December 29, 2014

Round 2…Here We Go Again!

Back in May during my two-year check up, we discovered that my leukemia had returned as “minimal residual disease” or MRD as the powers that be refer to it.  Throughout the next months, they continued to test and check to determine any growth pattern.  While it has grown, it has still stayed at the “minimal” level.  While that is good, it has not made my doctors feel that much better about my being out of remission.  The reason is that they cannot predict how long it will remain “minimal.”  It could be a few months, a few years, or a few days.  And my stem cell doctor did not work so hard to save me just to let something slip in and mess things up!  :) 

So besides other matters such as unexplainable rashes, a throat biopsy that came back with a mixed message, and a parathyroid that still needs to come out, Dr. Shah has been looking at two possible options, actually three.  1) A DLI, donor lymphocyte infusion, which is where they use my donor’s lymphocytes for a mini transplant booster.  The problem with the DLI is that there is a high risk of GVHD (graft versus host disease).  2) CAR (chimeric antigen receptor) T-Cell Gene Therapy, a clinical trial where they use my cells or donor cells (they will use mine in my case) to extract T-cells and engineer them to attack B-cell cancers that have a protein called CD 19.  Or 3) Wait and do nothing until I am more symptomatic.  There are new leukemia drugs that were not available in 2011-12. 

The problem with option #2 was that I had not qualified for the trial, so we have been in wait mode…until late November when the specifications were changed and Dr. Shah shoved me in while the door was open!  The reason she opted for #2 instead of #3 is that while it is a relatively new therapy, it is not far from what has already been done to me, so the side effects aren’t much different than what I have already dealt with.  In fact, they should be much less (best case scenario).  “Lowered immune system, hives, rash, low blood pressure, muscle pain, joint pain”…whatever.  However, since my cells are mostly donor cells, there is still a significant chance of GVHD, even though I am getting “my own” cells.  The greatest, but least likely, risk is that my old cells that get mixed in with the assassin group start attacking my graft.  If that happens, we would have to go all the way back to square one with another stem cell transplant.  :/ 

But the possible benefits far outweigh the risks!  Her thoughts are that if this can get me back into remission while I am still “young and healthy” (I love when she says that) that we’ll still have #1 (DLI) and #3 (new drugs) in our back pocket for the any future bouts.  The more chemo you use early on, the less effective it is later…the fewer options are available.  I’m still young.  I need to have as many options later on when I really am “old.” 

So, today, December 29, I signed my consents; then they proceeded to take 21 vials of blood to use for gathering the T-cells.  (Almost as much as in a can of Coke.)  The first 18½ flowed out fairly well, but then I must have just run dry!  :)  They worked with my veins and re-stuck me, which made #3 for that arm for the day (labs and two draws).  Nothing.  They were about to just make do with what they had, but I insisted that we weren’t stopping until they had all 21!  If we were going to do this thing, we were going to do it right!  So they warmed up the other arm, finally found a vein, and got the last few vials.   Done!

Over the next 50 days, they will genetically modify the T-cells and turn them into little assassins.  Seven to eight weeks from now, I will receive my T-cell infusion, along with meds to help avert allergic reactions.  In between now and then, I will have to get another CVC inserted for the receiving of the cells, just like I had for my stem cell.  Somewhere in here, they are probably going to remove my parathyroid…before the cells go back in and the immune system goes down.  Afterwards, I will start the routine follow up schedule similar to post transplant….  This is a 15-year trial!  Praying that I make all 15 years!!  :) 

I decided to wear my special #BTHOCANCER t-shirt that we have in support of our friend Russell Lambert who is currently fighting a stubborn ALL.  Today I am wearing it for us both.


Please pray with us that this therapy produces the desired effect of remission. 




“May the God of hope fill you with all joy and peace as you trust in Him,
so that you may overflow with hope by the power of the Holy Spirit.”

Romans 15:13



December 22, 2014

He is Still on the Throne!

We had our first of three Christmas celebrations yesterday, which has already put me in the end-of-year reflective mode.  So while these things are fresh on my mind, I thought I would write them out.

2014 has been quite a year.  In fact, the last several years have been doozies…each in their own way.  It started out fairly well, actually, as much as I can recall these days!  Then came April 17 when we lost our Kyla.  Life will never be quite the same without her infectious laugh and a smile that could light up the world.  But life, indeed, goes on.  Just as it did when we lost the many before her.  Painful, different, yes.  But God is still good, and He is still on the throne.

Then came May.  Within a three-day period of time, we found out that my leukemia had returned and that Paul had lost his job of 21 years.  Our sense of security, hope for the future, all hung in the balance.  Insurance, retirement, savings, income level all dropped drastically.  I spent the next months back and forth to MD Anderson.  Paul was carrying the weight of the world on his shoulders.  But through it all, God is still good, and He is still on the throne.

Then just weeks ago came an opportunity for Paul that seemed a direct answer from God.  But it turned out to be completely wrong!  We struggled for an answer.  What were we missing?  What were we supposed to learn?  JOY!  We had been struggling with joy.  No matter what situation you’re in, continue to obey God, to serve and love your friends, and you will find joy.  Period.  Why?  Because God is still good, and He is still on the throne.

On December 29, I start a clinical trial that will hopefully get this cancer back into remission.  (I’ll write more about the details of the trial at another time.)  Paul is working for his best friend, as unto the Lord. 

We move forward confident in the fact that God is good, and He is still on the throne!


 “For the LORD is good; His lovingkindness is everlasting
And His faithfulness to all generations.”
Psalms 100:5