The Power of Love (or Serendipity)

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

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

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

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

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

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

Please visit #strongagainstcancer on Facebook, Instagram and Twitter

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

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

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

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

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

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

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

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

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"