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!

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"

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.