Ups and Downs!

Today was a day of ups and downs, along with plenty of waiting.  Waiting seems to be such a big thing with MDACC.  Filling the hours between appointments is enough to make you crazy! The good part about it is that Josh and I get to snuggle up together and do crossword puzzles, which I have missed doing since the kids were born.  Yes, we snuggle up on a couch in a hospital and really just have fun together.  I am loving getting to spend so much time with this man!

The good news was that Josh definitely has CML.  I know some might think this was bad, but we are really relieved this is the form of leukemia that he has.  Josh's white blood cell count last week was 225,000 where normal is 4,000-10,000.  So we were quite certain that he had leukemia, but they cannot officially diagnose CML without the bone marrow biopsy results.  And sure enough, they found TONS of the Philadelphia chromosome in there.  They actually discovered that 9 out of 10 bone marrow cells Josh has are cancer cells.  Isn't that crazy?  It certainly explains the excessive fatigue he has been experiencing these last few weeks.  This Ph chromosome actually creates a special protein called bcr-abl.  All of us have the bcr protein, and all of us have the abl protein.  In Josh these two proteins have fused together, which then creates the cancer cells.  It is reassuring to know that this is one of the most treatable forms of leukemia.

They have decided that the best course of action for Josh it to take Tasigna.  This is one of those drugs that used to be a second line drug that was recently approved for first line defense of CML.  Can you believe that a one year supply of this drug costs $80,000?  It is so incredibly shocking.  Dr. Quintas wants to Josh to join a clinical trial they have going on right now that is testing this drug.  It is kind of strange because this is an already FDA approved med, so it seems weird for it to be in a trial.  But like I said before it was only recently approved for first line use.  So they are gathering long term data and results on its use in newly diagnosed patients.  The great news about the trial is that they pay for your meds!!  ALL of them.  For at least five years.  So that is an amazing answer to prayer.

We qualify for this trial, but we were unable to start treatment today because the insurance company has yet to approve it.  MDACC said that United "hasn't said no, but hasn't said yes."  So we waited around for hours today with the hopes of walking out the door with the prescription bottles in hand, only to have to come home empty handed.  We are praying that tomorrow all of the insurance madness will be worked out and hopefully Friday we can begin treatment.  It seems pretty obvious that it would benefit them for Josh to be in the trial, so we are hoping they will come to the same conclusion.  While the trial would cover medicine costs, we/the insurance company would have to pay for all the testing and labs.  The trial does not require anything extra, so we would be doing these tests anyway.  Please pray they make a timely decision tomorrow so we can start getting Josh better!!

This specific form of oral chemo only targets the cancer cells, which is what makes it so amazing.  So none of the terrible side effects of regular chemotherapy.  There is a large chance that it will drop his WBC too low, so that is a concern in the beginning, till we get the dosing worked out.  There is also a possibility that Josh can't tolerate the medicine because of side effects, which would be very difficult.  From there we could try a few different medicines.  We are optimistic with the extremely high survival rate under these meds, but at the same time realize that it doesn't work out that way for all patients, even young healthy ones.   Josh will have to take it twice a day on an empty stomach, so we're going to have to get into a better routine as far as when we eat!  It is really amazing that he will be able to receive his treatment in the comfort of his own home, instead of hooked up to machines in a hospital.

We are expected to see amazing results almost immediately.  Within the first three months his blood counts should be drastically better.  With CML you never really have remission, since it is something you live with forever.  What the doctors look for is instead called a Complete Cytogenetic Response (or CCyR).  It really just measures the numbers of Philadelphia chromosomes in a sample of bone marrow.  So we should see a major response within 6 months, and the end goal is a complete response by 12 months. 

We did find out that Josh will have to have bone marrow testing done every three months for a while, eventually getting to a point of only one a year.  So he is feeling quite stressed about that, although the doctor told him that they could knock him out next time if they needed to.  Dr. Quintas was very nice in commenting that "people have different pain thresholds."  I told Josh he was lucky he didn't call him a little girl.  Josh wants me to make sure that I let you all know that he also said that sometimes younger people have a harder time with it. :)
 
This afternoon Josh called the disability insurance people just to make sure that they had received all the paperwork and he was told that his claim is on hold cause our doctor said that he never told us that Josh can't work.  It is absurd!!  The very first night Josh called in cause 2 hours before he was supposed to go to work he was told he had cancer.  They then called us and told us to take the whole week off.  So once with met with the first oncologist we realized that he needed to file a claim cause we were going to be going to some many doctor visits over the next few weeks.  Since Josh works nights he has to take off 2 "days" just to spend a few hours at the doctor.  And his extreme fatigue is really hitting him hard - there is no possible way he could stay awake and alert enough to do his job all night.  And besides that, the man is stressed to the limit and extremely distracted.  Is this the person you want giving train orders that are safety sensitive?  Definitely not. Of course this all happened at 5:00 pm, so we will have to wait for tomorrow to try to get this all worked out.  And now we are starting these extremely powerful drugs with a massive list of side effects.  Don't think the man needs to be dizzy and vomiting while trying to answer emergency calls and give verbal authorities that require 100% accuracy.  So please pray for all those involved tomorrow to get this paperwork processed!

So happy to be home tonight watching our favorite show, ANTM (yes, Joshua loves it too!), and relaxing with the kiddos fast asleep.  Thanks to our wonderful babysitter's today!  And we were so surprised and excited to see that Josh's Give Forward Fund has hit the $2000 mark today!  So incredibly humbled and thankful for the generosity of our friends, family, and complete strangers!!

We'll update tomorrow when we find out about the insurance coverage for the trial! Have a good night ya'll!