Saturday, May 11, 2013

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


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