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"

A Day with Light

Thursday was a busy one. I drove David to school, and caught the ferry to the city for a day of meetings at Seattle Children's Hospital. You know by now that my heart is full of gratitude for the people who work there, who helped to bring light into the darkness of our child's cancer journey. Well, Thursday was full of light.

First, I stopped at the volunteer office, to register a batch of quilts and a huge bag of Auntie Nadine's knitted hats, scarves and sweaters into the donation system. I filled out the forms, talked about Katie with the kind-hearted volunteers (showed her photo, too) and then took the donations up to the SCCA (Seattle Cancer Care Alliance) floor. I met Julie and Ashley (ChildLife Specialists) at their office and gave them the quilts. I took hats to the SCCA ward (and hugged one of the nurses who took care of Katie) and hats to SCCA clinic (and hugged another of the nurses who took care of Katie). Then it was time to go back to the ChildLife office and get ready for a photo shoot.

Seattle Children's Hospital puts out a magazine called "Connections," several times a year. It's a great magazine that gives updates on what's new at the hospital. David and I were interviewed for an article about ChildLife (it will come out in the Winter issue), and it required a photo of us with Julie. Unfortunately, David couldn't make it, so they got me...and a batch of the quilts! It turned out to be a wonderful  opportunity to talk about Katie's Comforters Guild, while highlighting the essential role that ChildLife played in helping us.

As we were posing and trying to look natural (with me wishing I had had braces when I was young), laughing and chatting, I said to the editor of the magazine, point-blank: May I ask you a favor? Will you please mention Katie's Comforters Guild somewhere in the article? She said, Yes, and asked me to tell her about it. She said she would use the info in the photo caption...so I am now filled with hope about that. Part of the fun was seeing her (and the photographer's) response to the quilts. They wanted to see each one, hear about them, touch them, and look at the combinations of fabrics. They chose their personal favorites; they engaged with the idea and the physical reality of the quilts. That made me very happy.

After the photo shoot, Julie and I returned to her office, where we reviewed her comments on a book that I am working on for adolescents and teens who have cancer. She was full of insightful, concrete ideas. We weren't able to finish, because I had another meeting in another part of the hospital (for the Guild)...so I ran off to that meeting. Down to the coffee shop on the 1st floor, to meet with the President of the Guild Association and a board member about progress on Katie's Comforters Guild, and our next steps. It was very energizing and exciting to talk about it with them. Their experience is vitally important to my learning process and to making this new, "virtual guild" (read:  no meetings!) into a thriving entity.

In the midst of this meeting, in the doorway of the coffee shop, I saw Dr. C., the genius heart surgeon who performed part of Katie's surgery. My attention veered instantly away from the meeting, to him. I love Katie's surgeons. How can I describe the love I have for the two men (and their supporting staff) who took the enormous tumor out of Katie's abdomen, and gave her a second chance at life? It's deep, passionate and real. Dr. C. came over to our table to chat.

I jumped up to hug him, and we all started to talk. I asked him if he remembered Katie's surgery (he performs A LOT of surgeries). He told me, Yes, that he had just been talking about it a few days ago. He said he was being interviewed for a book, and that the author asked him if he goes home each night and thinks about how amazing his day was, doing these surgeries. Dr. C. said, No, he doesn't, because that's his job; it's what he does. Apparently, Dr. W. (Katie's chief surgeon, who was in charge of, and performed most of, the 18-hour surgery) was standing nearby during this interview, and Dr. C. told the author that there are some surgeries that he and Dr. W.  have done together that they will never forget; Katie's was one of them. I showed him the photographs of her after she recovered, just being a kid and enjoying life.

Dr. C. asked me how I am doing. I told him that doing things like the quilt project/guild helps me; that it feels good to try to bring some light to the darkness. He told me that he often uses the glassybaby candle that we gave him (we gave them to many staff members as a "thank you" when we left the hospital), and he said that the glassybaby is still bringing light. That was a lovely thing to say, and it made me happy.

After that meeting was over, I went back upstairs to finish discussing the book with ChildLife. More great input and insight from Julie and Ashley. Lots of ideas, notes and ways to go forward. Then I got into my car and drove to Ronald McDonald House to donate another huge bag of knitted hats, scarves and sweaters; then back to the ferry to come home.

That was a big day, for me. Lots of progress, lots of openings, lots of light. I did realize that I spend so much time alone that I have now become something of an interrupter. UGH. Otherwise, it was a great day, thanks to everyone who is supporting these efforts. They help to make my life more worthwile.