Tuesday, January 31, 2012

My sister Jill with husband Mark, Michigan's Upper Peninsula, summer 2011

Evenin', everyone.....there is a lot to report and a lot of answered prayer to be thankful for today.  I'll get to that, but first, I did make two trips to the airport on Saturday, one to drop Renee off for her week of home leave, and one to pick up my sister Jill, who is acting caregiver which made it possible for Renee to have the week off.  Jill loves to cook, and she is deep into the role of servant this week (actually it's probably easier here for her than at home, where she has 4 sons and a husband to cook for).

So Jill and I are having a great time, and Renee is also having a super time at home, having been reunited with Shiloh, Lorna, and Brodie, plus Kenyon and Rachel (she'll be home this coming weekend), and of course her family and friends.  I'm a little jealous!

Jill is having a birthday tomorrow and we're going to drive out to Galveston to celebrate - hoping to have a seafood dinner somewhere near the gulf.

On the medical front, you may remember that I was discharged from the hospital last Monday, so it has been 9 days now without fever, which is really good.  I did have one brief low grade fever of 100.2 but that is below the threshold for calling the doc or going to the hospital.  Thankfully, it dissipated quickly and didn't come back.  More importantly, the lymphoma portion of my 30 day re-staging was completed and Dr. Hosing declared me to be in a complete remission(!)  Wow - really GREAT news.  I still have a small (1.6 cm by 2.3 cm) - and getting smaller - remnant of the tumor I had, but just as was the case prior to the transplant, it is not active, so it's considered in remission.  The last step in the restaging process is a bone marrow biopsy, which I had today - the result of that test will tell us if there is any remaining leukemia in my marrow, and if so, how much.  I've been told that it often takes 100 days for all the leukemia to be eradicated, so a zero cancer result is not terribly likely for this test.  I'll report when I have results.

Secondly, a blood test that looks at stem cell DNA showed that I am 100% engrafted, meaning all my productive stem cells are the ones that Laure donated - my "old" stem cells have exited stage left.  This indicates a highly successful transplant and a fast transition to the donor cells.  This is an explicit answer to many prayers, including the night of our prayer meeting back home (Nov. 27th), where we prayed that the Lord would grant us a perfect transition from my cells to Laure's.  How awesome is our God!!

Continuing with the good news, my counts have been increasing all week - my white count is at a post-transplant high of 6200;  my platelets are also at a post transplant high of 115,000, and my hemoglobin is at 11.4, again, a post-transplant high.  Additionally, I have felt better and stronger the last 2 days that I have at any time since before the transplant.

Finally, I asked Dr. Hosing when I might be going home, assuming that I maintain my current course and speed (i.e., no fevers, no GVHD), and she said she is prepared to release me at the 60 day mark, subject to those stipulations.  That's in less than 20 days!!  I don't want to get my hopes up, but that is something to pray for.

One of my new friends from the Presbyterian Church here (she's the chaplain to the Texas Medical Center) has asked me to visit a young man (17 yrs old) at MD Anderson who has lung cancer and just had a large portion of his lung removed.  I would really appreciate your prayers on this.  I am very anxious about it, but I know that one of the purposes of suffering is to prepare a person to minister to others who suffer.  I pray that I can somehow serve this young man and in so doing, bring honor and glory to my Father in Heaven.

Well, that's a lot of news, a lot of good news, and a lot of answered prayers - I cannot thank you enough for praying for us and caring for us through this ordeal.  I simply could not have asked for more than the blessings that have been granted.  No one knows what twists and turns the road ahead will reveal, so we just ask for our daily bread and trust in Him, while being grateful for all the grace and a mercy He has shown.  With love - Dan, Renee, and Jill

Tuesday, January 24, 2012

The view from room 1743, sunset on Sunday evening over the Texas Medical Center

After 9 days and nights, I am OUT of the hospital!!!  Yee Haw!  Now if I can just stay out!!  Actually I am in the outpatient clinic now, but that's a small inconvenience compared to being incarcerated.  I think my overall health/recovery progressed while I was in the hospital, even while we fought the fever.  I was admitted Saturday evening, the fever was subdued from Tuesday around 6 until Thursday around 4 in the afternoon, when it came back to around 100.3....that caused an extension through the weekend - fortunately that flash didn't last long and I was fever-free Fri, Sat, and Sun...ergo, my discharge Monday.

My blood counts were sort of in the doldrums when I checked in, but towards the end of my stay they began to recover.  Today my white count was 4.6, without the help of nupagen - that's the highest it's been since the transplant.  My hemoglobin was a strong 10.9 and my platelets jumped to 68,000 from 54,000.  They have been going up for several days, after hitting a low of about 21,000.

All else is well, my parents will be here through tomorrow;  Renee begins her "break" to Raleigh on Saturday and my sister Jill will be here Saturday.

Thanks be to God for the patience and peace He gave me while I was in the hospital and for the elimination of my fever - He answered many prayers - thanks so much for yours.  Dan

Friday, January 20, 2012

ChChChChanges........Turn and face the strange CHANGES

Summit of Mt. Mitchell, Dec. 30, 2006-ish

As I was saying a couple of days ago, transplant-land is an unpredictable place.  The latest example is that yesterday at about 5 pm, my fever made a cautious reappearance - nothing persistent or very high, about 100.3, then went back below 100 and then popped up again during the night to 100.2.  I was afebrile all day today but my doc is going by the book and so I will be here over the weekend.  I agree with the doc; as much as I want to get out of here, in my head I know that it would be foolishness to take any chances, plus, I didn't travel 1200 miles to come here and argue with the best medical team in the world.

So, I have dived deeply into the Word for guidance, patience, and spiritual wisdom so that I can see a small part of God's plan for this latest turn of events.  I don't really have to have a specific answer, I just have to remember the great truths that apply to our daily lives - that God loves me more than I can know or imagine;  that He is preparing me in this brief life for an eternity of fellowship and joy in His presence;  that He is teaching me qualities and conforming me to the image of His Son;  that all the pain and frustration of having cancer will be vastly more than redeemed in Heaven- those sorts of truths.  When I dwell on these eternal truths, another day (or another week) in the hospital shrinks to its proper perspective.

I'm still feeling very well, the transplant itself seems to be going very well, we just need to completely subdue this infection/fever and hopefully move back into outpatient status.  I feel a great deal better now than I did last week, despite the fever or infection, and I'm eager to get back into the gym or out into the park.

Perhaps next time the doc puts in a discharge order, I will refrain from posting until I am back in the apartment.  Actually, not perhaps - that is what I will do :-).  Praying that you will all know the beauty and reality of the eternal King, the Lord Jesus.  Dan

Thursday, January 19, 2012

Cool Head Luke

Sunset from the balcony of Cheeseburger in Paradise, Lahaina, Maui, 2002

Good news everyone - I've been afebrile (that means not having a fever) for nearly 48 hours now and the rounding doc has issued the order to discharge me tomorrow!!  I will have to give myself intravenous antibiotics 3 times a day, using a pre-measured vacuum pump, but no complaints.  My mom and dad are back in Houston for a few days and will make their way back north early next week.  After that, My sister Jill will be here for the week of Jan. 28 - Feb 5, while Renee take a much needed and richly deserved break back in Raleigh.

This fever was a little more stubborn than most, and didn't respond to the antibiotics until late Tuesday night.  The doc suspects my sinuses are the culprit and also believes that I will continue to struggle with them, unless we keep hitting them hard with a-bs, hence the 3X per day regimen.  If you want a good laugh, picture me with three little connectors dangling from my upper chest (the tubes disappear into my skin), and two bottles of antibiotics attached to two of the 3 connectors.  If that doesn't sound funny, maybe I'll just have to post a picture of it :-).

To say the least, I am really looking forward to getting back outside, into the park, the gym, the local restaurants, etc etc.  This was a tough setback but as we prayed, it turned out to be routine.  Anything can happen in transplant-land, so our daily prayer is to get through each day with no surprises, and a little more strength and higher counts....It will be interesting when I see my outpatient team on Friday and hear how soon they will return me to my former status of 2X visits per week.....the may want me to start over.

Thanks to everyone for your faithful support - any questions, please let me know - God's blessings to you and yours.....Dan

PS please make a note of my new email address, dkrooker@gmail.com

Monday, January 16, 2012

Marlborough Vineyard in New Zealand, January 2003

Hello Friends.....well, we've always known that stem cell transplants are unpredictable and one's situation can change rapidly.  Saturday afternoon I felt warm and discovered I had a fever of 101.5.   The protocol is for patients to go to the hospital with a fever of over 100.5, so Renee and I set off for the MD Anderson "emergency center".  We arrived at around 6pm and my transplant team (via the ER doc) said I should be admitted to the hospital.   I arrived at my room at about 2 am - I was pleased as punch at the efficiency of everything - NOT!  MD Anderson is a fabulous hospital but they have not achieved perfection yet - something to work on!

So here we are, taking new IV antibiotics to fight the fever and infection (wherever it is), and hanging out.  Given where I was 4 or 5 days ago, this feels like a major setback, but medically speaking, it should be pretty routine.  

Faith isn't always easy, and Renee and I are working to get re-centered in the Heart of God and trying to shake off our disappointment and our fear.  Thank you for walking with us.  My counts have fallen back a bit, please pray they would have a resurgence  - Thanks to all......Dan and Renee

Friday, January 13, 2012

Renee and our "Rent-a Beagle",  Sydney

Salutations, ladies and gentlemen!  Today is Friday the 13th and day 23 of my post-transplant life.  One way to measure progress for the transplant patient is how the nursing staff schedules your clinic visits - as I've said, the outpatient visits start out as daily, including weekends.   I had daily visits for exactly 5 days before I was given a 'day off' this Tuesday.  I was back in the clinic Wednesday, Thursday, and today, but yee haw, they have given me the weekend off!  I will be in the clinic 3 days next week, and then they are putting me on a Monday-Thursday schedule.  This is really a great statement about how my body is taking the new cells.  Many, many people have been praying for this outcome and prayers are being answered!

A word about the days off - I still have to get my one liter of saline/magnesium fluid, plus my antibiotic, every day.  Renee and I have been taught how to use a portable, battery-operated IV pump, so I get the fluids at home in the apartment.

Today's photograph was taken during a lovely walk that Renee and I took with a beagle that belongs to a friend of Renee's sister's colleague's daughter-in-law.  To clarify - Renee's sister is a teacher in Asheville.  She has a co-worker who has a son who lives in Houston - that son's wife, Leti, contacted us and invited us to dinner, and in the conversation, Renee mentioned that she missed her dogs.  Leti, unprompted, set about trying to find some temporary dog scenarios where we could dog-sit or something - she found one of her friends with this friendly beagle that was happy to loan Sydney to us for an afternoon.  We walked for about an hour around Hermann Park - the temp was about 70, with a nice breeze.  Another great example of the body of Christ at work.

So again, everything is going well;  I am still working on the sinuses but they seem better.  Still feeling weaker than normal but the nurses assure me that I am way ahead of the game.  Thanks be to God who is the Great Physician and Healer!

Next week, I will have several tests to "re-stage" my cancer.  Re-staging means taking CAT scans, Pet scans, bone marrow biopsies, etc to determine whether there is any residual cancer or not.  In my case they are planning to do restaging at 30, 60, and 90 days.  I'm told that even if there is some residual cancer (probably CLL) at 30 days, it often continues to dissipate and disappear at 60 or even 90 days.  Still I would appreciate you praying for "no cancer" by the end of next week.....thank you so much.

Just to keep everyone on their toes, We have new addresses:

email:  dkrooker@gmail.com

3 Hermann Museum Circle Dr.
apartment 1208
Houston, TX 77004

phone (713) 529-2331

Everyone have a safe and enjoyable weekend!   Dan

Sunday, January 8, 2012

Outpatient Life

My first day in the Gym - Jan 6
Hello Friends, it's January 8th, and day 18 of my 2nd life :-).  So far, things have been quite routine - I have been in the outpatient clinic each day, and the only treatment I am getting is an IV antibiotic for my sinus congestion/infection which takes 30 minutes, and a 3 hour IV infusion of magnesium.  The anti-rejection drug, tacrolimus, drains the body of magnesium, so it has to be replaced.  So each day, I come here, get blood drawn, and go to the clinic for these fluids.  All told it takes anywhere from 4 to 6 hours, depending on the waiting times.  The great news is that I haven't needed any other support or treatments, such as blood or platelet infusions.  Let's just say that Laure gave me some awesome stem cells!!

My counts have been really good - my platelets have gone up 4 days in a row;  my hemoglobin has been mostly up, and is around 10 now;  and my white count has been a little up and down, but has responded very well to the nupogen shots I was given and was at 3.5 yesterday.  Wow - I truly could not ask for more, and to God be the Glory!

Having said that, I am still weak and fatigued, which can be frustrating though perfectly normal.  I have no idea, and I am not sure the docs do either, how long it will take for me to regain my strengtrh and stamina, so it's another opportunity to wait on the Lord and be patient.  All in all, I am in excellent shape for this point in the process.  Praying for this to continue along this path.

Renee and I moved two days ago, with my parents' help, into a larger apartment with 2 bedrooms - not far from the old one, maybe a hundred yards or less.  New number is #1208, everything else the same (3 Hermann Museum Circle, apt 1208, Houston TX 77004).  We also have a new phone number (713) 529-2331.  It's really nice to have the extra space, especially when we have visitors.  Speaking of which, through January 7th, we had visitors in town every day except for 2.  Renee and I are actually looking forward to a couple of weeks on our own. 

As you see in the self-portrait above, I have started going to the gym and doing some easy aerobic stuff like treadmill or elliptical, along with a few sets of weights - taking it easy, but getting back into the routine.  Oue best to everyone - your support is life giving!!  Dan and Renee

Wednesday, January 4, 2012

Phase 2 Succesfully Concluded!


Dear Friends, I am typing this from our apartment in Houston.  To my surprise and delight, my docs discharged me from trhe hospital today.  They told me yesterday that their intent was to discharge me today, but I did not want to post until it actually happened, since I am still fighting a sinus infection - I thought it was too good to be true.  The above pic was taken the moment that they disconnected my IV line - which had been connected for 3 weeks, meaning that I could not move anywhere without dragging along my IV pole.  It's a great feeling to be 'untethered' after all that time.  My parents arrived yesterday from Illinois - we had chinese food in the patient lounge last night.  They will be here until Saturday, then spend a couple of weeks visiting friends in the state, and then come back through Houston before heading back north.

Leaving the Hospital today at 1:30 PM
So, now we enter Phase 3, which is outpatient care here in Houston.  Initially, I will be going to the outpatient clinic (dedicated to transplant patients) on a daily basis for blood counts, transfusions if I need them, symptom and side effect management, and graft vs. host disease (GVHD) management, again if necessary.  Over time, the daily visits will be reduced in frequency until eventually they give me my walking papers and we can go back to Raleigh.  This phase is expected to last about 8 weeks.  Sadly, they have told me that I am not cleared to play golf yet :-(.  In general I feel OK, not 'normal', as I need more sleep than normal, I am not at full physical strength, and I am fighting this sinus infection.  On the plus side, I am eating normally without anti-nausea medicine, I have not run a fever, I'm sleeping well, and I don't have any other symptoms.

As I make this transition and reflect on the path that I have walked over the past many months, I look back on many trials and triumphs, and I know there will be many more of each ahead.  I am eternally grateful for the many people who have walked with me, encouraged me, prayed for me, shared my story with others who are now praying, and all who have helped love me through.  More than anything though, as I look back and forward, I am grateful that I have walked with Jesus all the way - trusting Him in bad news and good, tough days and joyous days.  So if you're still with me, I wanted to share this song with you.  It's an old hymn, written by Fanny Crosby (died 1913) that Rich Mullins rearranged and performed - "All the Way My Savior Leads Me".  God Bless you.  Dan


Monday, January 2, 2012

Happy Productive Stem Cells

A quick update friends.....my white count was up today to 2.7, so the new cells are cranking out product!  The docs are starting to talk discharge, focusing on later this week.  It's all based on my medical status, so I need to stay well and keep producing cells....but it is looking very positive.  You can join us in praying that I would not have any or minimal 'graft versus host disease', or GVHD.  God bless you all!   Dan

Sunday, January 1, 2012

Big News!!

Meet the lovely and talented Dr. Nina Shah, my 'rounding' doc for the last 2 weeks

Happy New Year everyone!!  Today we passed a critical and key milestone in the treatment process, as my white count jumped from .3 yesterday to 1.2 today.  This quantum leap was accompanied by bone pain that is a signature of high white cell production.  When I saw Dr. Shah this morning, she asserted her belief that my grafting-in process had begun - so we have been praising the Lord all day today.  The bone pain I have been feeling on and off since about 6 am today is the epitome of "good pain".  Dr. Shah predicted that I would be "outta here" in a week, which would be two weeks ahead of schedule (but of course we are not counting any chickens yet).  Awesome!!!!

The New Testament teaches that the followers of Christ - the Church - are His body in the post-resurrection world.  What we have seen here in Houston is a living example of the truth of that teaching.  The body of Christ has reached out to us and wrapped its arms around us and loved us.  The members of the First Prebyterian Church of Houston have sent ministers to visit us, sit with us, pray with us, and just support us, and they come back regularly.  There are two "Stephen's Ministry" people who have been assigned to Renee and I and we meet individually once a week.  Another lady who is part of their local outreach program comes by to chat and pray with us.  Another pastor who runs a ministry called Presbyterian outreach Program comes by regularly.  Here we are, strangers in a strange town, going through a difficult trial, and these people have committed to ministering to us and befriending us.  This is the reality of the body of Christ in action.  It is inspiring!

As I exit 2011, I imagine that I will always think of it as 'the Chemo Year'.  I started chemo in Houston on January 10th and went through 9 treatments altogether, with the last dose coming on December 19th.  I pray that 2012 will be remembered for being the first year of being cancer-free.  In addition to the chemo of 2011, I will also always remember the love and support both Renee and I have been blessed with - from family, close friends, neighbors, co-workers, and even strangers.  Above all else, I will remember the spiritual journey I have been on and the faithfulness of my Lord and Savior throughout.  Whatever uncertainties the future holds, and there are many - the most important things are known and are certain - that the Lord will never leave or forsake me - that nothing in all creation can ever separate me from the love of God in Christ Jesus - that because of what Christ has done, I stand forgiven and blameless before Him, that he has a plan to prosper me and give me a future - and many more.   

I pray that God will bless you and your loved ones in 2012.