He's up the trail

Ben died this afternoon at 3:00 p.m.at home. His passing was peaceful and, mercifully, rather quick. The funeral will be at noon on Wednesday, October 20th, at the Parleys 6th Ward, 2350 South 2100 East in SLC. Our family will greet friends at that same location Tuesday evening from 6:00 until 8:00 p.m. and Wednesday from 10:45 until 11:45 a.m. Thanks again for all of your wonderful concern and support.

Bottom Line

The medical treatment “doors” which I needed to be open at this point in the journey are not open and they are no longer a future option. The lesions in my brain, despite stereotactic radiosurgery, continue to cause swelling and frequent, serious headaches which require steroids to reduce the swelling and relieve the pain. The steroids make me ineligible for the Ipilimumab treatment option. I have virtually no appetite, so my weight and energy have steadily declined to the point that my body would not be able to tolerate the very intense tumor infiltrating lymphocytes procedure in Houston. The “bottom line” is that my life expectancy is now short, so I now begin to move sooner than I would like toward the end of this journey but to the beginning of what will surely be an exciting new journey without the pain and stress of the past few months. I will be delighted to be free of pain but I shall very much miss family and friends (for a season), biking, early morning “Dawn Patrol” in the snowy backcountry, the chance to help create a respected structural engineering business, hikes to Grandeur Peak with Allison, soccer games, violin recitals, Christmases, Hebgen, etc. I hope I will be allowed an occasional “hall pass” to observe from afar the significant future events in the lives of my family.

Allison and I are deeply grateful for the love and support which we have received from medical professionals and wonderful friends and family, near and far, during the past 15 months. It has made the journey less difficult. Thank you!

Although my mortal life has been shorter than I had hoped and anticipated, I have been greatly blessed. I have a truly remarkable wife; three bright, good children with great potential; faith in the Resurrection and eternal family relationships; six siblings who have loved, challenged and helped shape me; parents and in-laws who have loved, encouraged and cared deeply for me; great, faithful, loyal friends; wonderful business associates: and more than a few sacred times when I have known, by the Spirit, who I really am, the purposes of life, and the truths of eternity. I'll be just up the trail and around the bend...

SRS - Chapter 2

Since the last blog posting, two new lesions in the brain were discovered which further delays my access to the MEK clinical trial in which I am anxious to participate.Tomorrow I will have my second SRS treatment to "zap" the new brain lesions. The pain in the groin lymph node has steadily increased, so on August 23rd we began a series of 20 radiation treatments (five per week) to see if we can reduce its size and impact. It had restricted the blood flow into my right leg by about 50%. I'm hobbling about hoping that we can get eligible for the clinical trial.
As always, we are very grateful for the love, prayers, support, etc. we receive from many great friends and family members!

SRS

On Friday the 16th I had the Stereotactic Radio Surgery procedure performed.  There isn't a lot to report, besides the fact that having your head held in one place for an hour and a half is long enough to wish you were somewhere else.

The procedure went well according to the technicians, but we really won't know anything until we do new MRIs in about 8 weeks.  Until then, it's a holding pattern until we get the MRI results that hopefully show us good results so I can get enrolled on the MEK study at MDACC.  

Thanks to everyone's continued support and kindness and a special shout out to the Team Firestorm riders who rode the 204 miles of STP this last week.  Great ride and thanks for your show of support.