18 Months, Cancer-free!!

St. Peter's Basilica, Saturday, June 22

Hello friends, family, followers, and everyone....the last few weeks have been tumultuous but I feel like we have some through the rapids into (hopefully) some calm waters. I returned from Italy last Sunday and was reunited with Renee.  We went to the doctor together on Monday - she had been to this doc 5 times, each time with a different caregiver - and when I introduced myself to the doc as "the husband", he said "well, it's about time".  Fair enough!  Renee's hand is improving.  The heinous blister popped and the swelling is down considerably.  She keeps it bandaged now because of the exposed and broken skin, and she is working hard on physical therapy to restore the full range of motion in the finger.  I owe a big thank you to Rachel and Kenyon, Bob and Vaun, and Laurie and Mamie for taking such great care of Renee while I was on duty in Italy.

Renee's finger, 2 days after the bite.  It would get much worse.

Friday was a big day for us because I had my follow-up CT scan on Thursday morning.  You may recall that 6 weeks ago my re-staging CT scan showed a 'little something' in my lung, hence the need to re-scan this past week to see if it was still there.  IT WAS GONE.  Praise God, from whom all blessings flow!!  That means that I am now 18 months (plus a few days) post-transplant and continuing to be cancer-free.  Still is amazing to me.  In addition to the clear CT scan last week, I also registered the best blood count numbers in a couple of years - platelets, hemoglobin, neutrophils, and immunoglobulin all registered highs.

Last week also marked the transition at work from VP of supply chain transformation to procurement strategist and project leader.  Everything in my life comes from the hand of the Lord - my "success" at work included.  I felt clearly the Lord leading me to step down from VP life, at least for the foreseeable future, as a result of my various health issues over the past several months.  I continue to trust Him in all things.

The Villa Laura, Cortona, Toscana

In what seemed like an affirmation of my decision (with my doctors) to alter my work responsibilities, I was asked to be the speaker at a fund-raising dinner for the MD Anderson Chaplaincy department on October 24th.  I want to develop a selection of "talks" that I can give at hospitals, survivor organizations, churches, etc....as a ministry - so this was a really timely request for me.  I will be in Houston that week for my next restaging, which will include CT and PET scans plus a bone marrow biopsy.

The next event comes quickly - I'm going to Santa Monica (near LA) for my cousin John Skinner's wedding - leaving on the 4th of July.  I'm looking forward to playing a little golf with John's brother, Jim, who was an elite collegiate golfer at SMU "back in the day".  

Also, of course, the big trek is coming closer - less than 45 days now.  Preparations are getting more intense, both physically and in terms of equipment, logistics, and reading.  I'll provide more details in my next post.  Key links:

Link to TNT Fundraising site

Link to my blog on The Muir Project site
(scroll down to June 3 entry)

God bless all of you!!  Happy fourth of July!!

Under the Tuscan Sun Times One

Buongiorno!

I am in a small Tuscan town called Cortona, helping Jeff and Melissa Williams celebrate their 50th birthdays with some close friends and family.  Sadly, Renee had to pull out of the trip after she was bitten by a snake - a copperhead - a week ago today.  She was pruning rhododendron in our front yard when a tiny (2-ft) snake bit her right little finger.  Not knowing exactly what kind of snake it was at that moment, I drove Renee to the hospital in a mad rush.  Based on what the doctors were telling us initially, we thought we could both make the trip to Italy, but by late Wednesday, it was clear that Renee was not going to be in any state to travel.  Renee encouraged me to go and celebrate with Jeff and Melissa, who have been our dear friends since before either us us had children - as adults, we 'grew up' together.  Renee is in good hands, with Rachel and Kenyon on duty, plus Bob and Vaun, plus Laurie and Mamie....so I am on social/recreational duty here in Italy.  

Florence from Ponte Vecchio - Arno River 

This is a very active vacation, typical of the kind J&M enjoy - we have hiked, cycled, and done museum and walking tours so far and today is another hiking day.  This is actually a great training experience, in addition to being an absolutely heavenly setting.  J&M have put on a great program here at the "Villa Laura" in Cortona.  I appreciate your prayers for Renee.  I would publish a picture of her finger but it's really awful.  Love to all....Dan and Renee

The quaint Tuscan town of Gioiella, photo taken during our day of cycling through the Tuscan countryside

At the monastery that St. Francis of Assissi founded and where he lived many years, outside Cortona

June Update

Hello family, friends, colleagues.....

Self portrait on Falls Lake Trail today

It's Sunday evening, June 9th and I am sore-footed and -shouldered after a 9-mile training hike today.  I did this one solo because Mike was tied up with graduation festivities for his youngest son.  I'm trying to make sure I get "out" at least once a week now, and soon I will have to make it two.  On the fund-raising front, we've just nosed over $64,000 raised!!  Pretty phenomenal, and I am so thankful for everyone's participation and generosity.  Many of you donors have recently received a super-cool refrigerator magnet to thank you, remind you of my trip and (maybe) to pray for me.  Those magnets were a gift of a good friend from Wheaton, Brian Baird, whose company (Magnetstreet) creates a range of announcement and invitation products, primarily for weddings, graduations, and other major events.  Thanks again Brian!

Here's a link to the JMT Fundraising site:

John Muir Trail Website - Team in Training

Donation of the month goes to another family member, Jill (Rooker) DiCicco, who got her class and Aurora Christian School to do a fund raising drive for me - the kids raised over $100 for my cause.  You have to see this short video of her class:

Jill's Class Project - Dan the Walking Man

Very precious.....

On the medical front....nothing horrible, but I did come down with a fever and a mild pneumonia, which resulted in spending the afternoon of Mother's Day in the emergency room (routine precaution for transplant patients).  Given the track record I've had over the past 7 months, with infections, fevers, and liver issues, I've been able to arrange a different role at IBM that should reduce the toll that work is taking on my body and immune system.  Honestly, I need to be consistently healthy over the next two months if I am really going to go off into the wilderness for 26 days.  And, apart from the hike, I just need to find an equilibrium with work that results in strong health and no infections.  I'm very thankful that IBM has been so supportive.

Oh, I think this is really exciting....the Muir Project, a team of film-makers who are just now releasing a documentary on the John Muir Trail, have a promotional website at "themuirproject.com", and they have posted a guest blog entry that I wrote with help from my daughter Rachel:

http://themuirproject.com/journal/

That's my guest blog entry!  I encourage you to explore their site, it will be a great documentary, I am 100% confident.  I hope to get a copy of it before I make my trip.  Please check it out.

Renee and I will be doing a little traveling coming up, to Italy for a week of R&R with some very dear friends who are celebrating their 50th birthdays this summer.  Ah, the rolling hills of Tuscany await!

When I get home, I will be re-scanned to make sure that the "little thing" in my lung three weeks ago was just that touch of pneumonia and nothing else.  Appreciate your prayers in all these things - and please - let me know if I can help you or anyone you know deal with cancer diagnoses, treatments, or anyone that just needs encouragement - that's why I am here.  With love - Dan


  

Already Mid-May

Click here to check the Fundraising page or donate:

JMT Hike Home Page


Greetings and Happy Mother's day everyone.....I was blessed to have my mom and dad here in Raleigh last weekend....precious time.  Dad and I and my two brothers-from-another-mother, Scott and Keith McElrath, made a quick excursion out to east Tennessee for a weekend of fly fishing.  The weather was  sub-par for the first weekend in May - very cool, windy and some rain too....but the fish were still eating.  :-)

Bundled up and ready to get on the South Holston River

We were in a lodge sitting right on the Wautaga river, across from 100 ft bluffs....great outdoor kitchen and eating area right next to the water, complete with a fire ring which we made good use of.

Riverside retreat

Moving quickly to the medical front, my liver enzymes have been coming down, from the 425-range to the 195-range 2 weeks ago, to the 125-range as of yesterday.  So - the inflammation is resolving, but the numbers need to get down below 50 to be considered in the normal range, so we're on track and very thankful - liver problems are anxiety-producing, let me tell you.  The top hypothesis is still an unusual graft vs. host reaction to the T-cell infusions last November.  Since the numbers jumped up in February, the inflammation has lasted almost 3 months now.  Other than that, I seem to be doing pretty well.  I had my 1st 'year 2' restaging on Thursday, which is just a CT scan, essentially a lymphoma re-check.  I will probably get the results Monday (praying-trusting).  I think I may be getting some allergic reaction to the tall fescue and other native grasses that are growing high at the golf course - anyway more detail that you probably need.  I'd like to move on to fund-raising.

Awwwwww.....mama and 'baby' napping

Are you ready for this?  $62,242.20 as of this moment!!!  I am getting so pumped about this project - there are SO many great things happening.  I want to share them with you, so please be patient and read  on.  There are two special donations I want to mention - Keith McElrath hand-built a custom fly rod for me out of individually selected components - this rod and reel combo is purpose-built for the JMT hike - the fish along the trail are not real big so a light and fast rod that can make delicate presentations is ideal.  I donated $250 to the fund in Keith's name in recognition of his skill, care, and time in creating this beautiful fly rod for me.  Similarly, my colleague Dan Lofaro at IBM volunteered to tie me well over 100 flies that are John Muir Trail specific patterns - so again I donated $250 in Dan's name - the donations were made in memory of Keith's and Dan's mothers.  Another one I want to mention is that Terry Gou, the Chairman of Foxconn, also known as Hon-Hai Precision, which is the largest contract manufacturing company in the world, made a generous donation through the foundation he established in memory of his brother Tony, who was taken by leukemia several years ago.  I have known Terry since I started buying electronic parts for IBM back in 1996.  Terry and I have stayed in touch and share a lot through the devastation of leukemia.

A couple of other cool updates - an autologus transplant patient named Gideon Hodulick contacted me - I love these "you don't know me but"- ....he found my website and drew inspiration from my story and my plans to hike the JMT.  He posted an entry on his journal at Caring Bridge called "Bone Marrow, Stem Cells, and John Muir"....here's an excerpt:  "I was encouraged this week when I stumbled upon a LLS fund raising page about a man that is planning to be the first stem cell transplant survivor to hike The John Muir Trail. This trail is over 212 miles and goes thru the Sierra Mountains. Myself, Kris and the kids got to see some of the trail in Yosemite back in June and the landscape was amazing with just the little bit that we saw. So now I am inspired to finish hiking the 35 Catskill high peaks that I started with my son last year. I was also encouraged by this mans faith. He had many set backs but his faith in God never wavered. Even 15 months after his transplant he is still dealing with health issues, but he is trusting God to carry him through."
I hope you will join me in praying for Gideon and his family.

I was also contacted by a man named Robert Hanna, who is John Muir's great great grandson....here's what he said in a facebook message to me:

 A friend of mine passed along your story to me and I wanted to personally reach out to you to tell you that your story is inspiring and I will share it with everyone I know.

I invite you to please take a look at my company's website at:www.rangeoflight.com and check out what we're all about.

We are the direct descendants of John Muir and I can assure you that my great-great-grandfather will be alongside you all throughout your journey. If you're up for company, perhaps I can meet up with you at some point of your journey.

All the best,

Robert Hanna

That's amazing.....one more thing I want to share with you - I've made contacts with a group of artists, filmmakers and writers who hiked the JMT a couple of years ago with the goal of creating a unique documentary about hte trail - their web page is The Muir Project and the film is called "Mile....Mile and a Half".  Ric and Jen Serena and Jason Fitzpatrick are the producers and were early contributors to my page.  I wrote a guest blog for their web site and I will let you know when it posts.  I encourage you to click that link and check out a couple of the trailers they have there - very beautifully done.

Well I suppose that's quite enough - there's more but I will save it for next time - please donate if you haven't yet - we are still getting 100% matching for every donation from our anonymous foundation.  You are making a difference in saving lives!!  Another huge thanks to all who have joined in!!  Dan

April Update

Interesting Video/Water Sculpture/Feature at Chicago's Millennium Park

Greetings everyone - hope everyone had a Happy Easter, we certainly did.  We didn't do anything special or go on vacation, we just always enjoy the celebration of what Christ did on our behalf.  On Saturday I listened to a recent debate between Dr. William Lane Craig and a John Shelby, a bishop of the episcopal church who does not believe in a literal resurrection....Dr. Shelby is a member of a vast community of  scholars who call themselves "The Jesus Project", and who essentially reject all biblical miracles as myth.  My view is that the big bang is not a myth, and if the Creator can bring all matter, energy, mass, space, and time into existence out of a "singularity", then a little resurrection would not be a problem  :-).  Dr. Craig is a leading scholar of the new testament who takes the view that the resurrection really happened as the bible describes (my view also).

So today is a big day up in Huntington, NY where my sister Laure is raising money by setting up a booth at her Church's annual charity event - she is selling dinner events (she does all the cooking) and also tidbits that she cooked yesterday.  She had her friend record a video and you must see it here:

Laure's Charity Booth Video

She's amazing - she worked her tail off to get the booth ready, cooking all that stuff...and she'll work again at least 2 more times when it's time to cook the dinners she sold.  She is loved at her curch for all her service to the congregation - she's a deacon or something - and she makes us all tired watching her handle her career, her children, and her volunteer work at Church.  This event will raise about $1,000 for my cause.  She's a champ and I am a lucky little brother :-)

Moving on to the medical front.....I am becoming like a character from an episode of "House", the medical drama about a mad-genius doctor and his team of interns who solve a medical mystery each week.  I actually need Dr. House' help.  I've been to a gastroenterologist and an infectious disease doc in the last week and neither of them have a clue what is causing my liver inflammation.  My liver is working properly but the inflammation needs to be dealt with or it could cause damage which can have long term consequences.  At this point we know little more than we did 3 weeks ago - it's either an undetermined infection (Hepatitis A, B, and C, along with CMV, EBV, HHV6, lymphoma, leukemia, cirrhosis, and I don't know-what-all have been ruled out), or a graft-vs. host effect from either the original transplant or from the T-cell infusions that I received in November.  I've had more blood drawn today and we're going to test for another set of fungal and viral infections, and if those tests are negative, Dr. Hosing is going to recommend that I start back on tacrolimus (immunosuppressant), to see if that reduces the inflammation (which would be indicative of graft-vs. host disease).

Meanwhile, I feel fine and continue to get my regular workouts.  Mike and I have not hiked in a couple of weeks, so we're heading out tomorrow on a 10 miler.  The John Muir Trail fund raising continues apace, with about $7,000 raised this week - some incredible donations from some of my colleagues at IBM, plus a big-ticket item from a Taiwanese businessman that I have been acquainted with for over 15 years.  Once those donations are logged and matched by the anonymous foundation, we will be north of $50,000!!  It's amazing, and if you have not given yet, I encourage you to jump in with any amount at all - every little bit helps.

I also encourage you to visit the LLS website (lls.org) to see their newest campaign, "Someday is Today".  

Thanks as always for your prayer and financial support.

John Muir Trail Website

Liver Update

The above photograph is of "Evolution Valley", one of the stunning and extremely remote slices of paradise we will see on our hike in August.  Please check out my video update.  There's news.  Glory to God, always, regardless of our circumstances.  Dan

March 16th Update

John Muir Trail Website

March Update

Falls Lake Trail, Training Hike

Dear Friends, my update this month will be a video.  I tried to upload it directly to my blog but was unsuccessful and I'm out of time allocated to this project (argh.).  So without further ado, please click this link:

Dan's March Blog Update

As always, you can make a donation to the Leukemia and Lymphoma Society at my John Muir Trail webpage here:   Dan's JMT Fundraising Page

For a fantastic story about a recent life-saving, miraculous new leukemia treatment, which the Leukemia and Lymphoma Society funded with large contributions over many years, click here:

Breakthrough Leukemia Treatment (New York Times)

God's best to all of you....I hope you enjoy the video.  Dan