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!