Plu ça Change...

Smoky Mountain Vista taken from the Blue Ridge Parkway, 6-3-12

Plu ça change.....        

        That's probably really bad French.... it's supposed to mean "the more things change", and you're supposed to fill in the rest (plu ca la mem change) - "the more they stay the same".  I hope someone can correct me on that.  We do have some changes to report, plus new blood counts, but I am pressed for time so forgive me if I am to the point.  Let's go to the numbers - platelets up from 99,000 to 126,000!  This is excellent, indicating my marrow is continuing to recover from the recent "insult", (Dr. Kritz called it that - isn't' that a great word in this situation?)  which they continue to believe was a virus of unknown identity.  My white count dropped precipitously, from about 13,000 down to 3,800 - this was expected because we stopped the neupogen support on the 6th of June.  My ANC (absolute neutrophil count) is 1500, which is fine - but we don't want it to drop further (less than 1,000 is "neutropenia").  I will get checked again Monday morning, just before leaving for Chicago.  Yes, Chicago, not Houston.

        So here's the plu ca change ....I got an email from Dr. Bollard (see last post) indicating that the prepared t-cells did not "play nice" with my other sister's (Jill's) blood cells - the t-cells killed them.  This test, required by the FDA, has to be a "pass" in order for me to continue as a subject for this trial.  Therefore the t-cell project is on indefinite hold.  I had planned to fly from Houston to Chicago to spend a couple of days with my parents and Jill and her family - so with the cancellation of the t-cell infusion, I decided to extend that trip to 4 days - I'll arrive Monday afternoon and return Friday afternoon.  We already have a lot planned for those 3 days (Tu-Wed-Thu), so hopefully, much blog photo material will be on the way!  (I deduce that the Lord wanted me in Chicago on Monday and Tuesday, not in Houston!  All will be well.)

        Back to the t-cell project - we will try to re-run the required tests with a couple of different cell populations - the same t-cells, but tested for compatibility with some of my own skin cells, and also against a sample of my dad's blood.  I can't go into the medical detail except to say that they are trying to demonstrate that the t-cells, once infused into my body, will not cause a negative reaction.  This process may take many weeks.  Again, the overall purpose of the trial is to give my body an additional defense against the possible return of the lymphoma.

I need to run now.....God keep you and bless you.......Dan and Renee

Photos, Counts, and Gratitude

One of Renee's many garden accents - fairy habitat :-)

Hello friends, I saw Jessica and Dr. Kritz (very briefly) yesterday.....When I am doing very well, Dr. Kritz lets Jessica (advanced practice nurse or APN) see me and he focuses his attention on people with more troubles - as he should.  Anyway, my platelets were up again, this time to 99,000 (from 77,000) - which is GREAT news.  Dr. Kritz pronounced my count-killing malady (still unidentified) as "resolved".  My white count and neutrophils were still way high, so we will stop the neupogen shots and see where my counts stabilize unaided.

I have two trips to Houston coming up, June 18-20 and July 2-3, for my t-cell infusions.  Briefly, these t-cells were taken from my sister Laure, my donor, a few months ago, then modified to "target" EBV, the virus that is integrated with my lymphoma tumor cells.  Then they are copied into the billions of cells and will be infused into my body on the two aforementioned dates.  The design is that these super t-cells will attack and kill any lymphoma/EBV that tries to reconstitute in my body - preventing a relapse of the highly aggressive lymphoma that I HAD!  Any of you scientific types may enjoy further reading here:

http://www.clinicaltrial.gov/ct2/show/NCT00062868

This is a clinical trial.. and this is the doc that is in charge - she is with the Baylor College of Medicine and is a native New Zealander:

http://www.bcm.edu/fromthelab/vol05/is8/1006-2.html

I continue to be stunned and amazed at my medical status - cancer-free, counts looking good - healthy and active - the Lord has blessed me and my family and we are full of gratitude and praise.  He is in control - always has been, always will be.  If we think we are in control, it is an illusion.  The illusion can be shattered in tragic ways.  I was under no such illusion, thanks be to God, and as I told a friend yesterday, I think it is a beautiful thing that we believers can confront a trial and KNOW that it is the Lord, saying in effect - "I have a tough assignment for you - it will challenge you and it will be hard, but if you trust me, it will bear eternal fruit in your life and in the lives of others".  This is miraculous, beautiful, and amazing.

As I left the clinic yesterday, I saw this family of geese that has taken up residence on the lawn outside the front door -

Please join me in looking for the beauty of God's creation every day.  It's there in so many ways, and it's there for us.  Any of you wondering about my return to work - I can say that given these latest improvements in my counts, discussions are beginning on that topic, which is another praise.  Much love - Dan and Renee

With partner Dave Murray, victorious at my club's Member-Member tournament a couple of weeks ago.

Hello all - quick update today on my visit with Dr. Kritz yesterday.  My platelets were up again, this time to 77,000 (from 54,000).  So, very good news there - also my neutrophils were WAY UP, to levels heretofore unknown, i.e., 14,000.....where 'normal' is between 2,000 and 3,000.  We continue to believe that my marrow is cranking out these elements as it should be, though the neutrophils are inflated by neupogen shots, and should moderate as we back off that drug therapy.  So, things continue to look positive.  I will have another blood test next tuesday and will update you again then.  As always, thanks for your prayers and encouragement.  Thanks be to God for all our blessings.  Dan

Bone Marrow Awakening!

The young woman Rachel Rooker on her first day of work
(those are stockings, not tattoos!!  Gotcha!!)

Lieber Freundin, we have good news today.  First, my daughter Rachel, our oldest at age 22, received an offer of employment from Lane Bryant clothing stores on Friday!  She eagerly accepted and started work yesterday - her first day on her first job!!  Rachel has always kept busy writing and making jewelry, but has not scored a job until this week.  She is home for the summer and has one more semester at UNC-Asheville to get her degree in creative writing.  Renee had been praying with particular fervor and constancy about this because it was becoming a real burden for Rachel to be among the 'jobless'.  So, once again we are praising the Lord for answers to prayers.

Speaking of which, yesterday Renee and I were in the clinic, waiting for that big needle to be punched through my hip bone, and the PA, Jessica, was with us looking at my lab results and said, "I don't think you are going to be having a bone marrow biopsy today.....what have you been eating?"  The quip about what I had been eating was prompted by my platelets having jumped from 21,000 to 53,000 in 7 days.  Additionally, my neutrophils had gone through the roof, up from 400 to over 7,000!!!  (Which is way above normal).  So, the doctoral view is that for unknown reasons, my bone marrow is beginning to crank out platelets and neutrophils and the problem that caused the suppression is resolved or resolving.  The behavior argues for the virus theory, but we still don't know for sure, nor what virus might be the culprit.  And, we may never know - but guess what?  The Lord knows, and he has full control over all this stuff;  that's very comforting.

My next clinic visit for labs is next Tuesday, so we'll see then if this very positive trend continues.  Until then, thanks for your continuing support.  I will post next Tuesday or Wednesday latest.  God's best to you from us......Dan and Fam

Counts Update

Early morning on the practice range

Hello friends -  after that euphoric post on May 2, I regret to give a negative update, but I guess such is the nature of leukemia and stem cell transplants.  The gist is that my neutrophils and my platelets have not recovered - I am taking daily neupogen shots at home (to stimulate neutrophil production), but today at the doc my ANC was just 400, and  1000 is the minimum healthy level.  My platelets are down to 21,000, from a high of 143,000 which was early April.  Dr. Kritz, who is always very direct, said he could think of 4 possible causes - a viral infection (I have some minor symptoms, but nothing jumps out at us), chronic GVHD (again, no telltale symptoms, but it's a possibility), a second-stage graft failure, or possible return of leukemia (I can't see how this one could be right, given the very recent tests in Houston).  So, more neupogen shots to support my ANC, while Dr. Kritz consults with Dr. Hosing.  This is, to say the least, unwelcome news and a real downer on our good news which was less than two weeks ago.  We're on our knees, please join us if you can.  I see Dr. Kritz again in a week.  All for now,

Dan and Renee

Hello - short post today to confirm that the flow cytometry test also came back negative, so it's official - COMPLETE REMISSION.  CANCER FREE.  Sweet words!!  I spoke to Dr. Hosing and I choked on the words of thanks, I was so overcome with emotion.  Richter's transformation is nasty business - looking back on it, I feel that I have been delivered from the lions' den, or from the fiery furnace.  Praise God for all He has done, including equip and enable GREAT doctors!  And as always, thanks to all of you who have followed me on this journey and prayed for me, sent your encouragement - it helped bear me through.

God's best to you.

Dan

PS I am still battling extremely low neutrophils and falling platelet counts.  Appreciate your prayers in this regard.

Renee with the Hero of the Hour, Giant of Medicine, Dr. Michael Keating 

        Hello again, I promised to update you when I received additional test results, specifically on my CLL.  The bone marrow biopsy has several components;  the first one to come back is the pathologist's report -  he or she looks at the blood in the marrow under a microscope.  That report, we learned yesterday, was negative - i.e. he/she saw no evidence of CLL.  That is just stunning, amazing, phenomenal!!  There is another test that also looks for CLL called flow cytometry, and we don't have that back yet - but we tend to think that, if the pathologist did not see any CLL, that this other test will not find  much, if any, CLL.
         What can one say?  I am just grateful to Dr. Keating, Dr. Hosing, and the great physician, the Lord Jesus, for giving me a new lease on life, for however long He ordains.  And today my wife, Renee, is on my heart - I just want to say that she has been a wonderful, heaven-sent companion and, on may days,  nurse for me - she still loads my 3 pill boxes every week, identifies what prescriptions need to be refilled, encourages me, and fights for me as a prayer warrior.  She is perfect for me, and she has been perfect through this.
        Under 'it's always something', today we have the fact that my neutrophils and platelets have crashed, and we don't know the reason.  I am trying not to worry about it and trusting completely in the Lord - the same Lord who blessed us with the test results discussed above and in my previous post.  But, something for us to continue praying about.  Blessings to you.  Dan and Renee