The Power of Student Leadership #AWSL2015

Coach Jamie, the chairmen of #AWSL2015 and results of their service project

Yesterday, Gregg and I traveled to Puyallup (in case you're not local, that's pronounced pyew-all-up) High School, through a driving rainstorm the likes of which we rarely see, even here in Western Washington. I had been invited, through a message sent to Katie's Comforters Guild's Facebook page, to address the 2015 Fall Leadership Conference of the Association of Washington Student Leaders. This wonderful group of high school students and advisors gathers annually to learn and grow, and then take what they have gained back to enrich their local school communities.

The group modeled their theme this year ("We Over ME") on some of the motivational concepts of the Seattle Seahawks (#WhyNotUs, #AllIn, #MakeThemNotice). They asked me to speak to them on Day Two (theme: "Why Not You?") of the three-day conference, before they began their annual service project: making blankets for Katie's Comforters Guild at Seattle Children's Hospital. Each school had gathered fleece for the project, and sent it along with the delegates to the conference. Coach Jamie, advisor to the conference's hosting team, wanted to help all of the students understand the power and purpose of what they were about to do.

As the name AWSL suggests, their programming includes a huge emphasis on developing leadership skills; what isn't apparent, until you enter the conference, is the joy, fun, energy and freedom-within-structure that is part of the organization. I felt it as soon as the students began to gather in the gymnasium; it was like a pep rally for human potential.

I had prepared a short speech and sent photographs of the Guild's work to Coach Jamie. I packed two of Katie's comforters to bring along with me. I prayed and listened and felt that everything was ready to go when I went to bed the night before the event.

Yet I awoke yesterday morning with an inner knowing that I needed to re-write the speech.

In the wake of recent school shootings, I felt moved to speak to the group about the power of simple presence, of helping others to know that they are not alone, of knowing that we are not helpless in the face of tragedy. I sat down at my laptop and the words poured out of me, just as they needed to do, by Grace.

When we arrived in Puyallup, we were warmly welcomed. The "Varsity Team" (conference chairs) Kelty, Nicholas and Kenton introduced me to the crowd: hundreds of energetic students. The lights were turned down and a spotlight shone in my eyes, so I could see only my notes. After sharing the message, there was a huge outpouring of love and gratitude from the students. They stood and clapped, lined up to hug me and say their personal "thanks," briefly told me their stories of connection to Seattle Children's Hospital or to someone with cancer, and then they departed in teams to make blankets.

Gregg and I were taken on a tour of the school by the conference organizers, meeting and taking photographs with some of the teams as they worked.

This is what love-made-visible looks like

After an hour had passed, we were called back into the gym so that the results could be reviewed and tallied. Imagine our surprise when the total came in at 396 blankets!

It was hard to hold back the tears as the students admired the immediate results of their teamwork: nearly 400 blankets of all shapes, sizes and colors of the rainbow. They asked me to sit for photos and continued to thank me, but I thank them, because they made this miracle occur. {If you are a user of Instagram, go to #AWSL2015 to see the student delegates' postings.}

To Jamie, Kelty, Kenton and Nicholas, 

to every student member and advisor of AWSL, 

to every school which sent delegates,  

Thank you! 

I am overwhelmed by your generosity of spirit, and inspired by each one of you! 

Our schools, state and country will be in good hands under your leadership.

Dr. Jim Olson & TEDx Talk

Jim Olson, M.D., is one of the two brilliant cancer researchers who will be on stage at Hannah's Hopeful Hearts at 7:00 P.M. on April 10, 2015 at Grace Church on Bainbridge Island. You can find out why we are so excited to have him speak to us by watching his TEDx talk:
Another way to get to know Jim is by listening to (or reading the transcript of) his interview with NPR. You can find that interview HERE.

Jim was one of Katie's attending physicians. Although his specialty is brain tumors, and he is a gifted researcher, one of his greatest gifts is his bedside manner. We appreciated his tender care when he attended Katie. Our friend, Kathleen Strum, whose younger son, Hayden, was one of Jim's patients in the 1990s had first told us about Jim; he also attended Hannah Hunt, for whom Hannah's Hopeful Hearts is named.

Jim's Tumor Paint and his other inventions through Project Violet have the potential to revolutionize and improve cancer care. Please join us by ordering your tickets and/or donating to this work at
http://hannahshopefulhearts.brownpapertickets.com

Reiki and Other Blessings

Sunrise on March 8th, 2015

Thank you for your kind thoughts and words around Katie's 20th birthday. We had a lovely day - which is in itself a kind of miracle, considering the circumstances - including a beach walk, delicious brunch at Alchemy Bistro and Wine Bar in Port Townsend, and a movie, with popcorn for dinner. A truly "Katie" kind of day.

Toasting Katie at brunch

Last week, I had the pleasure of accompanying our friend Charlotte on a tour of Building Hope at Seattle Children's Hospital. You may recall that David and I had a brief tour of the building in November for the purpose of a photo shoot, featuring Katie's Comforters Guild in the Guild News.

A patient receiving her blanket from Katie's Comforters Guild, represented by yours truly

On Thursday, Charlotte and I toured the Emergency Department, Cancer Ward and the Cardiac Intensive Care Unit. This new building is a great advancement upon what was available to us during Katie's treatment eight years ago. It is absolutely state-of-the-art, in every way.

There were wonderful surprises for me on this day, as we were met by several staff members who had taken care of Katie at her most fragile: during chemotherapy, and after her 18-hour surgery. It was a pleasure to be able to introduce these gifted caregivers to our friend, and to have them explain to her what they do, and how the facilities in this new building make it possible to make patients and families even more comfortable during the most stressful time in their lives.

We ran into one of Katie's dear oncology nurses

I am grateful to Drs. Baden, Brogan, Jeffries and Mazur for their generosity with their time on Thursday. I'm also thankful for all that they and their colleagues have done (and are doing) to save children's lives, as well as to the nurses and technicians who support their work - and to the donors who made this building possible! It truly is a team effort.

Since taking first-degree (Shoden) Reiki in November, I have been practicing daily, and looking forward to taking the next class (Okuden, or second-degree). I was able to do this a couple of weekends ago through Emerald City Reiki in Seattle.

My certificate of completion, with gratitude to Reiki Master Claire O'Shea.

Reiki brings peace, balance, calmness and relief from physical problems such as pain, digestive upset, stress, insomnia and much more. The potential for healing seems unlimited. The more I read about it, the more I enjoy learning from its practice, for Reiki isn't something that one learns from reading; practice is the most important way to learn. I find it has given me a new way to pray for myself, and others; it has restored a language of prayer which I had lost, and enhanced it, by keeping it free from "dogma." This freedom leads to pure joy and love when practicing Reiki. I think of it as a manifestation of the Holy Spirit, or healing power of God. [If you have questions about it, one of the best books I've read is called "Reiki: A Comprehensive Guide" by Pamela Miles.]

Update on Grandma:  we now have a routine in place for supporting Gregg's parents. We all take turns bringing Grandpa Ed to see Grandma Elaine, sit beside her bed with him until he gets tired, and then take him back to his home in assisted living (we are still waiting for a bed to open for Elaine in the same facility where she and Ed have been living). Gregg visits his mother nearly every day after work.

I am thoroughly enjoying serving on the board of the Bainbridge Public Library. What an interesting and generous group of people! At each meeting, I learn new things, and am grateful for the kindness and sense of community spirit among the members. Last Friday was my first time helping to host an artist's exhibit during the "First Friday" Art Walk. We host a different artist in the Community Room of the library each month. This month, I'll take a class to qualify for a certificate which will allow me to serve wine at these events.

Field's End (a committee of the Bainbridge Public Library) continues to offer opportunities for growth and stimulation for writers in our community. This week, we're hosting a Story Slam at Treehouse Cafe on Bainbridge Island, and on March 20th, there will be an Open Mic at the Poulsbo branch of Kitsap Regional Library. A Travel Writing Workshop will be taught by Perry Garfinkel in May through Field's End. If any of these events sound like fun to you, please visit www.fieldsend.org for more information.

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?

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

My Heart Overflows

Laura and I took a road-trip last weekend. We went to see David, because she has never been able to visit him at college, so far - in fact, she had never been to Spokane before.

The suspension bridge is below us, to the right

Girls' weekends are wonderful, and a girls' road trip is even more exciting. Talking, driving, talking, laughing, talking, eating, talking, drinking, talking, sleeping, talking, walking, talking...we had a lot of catching up to do! And to be able to spend time with David and his friends, in their element, before they all go in different directions post-graduation was, simply put, a gift.

Before the Senior Dance (thanks to the girls who posted photos on FB)

We visited a state park, crossed a suspension bridge, took an urban hike, took David out for hearty meals, went to the local brew pub and coffeehouse. We were even invited to a party. What happens at the Beer Olympics stays at the Beer Olympics, but I'll say that we played Beer Ball, saw a lot of people in costume and had a jolly good time. They made us feel so welcome.

We took some of the gang out to a restaurant afterward, which was also great fun.

While David was at the Senior Dance, Laura and I had a drink in the famous Peacock Lounge at the historic Davenport Hotel, and went exploring afterward, peeking into roped-off rooms and admiring the beautiful architectural details, old photographs and memorabilia on display.

We drove home through hail, sunshine, high winds, rain and snow - safely, thanks to God and our guardian angels.

Today, I had an productive meeting with a Core Team member to finalize plans for Word Soup, the workshop for beginning writers which I'm going to lead for Field's End. If you live in the area and are interested, you are welcome to sign up at www.fieldsend.org. I am excited to share inspiration and encouragement with other writers!

And just a few minutes ago, I received a link to a live donation page for the  
Katie Gerstenberger Endowment 
for Cancer Research at Seattle Children's Hospital. This came about because one of Gregg's cousins is planning a party for her daughter's birthday, and in lieu of presents for the soon-to-be one-year old, Aria, she is going to ask for donations to Katie's endowment. What a generous and thoughtful woman - thank you, Rebecca! 

Our representative at Seattle Children's Foundation, Carly, was able to coordinate the creation of this page (in less than a week - thank you, Carly!), making donations easy-as-pie for Rebecca's guests and EVERYONE else who wants to support T-Cell therapy cancer research in the Jensen Lab at the Ben Towne Center for Childhood Cancer Research at Seattle Children's Research Institute. Check out the page - it's so cool!

My heart is overflowing with gratitude and joy. Happy May Day!

Things Fall Apart

I've started attending church again. I haven't regularly attended church since Katie was admitted to the hospital in October of 2006...not because I was mad at God, but because I couldn't stand the crowds of people, nor contain my emotions during worship. I've been known to cry uncontrollably in church, which is distracting and distressing to me (and perhaps to others). But I've found a church that doesn't evoke floods of tears, and am enjoying it.

It's possible that I "should" go back to my old church, and simply surrender to my grief; let the tears come as I re-enter that place where we were once so happy, so much a part of things, held in great love. However, I haven't felt drawn to do so, and I'm going to honor that.

The homily in today's service touched on Jesus' prophecy that things were going to get very hot, very bad for his disciples. He spoke of catastrophe, betrayals, destruction, trials and the coming need to verbally give account, or defend the faith. He told his disciples that some of them would be killed, but then said "not a hair of your head will be harmed." What? How can both of those truths coexist? Apparently, he was speaking poetically about those precious hairs.

Every time I hear such words nowadays, I hear them through the filter of what happened to Katie and to our family. It's not an intellectual exercise; it just happens - I can't not go there. All stories that involve things falling apart, ground breaking up underfoot, loss, disaster - anything that brings to mind the end of the world as we know it - reminds me of the year of Katie's illness and death. I always ask myself if these things are true, in light of my own experience. It makes church very interesting.

The privilege of sharing the Eucharist on a quiet Sunday morning is important to me. I love that ritual, and its deep symbolic and literal meaning. It is a tiny feast, a weekly "Thanksgiving" meal, where all are welcome; it is purifying, nourishing and comforting.

In his homily, the pastor also asked us where we go - to whom do we turn - when things fall apart. He gave us his own answer, which was a bit surprising - and it made me think.

To whom do I turn? 

The "right" answer would be "to God," but I'm not sure that's completely true - at least, it's not that simple or direct. I turn inward, at first, when the ground is pulled out from under my feet. I take stock - do a quick assessment - of what has happened, what I have and what I have lost.

I turn to God, yes, but I also turn to those closest to me - my family. That's where we turned when Katie got sick - to the solidarity of one another's love and care - as well as to our home community, the larger community of Seattle Children's Hospital, our church and Ronald McDonald House. God was (is) present in all of those people and entities. He showed His love and presence through their love and caring.

After sitting in church with two of my friends (both of them bereaved parents), I drove home and felt grateful and privileged to be able to worship, as well as to have been able to go on a date on Saturday with my husband. We hiked for a few miles on a trail that is new to us, looked at beautiful wooden boats in a marina, boats on the ways (in all states of repair/disrepair), and then we moseyed through the Victorian town, admiring the architecture. Finally, we stopped at a pub for a light meal and a beer, and then finished our date at the local ice cream/candy shop. It was lovely.

We have lost a great deal, but we have not lost everything (as some of the victims of the typhoon in the Philippines have). But our loss touches everything; everything was (and is) affected by it. Nothing - not one thing - is as it was before Katie got sick and died, leaving our family to go on with three of us here, and one there.

There is a part of me that will always see my life through the lens of "things falling apart." In the six years since Katie's passing, I have adjusted to seeing life through the eyes of a woman who lives with three people in one room at Ronald McDonald House.

I am still that woman: the one who takes a walk each day to let off steam; who runs to the 5th floor of the hospital in her pajamas to shower before her daughter wakes up; who steals a couple of hours a week to spend alone with her husband, trying to preserve her marriage under intense stress; one who shares one bathroom with a minimum of three other people; one who has become a nurse, juggling medical supplies, helping her sick child to walk where she doesn't want to go, pushing a wheelchair, knowing her healthy child is not getting the attention he deserves, but unable to be in two places at once.

Though the conditions of my life have changed, I still see the world through that woman's eyes.

I continue to be amazed that we can go anywhere we'd like on a date, taking as much time as we wish, ordering whatever sounds good. It is such a privilege. While I might have previously thought (in my ignorance) that I "deserved" such abundance, now I know that it is all gift, and that it can come - and go - at any time. Jesus predicted it in his day, and it is still obviously true - friends will betray, disasters will happen, what we thought we could control slips through our hands. Though I have been given much, much has been required of me. Any time at all, anything can happen...and it's interesting that, rather than frightening me, this knowledge makes me grateful for everything I have, and for everything I have had to let go.

What an appropriate message for the week of Thanksgiving, and of David's 21st birthday.

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?

Dottie's Treasure

Last week, when Gregg was in Spain on a business trip, I received a package. I knew it was coming - I was looking for it - but there was no way to prepare for what was inside.

I wrote previously about sending Katie's clothes to Dottie A., and posted photos of the gorgeous quilt that Dottie made from Katie's T-shirts, which is now on Katie's bed. Last week, Dottie finished and shipped a second quilt, made by her loving hands out of Katie's other favorite clothing. There really are no words to describe how I feel about it, so I will show it to you.

Here is beautiful Dottie, holding the quilt

Here it is, on Dottie's bed, before she sent it to us

This is the fabric I chose for the backing

Here is a detail of one of the squares.
Katie chose this Blondie cartoon fabric when I taught her to sew.
She made a pair of pajama pants, and wore them a LOT.

This is the label which Dottie sewed onto the back of the quilt.

When I called and left her a message of thanks, Dottie replied, "I could just see you snuggled up in that quilt last night! Remember the quilt is truly from Katie, my hands just made it possible."

It's impossible to adequately thank Dottie for a treasure so precious - beyond price. And not just the gift of the finished quilt, but the time she took to find the right fabrics to go with Katie's clothes, the design that went into it, the labor of hand-stitching, the way she handled Katie's clothes, felt her spirit, saw her essence. This gift is an experience of the heart, not really expressible in words. The quilt is now on our bed, bringing plenty of comfort each day.

Dottie, thank you for this treasure!
I'm sure Katie would be very happy to see what you have made from her clothes with your loving hands.

Katie in her Blondie P.J. pants, with Latte (when he was a kitten)

All of this has happened because of Dottie's daughter, Linda, the physical therapist who took such creative care of Katie in the hospital. That relationship grew beyond Katie's passing. The circle of love and caring keeps growing out of that terrible, difficult time; it is transformed by loving hearts and hands.

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!

A Gift and a Prayer

Some weeks ago, I went into Katie's room and took her favorite clothes from her dresser drawers and closet. I held each item, thought about its significance, and placed it in a box to send to Dottie A., the mother of Katie's physical therapist.

Over a year ago, my friend Robin (of Grief and Gratitude) brought a precious item to show us: a quilt, made from her son Matthew's treasured t-shirt collection. When I saw it, the tangible reality of it took my breath away; handling it gently, I could see Matthew's tastes, activities, and get to know him a bit - I never had the privilege when he was alive, having met his parents after his passing.

That quilt made me think:  could I do something like that with Katie's clothes? Would I want a quilt like that? Yes, I would, but there was something frightening about offering her clothing to be cut up, even if it was for the purpose of reconstructing them into a keepsake. I couldn't bear the idea of giving her clothing - which was very important to Katie - to a stranger, even if that person was an "expert" in such quilting.
I couldn't do it.

Until I met Dottie. Dottie came with her daughter for a visit to our little town, and she is happens to be a quilter. A very experienced quilter, who has made t-shirt quilts like Robin's - she has even made quilts for her local funeral home to use when they go to pick up a person who has died. Rather than placing the body in a bag (as is often the case), this mortuary brings one of Dottie's hand-made quilts and covers the deceased person with it. It is a gift of tender comfort to families, and has made a difference in their community. People call and ask, "Are you the mortuary that uses the quilts?"

As we were browsing through our town on the day of Dottie's visit, we spent some time in the local quilting shop and talked about the craft. Dottie read my book and decided to make quilts for Katie's Comforters Guild. In the course of our day together, she offered to make a quilt for us, using Katie's clothes. I loved the idea, but it took about a year for me to be ready to let go of Katie's clothes and say, "Yes, please."

Here is the result, which is now on Katie's bed.

But there is more - Dottie is making another quilt for us, out of Katie's other clothes! I am overwhelmed by her generous spirit, and the bond she has formed with our girl. Handling her clothes, seeing the colors and themes has given Dottie a real sense of Katie's presence and spirit. To say that I'm happy and grateful for this fact, and this gift, does not even scratch the surface of my emotions. I will never be able to fully put these feelings into words, other than Thank you, from the deepest place in my heart.

A Prayer by Richard Rohr

"Loving God, we love how you love us. We love how you free us. We love what you have given and created to surround us. Help us to recognize, and to rejoice in, what has been given, even in the midst of what is not given. Help us not to doubt all that you have given us, even when we feel our very real shortcomings. We thank you for the promise and sign of your love in the Eternally Risen Christ, pervading all things in the universe, unbound by any of our categories of logic or theology.

"We offer you ourselves back in return. We offer you our bodies, our little lives, our racing minds and restless hearts into this one wondrous circle of Love that is You. My life is no longer just about me, but it is all about you." - Adapted from Radical Grace: Daily Meditations, p. 155, day 165

How often Fr. Rohr sums up my feelings, intuitions and hopes in his words! Here, he names what I am thankful for, along with what I am missing; his words name doubts and fears, along with the gifts given through faith in God. There is no hiding, denying or pretending here, but there is fearless acknowledgment of light and darkness.

So, Heavenly Father, thank You for the gift of Katie, of Linda and her mother, Dottie. As Fr. Rohr says, "we love what you have given and created to surround us...We thank you for the promise and sign of your love..." This quilt is indeed a sign of that great Love!

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

Encouragement from Dorothy

The original "Katie's Comforter"

 "I will bless the LORD at all times; his praise shall be ever in my mouth.
Let my soul glory in the LORD; the lowly will hear me and be glad. 

Glorify the LORD with me, let us together extol his name.
I sought the LORD, and he answered me and delivered me from all my fears.

Look to him that you may be radiant with joy, and your faces may not blush with shame.
When the poor one called out, the LORD heard, and from all his distress he saved him. 

The angel of the LORD encamps around those who fear him, and delivers them.
Taste and see how good the LORD is; blessed the man who takes refuge in him." - Psalm 34

Our family was blessed and comforted by many excellent caregivers during Katie's illness. One of these, about whom I have written in "Because of Katie," is Linda, a gifted physical therapist. Linda was able to see Katie as a person, beyond her diagnosis. She was able to develop trust and cooperation with Katie in the most frightening and painful period of her life - no small feat, when you think about how many strangers had entered Katie's 11-year old world, and were compelling her to do things she did not want to do.

Linda learned what was important to Katie, and worked within that frame to get her sitting up, out of bed, walking and even preparing a gift of cookies for her brother's birthday - all of this from the starting point of a bed in a cancer ward, and often with an IV pole in tow.

Since Katie's passing, I have stayed in contact with Linda. She has introduced me to others in her field. As a teacher, Linda has invited me to address students. She introduced me to the University of Washington's Doctoral Physical Therapy program, where I have been privileged to address students. She allowed me to interview her for the video. We have visited each other just for fun - Linda has many, varied interests and talents, and is good company. 

Last summer, Linda brought her mother, Dorothy, to spend the day in Poulsbo. We formed an immediate friendship, and found out that we share a love of fabric, among other things. Dorothy surprised me with a particularly generous offer: to make a quilt for us out of Katie's clothes. I have seen such quilts: my friend Robin has a gorgeous one, made of her son Matthew's t-shirt collection. Dorothy sent photos of quilts she has made for bereaved friends; each one is unique, and honors the spirit of the beloved who has gone on ahead of us.

Though I was intrigued by the idea, going through Katie's clothes and sending them away to be cut up was simply not possible for me. I could not let them go - couldn't even sort them out without being stunned and stuck in grief. So I thought about this beautiful offer, but couldn't make a move toward accepting it...until a few weeks ago.

One day, I could do it. I don't know why it was that day, but I had waited, honored my feelings, and suddenly, knew it was time. I went through Katie's dresser and closet, chose the garments that were particular favorites of hers (and mine), handled them with loving memories (and some pangs), visualized her wearing them, and then folded them into a box for shipping to Dorothy.

When I awoke this morning, this message was in my inbox: 

"Dear Karen;
Your package arrived yesterday afternoon, opening that box was like meeting Katie, can see why it took time for you to get to this point.  So many colors to work with, I  will enjoy this more than you can imagine!!! After looking at everything there is to work with,  I can see the quilt completed in my mind.  I'm not going to tell you ANYTHING about it until you open the package when it arrives!...Will get started on the creation tomorrow,  Katie and I have WORK to do!! Do take care and God bless. Love, Dot"

This message warmed my heart; I know that Katie's things are in the most tender, understanding and skilled hands. What a gracious gift - what a gracious lady! This is another example of the generosity and goodness of God, seen through the love of His people. Noticing, receiving and giving thanks for such goodness is a key to my survival, day by day. Doing my best to offer that kind of goodness into the world is another key. 

May this true story of goodness and kindness encourage you today.

"...Grace to you and peace from God our Father and the Lord Jesus Christ.
Blessed be the God and Father of our Lord Jesus Christ,
the Father of compassion and the God of all encouragement,
who encourages us in our every affliction,
so that we may be able to encourage
those who are in any affliction
with the encouragement with which we ourselves are encouraged by God.
For as Christ’s sufferings overflow to us,
so through Christ does our encouragement also overflow.
If we are afflicted,
it is for your encouragement and salvation;
if we are encouraged,
it is for your encouragement,
which enables you to endure the same sufferings that we suffer.
Our hope for you is firm,
for we know that as you share in the sufferings,
you also share in the encouragement."- 2 Corinthians 1