Life Lessons from a Man I've Never Met

We will be known forever by the tracks we leave. - Dakota proverb

Last spring, I was allowed to participate in two classes because of the generosity of faculty members of the University of Washington School of Medicine. The two classes are "The Healer's Art" (a medical school elective designed by Rachel Naomi Remen, M.D.), and a "Values Clarification" exercise - part of the 4th-year curriculum in the Chronic Care Clerkship for students about to embark upon their residency program. The Values Clarification class was created by a man named Stuart Farber, M.D., who recently passed away from leukemia.

Dr. Farber is revered and loved by his colleagues and students, family and friends. He founded, and was director of, the Palliative Care service at the University of Washington Medical Center. He was a pioneer in the field, helping to develop a palliative care training center at the University of Washington.

In a terrible coincidence, his wife Annalu was also diagnosed with the same kind of leukemia (AML) four months after Dr. Farber's diagnosis, so they each walked in the role of patient and caregiver, supported by their family and community. This journey served to deepen and further inform his sensitivity in what he already believed and taught to his students. In each caringbridge.org update on their health, Dr. Farber and his wife shared their love of poetry by posting a poem chosen to express their feelings of the moment. I learned a great deal about the Farbers (whom I have never met) from those poems, and a great deal about the ways in which art can bring release and healing to patients and caregivers.

The Values Clarification exercise was administered by a wonderful professor named Tom McNalley, M.D., director of the Chronic Care Clerkship (whose specialty is Rehabilitation Medicine), and his gifted colleague, Carol Kummet, LICSW, MTS, a social worker with the Palliative Care Service. Both facilitators exuded seriousness tinged with gentle humor, compassion and empathy. Experiencing the Values Clarification with young medical students was a deeply moving gift to me, and one that I will never forget. It is an important part of Dr. Farber's legacy.

Another vital part of Dr. Farber's legacy is an article which was published posthumously, which I cannot recommend highly enough for EVERYone to read. It was published in the Journal of Pain and Symptom Management, Vol. 49, No. 4 on April 4, 2015, and made available by Dr. Farber's widow here:
http://www.sciencedirect.com/science/article/pii/S0885392415000755
under the heading, Humanities: Art, Language, and Spirituality in Health Care. Isn't that a powerful heading? The article is called Living Every Minute. I have read it twice, and am simply in awe of its grace and power. Whether you are a patient, family member of a patient, a clinician, an artist or a spiritual seeker, this article will be a gift to you.

Many deep truths of living, of the value of quality of life over quantity, and the supreme importance for clinicians and caregivers to seek, find and understand what is most important to their patients is beautifully illustrated in Dr. Farber's words and his life. Much is expressed poetically, with far more accuracy and nuance than the most scientific language could ever describe or quantify.

You can read more about Dr. Farber's life and legacy HERE.

Meet Dr. Michael Jensen and His Colleagues

Ben Towne Center for Childhood Cancer Research Profile from ben towne foundation on Vimeo.

If you have wondered, "Who is Dr. Michael Jensen?" and "What is the Ben Towne Center?," the answer is right here. It will take five and a half minutes of your time, and will leave you inspired with HOPE.

At Hannah's Hopeful Hearts on April 10th, you will have another opportunity to hear from this brilliant, compassionate doctor - and from another, brilliant, compassionate doctor, Jim Olson. The intellect, love, devotion and progressive spirit which these two men bring to their mission has never before been shared on the same stage. Please join us, and give yourself the gift of an evening of music, good food and drink, and - most importantly - good news about how these gifted researchers are arresting the #1 cause of death (by disease) of children.

 

Curing pediatric cancer will also lead to cures for adults.

A Video Like This Changed My Life

Ben Towne Center T Cells Interacting with Neuroblastoma Cells from ben towne foundation on Vimeo.

A video like this one changed my life.

I will always remember the moment; we were attending a summer party in a beautiful condominium in Seattle. We had been invited to meet a newly-arrived researcher; he had been in town for all of five days.

We knew just a couple of the other guests, two of whom were Carin and Jeff Towne, Ben's parents.

We mingled, we admired the view, ate and drank, and then we gathered in the living room to hear the doctor - who had just joined Seattle Children's Research Institute - talk about his work.

He showed a video like the one above, except that the cancer being destroyed was a brain tumor. I leaned against a wall in stunned silence, watching this solid tumor disappear, and felt the tears welling up. I turned to Carin and choked out a whispered, This is it - this is what we've been praying for!

I saw my prayers being answered in that video.

Yes, it happened too late to save Ben and Katie. Yes, we didn't see those prayers answered in their lifetime; but we have the privilege to see them answered in OUR lifetime - and that fact has changed my life for the better. You see, we are able to contribute to, and witness, this life-saving, non-toxic treatment keeping other families from going through what we endured - what Katie, Hannah, Ben, Jenny, Hayden and countless others have endured - the horrors of poisonous chemotherapy, invasive surgery and (in some cases) radiation, only to die from the disease.

We are here to see the day when cancer treatment does not cause secondary disease and debilitating side effects. That IS answered prayer, and for that, I thank God.

I'm going to be thanking God for this again on April 10th at 7:00 P.M., as I introduce Dr. Michael Jensen to the crowd at Grace Church on Bainbridge Island. I hope you'll be there to hear what he and Dr. Jim Olson have to tell us about this breakthrough, and others which are in the works. You'll have the opportunity to be encouraged with HOPE, and to contribute to a CURE, and I hope that will change your life, as well. We'll also have excellent food, drink and music to share - it's going to be a celebration!

Please tell your friends, and visit
hannahshopefulhearts.brownpapertickets.com
 to reserve your space!

Dr. Jim Olson & TEDx Talk

Jim Olson, M.D., is one of the two brilliant cancer researchers who will be on stage at Hannah's Hopeful Hearts at 7:00 P.M. on April 10, 2015 at Grace Church on Bainbridge Island. You can find out why we are so excited to have him speak to us by watching his TEDx talk:
Another way to get to know Jim is by listening to (or reading the transcript of) his interview with NPR. You can find that interview HERE.

Jim was one of Katie's attending physicians. Although his specialty is brain tumors, and he is a gifted researcher, one of his greatest gifts is his bedside manner. We appreciated his tender care when he attended Katie. Our friend, Kathleen Strum, whose younger son, Hayden, was one of Jim's patients in the 1990s had first told us about Jim; he also attended Hannah Hunt, for whom Hannah's Hopeful Hearts is named.

Jim's Tumor Paint and his other inventions through Project Violet have the potential to revolutionize and improve cancer care. Please join us by ordering your tickets and/or donating to this work at
http://hannahshopefulhearts.brownpapertickets.com

Hannah's Hopeful Hearts - Join Us April 10th!

Please join us!

Mark your calendar,

and go to

http://hannahshopefulhearts.brownpapertickets.com

to reserve your tickets! Space is limited; don't miss this special event!

Gregg and I are delighted to invite you to join us at Hannah’s Hopeful Hearts on Friday, April 10^th, 2015, 7:00 pm at Grace Church on Bainbridge Island.  This event is in memory of Hannah Hunt and our daughter Katie, two vibrant, beloved girls who passed away from pediatric cancer.

The first Hannah’s Hopeful Hearts event in March, 2010 was an enormous success, raising funds for brain tumor research which were critical in the development of Dr. Jim Olson’s Tumor Paint, which is now in clinical trials.  Tumor Paint aids in surgery by illuminating only cancerous cells, improving outcomes by leaving healthy brain cells untouched. Further innovative research is being pursued by Jim and his colleagues at Fred Hutchinson Cancer Research Center under the name of Project Violet. They are creating a new class of nature-derived compounds that treat cancer (and other diseases) while leaving healthy cells untouched.

The Katie Gerstenberger Endowment for Cancer Research supports the Jensen Lab at the Ben Towne Center for Childhood Cancer Research (BTCCCR). The Jensen Lab is named for Dr. Michael Jensen, a Bainbridge Island resident and the director of the BTCCCR at Seattle Children's Research Institute. Under Mike’s leadership, the BTCCR has achieved great success with its T-Cell (immunotherapy) research, targeting the most common childhood cancers - leukemia, neuroblastoma, brain tumors and sarcomas.  Currently, 11 children (and counting) who have been treated through the BTCCR’s clinical trials are in remission! A new clinical trial treating relapsed neuroblastoma has been launched, and there is hopeful progress for curing brain tumors with T-Cell therapy, as well. 

At the Hannah’s Hopeful Hearts event on April 10th, you will hear presentations by, and a moderated discussion with, Dr. Olson and Dr. Jensen – two leading lights in cancer research who have never before shared a stage.  Hannah’s mother, Reba Ferguson, and I will speak briefly on behalf of families supporting Jim’s and Mike’s work. Wine and beer, light hors d’oeuvres and a simple dessert buffet will be provided; the evening will conclude with a lively concert by the band St. Paul de Vence.  This band is featured on The Violet Sessions CD, a creative project which supports the Olson Lab. If you’d like to hear a sample of their music, go to http://stpaulband.com/#/music/ .

Please reserve your spot now at http://hannahshopefulhearts.brownpapertickets.com,

and join us and the Hunt-Ferguson family for an inspirational evening, furthering the work of these two brilliant doctors in their mutual goal of finding less toxic, more effective treatments for pediatric cancer. If you are unable to join us on April 10^th, you may make a donation via the same link (perhaps your employer will match your gift).

With hope and gratitude,

Karen and Gregg Gerstenberger

 Special thanks to our Title Sponsor, Windermere Real Estate of Bainbridge Island, WA

Hannah’s Hopeful Hearts 2015 benefits:

Cancer Cure

Did you happen to see this article in Seattle Business magazine's December issue?
If you missed it, please check it out - it is worth a read for information, and intilling HOPE. Cures are coming, and some of them are coming through Seattle.
Cancer Cure, Inc.

#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

Ronald McDonald House

Have you ever visited a Ronald McDonald House? Have you ever stayed in one? If you haven't had any contact with this charity, I highly recommend you look it up. It is one of the greatest inventions for families who have sick children.

Our family lived in Seattle's Ronald McDonald House for many months in 2006-2007. It provided a haven, a safe, clean, cozy, friendly, supportive environment for us when Katie was receiving her treatment for cancer. It was affordable (we were still paying our mortgage, property taxes and other bills on our home while living in Seattle), and very close to the hospital - both necessities for our family. We spent Thanksgiving and Christmas there.

Thanksgiving 2006, Ronald McDonald House

Christmas 2006, Ronald McDonald House

Gregg and Katie in our room at the House

In the autumn of 2007, we attended a benefit for the House. Our sister-in-law, Caroline, works for Alaska Airlines, a company which is a big supporter of Ronald McDonald House. They dedicated a page in the auction catalog to Katie, and invited our family to sit at the company's table. It was only two months after Katie's passing, and I remember feeling kind of numb, unaccustomed to being out in a crowd, in public - and I remember being very, very thankful to Alaska Airlines for their kindness, compassion and generosity.

Ronald McDonald House Gala, 2007

Last weekend, we attended the House benefit again, the first time since 2007. David was at home for the weekend, so it was lovely to share the evening with him. Again, Alaska Airlines hosted a table and donated many large-ticket items to the live auction. This time, I was able to donate two items to the silent auction, which I'm happy to say someone bought at 150% of the stated value. Hooray for generous bidders! One of the items was a beach wreath like this one

and the other was a copy of my book (a suggestion from the Ronald McDonald House staff).

It was fun to dress up and take the ferry to the city with my guys,

 spend the evening with my brother & sister-in-law and her colleagues,

to feel the love and support Seattle gives to the House, and to give back to a place which gave so much to us in a time of great need.

It was also emotional for some of us, and it brought back hard memories. You just never know what is going to take you down for the count...but it was worth it.

Lest you think my life is just one gala after another, here are the piles of ironing that awaited me afterward...

As Jack Kornfield says, "After the Ecstasy, the Laundry."