Annual Update?

I just noticed that it has been about a year since I posted anything and even though everything is still going well, I feel guilty about not keeping everyone up with my status.    I run into people and they ask me, 'I haven't heard anything lately and I was worried.'  Well, no need to worry, I am still hanging in there.

When I was originally diagnosed in June of 2000, I was given a 5-10 year life expectancy.  I guess I must have screwed up their survival curves.  On October 29th, I officially passed my 4 year anniversary on the Imbruvica Clinical Trial.  Even though 397 people started the trial, there are probably only about 200 left taking the drug.  Those that stopped did it for a variety of reasons: disease progression, they could not tolerate the side effects, they just stopped taking it, or they moved on to another drug.  I feel fortunate that I am still able to take it with few side effects and it is still keeping my CLL at a relatively stable level.  I know I'm not cured, but a least it is being managed and hopefully there will be another drug out there in the future that will get me off of 3rd base and 'get me home'.  One of my blood numbers is increasing at a slow pace and in January they will run a deep sequencing test that can determine if I will become resistant to the drug in the future.  If that result comes back positive, we will have to start looking at other treatment protocols.  Even if I do progress, my doctor thinks it will be a slow progression and said, 'we will worry about that in 3 months'.  But with the approval and testing of many new drugs to treat CLL, there will be a lot of options for me in the future if that happens.

The Evans family has once again had some additions to the brood with daughter Sarah and her husband Kevin having identical twin boys in August.  Levi and Gage make it number 8 & 9 grandchildren.  Because they were 8 weeks early, we wound up spending a lot of time in Montana, since the babies were in the NICU for over 4 weeks in Billings, which is 100 miles from their home in Livingston.  They are home now and doing great.  No issues even after only weighing only about 3 1/2 lbs at birth.

I still lead the Orange County CLL Society Support group which meets monthly at University of California Irvine (UCI) Medical Center.  We now have over 150 people on our email distribution list, which makes it the largest CLL Support group in the country.  This year I have given talks at CLL Society Education Conferences at Huntsman Cancer Center in Salt Lake City, at the City of Hope in Duarte, and at University of California, Irvine.

Last Saturday I went  to the National Institutes of Health (NIH) in Bethesda, Maryland to give a talk on Clinical Trials.  I can honestly say that I was humbled to be in the same company as some of the world's top CLL experts.  The facility is amazing, with 75 buildings on 300 acres.  No matter what your political stance, the Federal government's support of this facility is key to the health and well being of ALL citizens.  The work that they are doing there is truly amazing and the advances they have made in treating all diseases is profound.

Next year I have talks at Moffitt Cancer Center in Tampa Florida and again at the City of Hope in Duarte, CA.  I lead a team at  The CLL Society (the non-profit I am involved with) that has now started over 15 CLL specific support groups across the country, with one in Canada and one in Ireland.  We are on track for starting another 10 next year.  I'm pushing for the one in Maui to get started.  It is really rewarding to be able to 'give back' and share my journey and some of my 'acquired' knowledge to people affected with Chronic Lymphocytic Leukemia.

Other than a lot of time in Montana we haven't done any major traveling this year, just short trips to Austin to see my Dad, his wife Lois and my sister Rebecca and her partner Cherese.  A couple of trips to Albany (CA not NY) to see Matt and Randi and the girls.  Also a trip to Fresno to see my aunts, and a couple of golf outings with our golfing friends.

We are planning on having all 9 grandchildren here for Christmas, so it will be slightly chaotic for a time, but worth every minute of it.

At Christmas I always reread the poem called "A Visit from St. Nicholas' or as it more commonly known,  'The Night Before Christmas', by Clement C. Moore.  The last line of this poem is often quoted as 'Merry Christmas to all, and to all a good night'.  I want to make sure that you all know the CORRECT line as it was originally written.

HAPPY Christmas to all, and to all a good night

And of course keeping with the real reason for the season, the famous quote by Tiny Tim in 'A Christmas Carol':

"God bless us, every one!"

Terry