#BTFBenefit2014 and the Number 10

#BTFBenefit2014 and the Number 10

Reba, Gregg, Lynora, Daniel, me, Jim & Caroline

Something absolutely wonderful happened on Friday evening. We gathered with friends and family among 1,700 people to celebrate the tremendous achievements of the Ben Towne Foundation's first five years in existence.

Reba and Bill

Two members of the TEAM BTF Ride Across America Team

In the space of 10 minutes, over $1,600,000 was raised to support childhood cancer research at the Ben Towne Center for Childhood Cancer Research, with the help of Joel McHale, who hosted and kept us all laughing.

Reba, Joel and me

As always, Carin and Jeff Towne and Dr. Michael Jensen spoke movingly, beautifully and with passion about their mission. A brief video shared the story of one of the most recent recipients of Dr. Jensen's T-cell therapy.

In addition to the wonderful sum raised that night, we celebrated these milestones:
- two clinical trials were launched for T-cell treatment of leukemia
- a third clinical trial is ready for submission, for the treatment of neuroblastoma
- 10 PATIENTS ARE IN REMISSION! Stop right there. 
 Ten patients who had experienced relapse, who had no other treatment options - whose hope for a cure was completely exhausted, and were facing death - those ten children are now in remission.

Ten families are not heartbroken today - parents, siblings, extended family and community - have their precious, beloved child with them. Ten families did not have to sign "do not resuscitate" forms, did not have to request hospice care, did not have to plan a memorial service, pick a headstone, face an empty bedroom.

Ten.

I was so happy Friday night that I could not go to sleep.

In no way does this great accomplishment reduce the pain of missing Katie, or change the fact of her absence in our home, our lives and and in our future. And yet...
And yet, for me, this is a kind of justice for her killer. This is arresting the culprit. This is going to prevent this tragedy from being repeated, over and over again.

Not only that, but T-Cell treatment does not endanger the future life of the patient, because it does not cause organ damage, reproductive damage, hearing loss or secondary cancers, the way that traditional chemotherapy and radiation do. This treatment uses the body's own immune system to heal itself, and the possibilities for its use are endless.

With research, it can be applied to different kinds of cancer, and to adults, as well as to children. All we need to do is continue to find funding for the work to continue and expand.

Tonight, some parent who thought their child was going to die, is instead going to tuck her into bed, and kiss and hug her "good night." It won't be me and my daughter, yet I am happy for that family - for all ten of those families who have received this gift from Dr. Michael Jensen and his research team at the Ben Towne Center. We will continue to support this work through the Katie Gerstenberger Endowment for Cancer Research, and through the Ben Towne Foundation, and in any other way we can.

My friend Lynora and her son Daniel came all the way from Alaska to join us!

Lynora, Reba and me - as Reba says, "Mothers in Arms"

I am asking you to help us spread the word about this, and - if you are able - to join us in supporting it. 

100% of every penny and dollar which you donate to the Ben Towne Foundation for Childhood Cancer Research goes to research. There is not one cent of overhead cost deducted from your donation; every bit goes to funding research. Please share this happy news with your community, and join us! As Ben used to say, "Come on, everybody!"

*if you are an Instagram user, you can see more photos of the event at #BTFBenefit2014

Field's End Writers' Community

"At the field's end, in the corner missed by the mower
Where the turf drops off into a grass-hidden culvert,
Haunt of the cat-bird, nesting-place of the field-mouse...
One learned of the eternal..." - from "The Far Field," a poem by Theodore Roethke

You may recall reading here about a writer's conference I attended two years ago on Bainbridge Island at lovely IslandWood. The organization which hosted the conference is called Field's End, and local author David Guterson is one of its founders. I attended with a bit of fear and trembling; it felt presumptuous to call myself a "writer," just as it has always felt presumptuous to call myself an "artist," though I majored in art in college and have many years of experience in creative expression.

Criticism of the product - whatever I produced - is part of the classroom experience for an art major, and I internalized all of the many critiques I received, until I began to experience fear and blockage when faced with a blank canvas...so I stopped painting altogether. That's what I call an artistic injury.

There is a wonderful painter/teacher named Flora Bowley whose writing and approach to art (and living) is helping me to re-visit this injury, and to breathe healing energy toward that place. I hope - someday - to attend one of her workshops, and for now, am benefiting from reading and reflecting on her blog postings and newsletters.

Back to writing: after Katie died, writing became a lifeline for me, and I grabbed hold of it, writing freely and frequently. Writing has always felt like a natural outcome of my inclination to talk and to process my feelings verbally. Though I wrote regularly on several blogs (this one, and three on my sidebar: Katie's Comforters Guild, the Katie Gerstenberger Endowment and Hopeful Parents), I didn't think of myself as, nor dare to call myself, a "writer."

I wrote and published "Because of Katie," served as a speaker, was published in magazines, but still the inner critic slid over from the painter-side of my brain and whispered, "...But you SELF-published your book; you're not a REAL writer, yet!" So I was hesitant to even attend this workshop. Thanks to encouragement from warm-hearted friends who also wanted to attend, I went anyway - and loved it.

A post-writer's-workshop function

I've since put my name on the mailing list for Field's End newsletters and email, and due to the inspiration received at the conference, my friends and I formed our own writing group, the "Sh*tty First Draft Writing Group" (the name is a nod to Anne Lamott's advice to budding writers to get your fanny into a chair and make "sh*tty first drafts," saving the editing for later).

A few weeks ago, Field's End put out a call for volunteers, and though I couldn't attend the meeting to learn what they needed, I replied to the call and arranged to meet two of the members of the Core Team afterward. I thought I might be able to help with hospitality, registration and whatnot. It was fun to meet both Barbara and Kathleen; they are welcoming, encouraging, kind and open-minded. We shared a lively brainstorming session, and the result of that meeting is this: I was invited to join, and am now a member of, Field's End's Core Team! It's an exciting step for me.

Field's End recently sent out a questionnaire to its mailing list and received 400 responses; that is a sure sign of a vibrant writers' community! Their mission statement includes these words:

"Field's End serves the writers' community and nurtures the written word through lectures, workshops, and instruction in the art, craft, and profession of writing."

The core team seeks to encourage writers who have not yet started, and desire to do so, as well as those who are farther down the path of writing; those who have self-published as well as those who have a publisher. It's a welcoming organization, not a snobbish/exclusive one, and I sense that there will be no artistic injuries inflicted here; perhaps even repair and restoration may come to those who have been silenced by an inner (or an outer) critic. I can hardly wait to see what unfolds.

"See I Am Doing a New Thing," continued...

You can read all of the postings about my life-changing week at Rancho La Puerta  

here, here, here , here and here.

"See, I Am Doing a New Thing" - Part One

 “…See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” - Isaiah 43:19 NIV

I just returned from a trip - a journey is a more accurate description – to Rancho La Puerta in Tecate, Mexico. It was a life-enhancing week of reflection, new activities, delicious organic food in healthy portions, gentle self-care, fellowship and learning. 

Read along if you want to hear what it’s like to step outside of your regular lifestyle, off of the merry-go-round, unplug from “the grid,” and do everything with an open mind and heart in a warm, welcoming atmosphere.

Before I embarked on this adventure – a couple of months ago – I was talking to Katie in my mind one night, before I went to sleep. I told her that I was doing the best that I can with what I have - doing my best to honor her life. I heard her reply as clearly as if she was in the room with me: “That’s great Mom, but what about your life? The rest of your life doesn’t have to be all about my life.”

Whoa. That stopped me in my tracks, and I’ve been pondering it ever since.

What could be next for me, if it isn’t about Katie? I reflected. I was me before she got sick, before her passing – even before she arrived in our lives. I was me before David’s arrival, before my marriage to Gregg. What about me – what is my own life about, now?

This trip came at the perfect time to open to that question. 

I have wanted to take a spa retreat (and a spiritual retreat) since our children were small. My mom and I have spent a day here and there at a spa, and have been away on church retreats, but we’ve never taken one like this. It seemed self-indulgent - something that other people did, but not me. I wanted to do it, but never would have treated myself to it. My mom’s generosity – and her need for a break, after a difficult summer – made it possible.

As the date of departure approached, I wondered how to open my heart to prepare for the experience. The words that dropped into my mind were: “See, I am doing a new thing…” I didn’t recall where in the Bible that phrase originated, but I knew that it was God speaking. That phrase became my mantra as I prepared, mentally and physically, for the trip. I resolved to look for Him everywhere, to intentionally allow God to do a “new thing” - whatever that meant - with me.

Gregg and I flew to Palm Springs and drove to my parents' condo. He and my dad had a week of activities planned; Mom and I got up early the next day and set out for San Diego. Five highways and 2 ½ hours later, I dropped off the rental car and we were met at the airport by the welcoming staff of the ranch. They took our bags, gave us each a bottle of water and a little bag of homemade granola, and invited us to board their van. 

After another couple of hours on the road (and a border crossing), we arrived at the gates of the ranch. We were each greeted with a fresh cup of lemonade and a cool towel as we disembarked the van. 

Following the porter who took our bags, my first sensation was of the delicious scent of herbs. The largest rosemary bushes I had ever seen, abloom with purple flowers, as well as laurel, lavender, sage and thyme, wafted their fragrance in the warm air, enlivening our senses with nature’s aromatherapy. As we followed the young man along the path to our casita, enjoying the perfume in the air, I began to see that this was going to be a trip greater than anything I had imagined.