Moving Right Along

Update on Progress

I just wanted to let everyone know how it is going after 3 weeks into my new clinical trial.  I just have one word as of right now.  WOW!  End of short report.

I had pretty high expectations of how I would respond by adding a new drug (Venetoclax) to my previous clinical trial drug (Ibrutinib).  And I was not disappointed.  I know it won't mean much to most people if I throw out numbers, so I will keep it simple.  My counts are all within normal range, and they are the lowest they have been in over 6 years.  All of this has happened while only being on the drug for 3 weeks, and I just this week I started at half strength of my final dose.   There has also been a noticeable decrease in my lymph nodes, which had started to increase in size.  So far the only side effect has been a little mid day fatigue, but nothing major, and this could be in part due to working pretty hard around the house, and playing golf twice a week.   Whether or not I will see any increase in the side effects as we get to the final dose strength remains to be seen, but so far, so good.

My major issues so far has been the time (and financial) requirements of being down in La Jolla for numerous trips (so far 10 days down there).   We have been staying down there overnight when there are many appointments in consecutive days, but after next week, it will go to just monthly visits, which will be nice.  But there could be a lot worse places to be than in La Jolla.

I am still fighting the system to try to get some relief on my co-pay for one of the drugs.  Yes, I am glad that I have insurance to pick up some of the load, and that the drug seems to be working, but I will still be on the hook for about $10,000 out of pocket.  I have done patient advocacy work for two of the three drugs companies that are involved in this trial, and have contact them directly trying to get to the RIGHT person.  Also, my medical team is reaching out to their contacts to try to assist me in my efforts.  As my PA down there says, ' the answer is always NO, until you ask'.  My arguments for assistance seem completely logical to me, but sometimes logic does not enter into the picture.

Since my last post, I have passed a couple of anniversaries.  In May, I passed my 13th year of being retired from the City of Long Beach, and in June, I passed my 18th year anniversary of being diagnosed with Chronic Lymphocytic Leukemia.  Seeing as how the life expectancy was 5-10 years when I was diagnosed, I have screwed up their data points on that one.

We are not letting any of this get in the way of life, and are going to Cambria for a couple of days this week, to get away and do a little wine tasting.  And then next week we are going to help our daughter, Sarah, her husband Kevin and the 3 boys move from Montana to Arizona.   But they will all have a short visit at our house until about Mid August when they will 'officially' go to Arizona.  As soon as all of these initial trial visits settle down, hopefully we can plan on some bigger trips. 

I am still heavily involved in the CLL Society's Support groups, and still lead the Orange County CLL Society Support and Education group, which now has an email list of over 160 people, with an average of about 30 people showing up at our Monthly Meetings.  I also can't believe that we have established 26 CLL specific support groups in the last 2 1/2 years, with about 3 more scheduled to start before the end of the year.  I was also privileged to go to Boston last month to be a part of a Patient Forum for a drug company that has a new drug for CLL in the pipeline and were looking for patient input before they roll it out.

I know some of you were anxious to know what has been going on, and never feel like it is a bother to contact me.  And good or bad, I will give you the answers.  I appreciate all of the concerns and the prayers that have been directed at me.  They DO make a difference.

Terry

And Now for Something Entirely Different!

Monty Python fans will immediately remember the title of this post, which was a line that they used in their shows when switching from one skit to another.   It appears that I am relapsing on the drug that I am on, and I am going to have to start another treatment protocol.  After an exhausting search I think I have found a treatment that fits the bill.  It is another Clinical Trial at UCSD and will start by the end of the month.  End of short report.  I will warn you ahead of time, the rest is pretty long.

It has been 54 months since I started the drug Imbruvica (Ibrutinib) as a part of the clinical trial that the FDA used to approve the drug for use in patients with Chronic Lymphocytic Leukemia (CLL).  I was happy to be a part of that trial, and even happier that I responded to the drug.  It now appears that the times, they are a changing.   Even though I feel fine, I had suspected something might be going on back in December and since then, my blood tests have shown a slight rise every month.  In January at my doctor's appointment, I asked him if he thought this was a trend upwards, and he said yes.  I also asked him if it was time to run what they call a deep gene sequencing test to see if I had developed any mutations that happens to some patients who are on Ibrutinib over time.  He again replied yes.  So he ran the tests in March and it was confirmed that I have a mutation in the C481S pathway.  (It is unfortunate that I understand this) This means that eventually this drug will stop working for me.  So it is not a question of IF, but WHEN. 

So the obvious question was what do we do now?  I actually feel fine right now but we want to head it off at the pass and start another treatment sooner than later.  My options are limited because of a couple of things.  I am what they call heavily pre-treated, which means I have had a lot of treatments.  I am also a Complex Karyotype, which means that I have some genetic abnormalities that don't respond to certain treatments.  So this has led me on the month and a half long search to find another protocol.  Since I will probably need a treatment that is fairly new, I started looking at Clinical Trials and found that there were a few options there. One of my options was a University of California at Irvine (UCI) trial and was for a drug similar to the one I am taking but is supposed to target the genetic mutation that I have developed.  The problem with this one, after consulting with their staff, is that it is REALLY new, and not many patients have been on the drug so far and they are still trying to figure out the dosage.  In fact they don't have a patient yet at UCI.  At this point in my journey I don't think I want to take the risk of this drug not working at all and then having the disease progress very rapidly.  There just isn't a lot of data yet on how patients are doing on this new drug.

So my next choices were at University of California at San Diego (UCSD) and they presented me with 3 options, all of which had pluses and minuses.  One was a trial and the other two were using combinations of already approved drugs.  After weighing all the options, I decided to go with the Clinical Trial.  On Friday, I agreed in principal to be a part of this trial.  They are now scheduling me for pre-screening, which should happen in the next week.  I would assume if all that goes as planned I would start the trial within the month.    Another plus for this trial is that because it was initiated at a University of California Medical Center, they may be able to transfer it to UCI, so I would go there for my subsequent testing and follow-up care.  Even though I was reluctant to go on the first trial at UCI because of the small number of patients, it turns out I may be Patient #1 on this trial.  It doesn't concern me as much because both of the drugs I will be taking have been tested together in the past and have been shown to be very effective.  The reason that this is a trial using two approved drugs but in one of them they are changing the normal dosage.  

The major downside to this trial is that I will have to pay for one of the two drugs.  Makes no sense, right?  It's a trial, right?  However, if I were to go out and get both of these drugs prescribed as a normal prescription, I would have to pay for BOTH of the drugs.  The problem here is something called CANCER ORAL DRUG PARITY.  Even though I have Medicare Part D, which is supposed to pay for my prescription drugs, this is a Tier 5 drug, which is the highest level they have for the newer costly drugs.  If the drug were given as an infused drug, it would be paid for by Medicare.  But because it is a PILL, it is covered by Medicare Part D, which has different rules.  It gets even crazier.  If I weren't on Medicare and just had regular insurance, the drug companies have programs to offset your co-pay and it would probably only cost me $50 per month.  But if you are on Medicare, it is ILLEGAL for drug companies to subsidize patient's drugs.  This is why one of the drugs will cost me about $12,000 out of pocket per year.  This absurdity is why 48 states have already passed laws making the coverage of Intravenous (IV) cancer drugs and pill-form cancer drugs the same.  Unfortunately that has NO weight because Medicare is a Federal Program.  There is a bill in the House of Representatives right now called H.R. 1409 Cancer Drug Parity Act , which would change this, and even though it has bi-partisan support, the pharmaceutical lobby is very strong and there are questions as to whether it will pass or not.   I am sure that most of you have been impacted by cancer, either thru personal experience, or a friend  or loved one.  It is mandatory everyone supports this bill.  I encourage you to call or send an email to your local representative in support of this legislation.

Yes, I'm disappointed that I am relapsing, but I am ready for the next round, and hopefully it will give me a couple of years and set me up for the next newest thing that is coming along.  The quest for the cure is maturing and the most promising of the treatments is something called CAR-T therapy.  It is very early in the development this treatment, and not very easy to explain in a paragraph.  Basically it is a treatment where they remove your T Cells, and infect them with a modified HIV virus that targets the leukemia.  They are grown for 2 weeks outside the body and re-infused.  It is not for the faint of heart.  Several patients have died, several have not responded at all, but several have been CURED.  My friend and fellow CLL warrior Dr. Brian Koffman has been in Seattle since March getting this treatment at the Fred Hutchinson Cancer Center.  As of Friday, he has been declared completely cured of leukemia.  He was extremely sick and hospitalized multiple times after the infusion, but he is on the road to complete recovery and is cancer free. Right now there aren't many places in the U.S. that do this type of treatment, but that landscape is changing, and as they refine the treatment the risks will decrease.  It is certainly something I would consider in the future.  Here is a link to Brian's CAR-T journey, with an explanation of what it exactly is.  Brian's CAR-T Blog  I would suggest you go to the beginning if you want an explanation of what it is about.

On a different (some people have said insane) note, we were fortunate to be able to go to Disneyland a couple of weeks ago celebrating our granddaughter Naomi's 5th birthday.  All NINE grandchildren went, 8 adults and 5 strollers.  Even though it was the hottest day of the year (94), we all surprisingly had a great time. We are truly blessed. 

Thanks for all of your prayers and words of encouragement.

Terry

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

Anniversary?

Well, October 25th I had my 3 year anniversary on the Clinical trial drug Imbruvica.  At my doctor's appointment he said that based on my physical exam and blood work he now considered me in Clinical Remission.  This does not mean that I am cured, but means that without more extensive tests you could not tell that I have CLL.  This pretty good news and the end of my short report.

For a more medical explanation, when you are treated for CLL you either get a response from the drug, or not.  If you get a response but you still have lymph nodes or spleen that are palpable, have blood numbers out of normal range, or have any 'B' type symptoms (fatigue, weight loss, night sweats, etc) then you can have what is called a Partial Response or PR.  Because the drug that I am on is very slow acting, I was in a PR state for 3 years.  At my last physical exam I showed none of the symptoms that would be included in a PR, so he declared that I was in Complete Response or CR.   According to the Trial data only about 14% of patients in my category get a CR, so I am very thankful for that.  I am hopeful that I will continue on this Clinical Trial (which has an expected term of 5 years) and if and when I need more treatment there will be something even better out there.  The strides that they have made in just the last 3 years have been truly amazing.

Since I haven't posted for about 6 months  there has actually been quite a bit going on in my life in that short period of time.  In my last report we just had our fifth grandchild, Otto.  Since then we have had two more grandchildren, Maebel Olive Evans (parents Jeff and Kristen) and Liv Marie Evans (parents Matt and Randi).  We are now up to 7 grandchildren, all 5 and under.  Quite a brood.

Donna and I went to Austin in October to celebrate my Dad's official 90th birthday.  We had a small celebration with dad and his wife Lois, my sister Rebecca and her partner Cherese, and some Austin friends of my dad's.  Then the first week of November we had the REAL party at our house of all the family and had about 25 family members here for that.  It was the first time my Dad had seen 3 of the new grandchildren, so it was special for a number of reasons.

This last few months have not been the happiest of times.  2 months ago, within two days of each other, we lost two warriors in their fight against blood disorders.  Peggy, who I had known for over 30 years at the City of Long Beach, lost her courageous battle with MDS (Myelodysplastic Syndrome) and Dylan, the 28 year old son of my long time barber, lost his battle with ALL (acute lymphoblastic leukemia).  Both had fought for over 2 years and it was a very tough to see them both succumb to their diseases.  RIP Peggy and Dylan.

I just read Tom Brokaw's book A Lucky Life Interrupted and have to say that it is an extremely well written book that I can really relate to.  I told Donna that the introduction is almost a word for word explanation of how my CLL has affected me personally.  Figuratively (not literally), I could have written those words.  For those of you not familiar with his book, it is his journey with Multiple Myeloma, which like my blood cancer, Chronic Lymphocytic Leukemia, has no cure, but can be treated.  It is a very well written book by someone that we are all familiar with.  He not only talks about his disease, but also the state of our broken medical system, the high cost of drugs, and the lack of communication even between his team of world class doctors.  It is a good read for anyone who has been affected by cancer or knows someone who has been affected.

We have been extremely busy since Labor Day, and have gone on 10 trips.  We have been to Berkeley, Montana, Austin, Kauai and Maui, most of them pleasure, but some have been in conjunction with my participation in the non-profit organization  The CLL Society.  I have been to Madison, WI, Charlotte, NC and Tampa, FL.  It looks very promising that we will have CLL specific support groups in those areas.  At the CLL Society we are doing a lot of outreach to other cities to try to establish groups there.  I am still leading the Orange County Group which meets monthly at UCI Medical Center and we now have a mailing list of over 100 patients and caregivers, and usually have between 20-30 attend each month.

Nowhere in my original diagnosis in 2000 did I expect to be blessed like I am.  I am blessed with having a wife that literally saved my life by doing research and prodding.  When I was diagnosed I never thought I would see all 4 of our children married, and 7 wonderful grandchildren.  I didn't think I would see my Dad hit his 90th birthday (and Donna's parents hit their 98th and 97th birthdays).  I am blessed with wonderful friends, some of them lifelong.  But I am cursed with having golfing buddies that always ask how I'm doing, but never stop with their incessant comments about how bad my golf game is.  That 5-10 year life expectancy at diagnosis is LONG GONE, and here I am working on 16+ years, with many more to come.  

It's not always the CLL

Since my last post in November A LOT has gone on.  Fortunately not much of it has to do with my CLL.  As of right now I have been on my trial drug Imbruvica for 2 1/2 years.  In that time I have almost progressed to normal blood levels and lack of any other B-symptoms like swollen nodes, night sweats, fatigue, etc.  With one notable exception which I will talk about below. 

Otto Remington

So what has happened in the last 4 months?  Quite a bit.  Most importantly. our 5th grand baby was born to our youngest daughter Sarah and her husband Kevin.  After a long and trying pregnancy, Otto Remington was born in February and we were fortunate enough to be in Montana for his birth.  He is doing great and growing by leaps and bounds.  So far our oldest daughter has gone to visit her, and our two sons and their families are going in the next 2-3 weeks to visit them.

Secondly, I have become more and more involved in the CLL Society a non-profit devoted to the education and support of the CLL patients.  I am already facilitating the Orange County group at University of California Irvine Medical Center every month and we have been fortunate to branch out and form another support group based at the City of Hope in Duarte.  I will lead the group for a few months and then turn the reins over to another individual that has been involved in other support groups and is willing to lead this one.  Our mission is to expand these types of support groups all over the U.S.  We already have interest from about 5 locations that are interested in having this resource in their communities.  This seems to be a role that suits me, and it is definitely rewarding sharing with fellow CLL patients.

Lastly, I have been having abdominal issues for a number of years, but it was undiagnosed all this time.  This changed 2 weeks ago.  I had been having issues for about 8 straight weeks starting in January, and it didn't seem to be going away.  After visit to a gastroenterologist, and a nuclear scan, they determined that my gall bladder was hardly functioning at all.  So a visit to the surgeon on Tuesday, surgery on Friday, I am now without a gall bladder.  I was in by 5:45 and out by 2:00 pm, not bad.  So far the recovery has been fairly easy, but I have been on a bland, non-spicy food menu (not what I'm used to), so I really haven't tested it much.  Because of the trial drug, there is a risk of bleeding, so I had to be off of it for 7 days and can't restart for 2-3 days post surgery.  I stopped the medicine as soon as I got the results from the nuclear scan, so that I could have the surgery as soon as 7 days were up.  This meant I would have to have the surgery on Friday.  I knew this was going to be a stretch because I didn't even see the surgeon until Tuesday of that week.  This became even more of an issue because after 4 days of being off of Imbruvica I began to relapse.  My lymph nodes grew in size, came back in places I had never had them before, and we painful to the touch.  Even though all the reports say you go back into remission quickly after you restart the drug after surgery, I knew I wanted the time off the drug to be as short as possible.  I really want to thank the staff for understanding my plight and doing their best to accommodate me. This was my first experience with Hoag Hospital in Newport Beach, and I can say that I have been thoroughly impressed with the staff and facilities.  I have an appointment at UCSD on Friday so I can see what effect this has had on my CLL. 

On another note.  I get comments on my blog, and unfortunately, when someone posts a comment, I can't see where it came from.  There is no email attached, so I can't respond.  If some of you thought I was being rude for not responding, I apologize.  I just don't know how to get a hold of you.  Because the comments are public, I would hesitate to put your email in the post, but you can contact me directly at tevans@cllsociety.org  and that will get to me. 

So I guess the takeaway from all of this is that I can't blame everything on my CLL.  I still will have other medical challenges along the way, but after doing this so long, not much phases me anymore.

Giving Thanks!

I guess it is only appropriate that during this Thanksgiving season I offer up my own THANKS.  I have now been on the drug Imbruvica for 2 years.  I had my 2 year trial check up with my doctor at UCSD last week and everything is going well.  I am VERY close to what they call a Complete Response (CR), where the peripheral blood counts are in the normal ranges.  As I mentioned in my last post, this has been a very SLOW process that has taken over 2 years, but it has always been moving in the right direction, even though it seems like it has been at a snail's pace.   So, I will be thankful for slow.  My physical exam also showed no evidence of disease, and I am having no other symptoms that would indicate a disease progression.  I feel really good physically, and play golf at least weekly, and If I feel up to it, walk the course with two of my friends who are both over 70. 

The question always comes up about how much longer will I be on this trial, and the answer is that no one really knows.  I do know I have appointments set up until October of 2016, so it is at least that long.  The information that I have always received is that this trial (the Resonate I trial), is that one that got the FDA to approve the drug for CLL patients (only for certain situations), and they really want to continue gathering long term data to help justify future approvals.

I can't say that I am happy to have been diagnosed with CLL, but I think I am making the best of it.  I am very involved in the CLL community, which is kind of a two edge sword.  On one hand I am always thinking about it, but on the other hand I feel like I am contributing to the betterment of the CLL community.  I have become one of the main coordinators of the Orange County CLL support group and my role is to lead the meetings every month.  I am on the CLL Society Patient Advisory Board for the CLL Society .  This is a non-profit that has been setup to be a worldwide resource for CLL patient education and support.  I have also been given the opportunity to be interviewed by a number of market research firms on behalf of drug companies and there was even an article written about my journey in CURE magazine.   You have to go to Page 3 to get to my part of the article. CURE Article.  I am also speaking at a CLL Patient forum at the City of Hope in Duarte in December to a group of CLL patients from around Southern California. COH Patient Forum .   I am also in contact with people diagnosed with CLL, who don't feel like a Support Group is the place for them.  Some people I know don't want to think about their CLL, and that is a personal preference that I respect.  For me, it seems like being involved is the way that I cope the best.

There have been so many advances in the last 2-3 years that the future looks very bright for newly diagnosed CLL patients, or those who have relapsed and need a new treatment.  So if I do need treatment again, I will have a host of options to choose from. 

Since my last post we have done a bit of traveling.  In August we went to Seattle visiting family and for a wedding, then went to Montana for a week.  Then we spent some time in Lake Arrowhead with our friends Bob & Dianne.  Then in September Donna went to Montana to be with our daughter Sarah who had emergency gall bladder surgery (she was 4 months pregnant at the time), after a week there she came home and the next day we left for Cancun with our friends Tom & Sandy for a week.  Then in October we went back to Montana (for a trip we had planned before the unexpected surgery), We then went to Las Vegas to visit Donna's sister and our niece, and checked off one of Donna's bucket list items, seeing Elton John in concert.  Then came home and went to Temecula for a golf outing with friends.  For a while there, it seemed like we were never home.  We only have two upcoming trips planned, one to Berkeley for a couple of days to visit Matt, Randi and Naomi, and then in January we will be going to Montana for some period of time for the birth of our 5th grandchild.  Montana in the winter...sounds like an adventure to me.

So, I really do have a lot to be thankful for, and I hope that your Thanksgiving can be as blessed as ours.

And then there were 4 and 5

     
I am continuing to see SLOW improvement in my blood numbers, which doesn't really surprise anyone.  As I might have mentioned before, the Imbruvica works like that.  It is a very SLOW acting drug, unlike chemotherapy which mostly has an immediate response.  In fact, studies have shown that if you respond too quickly to my drug, you will probably not have as durable response a someone who slowly responds over a long period of time.  A fellow CLL'er, who was on one of the first Imbruvica trials, only reached normal blood numbers after 3 years on the drug.  Most of my blood numbers are in normal range, but some still are not.  I continue to have minimal side effects and am glad that after 20 months that I am still in remission and still responding to the Imbruvica.

But because of my compromised immune system, I am susceptible to infections and those infections can take a while to clear up.  It took about 3 1/2 months for my pneumonia to clear.  Just about as soon as that almost cleared, I got another infection which took 3 courses of antibiotics to clear.  Then, I got some sort of sinus / ear infection that took 3 weeks to clear.  All this from a guy who had almost no colds during the 7 year period from diagnosis till my first treatment.  I will admit I have been rarely sick, even after I began my treatments.  So this situation I have dealt with for the last 7 months is really rare for me and maybe that is why it is so frustrating. I also know that I can't blame EVERY physical ailment on the CLL.  I continue to play golf multiple times / week, and we are traveling once again. 

In my last blog post I mentioned that my lifelong friend, Tall Tom Robertson, was waiting for a lung transplant.  Tragically, after over 30 days at UCLA medical center, they were unable to find a match and he passed away in April.  We went to his memorial service in Marysvale, Utah in May and it was heartwarming to see the love and affection that was shown by all of his friends and townspeople. He will certainly be missed, but not forgotten.

Some of you may be curious as to what my blog title means.  It means that since my last blog post, we had the birth of grandchild number 4, Emma Jeanne Watkinson, born to our daughter Aimee and Bryan. and it also refers to the fact that our daughter Sarah and Kevin are Pregnant and this will be grandchild number 5 for us.  What makes this pretty amazing is that 14 years ago when I was first diagnosed, none of our 4 children were married and we had no grandchildren.  Based on the AVERAGE survival rates for CLL at the time, I had between 5 and 8 years to live.  Obviously no one knew at the time that more advances would be made in the last 5 years than in the previous 50 years.  Now there are more treatment options and people are even talking about a CURE, which was unheard of when I was diagnosed.

Last week we went to Berkeley to visit our son Matt, his wife Randi and our granddaughter Naomi.  This weekend we celebrate the 1 year birthday of Lois, who is Jeff and Kristen's daughter.  It turns out EVERYONE has decided to come in for this event and we will have about 20 family members here for that.   Then in 2 weeks we take off for the wedding of Randi's brother in Seattle and from there we venture eastward to Montana to visit Sarah and Kevin for a week.

In May, I had my 10 year retirement anniversary.  I can't believe how fast this time has gone. Even though I have had some minor bumps in the road I can't help believe that I am blessed to be on this journey.  My friends, family, medical team and faith have allowed me to continue LIVING instead of dwelling on my situation.  I feel fortunate to be part of a support group for CLL patients and part of a CLL non-profit organization.  I saw some friends a few days ago that I hadn't seen in 4 months or so and they said that they missed my updates and had been wondering how I was doing.  It is hard sometimes for me to dwell on how well I am doing, when so many people out there are NOT doing all that well, even with all the new and exciting treatments.

As my friend 'Too Tall Tom' used to always say, "stay healthy".

Terry