Words Cannot Do Justice, but I'll Try

Words cannot do justice to the excitement of the events of this past week, but I am going to try to express it anyway.

First things first: HAPPY BIRTHDAY, GREGG!

Gregg as a baby in his sister Linda's arms

Last week's book event at Eagle Harbor Books was a success. I know that it's bad manners to toot one's own horn, but I must tell you that I heard from the Events Coordinator (thank you, Victoria) that I was the bookstore's best-selling author last week.

"Because of Katie" outsold J.K. Rowling's new book!

YES, you read that correctly - my book topped the Harry Potter series' author's new book! See for yourself (and order a copy) here.

At the book event with Dr. Jensen (photo credit: Eagle Harbor Book Co. website)

It was a joy to have Dr. Michael Jensen and some of his family attend the event. It helped enormously to look out at the dear, caring faces in the audience and have the privilege of introducing them to this man who is changing the way cancer is treated, here and now. To have him answer their questions was a gift.

One of the most encouraging aspects of this event was the feedback I received from those who attended. Several people who have not been active in this area told me personally that they are now inspired to get involved. They realized after listening that there is something that they can do to help - and this is always a blessing to hear, because it is an important part of my message: you are not helpless; everyone can do something to help others.

I spent most of the following week writing on a deadline. I had about 18 essays to complete, limited to 125 words each. I invite you to try that - write an essay on a deep topic, and then whittle it down to 125 words. It's much easier to write screeds than to be concise! I'm applying for acceptance to an educational program (which I will announce if I'm accepted; if not, we'll say no more about it). I did my best with the application, and now, will let go of the outcome.

The Ben Towne Foundation's 3rd annual BENefit was Friday, September 28th. There were 1,100 people in attendance; the BENefit has more than doubled in size since its beginning, just two years ago!

On the ferry, en route to the BENefit. I think this is the only photo of us from the evening. Imagine a blue silk dress and scarf, belted at the waist, with blue suede shoes on me and a gorgeous blue, Italian suit on Gregg , with jacket - no tie.

We filled a table with my parents, my brother and sister-in-law, and our friends Reba, Bill, Mary Jane and Brian. Reba and Bill's daughter Hannah, and Mary Jane and Brian's daughter, Jenny, both died from brain tumors - both near the same age as Katie. It was their first time at the Ben Towne Foundation BENefit, but they have all been active in pediatric cancer research support.

We saw old friends among Seattle Children's Hospital staff, and met the new president of the hospital. We hugged, we celebrated, we remembered - and we were moved. Jeff and Carin Towne both spoke eloquently, as they always do.

At the BENefit, Dr. Jensen spoke and brought us to tears with this news (quote borrowed from the Ben Towne Foundation's facebook page update): "the first ever clinical trial application from the Ben Towne Center for Childhood Cancer Research for treating relapsed pediatric leukemia using reprogrammed T cells was approved by the United States Food and Drug Administration!"

This is the kind of treatment about which we could only dream when Katie was sick, with rapid results and no long-term, debilitating side-effects. We have actually seen more than one video of T-cells EATING cancer cells - it gives me the chills and makes me cry, in a good way. In five short years, we have moved from "we don't understand how the immune system works well enough to harness it for cancer treatment" to "it's happening, NOW." And it can be applied to adult cancer, as well as pediatric cancer; everyone benefits.

It's the answer to prayer - many, many prayers. You can watch this clip about it on the website of local news station KING 5.
 If you can give anything to pediatric cancer research, this is the place where I suggest you give it; this is where the income from the Katie Gerstenberger Endowment for Cancer Research goes.

Early in the morning after the BENefit, Gregg & I took a spur-of-the-moment mini-vacation to Victoria, B.C. It was Gregg's idea to go away for one night and two days on super short notice. We had a blast, as we usually do in that city. I would love to live there.

Lunch in our favorite Japanese restaurant.

Autumn light on the Empress Hotel.

My love, laughing over breakfast.

The view from the breakfast table.

The past couple of months have been a bit bumpy here, and this was a welcome time of rest and refreshment, a time to simply enjoy the natural beauty of a city we love during one of the most spectacular times of the year. Sunshine, crisp temperatures - perfect for 10 miles walking all around the neighborhoods we admire. We ate and drank well, browsed and window-shopped, went to a pub for live music and slept as late as we wanted to sleep. Up again the next morning for more walking and sightseeing.

The people in Victoria are polite, kind and helpful. We know our way around pretty well after all of these years, but when we stopped to discuss which way we wanted to go, several people saw us and offered help, thinking we were lost. We weren't lost, but we were impressed by their kindness!

Our dear neighbors took care of letting the cats in and out while we were away (thanks, Cami & John!). Upon our return, Liger climbed on my lap, and I felt something sharp when I petted him. Upon investigation, I discovered a cat's claw embedded in his head! I'm not sure what happened while we were away, but Liger is fine, and some other cat (we suspect Latte) is missing a claw. Serves the aggressor right!

Liger (a.k.a. "the Baby")

Today is a catch-up day for me, and when he gets home, we will celebrate Gregg's birthday. I'm thinking that "joy, awe and gratitude" are the best words to sum up the events of the past week.

Good Things Are Happening

July has been a busy month, but you wouldn't know it from reading here - it's the LACK of postings that tells the story! Let me fill you in...

David had his wisdom teeth removed last week. This was his first surgery (two were impacted), his first IV (as he noted) and his first experience with general anaesthesia. I wondered if I would have any symptoms of PTSD when taking him in for the procedure or caring for him afterward, but it didn't happen. He did well, he was funny on drugs immediately following the surgery (reminded me of Katie on what they call "happy juice" in the hospital), and we had a quiet few days here.

The day after his surgery, I went to Camp Goodtimes West again to volunteer with the Arts and Crafts program on Carnival day. It is a perfect venue for me to help. As time goes by, my love for, understanding and appreciation of the magic of camp grows. I am so very thankful that Katie was touched by it, especially considering what awaited her just two months later. I like to think that it brought her back to some connection with her self as a KID after the horrific trauma of cancer treatment, and before the issues of facing her own mortality.

Carnival Day at Camp with a Rotary friend, Bunky, Mooselips, and me (Truffle)

Lunch on the deck with Camp staff and volunteers (some of their names: Gypsy, Yak, Leo, Flower and Loop)

Have I mentioned that Camp is on an island, and that Katie's ashes were scattered in that harbor? I think so.

I attended a class this month about blogging, and am planning to start a new, different blog. I feel called to write more about the spiritual journey, about the impact of Katie's life, but also about this new life, and perhaps a bit less about our own family/home life. I will keep up this blog in that vein, but will branch out further to new, exciting frontiers on the new blog. I plan to give it a name and announce it here soon.

Today, I met with the new person assigned to the Katie Gerstenberger Endowment for Cancer Research at Seattle Children's Hospital's Foundation. I will be updating that blog with more information soon, but the big news is that Katie's endowment's income will now be funding research at the Ben Towne Center for Pediatric Cancer Research, under the guidance of Dr. Michael Jensen! This has been our goal and desire since we first heard about Dr. Jensen's work, and we are thrilled to say that, due to the generosity of our family and friends who have donated, her endowment is now contributing in a concrete ($$) way.

When Katie was on hospice care and knew that she was going to pass away, we broached the subject of creating an endowment in her memory. We asked if she had any special requests. Her reply was that she wanted the endowment to support research to cure the cancer she had (adrenocortical carcinoma). Since this illness is so very  rare, we expanded the mission to include research that will lead to cures for "all solid tumors." Dr. Jensen's work will do just that. Clinical trials for new therapies are set to commence this fall, perhaps as early as September!

I am creating a proposal to teach a class in our community, and am filling out an application to enroll in a program that is very near to my heart's desire. I will post here as the answers roll in.

We have hosted friends and family here, and have been to visit others.

At my parents' home with friends, just before digging into the trifle that I made for dessert.

Gregg took a 10-day trip to France and Spain for work. He was able to see new places, eat and drink well, and still accomplish what was needed for his firm. He enjoyed the fireworks in honor of Bastille Day in Biarritz, and was near the Tour de France route, but didn't intersect it.

There is guild news in the works, and that will be posted soon.

What's new with YOU?

The Ben Towne Foundation BENefit, 2011

benefit 2011 Feature Video from ben towne foundation on Vimeo.

On Friday night, Gregg and I attended the Ben Towne Foundation's 2nd Annual BENefit at the Sheraton Hotel in Seattle. We had lots of company - there were around 900 people in attendance! Gregg & I attended the fabulous inaugural (launch) party last year, and helped out at the registration table. I think they had double the attendance of their first year on Friday.

We met Carin and Jeff Towne, Ben's parents, through one of Katie's nurses - Shauna, one of her favorites - who took care of both Katie and Ben. Shauna thought that Carin and I might hit it off, and she was right. The four of us (husbands included) have become good friends. (Thanks, Shauna!)

Ben was only two years old when he was diagnosed, on the very day that Katie passed away: August 16, 2007. It's an odd link between our families. Ben had the kind of cancer that the doctors originally thought Katie had (neuroblastoma). He and Katie had the same oncologist, Dr. Julie Park. He was treated for a year and a half before he passed away.

Carin and Jeff started the Ben Towne Foundation to find a cure for pediatric cancer. They have accomplished a mind-boggling amount in the short time the foundation has been up and running, chiefly stimulating the Center for Pediatric Cancer Research at Seattle Children's Hospital to get off the ground, and bringing Dr. Michael Jensen up here to lead its research in immunotherapy.

I'll tell you some of the exceptional things about their foundation.
1)  Every single penny that you give goes to pediatric cancer research. Their administrative costs are completely covered by "angels." Check that against any other charity!
2)  Their benefits are FUN. There is no auction, no tedious haranguing to purchase things you don't want or need. They have a cocktail party (cocktail attire; no ties for the men), a delicious dinner, an informative speaker (brief), a video, words from Carin & Jeff (always some humor in there) and an "ASK." Then it's over & you get to go home.
3)  They know what they are doing, and they do it well.
4)  They keep their message simple: it's about getting to a cure sooner, so fewer families have to go through what we have experienced.

One of the special blessings this year was being able to share the event with our family; my parents and brother & sister-in-law sat at our table, as did Gabriele, a blog-reader who is visiting the area from TEXAS! Gabriele also participated in the Run of Hope on Sunday - I'd call that making your vacation into a working, movable, charitable feast - kudos to Gabriele.

My brother & sister-in-law attend a number charity events each year. They have been a big support to us and to Seattle Children's Hospital. I didn't want to ask them to attend another fundraiser, but I did want to share this evening with them, so I invited them. And I know that they enjoyed it - before they left, Jim said that they want to attend next year. That's a wonderful endorsement!

Carin asked Gregg and me to be be in their video presentation this year, to tell Katie's story, along with three other couples telling their children's stories. If you know Gregg, that is worse than being told it's time to go to the dentist. Gregg doesn't like to speak publicly, and he is very private about his grief. But he said "yes," and the result is at the beginning of this post. I am so proud of him, and so thankful that he was beside me sharing Katie's story.

It is a blessing to know the Townes, and to support their foundation's work (which is the same as Katie's Endowment's purpose: to support the Center for Childhood Cancer Research's work).

As soon as the photos and the total amount raised Friday night are available, I'll post them here. Please feel free to share the link to the video - you can help raise awareness & funds!

Great News at Katie's Endowment's Blog

Please visit THIS link to find out what I've been up to this week, other than guild work, Burrata Bistro & Paella Bar communications, caring for home and family AND editing and printing my manuscript. It's on its way to a special destination, and now, I wait...and work on other projects, such as videotaping more members of Katie's care team next week. And our house does need cleaning again!

Check out the latest news at Katie's Comforters Guild, too!

Simple Pleasures & News

Simple Pleasures:

Mother Nature sent us a treat this evening

One of her most exquisite wild creatures landed in our Madrona tree

We had time to admire his beauty and immensity

On the 4th of July, I was thinking of hosting a party...but then, we were invited to a party with the rest of the staff of Burrata Bistro & Paella Bar at Kim & Alfonso's house (next door).
You may remember that I maintain the facebook page for the restaurants.
Kim closed both restaurants in order to provide this treat for us.
If you've ever tasted Kim's cooking or been to one of her parties, you'll know why I immediately cancelled my plans to host, and gladly accepted Kim & Alfonso's lavish hospitality, which extended to include my parents.
The buffet was beyond delicious.
We provided the fireworks, after dark.
Unfortunately, David had to work; fortunately, David has a J.O.B. (very important, nowadays)!

Their deck has several levels, like sunken living rooms, with beautiful plants, windchimes and lights

I had to show you this beautiful tunic, which was purchased for me by Gregg, on the isle of Capri, on his recent business trip to Italy.

Homegrown ingredients for homemade tea: rugosa rose petals, mint leaves and lavender. Pretty and delicious!

News:
I am working on my manuscript, formatting, polishing and adding material as recommended.

The Guild is ticking along, with generous seamstresses and fleece blanket-makers creating comfort for patients at Seattle Children's Hospital. Please consider joining us, if you would like to help - they always need blankets, and now that the hospital is expanding, the need will continue to increase!

Due to the thoughtfulness of Fred Merritt's family naming the Katie Gerstenberger Endowment for Cancer Research in Fred's obituary, 22 new donations have been received. We are deeply grateful.

It's HERE: Read the Article in EHL's Newsletter

HERE is the article (in EHL Insurance's newsletter) about Katie's Comforters Guild and the Katie Gerstenberger Endowment for Cancer Research. Thank you, EHL Insurance!

Please Watch This - it's Filled With HOPE

While I wish that Seattle Children's Hospital had its OWN video, that's not the case as yet, so here is a link to the City of Hope's Rock the Cure video of Dr. Mike Jensen, explaining his research success with the immune system, fighting cancer.

Dr. Jensen is teaching immune system cells to recognize and destroy cancer, with minimal side effects.

Please take a few moments to watch this, enjoy a dose of HOPE, and please, spread the word.

Dr. Jensen has joined Seattle Children's Hospital's Center for Childhood Cancer.
The Katie Gerstenberger Endowment for Cancer Research is supporting his work.

Please, if you are able, donate to this research, either at Seattle Children's Hospital, through Katie's Endowment or the Ben Towne Foundation - spread the word - ask others to donate.

HOPE is HERE. A better, non-toxic cure IS possible. Let's help it to happen in our lifetime!

Good News!

There is GOOD NEWS over at the Katie Gerstenberger Endowment for Cancer Research blog.

Check the New Postings at the Katie Gerstenberger Endowment Blog

Be sure to check out the new postings at the Katie Gerstenberger Endowment blog.

Camp Goodtimes Cruise, etc.

On Monday, David had the pleasure of sailing on the Argosy boat, Spirit of Seattle, to take part in the Camp Goodtimes cruise. David has elected not to attend Camp Goodtimes this summer, but he was invited to join in the cruise by our good friends, the family of "Mooselips." (Everyone on staff at camp has a camp name.) David took the 8:45 ferry to Seattle in the morning with Mooselips' kids, and they walked over to the Argosy dock & boarded the Argosy boat. They cruised to Vashon Island, where Camp Goodtimes is held, and picked up the campers and counselors.

They cruised to Seattle to take photos and get some food, saw a great water-show (put on by the Seattle Fire Department's new fire boat), had arts and crafts and activities on the boat, then cruised to Blake Island for a show and a snack. There were some "Mooselips" shenanigans on board the ship, as he "fell" overboard for the benefit of the kids, and did some other fun stunts and MC'd the whole affair. After sailing back to Vashon to return the kids & staff to camp, Mooselips, his kids, David and the rest of the crew returned to Seattle on the Spirit of Seattle. Heidi (Mrs. Mooselips) & I took the ferry over to meet them, and we watched the kids help Mooselips clean up the boat while we sat on the deck of Red Robin, sipping margaritas and chatting. Then we all had dinner together, talking about camp and the cruise. Mooselips then headed back to camp with a bag full of wonderful photos of the day for all of the campers, and Heidi and I took the kids home on the ferry. What a great day for David. (I am trying to convince him to write a guest-posting about the cruise, but so far, he is resisting.) Now, he is thinking about what a good place Argosy might be to apply for a summer job!
While David was on the cruise, I had a visit with my mother's cousins, who were visiting from New York. They wanted to see Katie's bench and her slide show, so we had a walk on our beach and watched the slide show, then went to town for lunch and photos at Katie's bench. It was a lovely, sunny day, and they could see the Olympic Mountains from the bench. I am grateful that they were able to enjoy the view and the peace of the spot. They have three children, two who are grown and have given them the gift of grandchildren. Their middle daughter, Ruth, was killed by a drunk driver 27 years ago, so they have walked a long way on this path themselves. I hope that their trip West brought them comfort and joy.

This weekend is Andrea and Mike's 1st wedding anniversary, and they called to ask if they could spend it here with us. This means so much to me, I can't quite put it into words. If you have been reading this journal for a year, you will recall that Andrea and Mike moved their wedding date so that Katie could be their bridesmaid; she enjoyed having that dream come true more than anyone will ever know.

A week after the wedding, Katie's legs became paralysed and she was unable to walk again. A week after that, she passed away. It was a precious gift to move the date of that ceremony, and we will always be thankful to them for giving her that priceless gift. They are going to come on Friday, and I can't wait to see them. Since they moved to Bellingham, we see less of one another, and it will be so much fun to catch up.

David was invited to golf with my dad and his Wednesday golf group today. He has done this a couple of times before. Most of the group are in their 80s, with a couple who might be closer to 60 or 70. David enjoys their company, and he and my dad get to spend time together, driving to & from whatever course they will be playing -- with David doing the driving -- as well riding in the cart while on the course Last week, they had the privilege of playing on a (private) course called Caledon, owned by Craig McCaw , which was a new experience for David.

Today they are on their way to play a public course in Seattle.

On Monday, I had a chance to see the DVD of the interview that David and I gave for staff training at Camp Goodtimes. I had never seen it, and the funny thing is, it was like watching and hearing a stranger speak. I did not remember much of what I had said in the interview, as I was concentrating on answering the questions that Mooselips was asking me. Since I am not accustomed to speaking on camera, I was nervous in the beginning, but as I got into talking about camp, and David and Katie's experiences, I quit caring about camera. Watching the DVD, I learned some things from what I myself had said, and I cried at the end, as if it was someone else's story. Weird, yet interesting...like I had compassion for my own story -- not self-pity, but compassion for the woman who was speaking, -- as if I heard the story from another vantage point. It was fun for me to hear and see David on camera.

I learned that the staff appreciated the information that we shared in the interview, and they were moved by it. I also learned that the Camp Mission Statement for the week was written as an acrostic, with the initial letters spelling out "FOR KATIE AND THE OTHERS." How cool is that? She is still inspiring people, and I believe that she always will.

I miss her very, very, very, very much.

We recently found out that, because of the generosity of many of our family and friends, the Katie Gerstenberger Endowment for cancer research at Children's Hospital is now over $79,480.00! In less than one year, the community of people who love and care about Katie has come together to help fund cancer research. Of course, this inspires me to want to do even more...and we will soon be visiting the new Research Institute that Children's Hospital has built. I will post more about that later.

THANK YOU to everyone who has donated to the endowment! We deeply appreciate your generosity.

We Wish You a Merry Christmas

Here is our Christmas card for 2007 (the only change we made is that the type is black, instead of purple). Photo & design credit go to: Paul Dudley Photography

David and I took a cruise last night on the Argosy Christmas Ship. Santa was there for photographs, and there was a choir from David's school singing carols. It was really fun: a clear, starry night, good music, pleasant company and a decorated ship! I wish that Gregg could have experienced it, but I know that enough photos were taken so that he will have a chance to see what it was like. If you ever have the opportunity to do this, I hope you will take it. Argosy's website shows the schedule for the cruises: http://www.argosycruises.com/themecruises/xmasSchedule.cfm

Often, there is a parade of private boats that follows the Argosy boat. That would be fun to see, too. They dedicated the cruise to Katie, which was lovely of them. The only difficulty I had was when the choir began to sing "White Christmas," which was one of Katie's (and my) favorite movies. We watched it countless times during the past year, no matter the season; Katie & I loved Bing Crosby, and we thought he looked like Gregg's dad (Grandpa G). Other than that, it was a lovely evening. Thank you, Paul, Heidi, and Argosy Cruises.

Today, I received the paperwork for The Katie Gerstenberger Endowment for Cancer Research at Children's Hospital. It continues to grow, because of the generosity of people who care about Katie & our family. So far, it is over $53,000. We are so grateful for this, and we hope, hope, hope that it will help researchers to make progress in the treatment and cure of pediatric tumors that occur outside of the brain (like Katie's). The income from the endowment can be used for basic, translational or clinical research; the principal stays intact, and can grow. It is a great way to honor Katie's memory. THANK YOU!

"I Thee Endow"

Today, we have some good news: The Katie Gerstenberger Endowment for cancer research at Children's Hospital and Regional Medical Center is official! Last evening, a representative from Children's came to our home with the paperwork, and Gregg and I signed it. The funds are in place now, due to the generosity of our family and friends -- THANK YOU! It can always be added to, but the important thing today is that minimum has been met, so the hospital can begin to use the income from the endowment for research to find treatment/cure for solid tumors occuring outside of the brain. HOORAY! and THANKS AGAIN for helping to make this dream a reality. I think it would make Katie happy and proud.