"Hannah's Hopeful Hearts" Photo Album

In case you weren't able to join us at Hannah's Hopeful Hearts 2015, here are some photos by Ronda Broatch, shared by Reba Ferguson on Facebook.

Photo credit: Ronda Broatch

Photo credit: Ronda Broatch

Katie and Hannah's photos with glassybabies. Photo credit: Ronda Broatch

 Butterflies: the symbol of resurrection. Photo credit: Ronda Broatch

The food & flowers were simply outstanding. Photo credit: Ronda Broatch

Photo credit: Ronda Broatch

Photo credit: Ronda Broatch

Photo credit: Ronda Broatch

Photo credit: Ronda Broatch

Dr. Jim Olson. Photo credit: Ronda Broatch

Introducing Dr. Mike Jensen. Photo credit: Ronda Broatch

Dr. Jensen. Photo credit: Ronda Broatch

Dr. Olson and Dr. Jensen discussing their work, moderated by Fred. Photo credit: Ronda Broatch

Hannah's Hopeful Hearts. Photo credit: Ronda Broatch

Fred facilitating the paddle raise. Photo credit: Ronda Broatch

There is still time to give, and you can  ask your employer to match your gift (Boeing did this for us, and doubled our impact)! Thanks, Boeing!
All you need to do is direct your gift to:
Megen Strand
Crush Kids’ Cancer Guild 
Tax ID# 27319304 Seattle Children's Hospital Guild Association
M/S S-200, PO Box 5371, Seattle, WA 98145
Crush Kids’ Cancer Guild 
Tax ID# 273193047
 If you have any questions, please call Megen at 206-987-4823.

And here is the Hunt-Ferguson family who made it all possible, especially the valiant-hearted, light-bringing woman in the center, Reba - mother of Hannah, who inspired all of this!
I love you, Reba!

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!

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"

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

What Would You Tell Yourself?

My friend Elizabeth Aquino of the blog "A Moon, Worn as if it Had Been a Shell" invited her readers to take part in a video she was making.

Elizabeth is the mother of Sophie, Henry and Oliver, wife of Michael, and an elegant writer, an activist and pastry chef. Feeling intimidated yet? But don't be - she is also one of the warmest, most supportive, empathetic, sharing and inclusive persons I've met in the blogisphere. Having a full life of her own, Elizabeth still takes the time and makes regular efforts to care in meaningful ways about the lives of others. Hence her participation in the Hopeful Parents community, and the video.

The video's participants are parents of children who have disabilities, and the topic is,  
What would you tell yourself, if you could go back to the day of your child's diagnosis?

I invite you to watch, and let me know what you think when you see the messages. Here is the link: Elizabeth's VIDEO .

Thank you, Elizabeth, for asking such a good (and deep) question, for listening to the responses, and for sharing them with the world.

Guild Luncheon = Friday Fun

On Friday, I had the pleasure of attending the annual Seattle Children's Hospital Guild Association Luncheon at the Westin Hotel. It's the meeting at which all guilds gather and celebrate the accomplishments of the past year, learn about new challenges and receive updates from hospital personnel. There are elections of officers and awards for outstanding service, a music video showing highlights of what we do and how we do it, interviews with patient/family members and time to shop at booths staffed by guilds (which sell items to support the hospital).

I brought my mom with me, and upon our arrival, we met one of our guild members, Bonnie P, and sat together. We were also seated with members of the Adaline Coffman guild, and I had the opportunity to chat in depth with a delightful young lady who is a member of that guild.

The guild association was founded around the same time as the hospital itself, by Anna Clise (who also founded the hospital). It is unique in the nation, and we are told it is the envy of other hospitals.  The power of goodwill that the guild association inspires and harnesses is truly transformative, to those serving and to those it serves.

Some fun facts about the Guild Association in 2011:
7,000 members
500 guilds
11 new guilds
$10.8 million project revenue
$141,000 membership revenue
$501,900 net thrift store revenue (from wonderful stores like Bainbridge Island's Bargain Boutique)
170,535 volunteer hours
$2.5 million guild-affiliated revenue (Foundation programs from guild members and their friends)

Please take a few minutes to watch this video, get inspired, feel the love and passion of our members, and consider JOINING us!

The Rest of the Story

Maribeth and others on stage with Beth Moore, illustrating "We, You & They" in Paul's 1st letter to the Thessalonians Maribeth was surprised to be asked to go up on the stage Saturday morning. Though she has a background of performing on stage, this particular invitation was not to perform something she had rehearsed. This was live, unscripted participation in something big. It was absolutely lovely for me to be present with her as she got to meet a teacher who has meant so much to her over the years. Saturday's session included prayer, music, worship and teaching. Again, I cried a great deal, with fresh sorrow and longing for Katie pouring out from deep inside of me. I felt broken open, my heart in God's hands. I could see that this kind of opening was taking place in other women, as well - there were many tears around the auditorium. A lot of emotion is generated when you get a group together and speak of the deepest relationships we have. The awakening of deep emotion itself is not necessarily to be trusted as a sign of lasting conversion, yet it can be a way of opening - to start fresh, to feel or see anew, to allow, to "turn around." So I let go, and just experienced it. And I listened, as Beth Moore challenged me to wonder if my prayer life, and my relationship with God, are producing fruit...fruit that will feed and nourish not just myself, but others - including those who have not yet met God who is Love. I have tried over the past five years to simply survive the cataclysmic events surrounding Katie's cancer diagnosis, treatment and death. To be frank, I have counted it success to still HAVE a relationship with God, after all that we went through. I have tried to rededicate my life to serving Him, as much as I am able. I try to do this daily, but I don't always accomplish it. I have not asked a great deal of myself in terms of growing in my faith, or in terms of sharing it with others; I have simply followed the road of gratitude and love, wherever it led, day by day. There is no shame or guilt in that; I did what I could do, and did it as faithfully as possible. Over these five years, I have felt called to serve the hospital, the cancer community and the grieving community. My book and the video are definitely fruits of that labor, and they are good. In Kansas City, I was moved to wonder in what field God might be calling me to work and serve Him now. I am not finished sharing the book; I have a marketing plan to implement. But perhaps the seeds of the next book are being planted; perhaps my work will grow beyond this particular field. I am reading Beth Moore's book, "Believing God;" it's not about believing IN God, but believing God's promises. I am listening, and doing my best to open my heart and mind to His message for me, NOW.  Latte, trying to absorb Beth Moore's book, "Believing God" by osmosis  These words of Father Rohr's resounded within me: "The Gospel of Mark (and all of the other gospels) leads up to Jesus finally standing alone, without anyone really comprehending what He’s talking about when He teaches on the “Reign of God.” Jesus realizes that He has to do it in His flesh. He’s got to stop talking about it. He’s got to let it happen. Maybe you’ve had the experience that it’s not until someone dies that we ask the ultimate questions, and that’s what we mean when we say Jesus had to die for us. It’s not that He had to literally pay God some price (unfortunately, many Christians understand it that way, as if the Father is standing up there in heaven with a big bill, saying, 'Until I get some blood, I’m not going to change my mind about the human race.'). That puts us in a terrible position in relation to God, and it can’t be true. As if God could not forgive without payment. It pulled God into our way of loving and forgiving which is always mercenary and tit for tat. "Quite simply, until someone dies, we don’t ask the big questions. We don’t understand in a new way. We don’t break through. The only price that Jesus was paying was to the human soul, so that we could break through to what is real and lasting." - Richard Rohr, Adapted from The Four Gospels (CD, MP3) Someone has died, and I am asking the big questions. Not only has Katie died, but part of the old Karen has, as well. What will this mean? I do not know, but I do know that asking God to "have at me" as I traveled produced a lot of movement in my life. I pray to be led very clearly and gently to the work that God has for me now.

Latte, getting "all up in my bi-ness" at home

PAC2 (People Against Childhood Cancer)

A couple of years ago, Gregg, David and I flew to Indianapolis, Indiana, to take part in the Hope & Empowerment Event that was conceived by our friend, Michelle Tucker (a.k.a. "MothaTucka"). If it doesn't sound familiar, you can read about it HERE.

 

Michelle invited a group of us to share what we have learned on the journey with our children who have had cancer. I spoke with a particular emphasis on the importance of making hospice available for children who need it.

Did you know that hospice care isn't available everywhere? It isn't, and even where it is available, in some places there is no one willing to provide that care for a dying child. That means that you could be sent home from the hospital with a dying child, maybe even with a dying child and a brand-new baby or other children, and NO ONE WOULD COME TO YOUR HOUSE AND HELP YOU.

Think about that for a moment, please.

No one would visit and check on your child's disease process, answer your questions, take your calls when the pain surged out of control, come and help you resolve her digestive or breathing issues, help you take the best and most compassionate care of your dying child. No one. You would have to figure that out on your own. That is UNACCEPTABLE! So I went to Indiana to share how much it helped us to have hospice care, and to encourage them to set it up for their patients. And I'm grateful to say that it worked; they made changes for the better in Indiana.

Some of the great people we met at H & E

Other parents spoke about what they knew. One of those dear people was "AJ's Dad," who founded PAC2, or People Against Childhood Cancer. After his son AJ passed away from cancer, AJ's Dad created this wonderful "advocacy community on a mission to raise awareness of childhood cancer." PAC2 publishes regular updates pertaining to pediatric cancer via email, on their website and on facebook, including legislative news, progress in fundraising, awareness and research. It helps to keep us informed and connected to each other across the miles.
"PAC2 was founded in 2008 to provide the childhood cancer community a place to connect and support the mission of curing childhood cancer. It has since grown to over 5,000 members including nearly 100 childhood cancer organizations. PAC2 provides a national forum for sharing information and news and continually supports and promotes the efforts of all childhood cancer organizations. Its overall mission is reflected in its slogan 'One Voice Against Childhood Cancer.' PAC2 is an independent organization that does not raise funds or duplicate or compete with the efforts of its members. www.PeopleAgainstChildhoodCancer.org"

Today, PAC2's February - March Update (newsletter) arrived, and in it is a link to my new book, along with two others. Thank you, PAC2!