The Next Two Steps

Yes, I said two steps.  As I have said before, everything is up for change when you go see Dr. L.  He never ceases to amaze us with his knowledge, his care, and his desire to do everything he can for us.  But one thing I have learned is that I never go thinking I have a plan.  If I do, it will be all messed up for sure!!  So...although we had talked about the next step we didn't even begin to try to think we knew what the next step would be!

At our oncology appt two weeks ago, the oncologist brought up something that Zine nor I ever had heard of.  And we didn't share that information with anyone as we wanted to wait until we met with Dr. L.  As it turns out, Dr. L had mentioned it as an option before but Zine nor I neither one remembered.

In light of the fact that traditional methods nor chemo have worked, we will begin a procedure that is not done often in the United States.  We are in the waiting mode while doctors communicate with each other.  Zine's blood will be taken most likely from his port, it will be ran through machines and the cells that are attackers in his body, will be removed from his blood and then his blood will be given back to him.  Until we hear back from Dr. G at The Cancer Center we definitely do not know all the logistics.  But we do know Dr. L expects it to begin possibly as early as Monday.  Until just recently, this procedure has required a two week hospital stay but in the last year some doctors have begun to do this procedure outpatient.  We believe that this will be outpatient for us as well.  If it is outpatient, it will require us to go every other day for two weeks for this procedure to be completed.  But once again, we will not be certain of details until we have communication with Dr. G.  It was a blessing for us to have two very important doctors to agree that this was a great trial to see if it might help.  This does not treat the disease, but if it could help with some symptoms then that would be good!

Step number two is chemo!   Which one was the question?  We had our list of questions that we had developed as we researched.  And as always, Dr. L was very good to answer each of our questions and concerns.  The final decision...step two is that Zine will take a 5 day chemo.   He was scheduled to get this chemo in November but due to the blood clots, we missed it!  There is over a year long waiting list to get this drug.  However, we will not have to wait nearly that long.  We expect to have the weeklong treatment by February.  

We have come to understand that I am going to become very good friends with the nurses at Dr. L's office!!  This is a process and details will evolve on a daily/weekly basis as needed.  So although we like plans and dates on the calendar, this is one of those situations where we will have to walk through very loosely!  But we know for certain these are our next two steps and the logistics will be worked out as needed.

With the chemo, because of risks of autoimmunity, infusion reactions and some kinds of cancers, we will be put into a restricted program called the REMS program.  (Risk Evaluation and Mitigation Strategy)  This chemo is only available at a handful of locations across the United States and has only been approved in the past year.   We are very blessed that our dr was the first doctor in the US to administer this drug.  So although, it will require a week long stay at Cullman, it's not like it is forever away!  And we are able to get it with a doctor that we already have a relationship with.

Now as Dr. L stated, I don't want to give you any false hopes.  This drug nor the other chemo drug, that will follow a few months after this 5 day one, will come with any great amount of hope or research that it will change Zine's progressive disease.  The drug that came with the most hope, didn't work.  But these two things are the only things we have left to battle with.  And it is a battle.  We will expend all battle weapons that we have to fight with.  And this is part of the battle plan!  We fight not with a hope that these drugs will work.  However, we do fight with a hope that there is Great Physician that has the power to heal at any moment!  And we fight knowing, that even drugs that aren't expected to make a huge difference, that the Great Physician could choose to use one of those to bring His healing!  So the battle is worth fighting!  If we were old and our kids were grown, we might feel differently.  But for pete's sake...we have a 6 year old, a 15 year old, and a 17 year old!  The battle is worth fighting!

Thank you all so much for praying us through our day.  I have many details that I can share but those will have to come in future posts.  This does not even begin to touch the emotions or the relationships involved in these decisions.  I have just wanted to get an update of facts to you as it relates to our next steps.  And I feel bad that it has taken me this long.  But we were needed to be with our children as they process this information which is very difficult information to process.  We know beyond a shadow of doubt that we were prayed for all day!  Thank you!

Continue to pray as the next adventure of our lives unfold before us!  We are very tired!  We are pretty emotionally spent right now.   A simple hug from a friend brought tears to my eyes a few minutes ago.  An hour in a counseling office brought a dumb truck load of tears today!  But we are walking in complete confidence that our doctors and us have made the right choices and there is great peace that we are in the middle of God's plan for our lives at the current time.  That in no way makes this place an easy place, but we walk with a peace and confidence in the decisions and path ahead!

Thank you for journeying with us and we hope that even in this post you see the great struggle but also the great faith we have!  And may God use our words in the middle of your darkest struggle, that you would know there is still a hope and a faith in the One who loves and cares for us so much that He began our lives with a kiss a breath from his heart to ours!