Already Mid-May

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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

Monthly Update

With Mike (not pictured!), Brodie and Lorna last Saturday

Hello friends and supporters....it's been about a month since I last posted, so time for a quick update.  In the health department, almost everything is good news....still no signs of cancer returning, but I am still struggling with 3 annoying things....1) my immunoglobulin levels are still low (but rising!) - I get an infusion once a month to boost this - it's an element in the immune system that involves anti-bodies...2) my sinuses are infected (again) - I saw an ENT specialist a couple of weeks ago and he's got me on a couple of antibiotics to try to clear me up.  This is clearly a persistent thing that is just hanging around a lot...and beginning to be a concern, in terms of how we get rid of it for good...it's probably part of what caused the fevers I had in November and December.  3) I've developed a chronic neck pain (of all things) over the past many months, that will not go away.  My neck sounds like a bowl of Rice Krispies.  It hasn't kept me from doing anything, but the fact that it won't clear up is becoming, yes, annoying.  So all that adds up to "I'm doing sensational".

I'm getting accustomed to the work routine at IBM, but my recent fevers and continuing sinus infections have kept me off of airplanes for the most part.  Planning for the big hike - 250+ miles in total - is well underway;  Mike and I have done 4 training hikes, one every other weekend.  I can really feel the improvement in my feet, hips, and shoulders.  I wasn't sure if I could prepare my body for 10 miles a day for 25 days, but it seems that there is a lot of muscle and joint memory even with 2 weeks off between hikes.  In my last 2 hikes I carried 35 pounds, but  I need to be comfortable with 45 over 10 to 12 miles before the trip - and be able to wake up the next day with minimal pain and discomfort.  We will increase the frequency of the training hikes over the coming months.

Other plans are coming together as the calendar requires - we have plane tickets purchased and a ride arranged and confirmed from Fresno Airport to Yosemite Valley on the 12th of August.  February 26th is the day that we need to apply for our trail permits - they are assigned by a lottery system exactly 6 months from the day your hike begins.  The permit system controls the number of backpackers in any given part of the park at a time, and ensures a true wilderness solitude for all.

Regarding the 250 miles...the JMT is officially measured as 211 miles, from Happy Isles at the head of Yosemite Valley, to the official trail's end on the summit of Mount Whitney.  Most people quote the length of the trail as 221, because they count the 10 miles from the top of Whitney to the trailhead at Whitney Portal.  We are not exiting the wilderness by that route, we are  going down the Pacific Crest Trail for an additional 33 miles, making our trip approximately 211+33=244 trail miles.  Throwing in the miles I will log stalking wild trout at day's beginning or end, and we will hoof it well over 250.

I continue to remember and mark anniversaries, and a year ago this weekend my sister Jill was visiting in Houston, acting as my caregiver while Renee got a week off, and got to go home to Raleigh.  We went out to Galveston for dinner on her birthday - what a precious memory of a special week.  I am thankful every day for this invaluable experience and the opportunity to serve God in ways I never imagined.  Please support me in my cause to help cure leukemia and lymphoma, as you are led.

JMT Fund Raising Page

With Jill, February 1, 2012

Sofie and Eva - Young Survivors

From the Leukemia and Lymphoma Society Website - I LOVE THIS PICTURE

Greetings and a Happy Friday to alla ya'll.....I continue to be super-fired up about my mission to help in the fight to cure lymphoma and leukemia - I saw this video which is on the LLS website and it really hit home....any childhood disease is devastating, and this story shows that children are being cured, but not all of them.  Your help is critical- thanks so much to those of you who have given - including the matching donations from our anonymous donor, we are over the $30,000 mark!!  Mike and I will be doing another training hike this Sunday.  My bod was very unhappy after my last one :-)

Check out this video -

 Eva's Story

And if you have time, check out the LLS website - or bookmark it and come back later....who knows, one day you might even see my story there.

Leukemia and Lymphoma Society - Someday is Today

HOLY MEGA GENEROUS DONATION, BATMAN!!!

Recent goofy self-portrait that seemed appropriate for this post

 Friends and supporters, I have amazing news....hold onto your hats.....this week, an anonymous donor has pledged to match, dollar for dollar, all contributions made up to this point ($13,775), and additionally, match all future contributions in the same manner up to the unthinkable amount of $100,000!!  Of course I am stunned and amazed by this kind of generosity.  This brings into view the possibility of doing something really extraordinary, and imbues my trip to the High Sierra, the John Muir Trail, with additional significance and impact in the quest for a cure.  So - any gift, of any size, is critical, and with this pledge, it's impact will be DOUBLED.
  
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To those of you who have already donated, another big THANK YOU!!  Those of you who are still considering making a donation - know that there is no hurry.  There is a long time before I hit the trail, so please take your time and consider everything carefully.  Prayer support is equally, if not more important, than financial giving, and I am just as grateful for that.

I also want to announce today that my younger sister, Jill DiCicco, will be joining my team - Jill is thinking about the possibility of holding a pledge drive of some sort at the school where she teaches in Aurora, IL.  Welcome Jill!!

PS... "joining my team" means joining in my fund raising efforts, not making the hike with me - I got some feedback that there was some confusion on that!  More soon - Dan

Kenyon and I at Yosemite, 2008 - Tenaya Lake in background