Saturday, May 21, 2016

Bay Area Brain Tumor Walk Journal

Jenifer Prentiss, Walk Coordinator,
looking characteristically cheerful,
busy, organized
6:20 am Jenifer had asked the planning committee to report for duty by 6:30.  This blogger steps out of character to arrive 10 minutes early. Of course Jenifer and others are already there, busy unloading a small U-Haul truck, carrying heavy boxes to open canvas structures called "tents".  There are only two dollies, and it's actually hard physical labor.  A florist donated a generous supply of cut flowers for the Honor and Celebrate ceremony (new this year).  Absurdly proud of myself for carrying a heavy box of said flowers from curb to tent, counting steps.

8:00 am No more boxes to carry.  We set up Honor and Celebrate, arranging flowers in buckets and vases, displaying wristbands and NBTS flyers on tables, setting out Sharpies so people can write remembrance messages on a canvas sheet.

8:30 am The Honor and Celebrate Tent looks respectable, and walk participants have started to arrive.  Somehow it all came together — or did it?  A coffee donor had still not been found as late as a week before the walk, and this blogger is tired and uncaffeinated.  He casts a longing eye at the refreshment tent, and notices large hot liquid dispensers on one of the tables.  Saved!
Epitath by Merrit Malloy

Suze Restuch with
this blogger at Honor and
Celebrate.  Suze lost
her brother Jonathan to
a GBM in 2012.
9:10 am The Honor and Remembrance ceremony is a change of pace for the Walk, which has been centered on stories of survivors, and of research breakthroughs. Yet the actual mean survival time from diagnosis for glioblastoma multiform (GBM), the most common type of malignant brain tumor, has increased slowly in recent decades, and is currently about 14 months.  How would a widening focus be received?  Well, it would seem.  About fifty of us gather to hear Margaret Davis play the harp, and then hear Susan Conrad, UCSF chaplain, lead a responsive reading of Epitaph by Merrit Malloy.  Many people write messages on the canvas.  Tell Jean again that I love her.

Pamela Hamrick with Avery
in Honor and Celebrate,
seated in front of the canvas sheet
with the messages.
9:30 Talks from the podium, Pamela Hamrick MC.  She hold her infant daughter Avery as she explains how she became involved with brain tumors after her brother was diagnosed with a 

We hear from Sara Rey, a remarkable survivor who has lived with a GBM for over a decade.  Sara explains that she has issues to overcome, such as with speech — her husband Toby is with her on the podium, for support.  When she's feeling discouraged, she tells herself "I will be well, I will survive," and that helps.

Josie Hayes, Ph.D., tells the story of how she came to UCSF.  She became interested in brain tumor research when she was a graduate student in the UK, and found a local charity willing to fund her doctorate.  After the received her Ph.D., she looked around for the "best brain tumor research lab in the world" — and feels she found it UCSF's Costello lab.  She described the lab's current work in immunotherapy (training the patient's immune system to attack tumor cells), and targeting tumor cell "immortalization" (that is, the mechanism allowing tumor cells to acquire the ability to resist aging processes that destroy normal cells().

After her talk, this blogger asks Dr. Hayes if she has any promising clinical trials to recommend to patients who get the dreaded news that their tumor has recurred, and that they have no more FDA-approved treatment options.  She replies that depends on the patient but … immunotherapy is a promising new approach, and that UCSF's clinic directed by Hideho Okada is the "best immunology clinic" in the world. Dr. Hayes considers the promising new  treatment out of Duke, based on the polio virus and featured on 60 minutes, to be in the general category of immunotherapy.  This blogger popped the question: if Dr. Hayes considered her work in a mood of realistic optimism, what would she expect, a few years hence, to be the mean survival time from diagnosis for GBMs? "28 months."  A 100% increase from the current state of the art.

10:00 am The walkers start the course.  This is our first year at Crissy Field, after years of having the walk at Speedway Meadows in GG Park. This blogger hears only favorable comments about the change: the setting is spectacular, and affords a panoramic view of the walkers en route; parking is easier. We need some encouragement, because fund raising is down from to about 300k from about 400k at the same point last year.  Our explanation is bad luck and timing: two of the top fund-raising teams decided to take 2016 off, and another stayed on the sidelines after one of its key member was diagnosed with cancer. But the 2016 books aren't closed yet, and we're hoping for a great 2017 on Crissy fields.

Starting the walk

1 comment:

  1. Enjoyed reading this, remembering my participation in this walk in 2013. Haven't been back to Crissy Field in a few years. My brother collapsed there while on his daily run last summer, and although he survived the trip to Cal General (?), he passed a couple days later - cardiac arrest/V-fib. So many ways to go prematurely, but then so many ways to try and fully grasp each moment. Take good care.