#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

Where to Begin? Here and Now.

I have recently neglected my blogs, but I know that the practice of writing needs to be just that: practiced. So here I am, and there are also the Morning Pages...now I can hear Karen Blixen (Isak Dinesen) saying,

"...But I've gone ahead of my story. He'd have hated that. Denys loved to hear a story told well..." (Isak Dinesen, Out of Africa)*

So let's go back (briefly) to May-June

The workshop which I created for Field's End Writers' Community on Bainbridge Island (delivered in May and June) went well. WORD SOUP© lasted for four weeks, and at the end, the comment forms (and letters) I received from participants were exciting and encouraging. They wished it had lasted longer; they want me to offer it again.

I heard from several participants whose felt their writing improved, expanded and/or "unblocked" as a result of our sessions. That is joyful news indeed, especially considering it was a brand-new workshop. They formed a well-balanced group, and intend to continue as a writing group in the autumn.

If you know of a group which would benefit from WORD SOUP©, please leave a comment and we will explore the possibilities together!

Now, to the present and those Morning Pages: during my week at Rancho La Puerta, I met many interesting people. One of those was Shelby, a long-distance runner and an accomplished, lovely woman. We found that we have mutual acquaintances, and live close enough to visit each other. Shelby rode the ferry over a couple of weeks ago, and we took a long walk, catching up on the latest news in each other's lives.

Shelby recently completed a 50-mile run, and no, that is not a typographical error; FIFTY miles, in one day. So here is respect for her strength, determination, training and persistence!...and she reminded me of a book which I have had for years, called "The Artist's Way."

The Artist's Way was developed by Julia Cameron (it's worth an online search, if you don't know about her). Ms. Cameron is a creative, prolific, successful artist herself, and has helped to free many thousands of other artists through her work. I started her book - which requires a commitment of 12 weeks - twice in the past, but never finished it. After Shelby brought it up, I went home and pulled out my copy.

From what I found written inside, I began the study in the year 2002; I've no idea why I didn't finish it then. The second time I started it was on June 9, 2006.

June 9, 2006. Four months before Katie was diagnosed with cancer.

I don't know what stopped me from finishing it in 2006, either, but remembering that I started it again at that time was - for some reason - a shock to my system. It told me something about my state of mind, right before "the end of the world as we know it."

My family in June 2006

So, I have recommitted to study, practice, and complete it this time. I am writing the Morning Pages each day, reading the weekly chapters and doing the exercises. This time, I am ready, and - of course - it means something different now, because I am different; my life is different and my needs as an artist are different. The timing is perfect.

It struck me that the work I have done in creating WORD SOUP© is somehow connected to "The Artist's Way." The purpose of WORD SOUP© is to bring freedom, joy and inspiration to people who want to begin to write, and to those who once wrote, but have stopped (for whatever reason). It is easy and fun for me to facilitate WORD SOUP© for others, but I also need to practice artistic recovery for myself - for the painter who no longer paints, as well as for the writer who loves to write. "The Artist's Way" will promote that practice for me.

I am absorbing the wisdom, insight and healing offered in the book. Ms. Cameron knows exactly what she is writing about. There are topics covered which bring exactly the medicine I need in different areas of my creative life (including the DVD project). There is an entire section on "Crazymakers," which was tremendously helpful, reminding me that such difficulties occur in many creative endeavors and environments.

I am thankful to God for leading my mom and me to Rancho La Puerta, which led to meeting Shelby, who led to my renewed commitment to "The Artist's Way." Write on!

*I've been reading books about the "Happy Valley Set," a group of European expatriates who settled in what was then British East Africa (now Kenya) in the early-to-mid-20th century. There was a murder, never officially solved, which took place there, and I wanted to know about it. I found a copy of the (out-of-print) book, "White Mischief" by Edward Fox, which led to other biographies ("The Bolter," "Too Close to the Sun" and "The Temptress," which led to re-viewing "Out of Africa." All in all, not an inspiring group of people, but an interesting place and time in history.

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.

What Do You Desire in Your Leaders?

I read an interview in the Reader's Digest with author Malcolm Gladwell, whose most recent book is called "David and Goliath: Underdogs, Misfits and the Art of Battling Giants." The accompanying image (a sculpture of David, preparing to do battle with Goliath, by Bernini)

 drew me in; several quotes from the interview have stayed with me, and are worth reflection - particularly in our current political and business climate.

Reader's Digest Interviewer: What's the one thing you'd like us to take away from your book?
Malcolm Gladwell: That the greatest things in the world come from suffering.* It ought to give us solace. A lot of what is most beautiful about the world arises from struggle.
RD: You once said that we are always drawn to charismatic leaders, even though things often wind up badly. Why do you think that happens?
MG: Mistake number one is that we're interested in charisma. We often simply go for the physically imposing or attractive. Or we choose narcissists of one variety or another...We are also overly in love with certainty as a trait in our leaders.

 After reading and reflecting on those words, the following popped into my "inbox:"

"In the second half of life, you have begun to live and experience the joy of your inner purpose...At one and the same time, you know what you do know (but now deeply and quietly), and you also know what you do not know...Many politicians and clergy know what they know, but they don’t know what they don’t know, and that’s what makes them dangerous...A creative tension in the second half of life, knowing what you know and knowing what you don’t know, is a necessary one." - Richard Rohr, adapted from Adult Christianity and How to Get There

In order to exercise leadership or employ our expertise, we must have courage. We must be willing to stand for what we know to be true. However, it takes great courage and humility - one might call it integrity - to admit to ourselves, and to others, what we do not know.

This integrity is essential in business, in public service, and in our personal lives, if relationships are to be healthy and sustainable. Great damage is done by individuals who - in pursuit of power, wealth, influence or "success" - do all that they can to appear to have great expertise and certainty, beyond the scope of their true ability. "I don't know...but I will find out" is a perfectly acceptable answer - and it can deepen trust in a relationship.

Further damage ensues when profit for our own entity is the only goal we seek. There is evidence of a "me first" standard in business today, witnessed by the conduct of executives and corporations in the news (for one awful example, see this article in Vanity Fair). "Me first" is a not a sustainable model in relationships; this lesson is taught in kindergarten.

Integrity should be our highest standard, far more than profit. Profits - and fortunes - will come and go, but character is lasting. We have the potential to create a world in which business, political and personal relationships function for mutual benefit and blessing. The way to begin is to practice integrity in each aspect of our own lives, in matters small and great, so that we are not divided, but whole and consistent human beings. We can make our choices, one at a time, with the intent to bless - and in doing so, we can transform the world, one decision, one transaction, one thought at a time.

*A word about suffering: although I take Gladwell's point about suffering bearing many fruits of benefit in the world, it is important to understand that many of these benefits are apparent only after the crisis of suffering has passed. It is difficult to see blessings in the midst of suffering, and one who attempts to comfort the sufferer by pointing to the blessings inherent in it, is likely to fail - and to alienate the sufferer.

Actions > Words

No matter what words we use, our actions speak a deep and lasting message to those we meet. Ralph Waldo Emerson put it simply and eloquently:  
"What you do speaks so loudly, that it does not let me hear what you say." 

If our words and our actions are at variance, which do you suppose people will believe - and remember?

Author and doctor Don Miguel Ruiz wrote The Four Agreements. His website explains, "After exploring the human mind from a Toltec as well as scientific perspective, Don Miguel has combined old wisdom with modern insights and created a new message for all mankind, based in truth and common sense." 

The Four Agreements according to Don Miguel Ruiz are:

"1. Be Impeccable With Your Word
Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or to gossip about others. Use the power of your word in the direction of truth and love.

2. Don't Take Anything Personally
Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won't be the victim of needless suffering.

3. Don't Make Assumptions
Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With just this one agreement, you can completely transform your life.

4. Always Do Your Best
Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret."

The path may be stony and hard this day, or smooth and even; we may be surrounded by friends, or pierced with weapons wielded by adversaries. Whatever this day holds, may wisdom inform our words and actions, that they may be of one spirit - that we may be a blessing to those we meet.

Inspired to Give

1100 people gathered for the Ben Towne Foundation's BENefit 2013 (Image: Bryce Covey Photography)

Around here, autumn is the time when many charities host fundraisers. Gregg and I are always pleased to attend the Ben Towne Foundation's annual BENefit. We've had the privilege of being an active part of this event from its inception, and watching it grow each year lifts my heart like no other "gala" can.

Though the thing that drew us together with the Townes is the worst thing that has ever happened to us, our friendship goes far beyond that loss. It includes our sense of humor, commitment to family, a lot of coincidences, shared tastes and sensibilities, fierceness, passion and joie de vivre. It is pure pleasure to be counted among their friends and supporters, and to do all that we can to share their message and raise awareness of it.

Jeff & Carin Towne with Dr. Michael Jensen (Image: Bryce Covey Photography)

Though there are always some moments during the program that make me cry, most of my emotions at the BENefit are joyful, because the Ben Towne Foundation is getting the job done - making my dreams of a cure for pediatric cancer come true, in this time and place. Through their efforts, the pace is accelerating here in Seattle under the leadership of Dr. Mike Jensen and Dr. Rebecca Gardner (two special favorites of mine), among others. The Katie Gerstenberger Endowment for cancer research supports their laboratory.

Reba & Mary-Jane with me

Joining us at our table were my parents, brother Jim and sister-in-law Caroline, and our friends Reba, Bill, Mary-Jane and Brian. Let me give you a few statistics about our table: 60% of us had our only daughter die from pediatric cancer. Every single person at our table (100%) had suffered the loss of someone close to them as a result of pediatric cancer. For 20% of our table, it was their ONLY child (100% of the children in that family). All of us want to see this disease wiped out, with as few side effects, as quickly as possible. And we were in the right place to help the researches accomplish that.

The news is good, my friends: the first patient in the clinical trial of T-Cell therapy continues to enjoy remission, gained after only 9 days of treatment, with side effects of flu-like symptoms during that time. The next patient is ready to enroll, and it looks as if the clinical trial will soon be expanded to include a much broader range of ages - open for more patients to be treated and cured in this new, non-toxic way!

Did you know that it can cost 10 times more to treat a child with traditional chemotherapy than with T-Cell therapy - and surgery costs even more? The bill for Katie's care was in the neighborhood of a million dollars, for which we were (thank God) covered by medical insurance - but there are many whose finances are completely wiped out by such treatment, and without the promise of a cure!

Think of it this way: you could spend $350,000 for a patient to endure chemo, which can cause secondary cancers, organ damage, susceptibility to infections and reproductive problems - or $30,000 for a patient to have T-Cell therapy, with no long-term damage whatsoever, and continuing immune-system support for remission. Which would you choose for your child - or for yourself? What would you like to see become the "norm?"

Last week, I had the privilege and pleasure of attending an elegant "thank you" party for Seattle Children's Hospital's Circle of Care as the guest of one of our dear friends. The Circle of Care was conceived and founded by Scott and Laurie Oki, at Seattle Children's through their challenge grant of $1,000,000 in 1993; since that time, it has spread across the nation and has inspired $4.7 BILLION of giving to 25 children's hospitals in North America! This group is deeply appreciated by the hospital community. We enjoyed an inspiring evening of intimate conversations with top doctors and supporters who are equally committed to improving the health and quality of children's lives. I hope someday to be able to join the Circle of Care!

On this day - the very one on which Katie was admitted into the hospital in 2006 - people such as Katie, Carin and Jeff Towne, Dr. Jensen, the Okis and all of the members of the Circle of Care inspire me. Who (or what) inspires you to give?

A Magic Wand

"The day I acquired the habit of consciously pronouncing the words 'thank you,' I felt I had gained possession of a magic wand capable of transforming everything."  -Omraam Mikhael Aivanhov

The Gold Standard

"We make a living by what we get. We make a life by what we give." - Winston Churchill

Should our living and our life be different? How can we integrate them?

I grew up in a household which was supported by a family business. My father founded his own manufacturer's representative agency (Philip J. Boren, Inc.) when he was 40 years old. It was a huge leap of faith, and an adventure for him and our family.

As the business grew, so did our involvement with it. My father always discussed the events of his day with us over dinner. When his territory expanded to five states, he had to spend time away from home. This was the worst aspect of the job, for him; when the highway speed limit was lowered due to a national energy crisis, Dad decided to earn a pilot's license. Traveling to serve his clients was no longer a long haul; it was an opportunity to enjoy his hobby, while taking care of business - and arrive home in time for dinner with the family.

Dad drafted us to work for him at wholesale and retail trade shows, as well as on the road. He trained each one of his children in the art of sales, which he perceived as knowing your product, understanding and caring about your client's needs, and doing your best to explain to the buyer how your product could benefit their business. He actually used to pray silently, before making a presentation, that his client would be led to make the right decision to bless their business. He trusted that what was right for the client would in the end benefit our family's business. He cared about doing right, not just doing well - and he did both.

I am certain that the buyers he served felt his genuine caring and integrity, and he was very successful in sales and income, as well as his standing in the field. He won many sales awards and helped his customers - and the factories he represented - to prosper. His example made a lifelong impression on me of the highest aim in business: to bless everyone involved - not just to "make a living."

He faced industry-related problems, including disagreeable mandates from factories, demanding clients, service issues, rivalry, and even the occasional swindling by someone he had trusted. He held onto his integrity through it all, even if that integrity threatened to cut his income. He is still, at 86, the most honest person I have ever met.

Do we "make a living by what we get," or "by what we give?" What should our primary motivation be? What will lead to fulfillment and truly satisfying relationships over a lifetime? Will we be able to live with honor, according to the way we make our living? My father's example is the gold standard, for me - and I am thankful for it.

Inspired by Love and Service

"The beauty and charm of selfless love and service should not die away from the face of the earth. The world should know that a life of dedication is possible, that a life inspired by love and service to humanity is possible." - Sri Amritanandamayi Devi

 

This love and service are perfectly expressed in nursing care, whether it is a family member caring for a child who is sick with a virus, or a professional nurse with advanced training, serving in an intensive care unit. One of the most tender aspects of this love and service to humanity is seen in hospice nurses. 

I am privileged to know a hospice nurse who was trained in the ICU, and moved outward from there to care for people with life-limiting illness - those who choose to forego extraordinary means of prolonging their lives, preferring to focus on quality of life over quantity.

When we were faced with Katie's diagnosis of relapsed adrenocortical carcinoma (and with it, "terminal" cancer), Seattle Children's Hospital offered to call hospice and request care for Katie in our home. We accepted, in shock and gratitude. Amy came over a few days later with the hospice social worker, Dee; they explained everything and answered our questions.

 

In many parts of the country, hospice is not available for children. One of the reasons for this is the fact that - even among hospice professionals, where death is viewed as a natural part of life - the death of a child is a very hard thing to witness and accept. Fortunately for us, Amy knew that "The LORD cares deeply when his loved ones die" (Psalm 116: 15), and she came alongside to teach and help us, providing skilled hands to deliver that sacred care.

Over the next weeks, Katie's condition grew more life-limiting as the disease advanced in its unique and terrible way. During that time, Amy was always just a phone call - and a few minutes' drive - from us, all day and night, every day. She consulted by telephone, made home visits, provided comfort care and listened, in the most compassionate, understanding and devoted way. Katie was not happy to be in hospice care, and adopted what we call a "spicy" attitude to Amy (calling her "the quack" when she was out of earshot), but Amy understood this and loved her. 

 

We will be forever grateful to Amy for her support in some of the most tender and sacred moments of our daughter's life and death.

 

Amy writes a beautiful blog, and has just published an article in the American Journal of Nursing which I highly recommend; it can be found HERE. For more insight on this subject, check out this article in The Week magazine (an excerpt from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. ©2013 by Katherine Anne Butler).

 

When one you love is sick or dying - whether you are a family member, friend or professional caregiver - your gifts of love and selfless service are essential. Your presence can bring peace and comfort - even if no cure is possible - and in so doing, you act as the very hands of the Holy One (Matt. 25: 36-40). It is a sacred vocation.

The Sun Magazine | Dawn And Mary

The Sun Magazine | Dawn And Mary

My writing group gathered for dinner here the other night. The "Sh*tty First Draft Writing Group" has five members, each of whom has suffered the death of a child, each of whom has a strong character and a love for the written word. We meet to encourage one other to write - even what Ann Lamott calls "sh*tty first drafts" - or ideas that are still in our minds, or scrawls on scraps of paper...any writing, in any form, is welcome.

You might think this is a depressing group, but you would be mistaken in that assumption. Yes, someone occasionally cries, but there is far more laughter, lively discussion and deep listening. We share ideas, whatever we are working on and books we have read; we drink wine. We share our stories. We hold space for each other, talk about what it is really like to walk this earth without our child, in this new landscape which is continually surprising us. We remember our children, and we hold those memories together, with love.

One of our members, Robin (author of the blog Grief & Gratitude), is a wonderful resource - she has read all kinds of books and essays, and frequently shares them with us. I love that quality in her; she's a bit like a personal shopper for good writing on interesting topics. This week, she shared an essay by the writer Brian Doyle - an essay about two of the women who died in the shooting at Sandy Hook Elementary (there is a link to article in The Sun Magazine at the top of this post).

The entire essay is brief and beautiful, but the last paragraph in particular struck a chord in me:

"The next time someone says the word hero to you, you say this: There once were two women. One was named Dawn, and the other was named Mary. They both had two daughters. They both loved to kneel down to care for small beings. They leapt from their chairs and ran right at the boy with the rifle, and if we ever forget their names, if we ever forget the wind in that hallway, if we ever forget what they did, if we ever forget that there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children, if we ever forget that all children are our children, then we are fools who have allowed memory to be murdered too, and what good are we then? What good are we then?"

As I prepare to attend the Ben Towne Foundation's annual BENefit this weekend, I look forward to gathering with parents, researchers, oncologists, hospital staff who treated Katie, family and friends who know firsthand that "there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children..."

I will be grateful to be in such company. We will hear stories of the progress made this year, progress in research and the treatment of cancer through T-Cell therapy at Seattle Children's Research Institute's Jensen Lab (the first patient is in remission!). I will join hands with others who are snarling at death - at cancer - and together, we will run roaring at it to defend our children - all children - because, in fact, they are all our children. 

If you'd like to learn more or find a way to get involved, follow the links to the Ben Towne Foundation and Jensen Lab.

September (GOLD) News

One of my favorite bloggers, Stephanie Nielson of "The NieNie Dialogues" and author of "Heaven is Here" has posted about Childhood Cancer. In that same posting, she has generously endorsed my book, "Because of Katie." Thank you, Stephanie!

Stephanie (also known by her readers as NieNie) survived an airplane crash which caused burns over more than 80% of her body. She writes a joyful, funny, sweet and real blog about her life as the mother of five children, spanning the years before and after the accident. The crash happened on the one-year anniversary of Katie's passing, so the date was very significant to me. Stephanie's journey - physical, emotional and spiritual - back from death continues to inspire me and thousands of others.

In case you didn't know, September is Pediatric Cancer Awareness Month (think "gold ribbon" when you see the pink one for breast cancer awareness). Many of our friends and acquaintances know about childhood cancer, and are committed to supporting research for better cures and treatments plans. They have started foundations, non-profit organizations, organized fundraisers, written articles, lobbied Congress, volunteered at camps and spoken freely about what they know - and what they wish they didn't know.

Clearly, it is neither wise nor acceptable to poison people - particularly sick people, especially growing children - in an attempt to cure them. But traditional chemotherapy and radiation are poison, and often lead to physical impairments like hearing loss, heart trouble and - if you can imagine the horror - secondary cancers. So a child who is cured in his youth may be diagnosed with a new cancer (not a relapse of the original disease, but an entirely new cancer) when he is older. After enduring the worst kind of sickness, this is cruel and unusual punishment.

We founded the Katie Gerstenberger Endowment for Cancer Research when Katie was in hospice care. She wanted us to direct the funds to cure cancers like the one she had (adrenocortical carcinoma). While childhood cancer is rare, adrenocortical carcinoma is extremely uncommon among that rarity, so we expanded the purpose of her endowment beyond that one form of the disease. To date, Katie's endowment is funded with nearly $193,000, and contributed $6,963 in this past year to the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. We are grateful to our family and friends who have helped to build this fund, as well as moved and relieved to see progress in the treatment and cure of cancer in these six short years since Katie passed away. With awareness, inspiration and financial support, it will come even faster - to children and adults who suffer from the many forms of cancer, and to those who suffer from the horrific, medieval torture-chamber-variety of treatments that have been all that is available to offer them, up until now.

To see the killer of my daughter (cancer) being brought to justice (wiped out) is profoundly gratifying to me mentally, emotionally and viscerally. If you are interested in joining this effort, please follow the links in the text in this posting to find out more.

To Dr. Michael Jensen and his colleagues at the Ben Towne Center for Childhood Cancer Research, to Carin and Jeff Towne (and everyone at the Ben Towne Foundation), to all who work tirelessly to make a better world for the sick, and for those who love them: you have my heartfelt thanks. And to Stephanie Nielson: thank you for caring about all of us who are touched by childhood cancer, and for using your blog to bless your readers!

When One Door Closes

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." - Helen Keller

Compassionate Action Starts with Seeing

"Compassionate action starts with seeing yourself 
when you start to make yourself right and 
when you start to make yourself wrong. 
At that point 
you could just contemplate the fact 
that there is a larger alternative 
to either of those, 
a more tender, 
shaky kind of place 
where you could live." - Pema Chödrön

Gratitude First

 "Happiness is not what makes us grateful. 
It is gratefulness that makes us happy."

- David Steindl-Rast, A Listening Heart

Light, Peace, Presence

 

"Enveloped in Your Light, may I be a beacon to those in search of Light. 

Sheltered in Your Peace, may I offer shelter to those in need of peace. 

Embraced by Your Presence, so may I be present to others." - Rabbi Rami Shapiro

Christmas Thoughts, Year 1

Christmas, 2005

To be honest, I have been a little baffled about why I am happy during this season. I thought that every day would be awful, full of longing and reminders of who and what is missing. The strange thing is that I am enjoying all of the small joys of Advent, and the days leading up to Christmas. I have been wondering why, and I can only think of a couple of things.

Last year at this time, we were suffering terribly. Katie was miserable in between rounds of chemo, and the last rounds were the worst. She needed medication around the clock to help her feel just "okay," and to control nausea, as well as 2-3 injections a day, and was only interested in watching TV and movies. We were all living in one small room at Ronald McDonald House, when she wasn't in the hospital: two queen-sized beds and a window-seat/bed, a table, two chairs, a TV/VCR/DVD player and (thank goodness) our own bathroom. David and I went shopping with my sister, Debbie to buy a wreath and 2 small (fake) trees, lights and decorations that the kids could make their own, and place on the windowsill of our room. Katie wasn't interested enough to finish hers. She skipped all of the opportunities at RMcD House to join in festivities, such as making gingerbread houses, caroling, a photo session with Santa or taking a holiday cruise. She just felt too awful. If you have ever loved someone who is suffering, you know that all who love and care for her suffer with her; that is compassion. It was a really hard time for all of us, especially since Katie and David LOVE Christmas.

The week of Christmas itself, Katie was an inpatient finishing a 5-day round of chemo; she spent Christmas Eve and Christmas morning in the hospital. I was with her, while Gregg stayed at Ronald McDonald House and visited us daily. We encouraged David to go home and spend Christmas with Uncle Charlie and Auntie Cheri, and to be with his grandparents, aunts, uncles and cousins. The Gerstenbergers really know how to celebrate Christmas, and we wanted David to be surrounded by that familiar love and joy. He did go, and he had a great time, but it was hard on all of us to be separated.

This year, we have enjoyed being in our own home, going to choose, cut and decorate a real tree again, hanging lights, making treats with Taylor, and (for me), spending quiet time praying with the Advent devotional readings. I love Advent; having been brought up as a Christian Scientist, I didn't know about Advent, and it was a revelation and a joy to me. The light and anticipation that are intrinsic to the season are helping me to deal with the darkness of the days and the strangeness of experiencing our first Christmas without Katie. Last year she was with us in body, but not in spirit, because she was suffering so much. This year, she is not with us in body, and I assume that she is not suffering any more; I feel she is free, and that is what I pray for her. I do not say "I know," because I cannot KNOW; I can hope and pray and feel, and that is going to have to be enough, for now. So I am thankful and joyful for what I have, and I will continue to love my girl with all of my heart. I wish she were here with us, enjoying Christmas, wearing her Santa hat with David...but she is not.

I found this poem in Elisabeth Kubler-Ross's book, On Death and Dying:

In desperate hope I go and search for her in all the corners of my room; I find
her not.
My house is small and what once has gone from it can never be
regained.
But infinite is thy mansion, my lord, and seeking her I have come
to thy door.
I stand under the golden canopy of thine evening sky and I lift
my eager eyes to thy face.
I have come to the brink of eternity from which
nothing can vanish--no hope, no happiness, no vision of a face seen through
tears.
Oh, dip my emptied life into that ocean, plunge it into the deepest
fullness. Let me for once feel that lost sweet touch in the allness of the
universe. - TAGORE, from Gitanjali

Tofino, BC, about a week after Katie's Celebration of Life

Grief Help

We were introduced to a website called www.caringbridge.org when Katie was first in the hospital. It is a wonderful way to stay in touch with the world when you are facing a serious problem. David set up Katie's page for her, but she decided not to be involved with it. I used it to communicate with the outside world, since Katie decreed that medical details not be discussed in front of her. That ruled out using the phone, and she disliked having visitors as time went on, so the website became a sort of lifeline for me with our community.

I have learned a lot from reading other people's caringbridge pages, and I came across a new one recently. This young lady had just passed away, and her mother posted the following advice on dealing with grieving friends/family; it is extremely valuable.

From Taylor Baum’s caringbridge page:We have a choice. We can be bitter and resentful to others or we can help them understand and be part of our grief journey. What follows are what I call "10 Grief Lessons for Others." By sharing these lessons with those close to you, a new level of understanding between you and others can help you down that long difficult road to recovery.

1. BE THERE FOR ME.
If you are my friend, reach out, talk to me, hold my hand, hug me. Know that even though we may say we are all right, we will never be all right again.

2. WE ARE DIFFERENT.
Understand that what has happened will change us forever and if you are my friend, you will accept me for what I have become, for who I am now, a person with different goals and different priorities. What was once important to me may no longer have any meaning.

3. BE A GOOD LISTENER.
We want above all else to talk about our loved one. To us, they will always be alive in our hearts, and we don't want others to forget them either. Don't be afraid to mention their names in our conversations. They were real people at one time, even though they are no longer with us. They had hopes and dreams we'd still like to share with others. Please don't pretend they never existed.

4. NO ONE ELSE KNOWS HOW I FEEL.
We all grieve differently. Please don't tell me you know how I feel. You don't. Rather than asking me, "How are you feeling?" ask me "What are you feeling?" I can probably give you a more honest answer.

5. I MAY GRIEVE FOR A VERY LONG TIME.
There is no set time limit to my grief. It may take me two years; it may take me five years. I have to do what is comfortable for me. Be patient. I will do the best I can in whatever amount of time it takes.

6. KEEP IN TOUCH.
Call me once in a while. I promise to do the same. Invite me to lunch or to a movie. I will eventually go, because I will eventually feel better. Don't give up on me and don't forget me. I am trying to do the best I can right now.

7. I MAY CRY AT TIMES IN FRONT OF YOU.
Please don't be embarrassed, and I won't be either. Besides being a natural emotion, crying is also a cleansing emotion. By crying I can relieve a lot of anger, frustration, guilt and stress. And best of all, I feel much better after a good cry.

8. I PUT A MASK ON FOR THE PUBLIC.
Don't assume just because I am functioning during the day that I am "over it." I will never get "over it." I try to function normally because I have no other choice. You should see me when the day is over, and I am in the privacy of my own home and free to let my emotions out. My day mask comes off and I am just a mother, aching for her child.

9. SOME DAYS MAY BE OVERWHELMING.
The slightest thing can trigger a bad time. It can be a song, a place I go, a holiday, a wedding or even smells or sounds. If I break down and start crying or seem to be in another world, it is because I am thinking of my loved one and longing for what I will never have again. I may need to try different things before I find what will be right for me in my new life. Encourage me to reach for the stars.

10. LET ME DO WHATEVER MAKES ME HAPPY.
We will never forget our loved one. The pain never leaves. It just softens a little with time. We eventually function again, feel hope again, find joy in our lives. It is a long road that we travel, but with the help of friends and relatives who understand a little of how we feel and what we are going through, perhaps that road will lead to new paths to enrich our lives in new ways we never dreamed were possible.

Another resource which was brought to my attention by a staff member of Seattle Children's Hospital is http://www.griefhaven.org/
This is a sort of clearinghouse of information for bereaved parents; it is a website started by a bereaved mother, Susan Whitmore. Check out their newsletter archives, if you are looking for some writing by people who understand.