An Inspired Effort, Indeed

Photo credit: North Kitsap Herald's Kitsap Week

Richard Walker of Kitsap Newspaper Group has written a sensitive, beautiful article about Katie and Hannah Hunt (the daughter of our friends, Reba and Bill), and the effort they have inspired around cancer research. Our families are linked in friendship because of our daughters' shared experiences - though the girls never met in the flesh. Both of them have inspired our families, friends, and community to come together and support research to find a cure for cancer.
To read the article, please go to this link at Kitsap Week.

We are coming together again next Friday at 7:00 P.M. at Grace Church on Bainbridge Island for Hannah's Hopeful Hearts 2015, an evening of fun, fine food and drink, live music by St. Paul de Vence and presentations by two of the brilliant cancer researchers who are changing the way cancer is treated - for the better: better treatment and better outcomes. Please join us by going to hannahshopefulhearts.brownpapertickets.com and securing your tickets! All proceeds from ticket sales go directly to cancer research, thanks to the generosity of our presenting sponsor, Windermere Real Estate of Bainbridge Island.

All funds raised at the event go directly to cancer research!

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

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.

Hannah's Hopeful Hearts

I just received this message from our friends, Reba & Bill:

     On March 19th, 2010, the Bainbridge community came together at Grace Church for the Hannah's Hopeful Hearts "Climbing Mountains for A Cure for Brain Tumors" fundraiser.  The event was an enormous success both in terms of the love that was poured out for Hannah and our family and for the funds raised for brain tumor research.  The funds were critical for the development of Tumor Paint in Dr. Jim Olson’s lab.  We are delighted to share that the US FDA just gave the green light to begin brain tumor trials in the US with BLZ-100, the first tumor paint product. 

     In addition to Tumor Paint, innovative research under the name of Project Violet was developed by Jim and his colleagues at the Fred Hutchinson Cancer Research Center.  Project Violet aspires to develop a new class of nature-derived anti-cancer compounds that attack cancer cells while leaving healthy cells untouched.  This project largely depends on public donations – often from parents and friends of Olson’s pediatric patients - to fund the development of drugs to treat cancer or other diseases once thought incurable.

     Another pediatric cancer researcher, Dr. Michael Jensen, heads up the Ben Towne Center for Childhood Cancer Research.  Affiliated with Seattle Children’s Hospital, the Ben Towne Center has in a few short years achieved great success with their immunotherapy research.  Currently, 13 children and counting are leukemia-free, the relapsed neuroblastoma trial is beginning, and there is hopeful progress in targeting brain tumors. Additionally, Grace Church sponsored a young team of cyclists last year in the Race Across America (RAAM), benefiting Mike Jensen’s research.  Two of these cyclists were classmates of our daughter, Hannah.  We have been proud to support both Jim and Mike’s work.

     We are excited to announce that for the first time ever, Dr. Olson and Dr. Jensen graciously agreed to come together in one special night to update our community on their work and progress in childhood cancer research.

This new Hannah’s Hopeful Hearts event will take place on Friday, April, 10^th, 2015, beginning at 7 pm at Grace Church on Bainbridge Island.  Following presentations from Dr. Olson and Dr. Jensen, a call for donations will take place.  During the night, wine, 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.  Friends with Jim, this band contributed to the Violet Sessions CD, a creative project that helps to fund research at the Olson lab. 

     We look forward to another heartfelt and inspirational evening to further the work of these two amazing doctors towards their mutual goals of finding less toxic, more effective treatments for pediatric cancer.  And in the words of our favorite QB who is #strongagainstcancer, Go Jim!!  Go Mike!!  Go Hawks!!

With gratitude and hope,  

Reba Ferguson and Bill Hunt

Gregg and I will be participating in this event, and we invite you to mark your calendars and join us. It's going to be a stellar evening, filled with good news, hope, thanksgiving and joy.

The Power of Love (or Serendipity)

On Thursday, David and I traveled to Seattle to meet a photographer and a representative of Seattle Children's Hospital's Guild Association. I had been asked to to coordinate a comforter delivery with a story which will be published in the Guild News (a regular publication of the Guild Association. By the way, if you don't know about the Guild Association, please follow this link and look around. It is a fabulous organization of which I am thrilled to be a member). I will post a link to the photos and article when they are published.

David came with me on the spur of the moment. We brought a batch of gorgeous quilts from the Fearless Quilters of Rolling Bay Presbyterian, along with a batch of fleece blankets from our dear neighbor, Cami - 28 in all. As we pulled into the driveway, I said to David, "I should have called Carly, and told her we were coming!" Carly is our representative at the Foundation, where Katie's Endowment resides.

The fact is, there are so many staffers within the organization of Seattle Children's Hospital who have touched our lives and blessed us that I would probably need to visit every week in order to see each of them - so I often don't tell anyone when I am coming, and just slip in and out delivering quilts. On this day, I was focused on the photo shoot, thinking we would meet in the reception area, hold the comforters and smile for the camera. Well, serendipity was at work behind the scenes...

We took the comforters to the Volunteer Office, and there was one of my favorite volunteers: Jane Humphries, a.k.a. "The Blanket Lady." Jane volunteers every week, delivering comforters to patients who have been admitted to the hospital. She was loading a cart, and brightened up when she saw the bounty we had brought for her to deliver. We learned that Jane was going to be part of the photo shoot, and that we were going to be allowed to go on the ward and actually GIVE a blanket to a patient. This just doesn't happen anymore, due to HIPAA regulations, so this was a rare treat.

Seattle Children's has a fantastic new facility called "Building Hope." Its design is gorgeous and family-friendly in the most progressive ways, filled with light, beautiful artwork, well-designed, attractive furnishings and comfortably-equipped rooms. It is a wonderful place - that is, if you have to be a patient in a hospital. I had a quick tour a while ago, but David had never seen it. That was our destination for the photo shoot - a nice surprise.

The photographer and manager of Guild Marketing arrived. As we were getting acquainted, Carly walked into the Volunteer Office - serendipity! She and David had never met, so I happily took care of that. She revealed that she was expecting a "special visitor" to tour the hospital with her, and was going to be in the same area as we were. Looking forward to running into them later, we said "goodbye" and prepared to deliver quilts and blankets.

Please visit #strongagainstcancer on Facebook, Instagram and Twitter

We took some #strongagainstcancer photos before we entered the cancer unit. #STRONGAGAINSTCANCER is a new initiative being launched by Seattle Children's Hospital. A BIG announcement will be made during half-time of the NFL Thanksgiving Day football game. Please be sure to tune in!

Once we were admitted to the ward, we noticed a number of the staff who had taken care of Katie were on duty. Many hugs followed, with exclamations of surprise at seeing David, "all grown up." The nurses posed for photos with us around the cart, each one holding a blanket. What a beautiful, full-circle moment that was - to see our comforters in the hands of staff members who have brought such comfort to our family!

There was so much palpable love in the air that I kept saying, "This is the best day ever!" Then I thought about it and said, "Well, this is the best day on the cancer ward." And it got even better...

We were introduced to a lovely young patient who selected a pink fleece blanket with owls on it, and we posed together, with me handing it to her. As our eyes met, and I looked at her sweet mother standing behind her, something deep within me connected with them. I longed to join them in the room and just stay there; of course, that wasn't possible, and I would not have suggested such a thing, but I felt a kinship with them, without words. I have been in their place.

The serendipity continued when we ran into Carly and her "special guest:" it was Macklemore, at the hospital to visit patients. (You may have seen him on Instagram or Facebook in photos at the hospital with Russell Wilson, who visits every.single.week.) Carly invited us over to meet him and his friend, so WE MET MACKLEMORE on the cancer ward! I thanked him for visiting the hospital and told him how much it means to the patients and families. We spoke for a few minutes about the blankets; he has noticed them on his visits. He was so present as we spoke. (He has also been out on the streets at night, without fanfare, with Seattle's Union Gospel Mission - another reason for admiring him.) Oh, serendipity was at work - and David just happened to be along for the ride!

We also had a wonderful visit over lunch with one of our favorite doctors - one who has become a close friend, and who took care of all of us when Katie was in the ICU.

Lying in bed last night, I reflected on the day with overflowing gratitude. My one regret was that I wished I could have done more for that sweet patient and her mother, but I also know that I am living their worst nightmare, so I always - and I mean ALWAYS - stay away from people who are in active treatment, unless they seek me out. I wasn't at the hospital as a chaplain, I was there as a guild president, for a specific purpose, but oh, my heart was there in pastoral care!

What a day, filled with the power of love - of Katie's love for her comforter, our family's love and gratitude, the love of staff and benefactors, our guild member's loving acts of generosity, and the appreciative love of the hospital organization for its guild members. And what is serendipity, anyway - isn't it really LOVE in action?

Gold Ribbon Night

Katie with Dr. Pollard (left) and Dr. Gardner (right)

Last night, I had the pleasure of attending the 2nd Annual Gold Ribbon Night for Pediatric Cancer Awareness, put on by Seattle Children's Hospital and Research Foundation. It was held in a beautiful private golf club in Seattle which is called "Broadmoor."

(Whenever I hear that name, I think, "detained during His Majesty's pleasure...in Broadmoor Asylum"* in England. I wonder if the founders of the exclusive club and gated community in Seattle had any idea about the name's "other" meaning...) 

Anyway, last night's event was a warm, elegant, yet informal affair, filled with passionate advocates of pediatric cancer research and the local clinicians we support, who are doing fantastic work in the field. It was delightful to mingle with friends, acquaintances and familiar doctors, nurses and researchers, sharing news and memories.

The program was led by our friend Jeff Towne, co-founder of the Ben Towne Foundation, and moderated by Dr. Bruder Stapleton (one of my personal favorites in the administration of the hospital). The panel consisted of three researchers who are doing ground-breaking work in different areas of pediatric cancer (two of whom - Dr. Rebecca Gardner and Dr. Doug Hawkins - took care of Katie) and a parent-advocate. They answered questions, and shared their thoughts about their current projects and personal research goals.

We watched this video, which tells the story of one of the patients recently cured by T-cell therapy at the Ben Towne Center for Childhood Cancer Research in Seattle. Please take a few minutes to watch - it will inspire you!

One of the highlights of the evening, for me, was sitting with Dr. Julie Park (Katie's primary oncologist) and our friend Charlotte, who was my "date" for the evening, and sharing in a heartfelt discussion with them after the panel program ended.
Another highlight was returning home and checking my messages to find that yet another patient has been cured by T-cell therapy here in Seattle. That is the 11th patient cured, as far as I know!

And today, even more wonderful news: an immunotherapeutic clinical trial is has just opened, under Dr. Park's leadership, for pediatric patients with neuroblastoma. This awful solid tumor has a horrific treatment regimen and a dismal survival rate, but now, there is a new way to treat it - using the knowledge gained from the successes in Dr. Jensen's T-cell therapy trials. This is the cancer from which Ben Towne suffered and died, so it is particularly meaningful to have this clinical trial at the BTCCCR.

If you would like to know how you can get involved in this important work, which will also benefit adult cancer research, please leave a comment here and I will reply privately

*quoted from A System of Medicine, Volume 8, edited by Thomas Clifford Allbutt, Sir Humphry Davy Rolleston

#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

Update from Dr. Jensen via The Ben Towne Foundation

glassybaby "cabo" (10% proceeds from which benefit the Ben Towne Foundation)

We received the following fall update from dr.jensen dated 22 Oct., 2013

"N of 1"

"The benefit 2013 was a marvel of mass enthusiastic support and the after effects are still reverberating through Ben Towne Center for Childhood Cancer Research! Ben Towne Foundation supporters have risen to the challenge throughout this past year and as a result of your generous contributions I am happy to say our research program can forge ahead– pedal to the metal. There is much to be done as we strive to create momentum and plan for a sustainable future of creating new more effective and less toxic therapies for cancers that afflict children. THANK YOU!

"For those of you who attended the benefit or who have been keeping abreast of the Center’s progress, our story has recently become tangible — we have broached the divide from wanting to help children in their battle, to having a name and a face, that of Lynsie Conradi, who bravely agreed to participate as our first patient on our leukemia T cell therapy protocol. While we were cautious in our expectations of what the lowest dose of reprogrammed T cells might do to help against a leukemia that was unresponsive to powerful chemotherapy, once infused back in to Lynsie’s body, those leukemia killing T cells multiplied somewhere between 1,000-10,000 fold and slammed that leukemia into a remission – that state when even with our most sensitive testing no leukemia cells can be detected. That was a homerun for Lynsie at a time when she needed one the most! And though we today stand at an N of 1 (only one patient treated thus far), we have witnessed the power of the reprogrammed immune system in action. Without your fiscal contributions that allowed us to accelerate the timetable to opening this trial, Lynsie would not be with us today. What a return on your philanthropic investment in Ben Towne Foundation!  Your generosity was also recently was leveraged in our successful bid for a $1 million Life Sciences Discovery Fund Opportunity Grant to support our leukemia trials in collaboration with our partners at FHCRC. 1 +1 = 10

"We have our second patient’s T cells made and infusion will take place here shortly. Critically, because we executed flawlessly in Lynsie’s care through the protocol, the FDA has released us from the initial trial age restriction of enrolling patients 18-26yrs of age, and the trial can now accept children from 1yr to young adults up to 26 years of age. Just last week we received three referrals of children in (desperate) need of effective therapy for their chemotherapy resistant leukemia. It is clear the pace of our trial will increase dramatically now. As we move forward, the T cell dose will increase as long as safety is maintained, and, if patients consistently respond as Lynsie did, we may be in the position to close the trial early and move on to the important Phase II trial to prove statistically we have a powerful therapeutic effect.

"The pieces are coming together for launching a second leukemia trial this November. This trial, called PLAT-02, will seek to help children who relapse with Acute Lymphoblastic Leukemia after a bone marrow transplant. It is very important that we try to help these children given that of the fatalities that occur due to refractory ALL in kids occur in this setting. Since relapsed ALL is the biggest contributor of pediatric cancer mortality and it happens most frequently after a BMT we would be remiss to not try making a difference in this setting. For most kids, a relapse after BMT is the end of the road...the most powerful applications of radiation and chemotherapy have failed and children are often too frail for much more. For many children we treat on PLAT-02, the T cells will be their last exposure to therapy. What this could mean, if our T cell therapy puts these patients in to remission, and the remission sticks, is that T cell therapy is more effective than their previous BMT.  Such evidence could justify replacing BMT with T cell therapy. A game changer!

"In many ways leukemia is the low hanging fruit for T cell therapy — a relatively easy target. Dealing with solid tumors such as neuroblastoma, brain tumors, and sarcomas to name a few will be much more difficult, in large part because we do not yet know what targets on the tumor cells will be safe to go after, and, because within a solid tumor resides potent immunosuppressive factors our T cells will need to evade. Much of our research and development efforts at BTCCCR are focused on these issues. We are making progess, and our first neuroblastoma trial is about a year out from being ready to submit to the FDA. This trial will focus on helping children that relapse or do not get in to a remission in the first place.

"Annette and Dr. Park have been pushing this project forward at an intensive pace (I am trying to get out of their way!). Adam and Ali are making solid progress in their engineering of T cells for attacking medulloblastomas, ependymomas, and gliomas. We are on a two-year horizon to a clinical trial. Sarcoma research is in its infancy and we are actively searching for target antigen leads through our collaborative work within the SU2C Cancer Dream Team projects.

"So you can see, we have big plans to help many children. Leadership at Seattle Children’s is inspired by what they are seeing and truly transformative ideas are being floated around for building a new cancer research facility with a state of the art high capacity bio factory to serve children not only in the Seattle area, Pacific Northwest and the entire West Coast, but also on a national/international scale. Seattle Children’s is thinking big and I am certain your enthusiasm and support is fueling that fire! Stay tuned as this story unfolds.

"I do think we are at a transformative moment in medicine. These do not come along every day, every year, or even every decade. Imagine how it must have been to be a pediatrician in the hospitals back when the polio vaccine was rolled out, and the wards crammed full of iron lungs keeping paralyzed children alive simply emptied out. A terrible villain vanquished. There are a lot of kids in hospital beds at Seattle Children’s and around the world battling leukemia and other childhood cancers every day. And you are a participant in this unfolding transformative moment. Perhaps generations in the future, people will marvel at the actions taken by the generous supporters of Ben Towne Foundation who spear headed the end of childhood cancers (starting with acute lymphoblastic leukemia) as to what they were once was known for — a killer of children.

"Stay strong BTF’ers!!!  You are inspiring us to move faster and reach farther!!

Yours-

Dr J"

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 researchers 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?

I'm Over Here Today...

...at http://karengerstenberger.blogspot.com/

Dr. Jim Olson and Project Violet

When Katie was in the hospital, she had a number of "attending physicians." Each of these doctors rotated for about three weeks "on service," and then three weeks off. They might have expertise in different cancers, such as neuroblastoma, leukemia or brain tumors, but they take care of a varied group of patients on the ward while they are "attending." After three weeks on, they have a few weeks away from the ward for research, teaching, service in other venues, etc.

One of Katie's attending doctors was Jim Olson, a brain tumor specialist. I knew about Jim before Katie got sick because he had taken care of Hayden Strum, the son of my friend Kathleen. Kathleen loved Jim and his way of being with patients and families, and Jim had loved Hayden. He found great inspiration for his research in Hayden's life - and in his death. In the strange new environment of the hospital, I looked forward to meeting the friend of a friend.

Jim took excellent, compassionate care of Katie (and later, of our friends' daughter, Hannah Hunt). He is gentle, thoughtful, calm and kind...and brilliant.

Since Katie's passing, Jim has invented of Tumor Paint. This new substance, made from scorpion venom, enables doctors to find, identify and mark cancer in the body so that it is much easier to remove in surgery - without damaging healthy tissue. Tumor paint makes cancer cells light up, so that surgeons can differentiate it from healthy cells. This is important in surgery in general, and vitally so in brain surgery; any healthy brain cells taken out - and any cancer cells left in the body - can lead to devastating effects. This paint will make surgery more accurate and less damaging.

I received a letter from Dr. Olson, asking me to share his latest news with you via the TEDx talk below. His letter read, in part:
"To raise awareness about the importance of discovering and developing drugs for cancer patients, our goal is to have 20,000 people view the TEDx talk this month - I hope you will help us achieve this important goal.  The Washington Research Foundation has generously offered to donate $10 to support our work for each time the talk is viewed, up to $50,000."
PLEASE take the time to watch this video, and allow me to introduce you to Dr. Jim Olson, who has one of the best bedside manners we encountered in pediatric oncology - in addition to being one smart dude. You will feel his passion for his work, and the reasons why he keeps doing it.

Want to know more? Please go to projectviolet.org to learn how you can get involved!

Can I Get an "Amen?"

Can I get an "amen" to this?

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

Brought to you by our friends at the Ben Towne Center, the Ben Towne Foundation, the Katie Gerstenberger Endowment for Cancer Research, Seattle Children's Hospital and countless other generous individuals who support the Center's work.

Words Cannot Do Justice, but I'll Try

Words cannot do justice to the excitement of the events of this past week, but I am going to try to express it anyway.

First things first: HAPPY BIRTHDAY, GREGG!

Gregg as a baby in his sister Linda's arms

Last week's book event at Eagle Harbor Books was a success. I know that it's bad manners to toot one's own horn, but I must tell you that I heard from the Events Coordinator (thank you, Victoria) that I was the bookstore's best-selling author last week.

"Because of Katie" outsold J.K. Rowling's new book!

YES, you read that correctly - my book topped the Harry Potter series' author's new book! See for yourself (and order a copy) here.

At the book event with Dr. Jensen (photo credit: Eagle Harbor Book Co. website)

It was a joy to have Dr. Michael Jensen and some of his family attend the event. It helped enormously to look out at the dear, caring faces in the audience and have the privilege of introducing them to this man who is changing the way cancer is treated, here and now. To have him answer their questions was a gift.

One of the most encouraging aspects of this event was the feedback I received from those who attended. Several people who have not been active in this area told me personally that they are now inspired to get involved. They realized after listening that there is something that they can do to help - and this is always a blessing to hear, because it is an important part of my message: you are not helpless; everyone can do something to help others.

I spent most of the following week writing on a deadline. I had about 18 essays to complete, limited to 125 words each. I invite you to try that - write an essay on a deep topic, and then whittle it down to 125 words. It's much easier to write screeds than to be concise! I'm applying for acceptance to an educational program (which I will announce if I'm accepted; if not, we'll say no more about it). I did my best with the application, and now, will let go of the outcome.

The Ben Towne Foundation's 3rd annual BENefit was Friday, September 28th. There were 1,100 people in attendance; the BENefit has more than doubled in size since its beginning, just two years ago!

On the ferry, en route to the BENefit. I think this is the only photo of us from the evening. Imagine a blue silk dress and scarf, belted at the waist, with blue suede shoes on me and a gorgeous blue, Italian suit on Gregg , with jacket - no tie.

We filled a table with my parents, my brother and sister-in-law, and our friends Reba, Bill, Mary Jane and Brian. Reba and Bill's daughter Hannah, and Mary Jane and Brian's daughter, Jenny, both died from brain tumors - both near the same age as Katie. It was their first time at the Ben Towne Foundation BENefit, but they have all been active in pediatric cancer research support.

We saw old friends among Seattle Children's Hospital staff, and met the new president of the hospital. We hugged, we celebrated, we remembered - and we were moved. Jeff and Carin Towne both spoke eloquently, as they always do.

At the BENefit, Dr. Jensen spoke and brought us to tears with this news (quote borrowed from the Ben Towne Foundation's facebook page update): "the first ever clinical trial application from the Ben Towne Center for Childhood Cancer Research for treating relapsed pediatric leukemia using reprogrammed T cells was approved by the United States Food and Drug Administration!"

This is the kind of treatment about which we could only dream when Katie was sick, with rapid results and no long-term, debilitating side-effects. We have actually seen more than one video of T-cells EATING cancer cells - it gives me the chills and makes me cry, in a good way. In five short years, we have moved from "we don't understand how the immune system works well enough to harness it for cancer treatment" to "it's happening, NOW." And it can be applied to adult cancer, as well as pediatric cancer; everyone benefits.

It's the answer to prayer - many, many prayers. You can watch this clip about it on the website of local news station KING 5.
 If you can give anything to pediatric cancer research, this is the place where I suggest you give it; this is where the income from the Katie Gerstenberger Endowment for Cancer Research goes.

Early in the morning after the BENefit, Gregg & I took a spur-of-the-moment mini-vacation to Victoria, B.C. It was Gregg's idea to go away for one night and two days on super short notice. We had a blast, as we usually do in that city. I would love to live there.

Lunch in our favorite Japanese restaurant.

Autumn light on the Empress Hotel.

My love, laughing over breakfast.

The view from the breakfast table.

The past couple of months have been a bit bumpy here, and this was a welcome time of rest and refreshment, a time to simply enjoy the natural beauty of a city we love during one of the most spectacular times of the year. Sunshine, crisp temperatures - perfect for 10 miles walking all around the neighborhoods we admire. We ate and drank well, browsed and window-shopped, went to a pub for live music and slept as late as we wanted to sleep. Up again the next morning for more walking and sightseeing.

The people in Victoria are polite, kind and helpful. We know our way around pretty well after all of these years, but when we stopped to discuss which way we wanted to go, several people saw us and offered help, thinking we were lost. We weren't lost, but we were impressed by their kindness!

Our dear neighbors took care of letting the cats in and out while we were away (thanks, Cami & John!). Upon our return, Liger climbed on my lap, and I felt something sharp when I petted him. Upon investigation, I discovered a cat's claw embedded in his head! I'm not sure what happened while we were away, but Liger is fine, and some other cat (we suspect Latte) is missing a claw. Serves the aggressor right!

Liger (a.k.a. "the Baby")

Today is a catch-up day for me, and when he gets home, we will celebrate Gregg's birthday. I'm thinking that "joy, awe and gratitude" are the best words to sum up the events of the past week.

Please Join Us at Eagle Harbor Book Co.!

 

On Sunday, September 23rd at 3:00 P.M., 

I will be signing and reading excerpts from my book, "Because of Katie," and showing a brief video about the Ben Towne Foundation's work

at Eagle Harbor Books 

at 157 Winslow Way East on Bainbridge Island. 

There will be quilts from Katie's Comforters Guild on display, and information about progress in childhood cancer research, all in honor of Childhood Cancer Awareness Month. 

Please come and join us!

September is the Month for Gold

Did you know this?

Everyone seems to know about October being Breast Cancer Awareness month, from the pink ribbons and the stranglehold that one very well-known advocacy group has on marketing. While I am all for advocacy and awareness, I am not in favor of one group trying to "own" a symbol which has the potential to help lead to cures for ALL types of cancer. But I digress...

September is the month in which people who have been touched by pediatric cancer get to turn a light on the topic. If we can talk about breasts and prostate cancer, surely we can shed light on the reality behind the statistics:

CANCER is the #1 cause of death  

by disease among children.

That's an ugly statistic, and it is even uglier when you have personal experience with it.

If you knew that there was a serial-killer of children on the loose in your community, what would you do? Would you form a neighborhood watch, find out all of the information you could, and do all in your power to keep your children safe? Well, there is a serial-killer out there, and it's called cancer. It's a variety of diseases, all grouped under one name.

What if the murderer got hold of one of your kids - say, kidnapped one of them? What would you do then? Would you try to pay the ransom, or call detectives and try to outwit him? Would you try anything and everything to free your child and bring her home safely? What if the only way to set your child free from this assassin was to poison her, or maim your own precious one? Would you do whatever it took to save her life?

I'll bet you would...and that's exactly the choice we had to face. We tried to save Katie using the only means available to us, but it wasn't possible. She suffered terribly, and she died anyway. And it happens like this every day.

Artwork by Heide Randall, mother of Jessica. Katie is in the 2nd row, 4th from the right.

Now, we're trying to find ways to save children (and adults - it benefits everyone!) that are NOT poisonous, and that do not cause long-term disability. There is a miracle-cure on the horizon: immunotherapy (T-cell therapy). It's happening now, right here in Seattle at the Ben Towne Center for Childhood Cancer Research, and it needs our support.

If you can give to research, please do. If you can't give, please tell someone - telling even one other person makes a difference. And if you are going to tell someone, please let them know about my book, which describes the way it really is in the world of pediatric cancer. Or you could give them a copy, either in Kindle or paperback format.

Thank you!

Artwork by Heide Randall