And I was crushed.  Absolutely devastated.  All I have ever wanted to be in this world is a mom and a wife.  To stay home and raise my kids myself.  And that dream was slipping away.  Josh interviewed at UP and they seemed so positive and basically made us think that he had the job.  The devastation we felt when they called to say he didn't get selected was the hardest thing we had been through at that point in our life.  I just remember specifically this one morning on my way to work, just feeling as though nothing could be fixed.  Nothing could get better.  And this song came on the radio.



And I just sat in that car at the stop sign on Cortlandt and just cried out to God.  Begging for Him to lift up my head.  Just feeling this release of pain, just being reminded that he heard even my sighs.  Feeling joy at thinking about how strong His hand is.  And you know, in one instant our world turned around.  And He provided in ways that we never dreamed of.  A month later we received a random call from UP saying they wanted to hire Josh for the next training class, which we didn't even know existed.  And He paved the way for us to get this house even though we didn't have good enough credit for it.  And UP increased the base salary for starting dispatchers a number of times over the first few years he worked there.  All things I never even dreamed could happen. 

I've been listening to this song a lot over the last 2 months.  Trying to let the words soak through to my soul.  And really focusing on the idea of waiting.  Waiting for His time, not mine.  Which brings me back around to Phil. 4:6.  The waiting makes me anxious.  But I'm really trying to hold on tight to this promise, cause I desperately need this peace to guard my heart and my mind.

Through waves and clouds and storms, He gently clears the way
Wait because in His time, so shall this night
Soon end in joy

Daddy has cancer :(

One of the things people ask us about once we start discussing Josh's CML is what we have told the kids.  We really struggled with this decision at first, but have since felt peace with how we are handling it.

When Josh was first diagnosed you can just imagine the mess we were for the first few days.  With all of the crying and sleeplessness we both looked pretty awful, and you know how kids can pick up on that stuff so quickly.  So we decided it was best to tell the kids that Daddy's blood is very sick and he has to see a lot of doctors to help us figure out how to make it better.  They were very content with that answer, but have had a hard time understanding why it is not better yet.  After the first doctor's appointment we were saying grace at dinner and we prayed for Josh's blood.  I remember Wyatt asked us why we would pray for that cause he already went to the doctor, so in his sweet little brain it just was already all better.

Of course we don't want to burden the kids with unnecessary fears or worries, so we have kept it pretty light.  But recently I have been thinking and praying about this more.  When I was a little girl my dad smoked.  And I still remember when I went to school and for the first time I heard someone say that smoking was bad and would kill you if you did it.  I was horrified!!!  And so worried about my sweet daddy (He quit smoking shorty thereafter!  Woo hoo dad!).  But I don't want our kids to ever have that happen.  So we have decided that we want them to be comfortable with the words "cancer" and "leukemia."  Just so they don't associate them completely with sickness.  That they see how Daddy seems the same to them as before, but he has this illness.  So we have just been throwing the words around a bit more lately, like when they got these cute pillows!

At our last appointment we learned that it was Cancer Survivors and Caregivers Week at M.D. Anderson.  Evidently they have all sorts of events and such to celebrate progress in cancer treatments.  So for the Leukemia Center that meant free smoothies and pillows! Do you know Josh loves smoothies?  Well he does - his favorite being from a random smoothie shop in a mall in College Station.  I think we should make a trip up there soon just to have one!  Anyways, I got sidetracked.  So poor Josh couldn't have one cause it was too close to his Tasigna dose.  Aggh!  But they looked good!  LOL!  We also got a little goodie back full of all kinds of little sample stuff that you know I love - chapstick, sanitzer, and a great pen!  You know I love fantastic office supplies!  We were super excited to bring home these pillows for the boys and they just fell absolutely in love with them.  They are teeny tiny and I kinda thought they would just put them on their beds and cuddle with them or something.  Nope - they sleep right on top of that little pillow.  I love it!!  I think they are looking forward to our next MDACC visit cause now they think they will get something every time!  :)

How You Can Help!

So you know we have had tons of people wanting to know how they can help us through this crazy time.  Sadly there is not much to be done for us at this point, but there is something you can do to help people with blood cancer in general.

You can be an advocate for the LLS.  It is so very simple, but can make a big impact.  You simply have to go the the LLS Action Center site and register so you can communicate with legislators about important issues that affect those with blood cancers.  They then list all the "action alerts" that pertain to you.  You just have to click on the spot that says "Click Here to Take Action" and they take you to a customizable email form that is already addressed to your Representative or Senators.  Here is what pulls up for me today:

Act Now - Help Save Funding for Blood Cancer Education Program

Congress is proposing that a program that funds blood cancer education and awareness programs be combined into a grant pool with nearly 30 other chronic diseases. This grant pool is expected to focus primarily on funding disease prevention programs; a huge problem since blood cancers cannot be prevented nor are they screened for early detection. Your urgent help is needed to save funding dedicated for this program! Please act now!

Lots of other alerts that are just as important are also there, ready to be acted on.  So easy, right?

So long MDACC (for a while)!

So today was our last visit to M.D. Anderson for a whole month!  Can you believe it?  Me neither.  Not really sure what we will do with a whole day to ourselves!!  Since Josh has been back to work we have gone to have labs and review done every Wednesday (which you know is his only full day off all week).  That takes at least half the day and we just have not been able to get out and do much with the kids like we normally do.  And since Josh has gone back to work it has made his weekends feel SUPER short.  Yuck! 

So you know how we have been waiting for ALL the blood stuff to come back normal???  Well, it didn't.  Kinda built that up to be exciting.  Sorry.  Actually there was a smidgen of concerning news today.  His white blood count was still good, but his platelets had fallen to below the normal range.  Not by much (just 10) but still enough to have me good and worried.  Joshua too.  If you remember when he started treatment they were 859 above the normal range.  So now he is starting to have the opposite problem!  They told us that if it continues to fall they will have to adjust his dosage of nilotinib.  Which we really don't want for them to do.  The doctor has told us that people have the absolute best response when they take the "highest tolerable dose."  So we're praying it was just a fluke and his platelets jump back up the next time we go.  It will be hard to wait a whole month!!

Speaking of the next appointment, we got confirmation this week that they have changed the bone marrow aspiration to be done with sedation.  Josh is so very relieved.  For a while there he thought he was going to try it the regular way again, but he just couldn't do it.  They haven't told us if the insurance has approved it yet, but I honestly don't think Josh cares! :)  Pretty sure he will make payments on that bill for the next ten years if he has to!

And it's hard to believe but Josh missed another nilotinib dose!!  That makes 2 doses in six days he has forgotten.  He called me the night before last while he was driving to work and told me he forgot to take it!  Now people with an ordinary job would just turn around and get the vital medicine and just be late, but not JP.  He just had to go to work cause he cannot put his job in jeopardy.  So he has put an extra dose in a key chain pill holder and another dose in his lunch kit, just for emergencies.  A few weeks ago we put a dose in the key chain and then let the valet have the keys while we were at MDACC.  So Josh had to have them recall the car, get the pills, and then take the car back.  So very ridiculous, aren't we?!

So after our appointment we came home and picked Annie girl up and turned right back around and drove back to the medical center for her 9 month checkup.  Craziness!!  We called to verify the time of her appointment but they didn't have record of us having one.  So they told us they would work us in.  So we spent hours at MDACC this morning and hours at the pediatrician this afternoon.  Not a great way to spend the weekend.

So being specific, please pray for Joshua's platelets over this next month!  We need for them to return to the normal range and actually stay there this time! :)  Thanks for all the love and support you guys!

Ack!!

Well, folks, it has finally happened!  We were going strong for oh so very long, but we have finally done it.  Josh forgot to take his Tasigna last night!!  I'm laughing about it, but I really do understand that it's not good.  But if you know Josh and I you know that we are just kind of a mess pretty much all the time.  There are not many things in life that we are really consistent about doing.  So I knew it was just a matter of time before we forgot, even with an alarm set to remind us twice each day.

So what could possibly be so important that we would forget Josh's life saving cancer meds?  Well, an email from our bank saying that there was suspicious activity on our debit card!  Isn't that horrible?  Joshua was on the phone for a half hour trying to get that madness all cleared up and we're still not sure that it is.  Sure enough someone stole Josh's debit card info and tried to purchase stuff in New Jersey.  They declined all the transactions I guess cause we were pretty debit card happy yesterday in Houston.  You know, like 3 different transactions all from MDA yesterday.  I'm glad that it triggered some sort an alarm before it got out of control.  Anyways, our minds were so wrapped up with that we just went to bed without a single thought of cancer. 

We didn't even realize until this morning.  I can just picture in my head Josh's blood flowing through every square inch of his body with those evil little cancer genes rejoicing cause just a few more are able to survive today.  All the way down to his pinky toe!  Makes me cringe!!!  Sadly he can't double up for a missed dose or anything, but we will be extra vigilant this week about his pills.  Although I'm nervous right now cause he has to take it at work tonight cause we ate dinner super late due to his nap before work tonight.  He set his alarm on his phone but he doesn't always feel it.  Stresses me out!  Wish he had a normal job where I could just call him and remind him.  Or one where they don't get mad if your cell phone rings.

Oh, and I wanted to say that UP got Josh's paycheck madness all figured out!  As soon as he called they told us they were aware of the mistake and they have already deposited the missing amount into our account.  Praise God!!

An unexpected visit!

So today ended up being an MDACC day!   Last week when Josh was feeling so bad we really weren't sure who to talk to about coming in.  So we emailed 2 different people in 2 different departments.  The trial nurse got back to us immediately and set up an appointment right after we talked to her. So we thought that was that.  Well days later we get an email from Dr. Quintas' nurse who also told us she set up labwork for us today.  So Joshua was supposed to cancel today's appointment.

But he came home yesterday morning and said that he had been very aware of his spleen again all night at work.  It's not painful, but he says it is just that he can feel it inside his body.  So he wanted to go ahead and go in today.

So we did, and everything came back normal!  Well, not everything entirely, but all the important stuff.  I am waiting for the day when his lab work printout doesn't have a single line in bold! :)  Almost there!  They also said that his thyroid numbers from last week were normal too.

His main problems this week have been with muscle pain and cramps in his legs and occasionally in his shoulders.  The nurse told him to drink tonic water and he can take some calcium supplements cause his was at the low end of normal.  Evidently those things help with muscle cramps.  Of course the active ingredient in tonic water that helps with the cramps is quinine, which in itself can be bad for you.  We bought a bottle today so I guess we'll discuss if he wants to drink it.  I mean, he's already dealing with leukemia the last thing he needs to have to deal with low platelets, right?  Perhaps we'll start with calcium. :)

While we were waiting in line to pay for parking Josh declares that he thinks he just needs to calm down about all these things he's feeling.  He just feels "something" all the time.  Fatigue, muscle cramps, bone pain, whatever.  He's realizing that it is time to learn to live with these symptoms, cause they will be here forever.  Up until now each little thing has made him think that the chemo isn't working and things are going downhill.  But these things are just normal for someone with Chronic Myelogenous Leukemia.  Normal for people taking Tasigna.  He's trying to acclimate to this new normal. 

Every time we are at the Fast Track Lab we do realize how very blessed we are.  So many very, very sick people.  So many people with acute leukemias.  So many people having a really difficult time with treatment.  Thanking God today that he is doing so well!

Frustration!

I think it is very clearly documented how angry it makes me to have to deal with the financial aspects of cancer care!

Seriously  so very frustrated over here!  Josh got this months paycheck and it is WAAAAAY less than it is supposed to be.  I have no idea why.  And of course now we can't even talk to the payroll folks until Tuesday.

And to top it all off our internet isn't working.  The router was acting up before the laptop died and now it has just basically stopped.  I got about 20 minutes worth of internet time last night but nothing else in the last 2 days.  So now I need to figure that whole nonsense out. 

So now I just feel like crying out of sheer frustration!  After we got everything worked out so smoothly last month I can't even imagine going through all of that again.  And then the horrible little thought in the back of my mind is that it is not a mistake and that is just his pay for the month.  Which stresses me to no end. 

Sorry to be such a downer folks!  Please pray for us to feel some peace about this money situation till we can talk to payroll.  4 days is a long time, especially for someone as impatient as me. 

Hope all is going well for the rest of you and you are able to enjoy the long weekend (well, not you dispatchers).  Since Josh doesn't get holidays off it is just a normal weekend for us.  Everyone else have fun!

All alone over here!

So I think this is the first day I have spent time alone in the last two months!  Hard to believe it has been that long since we got the diagnosis and Josh has been home.  Joshua is at work tonight, kiddos are asleep, and the house is all quiet.

I've been sitting here at the computer trying to do some school stuff but my mind keeps wandering back to cancer.  Uggghhh.  It's hard to believe that there will ever be a day that I don't think about it.  And I'm not even the one having to bear the burden of living with leukemia.  It's just making me stressed thinking about Josh being at work right now.  I've been worried about it for weeks cause I am so afraid it is just going to wipe him out.  He slept for about 4 hours this afternoon but I think the man was ready for bed but instead was heading out to the car.

Early on in this situation I read this message board post from other CML patients who were feeling upset and hurt with how other people were treating their leukemia.  That they are "so lucky."  You know, how a pill can just "fix" it.  Obviously that is so far from the truth.  This will never be fixed.  You know one of the first things the oncologist told us was that success with CML  means that you die from something other than leukemia.  It seems so grim to be hoping for that.  Anyways, this one guy's message keeps running through my brain.

"With the exception of my wife who has a front row seat, they prefer to think everything is fine, they don't like the idea of thinking of me being sick.  When they see me I look fine, they don't see how tired I am except I might catch a nap on the couch at Sunday dinner when I never used to.  They don't see me pause half way up the stairs to take a deep breath so I can make it the rest of the way.  They don't see me wake up in the morning as tired as I was when I went to sleep and have to literally drag myself out of bed.  They don't see me wake up every morning with a bad stomach ache.  They don't see that I can't enjoy a meal anymore and I just eat basics to keep myself nourished.  They don't feel my heart take off in rapid beats for no reason and scare the crap out of me.  They don't think about mutations, loss of response, and log reductions.  They don't feel that I am dizzy most of the time, that I can't concentrate that well, and that my memory is often slipping.  They can't understand that I've lost something, that everyday it takes all of my energy and determination to just to maintain some semblance of normal.  That hopes and dreams for the future are tainted and questionable.  Most of them don't worry everyday about how they will pay for their medication that they need to live.  They don't understand that I am not me anymore, I'm a bit different now."

 If you know Josh you know he's not quite that eloquent.  But it makes me well aware of what he is going through.  Most of those sentences have been spoken at some point over the last month.  And it just breaks my heart.  And he so perfectly verbalized exactly what I have been thinking about.  Over and over.  That our hopes and dreams for our future are tainted and questionable.  Tainted and questionable.  Those words have been playing in my brain over and over for days.  Blah.  I know so many people dealing with cancer are so positive and so upbeat.  But I'm just not there yet.  I think I'm still in that sad phase.  Where you are mourning the life that might not be.

So I guess the whole point of this post is to just say please be nice to my man. He would never say it but he really is dealing with a lot. 

Love ya JP!

Back to work!

Just wanted to announce that Josh officially made it through his first day of work without being force fed pomegranates.  Something I was truly fearing. :)  He also can't have alcohol folks, so please don't feed him that either.  Not that there's a lot of boozing it up going on at the railroad.  But you know.  Before.  Or after.  Or wherever.  No alcohol!

And here's the strange thing - I think the man actually had fun!  He's totally not cut out to spend all day every day at home with his only contact being our children, the occasional neighbor, and facebook.  And it seems like he got lots of socializing in today, which you know he loves.  He's my little social butterfly. :P

All joking aside, he did say it was really nice to see everyone.  He was especially touched by all the hugs, handshakes, and pats on the back.  Thank you so much UP folks for having such big hearts and caring for my honey.  Yes, my honey.  I'm not afraid to let you know I'm head over heels for this man!

Tomorrow I'm sure will be more difficult with the transition to staying up all night.  We would appreciate prayers that his fatigue doesn't affect his ability to stay awake.  I think he is mostly concerned about the drive home.  Due to his chemo schedule he won't be able to snack for the hour long drive, which is how he usually stays awake.  So please pray for alertness especially while driving.  Hopefully he won't have any train emergencies or unruly crews that stress him out!  Get ready third shift, he's back!!!

Good numbers, bad feelings :(

The big news is that Josh goes back to work tomorrow!  Happy and sad over here.  Happy he is able to go, but sad to be all alone during the day again!  I think I have truly forgotten how to take care of the kids all by myself! :)

You know he has been feeling SO great.  Really just light years better than before the diagnosis.  And then this last week things have seemed to regress.  He has been super exhausted and is having pains in his leg and knee.  They were so worrisome we contacted his trial nurse to see if we should have some more labs done.  They basically told us, "well, he still has leukemia."  Not really sure if that means this going back and forth between feeling well and feeling bad is normal.  But they told us he could have labs done today if "it would make us feel better."  Ummmmm, yes, it would make us feel better.

And basically there was nothing amiss.  So good, and kinda bad.  Bad cause evidently this is a side effect of the medicine.  It is so crazy that the side effects of the chemo are exactly the same as the symptoms of leukemia.  And I guess bad timing since he has to go back to work this week. They tested his thyroid just to make sure that was normal but we don't have those results yet.  Also kinda bummed that all his stuff wasn't back to normal.  Still waiting on the hemoglobin to get back up to the normal range.  He's close, though.  We don't go back till June 8th, which seems like such a long time.  I really need Lab Corp to open up an office right here in my dining room so I can check his counts whenever it strikes my fancy. :)

And seriously, folks, you HAVE to sign up to walk with us for Light the Night!  I've gotten to the point where I am directly telling people they need to join us.  They have to join us.  Like pretty much forcing, regardless of their resistance.  It will be fun!  Bring the kids and enjoy a nice evening being with friends and helping raise funds to fight cancer!!

So I'm passing Josh off to you UP folks tomorrow, so please take good care of him!  And don't stress him out!!!  Truly the last thing he needs.  He comes in for a first shift to catch up on what he has missed, but will be back to thirds on Friday night.  And please don't accidentally feed him grapefruit, pomegranates, or Seville oranges cause he can't have those and might have a heart attack right there in the office!  Whew.  I had to get that off my chest just in case anyone was going to force feed any of that stuff to him.