In My Mind, I'm Gone to Carolina.....

Valentine's dinner at Miss Saigon Restaurant

And tomorrow,  I will be actually on my way to Carolina....this is a very special day - we got a call from our nurse at about 12:30 letting us know that my CT scan from yesterday was clean;  the small features that they were re-checking were not even there(!)  Also, my former tumor, now demoted to 'lesion' because it is not active, has shrunk again.  That could be due to residual effects of the chemo, but it could also be due to the beginning of "host vs. tumor effect", the miracle of transplants - where the new immune system attacks the cancer....time will tell.  In any case, after over 3 months in Houston, we are homeward bound.  Praise God in the Highest!

My leukemia nurse, Alice, said she had never heard of a patient going home on day 58.  How wonderful is that?

Friends, just a reminder that there are many challenges and milestones ahead that I will be depending on the Lord to get me through.  I am not 'cancer-free' yet - the 5% remaining CLL needs to be dealt with and hopefully will be gone when I come back for my 100 day re-staging.  Graft-vs-host-disease is always a threat, even years after transplant.  And of course, during the first 5 years after transplant (once full remission is established), the possibility of relapse is a shadow that most survivors live with.

I need to run - lots of packing to do!  We'll be on the road Saturday and Sunday, hoping to arrive home Sunday evening.  Will update you soon.....thanks thanks thanks thanks again for your prayers and support.  God has been merciful and answered many prayers!!   Dan and Renee

Flatrock Middle Schoolers jazzed about raising money for Cancer research

Hello friends, and a Happy Valentine's Day to you!  Today's blog is dedicated to Mrs. McElrath's class at Flatrock Middle School in Hendersonville, NC.  These young people are participating in the school's cancer research giving drive - there is a contest among the classes to see who can raise the most money for the school's donation, and they are determined to win!  The charity they are donating to is the Leukemia and Lymphoma Society - the class has taken a special interest in me (poster child, perhaps?) and actually texted this photo (and the one below) to me this morning.  The aforementioned Mrs. McElrath is my sister-in-law and teaches science at FRMS.  The Leukemia and Lymphoma Society (http://www.lls.org/) is a wonderful organization that supports patients (they give us $100 per year for treatment-related expenses) and also funds research into new treatments.  So all in all, this project is a fantastic way for youngsters to gain awareness of cancer and related issues through participation and fund raising.  As you can see, they are really excited about it!

Close-up of their poster (that's my likeness in the lower right)

Meanwhile, back in Houston.....I'll introduce some new terms to you today - these are some blood chemistry parameters that have always been measured in my blood draws, but have never been issues....representing liver function, we have Alkaline Phosphatase, Lactate Dehydrogenase, and Alanine Aminotransferase.  Representing Kidney function, we have Creatinine Serum.  We've been watching these this past week as they have all ticked above the normal ranges, but now the "kidney number"- this is what I call it - is back to normal and the "liver numbers" are trending back down also.  The doctor says these anomalies are likely caused by medications.  Also the virus I mentioned in my last entry was not present in my last blood draw, so that seems to be resolving as well.

However, my sinuses continue to be an issue - I had a CT scan last Friday evening that showed increasing inflammation and blockage up there, so the doc wants me to get checked out again by the infectious disease (ID) team (today) and the eye, ear, nose, throat (E&T) team (to be scheduled).  This will delay our departure from Houston until next week sometime - hopefully mid-week.  The good news (there's always good news if you look for it!!) is that I was put back on an anti-biotic starting last Thursday (at my request) and the sinuses are definitely improving.  The Lord is in control and we trust Him completely.  We know we'll head home in His timing.  He has been so faithful with us.  In a little while we are going out for ice cream with Bud and Nancy Simpson, a couple from the First Presbyterian Church who have been supporting us with prayer and anything else we have needed since we arrived here.  

Renee and I are trying to hit the 'best of the rest' eateries here in our final days in Houston - yesterday we hit this absolutely excellent Greek diner - very famous in Houston since 1977 (http://nikonikos.com/).  Here is a pic:

Niko Niko's

That's all for today.....grace and peace to you.  Dan and Renee

Sister Jill and I celebrating her birthday on February 1

Hello friends.....it's hard to believe it's been a week since my last post - I'd like to say that it's because the week has been uneventful, but I'm not sure that will fly.  I'll take things a step at a time, and you can be the judge.  As you can see above, Jill and I made the drive out to Galveston on her birthday, Wednesday of last week.  We had a very "gulf coast" type dinner and it was excellent.  One of Jill's student's family gave her a gift card, a 'love offering', for her trip to visit me and we used it to pay for our dinner - more love from the body of Christ.  Jill headed back to Illinois on Sunday - we had a great time together for the week - what a blessing Jill was to us!  She cooked and cleaned and took care of me with that great servant's heart, and enabled Renee to get that well-deserved week off.  That's giving of oneself.  I am generally avoiding crowds, so it was a quiet week - we did a lot of reading, watched a little TV, and had many long discussions about family and faith.    I have two truly wonderful sisters!

I got the results of the bone marrow biopsy, and they were in line with expectations - 5% lymphocytes remaining.  As I forecasted last week, this is the typical result (minimal disease) at this stage.  The idea now is that my new immune system cleans up the remaining leukemia - The next biopsy will be at about 100 days, or April 1.  Dr. Hosing said this was a good result, but I'll be honest - I don't ever like to hear that there's still some cancer!  Still, I trust Dr. Hosing and we are praising God for the fact that it's almost gone.  Technically I am not in remission until there's zero cancer, which we will hopefully verify at my day 100 re-staging.

I have felt very well in the last few days, thought I've felt a little nauseous in the last 12 hours.  That's been brief and easily controlled with an anti-nausea pill.  I just mention it to demonstrate again how quickly things can change - I haven't felt any nausea for weeks until today.  GVHD can present with upper GI symptoms, so it needs to be watched.  Dr. Hosing is planning to discharge me next Thursday(!), but I have to caution myself and everyone that there are still a lot of things that can happen - another example is that I have some virus that has been activated - again, it's common to transplant patients - and I'm getting another medication for that - Dr. Hosing said that the medication can disrupt bone marrow function which can affect blood counts.  So, I'm not counting on anything until we are in the car and approaching Baton Rouge :-)

First Presbyterian Church of Houston this past Sunday

An update on the young man that Anne Marie wanted me to visit - A-M asked me to visit him Tuesday evening - the first good day for me to do so was Friday - I called the hospital and asked for his room - they said there was no one admitted by that name - when I checked back with Anne Marie, she shared with me that Scott had had a miraculous recovery from surgery starting on Wednesday, which resulted in him being discharged that very day (Friday) and allowed him to head back to California with his parents.  So, I did not get to meet him this time, but praise God for His work in Scott's life!

It's great to have my main squeeze (Renee of course!) back in Houston.  We're starting to plan our exodus, though we know the plans can change any time.  Another good time to put my faith in the Lord and trust Him, getting my mind ready for whatever His plans turn out to be.  I want to share a video with you....it's very moving to me, and it's the closest thing I've seen on this earth to what I think worship in Heaven will be like.  The passion of the worshipers and the musicians/choir is remarkable and challenges me and my relatively sober worship style.  The second half of the video is the most inspiring.  I hope you enjoy it.

http://www.youtube.com/watch?v=TVeZRCIQzcI

Thanks and glory be to the Lord who has delivered me through the valley!  There may be more valleys ahead but I know He will see me through anything, and I also know that whatever comes my way, He has a divine and eternal purpose for it, which will be revealed to me in glory.  I know that my redeemer lives!  God bless you - I am eternally grateful for your prayers and support!  Dan and Renee

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

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

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

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