Friday, December 28, 2012

Merry Christmas

Santa brought me a new pair of trekking poles!


I hope it's OK to wish you all a Merry Christmas after the actual holiday.  MERRY CHRISTMAS!  We're still in the holiday season so I hope you are still celebrating.  I'm 'working' from the cancer center where I am getting an infusion of IVIG, a compound that is either actually immunoglobulin, or something that boosts the same - this is the only part of my new immune system that is not normal (yet).  I came down with another pre-holiday fever on the 21st, and the same antibiotics that punched out my Thanksgiving fever did their thing again - I was fever-free by Christmas eve.

We had a small gathering on the 21st to celebrate my one-year anniversary since the transplant.  I'm in a  very cool place now in my recovery, where the odds of a relapse are going down as I move into my 2nd year.  My re-staging checks will be spaced out to 6 months this year, and I hope my blood checks will also get spaced out, maybe to a month or so.  Unfortunately I've had two fevers within the space of a month, so I'm puzzling over what has caused that...I have had what I call cold symptoms for a long time without fever, so what has changed could be the fact of going to work daily and seeing lots of people, many of whom may have sick kids....plus the stress of the new job.....anyway I need to stay healthy and figure this out.  I did get good news on my counts when I had labs drawn on Wednesday the 26th....counts were excellent.

Mike (my hiking partner) and I are already getting fired up about our JMT hike - we sat out behind his house last night talking about the trip - he has a fire pit in back, perfect for strategizing and dreaming about the JMT.  We plan to do our 1st training hike this Sunday - 10 miles with about 30 lbs of backpack weight.  Not much more to report.  I am planning my first international business trip which will take me to HongKong, Shenzhen (sister city to HK but over the old border), then Singapore for a few days, then the long trip home.  More soon....Dan


Friday, December 21, 2012

Christmas Day, 2011

Dear Friends, today is a BIG DAY.  One year ago today, I received NEW LIFE in the form of a stem cell transplant - stem cells that were donated by my sister, Laure.

So the big news......that I am announcing today.....is that I have committed to hike the full length of the John Muir Trail in August of this year, and hopefully become the first stem cell transplant patient to do so, and the first Richter's survivor to do so.  This is a 212 mile trail, one of the most scenic in the world - it traces the crest of the Sierra Nevada mountains from Yosemite National Park southward through the Ansel Adams Wilderness, Kings Canyon National Park, and Sequoia National Park.  My longtime friend, Mike Nix, has joined me and will be my partner throughout the training and the hike.  I have 4 goals:

•  To raise a significant amount of money for the pursuit of CURES for blood cancers
•  To encourage and inspire blood cancer patients in their fight 
•  To fulfill a lifelong dream to hike the most scenic trail in the world
•  To bring glory to God for what He has done   

With the help of the Leukemia and Lymphoma Society, I have a fund raising blog open now at:

http://pages.teamintraining.org/nc/frndstnt13/dkrooker         <----------CHECK IT OUT!!

Mike's fundraising page is here:  http://pages.teamintraining.org/nc/frndstnt13/mnixwc  (under construction)


I have a team of supporters, which I hope will grow - a team member just has to be enthusiastic about raising money to fight leukemia and lymphoma, and be willing to support my fundraising efforts along the way.  Right now my team includes:

Renee Rooker
Mike Nix (hiking and training partner)
Laure Rooker McKenna
Jeff Williams (buddy-for-life)
Harry Rooker (dad)
Tiffany Drummond Armstrong, Executive Director of the Leukemia and Lymphoma Society of NC

If you want to join the team - just let me know!  I cannot tell you how excited I am about this project.  Help me spread the word!  Dan

Friday, November 23, 2012

Giving Thanks

Getting a boost of anti-EBV t-cells at the Baylor College of Medicine
Hello friends and family....it's been an up-and-down week.  I've been fighting a fever and sinus infection since Sunday morning, and a couple of times, my fever got high enough that we were getting ready to go the hospital. - but each time it backed off a bit, and we kept a bag packed.  I've been without the fever  now for 36 hours or so, so we're hopeful that the latest antibiotic is doing the job.  On the big plus side, I heard Wednesday that the bone marrow biopsy was found to be normal, which is great news :-) !!

My parents have been here since Monday...unfortunately it's been kinda like a sick ward, as my son Kenyon has also been suffering with fevers and bronchitis.  Nonetheless, we had a traditional Thanksgiving dinner yesterday and enjoyed a beautiful fall day here.  The football was plentiful and exciting, too.
Who I'm most thankful for 
Well, that's about it...we hope you had a great thanksgiving, if you celebrate it, and if you don't celebrate it, you should start - everyone has something to be thankful for.  A year ago, Renee and I were making preparations to go to Houston for my transplant.  What has transpired in the past year - valleys, hilltops, being uplifted by so many friends, family members, strangers....is nothing short of a miracle.  I am so thankful for what the Lord has shown me and how He carried me through these troubled waters.  I owe everything to Him.  May He be with you this Christmas season.

Shiloh getting a bird's eye view

Thursday, November 15, 2012

With Alice and Coy at Dr. Keating's office yesterday





Hello friends and family and followers....a quick update from Houston - by the smiles in the photo above, you can tell that the news was good - great actually!  The PET and CT scans were negative, and we are thanking the Lord for these wonderful results.  We were also blessed yesterday by the reaction of my entire medical team - including Erin and Dr. Hosing over in transplant - to how well I am doing, just 11 months after transplant - they were amazed at how healthy I look - of course I don't see myself that way, but it's a real blessing to have them fuss over it,a nd it makes me realize more and more how blessed I am. 

So we are THANKFUL, THANKFUL, THANKFUL to the Lord and King Jesus, without whom nothing is possible.  I have to run now to get an infusion of T-cells - originally from Laure, but they have been put through a rigorous training program and will do a search-and-destroy mission on any lymphoma cells that dare try to mount a threat to me.  Love to all - Dan

Tuesday, November 6, 2012

What's New......


Just about to cross the starting line, center, waving :-)


Greetings - are you still with me?  I'm still with you!  I hope my infrequent updates and all-around normalcy haven't dampened your interest...but I would understand.  I've had several check-ups in a row now where there have been no anomalies in my blood counts - which is fantastic news.  Also, since my last post, I've been taken off of the protective anti-biotics, anti-virals, and anti-fungals that have been helping to keep infections away.  The reason for this is that my t-cells - key components of my fledgling immune system - have surpassed a key milestone.  That means that I am drug-free, except for the neurontin that helps manage my neuropathy symptoms (tingling feet).  Hard to believe - my "original equipment" immune system is long gone, and my transplanted immune system from Laure's bone marrow is doing everything my old one was - except produce cancer cells!  A true medical miracle - but above that, a miracle of God, because the docs don't know why one transplant works and another doesn't.

At the finish with my cheering squad


As I announced in my last post, I joined the Team in Training with the intent of running in the City of Oaks 10K race in order to raise money for the Leukemia and Lymphoma Society - that race was 2 days ago and I completed it without walking - which was a big surprise - I never ran more than 4 miles in practice - but the excitement of being among 5,000 racers must have gotten me past the pain.  More importantly, I raised $12,500 for L&LS, thanks to many of your generous donations.  I plan to participate in more events in the future.  A very special thanks to my good friend Eddy Tsang from Hong Kong, who made a particularly lavish donation, which was the major contributor to my being the top fund-raiser out of 75 TNT participants.

Work is going well and it looks like I will be installed in a "real" job with an organization and everything very soon.  I am a little anxious but also very excited about it.  I end my post today with a request for prayer.  Next week, Renee and I will be going to Houston for my 90 day re-check - so I will get the battery of cancer screens.  Your prayers will see me through.  Trusting in Him and praising Him for all he has done - Dan and Renee  

Thursday, October 11, 2012

Big Development

Discharge Day, January 4, 2012

http://pages.teamintraining.org/nc/Oaks12/danrooker

Friends, I am joining the Leukemia and Lymphoma Society's "Team in Training (TNT)" organization and participating in a 10K run here in Raleigh - called the "Oak City 10K" on November 4th.  As a member of TNT, I train for endurance events and raise money for the society, which is committed to finding cures for blood-related cancers.  I am posting a link to my TNT website where you will see a message from me, along with a photo of me and my awesome doctor, and a button to make a tax-deductible donation to the fight for cures (you will receive a receipt from the Leukemia and Lymphoma Society for tax purposes).  I hope you will join me in the fight by clicking the link above.   Dan

Monday, September 24, 2012

Back So Soon??

End of the Trail - 10.4 miles later (I only have 10 fingers, but close enough)

HI friends, I know it's only been a week since I posted, but I wanted to share with you how I chose to mark my 9th moniversary (made-up word that means 9 months, instead of "anniversary" where "anni" specifies years) of being reborn, i.e., my transplant.

My pal Mike Nix and I have enjoyed hiking together over the years and done a few camping/backpacking outings with our boys (he has three).  He and I hiked 10.4 miles along the North Carolina Mountains to Sea Trail, which meanders through Wake county along the south shore of Falls Lake.  This was yesterday, by the way, so my gams are still a hurtin'.

Just after completing 1st 3.6 mile section and crossing NC route 98


The actual moniversary was Sept. 21, last Friday....that day I saw Jessica, who is Dr. Kritz' APN (advanced practice nurse;  she has a masters' degree from Duke).  I don't see Dr. Kritz that much anymore because I'm doing so well.  Anyway, that day, my moniversary, was about the best day I've had at the doc in a long time....first, I got my first round of childhood immunizations - that's good because I'm getting them about 3 months earlier than normal because my 'graft' is so stable - i.e., no transplant complications, no graft-versus-host disease, no issues after the suppression drug had been stopped.  So, while I didn't enjoy being shot 5 times, it was for good and valid reasons.  Second, my counts were as good as they have ever been, with no assistance from Neupogen....whites at 5900, neutrophils at 3300, hemoglobin at 13.8, platelets at 121K.  Third, as a result of all this outstandingness, Jessica told me to come back in 3 weeks(!) - this will be the longest time between doctor visits since the transplant (assuming all goes well).

So, I continue to be amazed at the capabilities of today's medical professionals and at the payoff in lives saved by the dedication and commitment of the researchers who develop these incredible treatments.  And I continue to be amazed at the loving God we serve, who created the universe out of nothing, and our bodies, minds, and consciousness out of carbon and DNA (massive oversimplification, I know!).  How amazing that a God so great would be mindful of me....and every day is a gift from Him.

Signing off for now...........Dan

Mike contemplates the pain in his gluteus maximus as he gazes out over a quiet cove on Falls Lake

Tuesday, September 18, 2012

The New Normal Life........

I see that my last post was a full month ago.  No doubt the biggest reason is that there hasn't been anything really newsworthy on the medical front.  That, in and of itself, is a wonderful thing.  More good news - I'm not posting because there is anything negative to report.  I just feel like I ought to check in and let you know what's going on.  The biggest medical news is that I developed a cold a few weeks ago, and just before I was supposed to go on the big annual western trout fishing trip.  Of course my counts responded by dropping, but we started the neupogen and they came back up....we also started an antibiotic to help prevent the dreaded infections.  It all worked like a charm, and the trip came off fantastically, as you can see:

On the Clark Fork (of the Columbia River), with Scott Nicolarson, Trout guide par excellence, August '12

Brother-in-law Scott with a fat Montana Rainbow and guide, Chris

Dad and I on a cool Montana morning

Other happenings have included a visit from my sister Laure and her family, a harrowing surgery for our oldest dog, Shiloh (he's recovering well), and as of this week, 2 months back at work for me.  I feel well and strong;  I am planning to do a 10-mile hike to commemorate 9 months since my transplant (that anniversary will be September 21, a few days from now).  My next full re-staging will be in Houston, November 6 and 7.  

This week is the one-year anniversary of my hospitalization for pneumonia, which led to the lung cancer, then lymphoma, then Richter's transformation diagnoses, and all that came after.  It is hard to believe it really happened.  Among the things I will never forget is the support and love that surrounded me and my family.  I will always be grateful for it.
        
God's best to you and your family.  Trust in Him;  He will not fail you, for He has your eternity in his hands.  

Dan and Renee




Tuesday, August 14, 2012

Latest and Greatest

Major cook-fest for Renee's Birthday - Devon, Kenyon's friend, at left
Well, greetings friends and family...it looks like it's been almost two weeks since my last post and a lot has gone on.  Certainly the highlight was Renee's XXth birthday the weekend of the 12th.  We gave her a weekend away but at home, which we called "The Inn at Battleview Gardens".  She was not allowed to do any housework, nor cooking nor clean-up - her "staff" of 4 waited on her hand-and-foot.  It was a big hit, and I was ready for a long rest after check-out time on Sunday. 

Medically, I think I have a loose end to tie off with you - the flow cytometry was the last test to come back from my 90 day re-check, and that was also negative - I got the word from Dr. Kritz on the 6th of August.  So - I can finally say that the series of tests came out completely clean.  I stand amazed and humbled at what the medical professionals have done, but I know they cannot do anything without the blessing of God, because he is sovereign over all matter and events.  My next check-up will be in Houston in early November.  I have had some minor issues over the last 10 days - an apparent infection in my shin resulting from a small abrasion - all infections are treated seriously - but that's healing up nicely now with some antibiotics.  And, at about the same time that flared up, I registered almost zero neutrophils - this was also on the 6th, the day I got the final results on flow cytometry.  This resulted in the strong impression that "it's always something"!  I got on neupogen shots daily and today at my visit the "neuts" were up from 100 to 8,800.  So we over-solved that problem (2500 is about normal), and I'm off the shots now.  I continue to feel fine and with the exception of this week (due to the low counts), I have been going in to the office every day.
The "Three Amigos" at Renee's Tapas Deck Party

The kids both start college semesters very soon - Kenyon's first semester at Wake Tech here locally, and Rachel's last semester at UNC-Asheville begins next week.  This cause quite a bit of stress and strain around here.  The Lord will see us through.  Our best to you and yours.  Check soon for trout pictures!!   Dan




Wednesday, August 1, 2012

All Clear!


HI folks - great news - the bone marrow biopsy result was negative!  This result is based on the pathologist's examination of the slides.  This gives a highly but not 100% accurate result - the flow cytometry results are still pending.  These are almost always consistent with the pathologist's reading - but, there's still one more bit of news pending.  I'll only post at that point if it's a contrary finding.  We will do this all again in late October in Houston.  The Lord is my Shepherd!

It's great to be back at work;  I'm getting more into the meat of projects now that my workstation and software are all loaded and operational.  Sorry I need to cut this short, I'm on a little lunch break and need to get back to work....but I wanted to pass along the good news.  Dan


Some of Renee's backyard garden, with some iPhoto effects by me



Saturday, July 21, 2012

Scans Clear!

Great news, friends.....both the PET and CT scans were negative. Thank God for answered prayer! I'm pressed for time right now but wanted to share the great news.  I have my bone marrow biopsy Monday. I think the scans are "bigger" because they would detect lymphoma, which is the more aggressive.....more soon....Dan

Monday, July 16, 2012

Working Man

First Day of Work!!
Hi ya'all, we hit another major milestone this week as I returned to work at IBM.  I had planned to be back a week ago but the administrative process for getting off of long term disability turns out to be a major headache.  And, though I am on the payroll as of today, I still don't have access to any IBM systems.  I'm sure that by the end of this week, I will be fully engaged and enabled.  It feels great to be back - quite an emotional day, given the events of the past 8 months.  I feel extremely blessed and grateful.

I had a checkup with Dr. Kritz a week ago, and it went very well.  My neutrophil count was 2800, up from 1100 two weeks prior.  This shows great balance and strength in my blood cell production.  Also, it's already time for my next re-staging battery of tests....every 90 days for the first year.  I'll have PET and CAT scans this Thursday the 19th, and a bone marrow biopsy on Monday the 23rd.  My next post will be with the results of those tests.  Please lift Renee and I up in prayer.

More soon.....bless you and yours......Dan

Monday, July 2, 2012

Travelin' Man

Self-portrait with the famous Lone Cypress backing us up - June 29
       
         Greetings, fellow blogophiles.  Another 2 weeks have gone by since my previous post, so in a sense, I am right on time with this one.  I am currently flying over the Sierra Nevada mountains, one of my favorite places on earth.  Renee and I are returning from a short week out in the Monterey/San Jose area.  More on that later.
        Medically, it's been a good two weeks.  My counts have been steady if not spectacular - platelets holding around 100,000, and white count a little under 4,000.  My ANC was 1100 last Monday, which is OK, but a little too close to the neutropenia line for my comfort.   Still, Dr. Kritz was very pleased, and said 'see you in two weeks'- a graduation of sorts from my weekly cadence.  My only issues have been the continuing neuropathy in my feet, along with my two ingrown toenails (big toes on both feet).   I'll skip the details, as obviously, these are small issues in the broad sweep of things.

With Mom and Dad in front of their flower garden, Geneva, IL, June 22

        In the next few days, my doctors are beginning to reduce the drug (Prograf, or Tacrolimus) that I have been taking since just before my transplant.   This drug suppresses my new immune system - I had it in larger doses back then, and it was reduced a few months ago....but the purpose of it is to keep my new immune system from attacking my tissues.  If things go well, I will be off of it in a month, and my new immune system will be up to full strength.  That is not to say that it will be mature, or able to protect me completely from disease and infection - that process will take years.   You may remember that the stem cells that I received were "reset" in the transplant process to the maturity of a newborn.  During the next two years, I will receive all my childhood inoculations again.  You'll also recall that I already contracted a childhood virus, pityriosis, in my skin.  So, it's a major step forward in my recovery to get off this tacrolimus, but it's just a step along the long journey.


View from the 8th fairway at Pebble Beach Golf Links

      Here's another major step...I am planning to get back to work at IBM a week from Monday.  I'm not sure if I can get all the administrative stuff done so that I can start on July 9th, but that is the goal.  I am blessed with a great boss, John Paterson, who has been extremely supportive throughout this entire ordeal.  John has arranged for me to return in a role that will not over-stress my system, but will allow me to gradually build back up to full strength over time.  During that period, which could be a few months, we will also be on the lookout for the right 'permanent' role, such as the one I was doing prior to last November.  The important thing is that I'm going back to work soon!
        My trip to Chicago was great.  I spent lots of quality time with my parents and my sister Jill and her wonderful family;  played golf with a great friend from high school, and really enjoyed everything. This short trip out to the west coast, with Renee, was also a great blessing.  We spent some time out on the Monterey peninsula, crossed a couple things off our "bucket list", and then spent the weekend with our friends Jeff and Melissa, who were our neighbors and dear friends in Raleigh for a lotta years.  It was a short visit, but yesterday we managed to combine a jaunt to Muir Woods National Monument with an evening in the city (San Francisco) at an Anjelah Johnson show at Cobb Comedy Club. Anjelah happens to be a Christian comic -you can check her out on Youtube.

Renee with Jeff and Melissa at Muir Woods, June 30


        Well, that's a lot of news.  I seem to be in a very good place medically, and we continue to pray for grace, mercy, and peace from our loving God.  Later in July I will have another re-staging with a bone marrow biopsy, a CAT scan, and a PET scan.  We're already in prayer for that. If you would pray for my return to work to go well, I will be grateful.   PLEASE, let us know how we can pray for you. 


Romans 11:33-36     Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out!  Who has known the mind of the Lord? Or who has been his counselor?  Who has ever given to God, that God should repay them?  For from him and through him and for him are all things.  To him be the glory forever! Amen.

God's glory revealed at Muir Woods

Friday, June 15, 2012

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

Wednesday, June 6, 2012

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

Wednesday, May 30, 2012

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

Tuesday, May 22, 2012

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

Monday, May 14, 2012

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

Wednesday, May 2, 2012

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.


Tuesday, May 1, 2012

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

Thursday, April 26, 2012

Awesome God!


With Dr. Keating yesterday
        No one knows why God heals some and not others.  One of the hardest things about being a Christian is accepting that disease, decay, and death are part and parcel of our fallen world.  In fact, it is only by the unmerited grace of God that we draw each breath.  The great news is that even for those of us who face disease and the possibility of an early death (and indeed everyone), God has provided something infinitely better than this earthly life for those who respond to His call.  Additionally, as Romans 8:29-30 says, He works for our eternal good even as we suffer trials.
        With that preamble, I am very happy to report that Renee and I received great news from my doctor yesterday at MD Anderson.  Specifically, my PET and CT scans were clean - no sign of active lymphoma.  This means the lymphoma is in complete remission (CR).  I mentioned in a previous post how deadly Richter's transformation is - and it is the lymphoma that is usually responsible for the mortality rates.  So - this was fantastic news.  The test result for CLL (bone marrow biopsy) is not available yet.  I hope to have that within a few days at most.  Of course I will share that with you when I receive it.  I think I have indicated before that if there is less than 5% CLL, we will not panic, as there are several options in terms of how to handle that.  Still, of course we are praying for another "clean" result.
        Dr. Chitra Hosing is my transplant doctor and she deserves a great deal of credit.  Still, I look at Dr. Keating as the guy who saved my life - he called the play, which was a low-percentage play, but it was the only possible path to a cure.  With some heavenly help, he threaded the needle and, hopefully, has given me a new lease on life.  I said to him, "I can't thank you enough", and his response was "yes you can, and you have, just by coming here to see me" (I didn't have an appointment).
        Another thing I am certain of is that all of your prayers were heard.  I can't thank you enough for the outpouring of support and prayer.  I know that this battle is far from over - but as I have said before, it's a battle I can't lose.  More soon.....

with heartfelt gratitude - Dan and Renee

Sunday, April 22, 2012

Back to Houston - 125 Day Restaging

"Matt's lilac"
Dear brothers, sisters, friends - 


Renee and I are flying to Houston today for my '125 day' re-staging.  There are a lot of butterflies this morning for both of us.  The 2 key tests are the bone marrow biopsy which will show whether there is any remaining CLL in my marrow.  Zero is best, less than 5% is OK.  The other major test will be the PET scan, which will determine whether there is any active lymphoma.  We need a 'zero' on this one.  We should have results by Wednesday mid-day, as we meet with my transplant doctor, Dr. Hosing, at  9:30 am central time that day.

Thanks for your prayers, and may God be glorified in everything that is to come.

"And we know that in all things, God works for the good of those who love Him, who have been called according to his purpose."

Dan and Renee

Saturday, March 31, 2012

Days of Grace

Backyard beautification project blooming
        Dear friends, yesterday was the portentous "day 100" since my transplant.  People ask how I feel and my most frequent response is "I feel ridiculous".  This use of "ridiculous" is borrowed from SportsCenter, when, a few years ago, one of the anchors (I think it was Stuart Scott), started saying things like "check out this RI-DICULOUS dunk by Kobe Bryant".  Of course it means "insanely great".  I even said to Dr. Kritz that if I didn't know what had happened during the past 6 months, the only sign I would have that something was amiss is the tingling in my  toes (and the 27 pills I have to take every day).
        My main message today is that a week or so ago, I looked up the prognosis for Richter's transformation for the first time.  Neither I nor Renee, nor my sisters, nor my parents had checked this out when I was diagnosed - I know that many of you did, and I am grateful that you didn't share what you found with us.  The mean survival interval is between 5 and 10 months.   As we digest this information and 'review the tape' of what occurred between September 20th and now, there are a lot of things that stand out.  First and foremost, we now know that several critical things had to happen exactly right, and at exactly the right times, in order for my earth-suit to make it through this alive - and they have.  Quickly, they are (a) early diagnosis (b) immediate aggressive and successful chemotherapy establishing remission and (c) followed by immediate, successful allogenic stem cell transplant.  I believe without hesitation that the prayers of everyone - friends, family, colleagues, prayer groups, sunday school classes, many people who do not know me, but know a relative of mine - MATTERED.  I will be forever grateful for all that support.

        Secondly, we are astounded at the expertise of and confidence expressed by Dr. Keating - we always thought he was a great doctor, but looking back at the meetings we had with him, when he knew what I was facing, knew the statistics, but also knew the narrow treatment path that offered hope for a cure.  That's what he pointed us at, and he never once talked about anything else but curing me.  To me, he is a giant in medicine and a hero among men.
        Having said all that, I called this post 'Days of Grace', because without the Lord's sovereign blessing, I would not be where I am today.  He is the ultimate source of our lives, and He has tried very hard to get us to understand that a) He is in control of our lives, not us, and not chance, and b) that He has something prepared for us that is much more wondrous and beautiful and eternal than anything this life has to offer.
        One thing I have thought about over the past 6 months is that if we really believe in the Creator God and if we really believe in Heaven and eternal life, why do we pray for long life and no pain here on earth?  We should pray for that which prepares us best for Real Life, the Life that Jesus promises us - Life with Him, Life in Him.  I believe that what I have been through is a God-send because it has brought me closer to Him and conformed me more to the image of His Son - who suffered for us.
        I stress again that medically, I have not been declared cancer-free, and it will be years before anyone declares me "cured".  I hope to find out around April 26 whether I am cancer free or not (return trip to Houston).  Meanwhile, we are praising the Lord for these Days of Grace.  Next week all Christians will be celebrating the death and resurrection of the Lord Jesus.  I think this passage from Philippians chapter 3 is really appropriate here, Paul speaking:
        "Whatever gain I had, I count as loss because of the surpassing greatness of knowing Christ Jesus my Lord.  I have suffered the loss of all things, and count them as rubbish, in order that I may gain Christ and be found in him.....I want to know Christ - yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death, and so, somehow, attaining to the resurrection from the dead."
        God Bless you - Dan and Renee


Wednesday, March 21, 2012

I TWEET, THEREFORE I AM A GEEK

The Official North Carolina State Flower (Dogwood!)

Hello all, things continue to move along in a positive direction - my counts are not too far off of normal.....we've been focusing on white cells a lot but (praise God) they seem to have begun to stabilize.  My platelet count is still below 100,000 - to get to "normal" I need to be over 130,000 and the normal range extends to 400,000.  Also, my red cell count, hemoglobin, and hematocrit levels have all been below normal since the transplant.  On the white cell front, my lymphocytes increased from 2.5 to 3.4 without any neupogen shots - which indicates that the suppression of these cells was caused by the Valcyte which was stopped a couple of weeks ago.  I am still waiting for the result of my last CMV draw, which was Monday.  Two negatives in a row, praying for a third.

I got on the blog today to tell you that   I've signed up for a twitter account - my username is DKRooker.  I thought it would be cool to 'tweet' brief updates at this point rather that write lengthy blog posts - but we'll see how many of you 'follow' me on twitter.  I promise if you follow me, I'll follow you :-).  Go to Twitter.com and get set up in 1 minute if you're not already a tweeter.  There's a cool tutorial there too that will advise you on different ways to use it. It's oriented to quick, rapid status updates and people send cool links (like I just got a tweet from James Taranto of the WSJ with a link to an article...)

Please let me know how you are doing.  (dkrooker@gmail.com)

Oh, almost forgot - today's music recommendation came from my "classic rock" station on my cable TV box.  Today I am coining a new term, "Hope Rock".  It came to me 30 seconds into this song, which I bought from iTunes as soon as practical ( I was working out - on that topic, I power walked 5 miles yesterday!).  Another example of hope rock would be "When Love Comes to Town" by U2.  Are you with me?  What are your hope rock songs?







This last song has some great lyrics for Easter - written by Bono - "I was there when they crucified my Lord - I held the scabbard when the soldier drew his sword - I threw the dice when they pierced His side - BUT I'VE SEEN LOVE CONQUER THE GREAT DIVIDE"  AMEN!

Sunday, March 18, 2012

Spring's Sprung

That's Kenyon, behind that beautiful Rainbow and those Foster Grants
            I'm always apologizing these days for lagging between blog posts, but in fact it is a good thing.  I tend to update more rapidly when there's a crisis brewing and I need the prayer warriors to engage.  I guess that's human nature.  Tell you what - my cell # is 919-649-4926, and I invite you to call between posts if you're anxious because you haven't heard from me.  Seriously - feel free to call, and thanks for your concern.

            Kenyon and I went for a 2 day fishing trip out in East Tennessee this past week - we floated the Wautaga River for a couple of days and took about 25 early spring Rainbows and Browns.  Very good therapy!  I don't generally brag on my kids - except to say that we are a close family - but I wanted to share with you something Kenyon shared with us while Renee and I were in Houston.  With Rachel at college, he was on his own here at home - he had some adult supervision, but being without us for 3 to 4 months was a  real challenge for him - he did great, as did Rachel out at UNC-A.  This is a song that he sent us that he said spoke for how he felt.

http://www.youtube.com/watch?v=m-sZvY2-tIw&feature=related

That truly pierced my heart - I can tend to be critical and the song just nailed the situation - Kenyon was becoming a man through this trial.  That's one of the many great things about music - all types of music can speak to me - and the lyrics don't have to mean to me what they meant to the writer.  Jonny Hetherington may have been writing about a girlfriend, but I can hear my son speaking to me through the same words.  I am so thankful for my children!

            Quickly on the medical front - my white count got really high - ANC was up at about 8,000 - as I responded to the neupogen shots and the medication for the CMV was reduced.  Very thankfully, my last 2 tests for CMV (March 16 and March 9) have been negative.  We backed off on the neupogen shots earlier this week and my ANC is back down to about 2500 which is "normal".  Other counts - hemoglobin, platelets - are good, but still below normal.  I feel very well, and I am working out every other day on the stair master, and doing outdoor walks (last one was 4 miles) on intermediate days.  Spring is in the air which means there is a TON of yard work to do, but I am under doctors orders to do no such thing for a year.  And no, I am not happy about it - I love to be in the yard.  So, guess who it all falls to?

Renee on "creek duty"
Yes, unfortunately it is Renee.  It's a labor of love for her (and me), but we are really looking for a part-time helper to get a lot of it done.  We've bitten a lot off over the years and we continue to bite off more.

Anyway, I need to run - hope all is well in your end of the world.  And if I don't speak to you before, have a wonderful and blessed Easter.  Dan and Renee

Oh, one other thing - my return trip to MD Anderson for my 100 day assessment will be the week of April 23 - we moved it from March 26 to accommodate my 1st T-cell infusion.  More on that next time.

Thursday, March 8, 2012

News - Delayed, but Good!!

Mr. R. B. Trout with Mr. Rooker (Dad), who caught it, looking on. 


Hallo folks....well it's been a week now and once again, I am delinquent in passing along good news....on Monday, Jessica (Dr. Kritz' physician's assistant or PA) informed us that the last test for CMV - the pesky little virus - was negative.  That was great news, but you may recall that after it showed up uninvited in Houston about a month ago, it went away and then I had two negative tests before it came back positive a couple of weeks ago here in Raleigh.  So while it is a cause for rejoicing, we need to pray that it stays away.  Other good news from Monday included a strong white count, including a 4100 neutrophil count - that number was 100 about two weeks ago - so that was great news.  My platelets also joined the upward march, ticking up about 10,000 to around 65,000.  Renee and I were on the proverbial 'cloud 9'.

Many people ask whether a strong neutrophil count (ANC) such as 4100 means I am not susceptible to disease or infection - the answer is no - I am certainly less susceptible than I was when that count was 100, but there are two other reasons I am still exposed to infection - one, my immune system in its entirety is still extremely immature - when the transplant is done, the new cells forget everything they learned in Laure's body - they are sort of a 'clean slate' - they have yet to relearn what to attack and what not to attack.  In fact, I will have to go through all the usual childhood immunizations again!  The second reason is related to the first - I am on a drug that suppresses my new immune system because it is not yet familiar with its new surroundings - if it were not suppressed it would attack things it isn't supposed to attack (like a liver). I can't quantify the difference in susceptibility but one difference is that with an ANC of 100 they recommend I stay home, while at 4100 they say go ahead and go out, just don't sit in crowds, stay away from sick people, don't go to a childcare facility and start kissing toddlers....etc.

One of thousands of stunning lakes in the Canadian Rockies (2010)


I go to the clinic tomorrow for a blood draw - no doctor visit.  I'll see the doc Monday and I think they will have another CMV test result that day.  It has been a great week;  I popped in to work on Tuesday unannounced and because there happened to be a customer in town for a visit, the office was full, so I got to see a lot of my colleagues, which was a real treat - I had not seen most of them for 6 months!  I also went to the practice range at my club and swang  ;-)  the golf clubs for the first time in 6 months....very rusty, but I hit some good ones, which made me smile.  I also worked out a couple of times and did a 3 mile walk, so I continue to be blessed with a great recovery.  Only the Lord knows what tomorrow will bring - but I am enormously grateful for these wonderful days with Renee, Rachel (home for spring break) and Kenyon.  No new pics this week - hope you enjoy the old ones - these will be hanging in my home office shortly.

On the wild, uninhabited south shore of Maui, 2002


With enormous gratitude for your friendship, prayers, and support - Dan and Renee

Thursday, March 1, 2012


Click this link to hear "This Good Day" by Fernando Ortega


        My clock says 6:17 am.  That's a good thing, because it means that I am needing less sleep;  I take that as another sign that my body is recovering.  I have to apologize to those of you who are following me closely and any others that have wondered how I have been doing since arriving home on Sunday the 19th of February - I've been negligent in keeping you updated.

        The good news is that I feel great(!)  It is SO great to be home, and just in time to see the beginnings of spring.  I have almost no evidence of sickness - when I saw my PA (physician's assistant), Jessica, the other day, I listed my "complaints" (that's a medical term!) as - tingling in my feet;  dry, irritated skin;  a slightly runny nose....you get the idea - nothing serious.
 
       More good news is that my sinus congestion has improved - I saw an ENT doctor here on Tuesday and he was very pleased with the improvement - I've been on the antibiotic Cefepime for 3 weeks, and this doc (he's an ENT, and those of you who know the 'Lord of the Rings' know that when a bunch of Eye, Nose, & Throat docs get together for a conference in Scottsdale, it's called a what?  an "ENTmoot"!!  Can you hear me snickering??)...um...where was I?  Oh yes - this ENT, Dr. Price, prescribed another 3 weeks of intravenous Cefepime - that's significant because it means I need to have my CVC (central venous catheter) in at least until that prescription finishes.

Mrs. McElrath's class at Flatrock Middle welcomed me home with this texted photo

        The bad news is that my white counts have crashed due to a medication that I have been on for about a month - it was prescribed because a common virus has activated in my system (abbreviated CMV), and it needs to be treated quickly and aggressively because it can cause "nasty lung infections" as Dr. Kritz put it.  It responded well to the new drug, valcyte, but when I was tested again upon returning home, the virus had returned, albeit at a very low level.  Meanwhile, I've been to the clinic three times since arriving home, and my absolute neutrophil count (ANC) has been 500, 100,  and 300, despite aggressive neupogen treatments (shots!).  So, at the moment, I am on critically-neutropenic protocols...hyper-vigilant about hand washing, staying away from sick people, crowds, etc.  Of course this is FRUSTRATING because I really want to see my friends, go to church, pop in and see everyone at work, etc, but prudence demands that I hold off.

One of our 3 dogs, and my personal favorite - Brodie
        So what am I doing to keep busy?  Renee and I, inspired by apartment living for 3 months, are going through ALL our accumulated "stuff" and donating, trashing, cleaning, and reorganizing everything - closets, attics, kitchen, my office...for one.  Two, I have set up a new workstation around my new MacBook Air and I am enabling, customizing, and learning how everything works and integrates.  Three, I have to get started on doing my taxes for what will be a very complicated tax year (2011).  Bible study and quiet time, exercise, medications (not a trivial time drain with IV antibiotics 3X a day), and cooking fill up all the rest of the available time in a day.


Congratulations to the kids and thanks for the donations in the fight against cancer!

        For reasons only known to Him, God has brought me through the valley of death and set me back on solid ground - for the time being.  He is sovereign in the universe and in my life - I am enormously thankful for His grace and His healing which was an answer to many prayers, and I am also grateful to all of you who continue to support me through these trials.  God's plans are known only to Him until they are revealed to us each new day - but we can know in advance through His word what His plan for our lives is - 

        "For we KNOW that in all things, God works for the good of those who love Him, who are called according to His purpose.  For those He foreknew He also predestined to be conformed to the likeness of His Son, that He might be the firstborn of many brothers (and sisters)."  Romans 8:28-29 (emphasis added)


      So I know that no matter what happens, whether good news or bad, whether a hum-drum day, or a mountaintop day, or a deep valley day, that God's plan for what happens that day - everything that happens that day - is that it will make me more like Jesus (conform me to the likeness of His Son) - but I have to be a willing student - and I have to be counted among those who love Him.  I believe that as I follow these great teachings, I will be counted among the many brothers.  Praise God!  To me, this is everything - 'such a great salvation' - it puts life into an eternal perspective - it infuses each day, each encounter, each challenge, each blessing - with eternal importance, with the most consequential significance as I try to 'store up treasures in heaven' and walk with the living God, Creator and Savior - how amazing!  Amazing love, amazing grace.

        Congratulations to those of you who have made it all the way through this not-so-wee-blather!  Take heart, for Christ has overcome the world.  More soon.  With love - Dan and Renee

PS...my clock now says 8:01 am    :-)