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!

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

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/

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.

My Question Has a New Answer - HOPE is HERE

Six years ago, I asked a question: why are we poisoning children, rather than strengthening their immune systems?
Six years ago, the best answer to that question (when posed to an immunology expert) was, "We don't fully understand how the immune system works."
Today, the answer is quite different...today, doctors here in Seattle are harnessing the immune system and using it to defeat cancer - relapsed cancer, a very tough kind.
Today, our friends at the
Ben Towne Center
for Childhood Cancer Research
at Seattle Children's Hospital
(which the Katie Gerstenberger Endowment supports) have made a thrilling announcement of progress. Please follow this link and find out more about it:
HOPE is HERE

Thank You for Listening Generously

“When you listen generously to people they can hear the truth in themselves, often for the first time.”

Rachel Naomi Remen

I rarely write postings for all of my blogs at the same time, but today, I am doing just that. If you visit any of my blogs (www.karengberger.blogspot.com , www.katiescomfortersguild.blogspot.com , www.katiegerstenbergerendowment.blogspot.com  and www.abundantlivingaftercatastrophe.wordpress.com ) this is what you will find.

It’s been a deeply moving season here. The end of summer brings with it memories of Katie’s passing (August 16^th), my parents’ anniversary (this year they marked 60 years of marriage on August 17^th), the start of the school year (David is a junior in college, studying in Italy for a semester; Katie should be a senior in high school, looking at college choices and enjoying her last year at home with friends – but she is not). It also marks the anniversary of the start of her illness, her diagnosis, and the 10 months which were a kind of living hell, leading to her passing. The 10^th of October, the day we entered the hospital “for tests” and didn’t come out for months; October 13^th, the day we found out that it was cancer (though not what type) and Katie’s first round of chemotherapy began.

Gregg let me know during this time that he is not comfortable hearing the news, in detail, of all of my involvement in the world of cancer. He can take only so much of it. My work does not give him solace the way it does me; it simply reminds him of what took our daughter away. When I asked him if the advances in research, cures and awareness make him feel better, he replied, “No.” None of it will bring Katie back, so it’s not a comfort to him. Even though it comforts me, I need to filter some of what I ask him to participate in. Fair enough.

Shortly after my book reading event at Eagle Harbor Books in September, Gregg and I attended the Ben Towne Foundation’s annual BENefit. We were “table captains,” which really means that we gathered interested family and friends and all sat together for dinner. The Foundation makes it so easy to “host” a table that I wouldn’t feel right calling it “hosting.” That was the second cancer-related event in a month’s time, but Gregg loves the Townes and wants to support the Foundation.

At the BENefit, Dr. Michael Jensen announced that his work on relapsed leukemia has been given approval by the FDA to move into clinical trials. That means that children here in Seattle who have no other hope than a miracle have a chance at that miracle; they can enter a clinical trial using their own re-engineered T-cells to fight their own cancer. It will begin sometime in the next few weeks.

This announcement brought our table to tears. We were sitting with my parents, brother and sister-in-law, as well as with two other couples who are friends – both of whom have watched their own daughters die from brain cancer. Three sets of bereaved parents heard the news together. It was a dramatic moment, and one that has truly changed my life.

I finally feel relief.

I feel relief, for the first time since Katie died.

Since Katie died, I have felt like the parent of a murdered child. I have felt that the murderer is “at large,” and beyond the capacity of “law-enforcement” to catch. It hurts. I feel it’s my duty as her mother to catch her killer and bring him to justice. I didn’t realize that so much of my work and energy has been directed to catching this killer – but it has.

After the BENefit, several family members and friends joined me for a tour of the Ben Towne Center for Childhood Cancer Research. At the end of the tour, I took Dr. Jensen aside and thanked him. I told him that for the first time since Katie’s passing, I feel as if I can relax. I know that the killer is now identified. We may not have him on death row yet, but his whereabouts are known, and he is in the crosshairs of the law. They are going to catch him, and stop him from killing other children (and adults). This is Dr. Jensen’s mission, and it is now beginning to be available to patients (not just lab mice).

On the tour, my dad asked Dr. Jensen two important questions (and I think I heard the answers correctly):

1)   How much does it cost annually to do what you are doing?

Answer: $1.5 million

2)   How much do you need annually to be able to conduct experiments on the cancers you want to cure next?

Answer: $15 million.

Friends, what is being spent on the next election makes this sum look positively PALTRY. This research has the potential to cure children AND adults. If you know anyone who can contribute to it, please invite them to contact me or the Ben Towne Center. I will be happy to effect an introduction.

What I want most to share with you is the fact that I feel a new freedom now. The baton is in Dr. Jensen’s hands (and those of his colleagues, some of whom were part of Katie’s care team). I will continue to do my best to raise awareness and financial support, but I can finally let go of this part of my work, because it is being done by the professionals. And some of the thanks for that goes to Carin and Jeff Towne, and the memory of their precious son, Ben.

I wasn't aware that I was holding my breath for this to happen, but I have been…and I can rest now. Thank God that prayers are being answered! The timing was not sufficient to save Katie’s life, but I believe that the cure will be part of her legacy.

Thank you for reading my blogs, for commenting, for supporting our family through this time. Though we will never be “over it,” your listening, caring and praying has been part of our healing process. That process continues - and finding a cure for cancer is surely a part of it.

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.

Shout it From the Rooftops

We've had a fantastic week here. I am in a rush, so I'm going to give you the "Reader's Digest" version, and hope to fill in later.

-Maribeth was here for a visit.

-I gave a presentation to over 50 people at Eagle Harbor Book Co. about "Because of Katie," Katie's Comforters Guild and Dr. Michael Jensen's work at the Ben Towne Center for Childhood Cancer Research. Dr. Jensen was there, and answered the questions that were over my head. Awareness was raised. Hope grew. Books were sold and signed.

- An article is in the works for the fall edition of Pomona College Magazine (the publication of one of my alma maters) which will tell about Katie's Comforters and the pediatric cancer journey, also highlighting "Because of Katie."

- I received the following message via email (and permission to share it) from one of the oncologists who worked on Katie's treatment protocol at St. Jude's Children's Hospital. Check out his title (below), as he is now at Peyton Manning Children's Hospital:

"Hello Karen:

 

Thank you very much for sending me a personalized copy of your wonderful book as well as copy of the CD’s. I greatly enjoyed reading  your book, and was very moved and inspired by the way you told your story. I really liked the practical tips of “ what to do and Don’t” at the end of the book, and I advised Child Life and Hospice services at our Hospital to purchase the book and distribute copies to selected families.

Yesterday...I was able to watch the CD’s and learned a lot from your narration as well as from the interviews with different HCP and spiritual team. I applaud you for your efforts and really am of the conviction that the book and CD’s will fill a gap in the education of parents of cancer patients as well as many health care professionals taking care of children with cancer.

 

Again, warmest Congratulations on accomplishing this project and thanks for sharing it with me.

 

Best regards,

Bassem"

 

Bassem I. Razzouk MD, FAAP

Clinical Voluntary Professor, Cincinnati Children's Hospital

Medical Director

Children's Center For Cancer and Blood Diseases

Medical Director , Pediatric Hospice Services

Peyton Manning Children's Hospital at St. Vincent

Indianapolis IN

Now, we can shout it from the rooftops: "Because of Katie" and our DVDs are in use at two eminent children's hospitals! Thanks be to God.  
Now, to spread the word to other institutions!

 

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