Monday, March 22, 2010

The Hope & Empowerment Event (in Indianapolis)

Thank you to each and every one of you who thought about and prayed for me while I was at the Hope and Empowerment Event in Indianapolis, IN, put on by gracious Michelle Tucker of the Henry Tucker Foundation.
We had a wonderful time, and there is so much to share that my mind is chattering away; I have to breathe deeply to process slowly enough to type.

The trip began with the pleasure of finding my little blurb in the April Issue of Redbook Magazine at the airport on Thursday (the issue has Tricia Yearwood on the cover). To see that little paragraph & photo on the last page in a national magazine was a deep thrill for me. Thank you, Redbook, for publishing me! It's my first national publication, and I'm so happy and grateful.

After that, we boarded our flight to Chicago (with a connection to Indianapolis). When this opportunity first appeared, I told Gregg that I needed him to take this trip with me. I can write all day long, but public speaking is not where I am most comfortable. I was nervous, and knew I needed his calm presence and support. David, who loves to travel, volunteered to come along with us, so both of them were with me.

Let's just say that I'm not normally a great airline passenger. But this time, I KNEW I was where I was supposed to be, and I felt calm. I embraced the experience and enjoyed it. As we approached the Indianapolis airport, the sun had set and the lights were beautiful below us. I felt Katie's presence and her blessing as the airplane descended. I can't explain this; I just knew that she was the reason I was there, and that I wanted to honor her, to make her proud. I felt her love and blessing with me.

We found that in Indianapolis, EVERYONE is friendly. We had thought that Seattle, being a West-coast casual, pioneer-spirited place was accepting and friendly, but boy, those Hoosiers are kind and helpful and welcoming! The Conrad Hotel had given the Henry Tucker Foundation a great rate (thank you, Dianne Killian!), and we had a very comfortable and happy stay there.

We took a walk around the traffic circle near the hotel on the first night. What a clean city! There were a lot of interesting-looking bars and restaurants - too many to choose from. We did so much exploring that when we did decide to get a late-night bite to eat, everyplace had closed.

Gregg and I got up each morning for a walk before breakfast. We saw war memorials,
 wonderful architectural details, parks, the riverfront, public art and the fabulous canal walk.
After breakfast on Friday, it was time to go to the Jewish Community Center to prepare for the screening of Patrick Doughtie's movie, "Letters to God," which was inspired by his son, Tyler (www.caringbridge.org/tn/ptyler).  

This reader-board that we passed on the way to the JCC really cracked me up; it's not something you would typically see in Poulsbo, a predominantly Norwegian-Lutheran town!
We met the other participants in the Event, people such as (pictured below):  Henry Allen, who founded the Brain Candy Project with his son, Cameron; Michelle Tucker, Henry's mother and the founder of The Henry Tucker Foundation; Dianne Killian and Heide Randall, co-founders (with Michelle) of Team Unite.
Not pictured, but equally inspiring, were participants Gina Cousineau, founder of Be a Hero Become a Donor Foundation; Karri Harmon, who works with The Compassionate Friends; Kim Martin of The Hair Fairy Project; Bob Piniewski, founder of PAC2 and Patrick Doughtie and his sweet family. (I am hoping to have some of the official pictures to post here later, but for now, you can see our amateur photos.)

We also had the privilege of meeting the Medical Director of Peyton Manning Children's Hospital's Center for Cancer & Blood Diseases, Dr. Bassem Razzouk, M.D.
Dr. Razzouk just happens to have worked at St. Jude's Children's Hospital with the only two doctors in the world who are studying Katie's rare cancer, adrenocortical carcinoma. They created the drug protocol that she used, the one that stabilized her tumor enough so that it could be surgically removed. It was such a meaningful encounter. To hear his thoughts and insights, and to be on a panel discussion with him, was pure inspiration for me.

But I'm getting ahead of myself here.

The movie screening was on Friday night (it will come to theatres on April 9th). Gregg and I were a bit concerned that it might be too hard to watch this movie. It was painful at times, but it was WORTH it. For every tear we shed, there were also laughs and uplifting moments. I will tell you honestly, if you want to know some of the true feelings that parents, families and patients experience during the childhood cancer journey, go and see this movie.
Caveat: If I had a child in treatment for cancer right now, I would not see the movie at this time. If you want me to elaborate, leave a comment here.

The movie is written from a Christian perspective, because Patrick is a Christian, but I did not perceive it as offensive toward other faiths. It shows the crisis of faith that is natural under such pressure; it shows the support system that can help families in this situation. It shows how other people's lives can be impacted by contact with a family whose child has cancer. And it shows just a bit of how it really is when a child has cancer and dies. That was the hardest part for us: the deathbed scene.

After the screening that night, we went to the Tucker's home and decompressed together. 

The next morning, after a walk and hearty brunch, Gregg, David and I drove back to the JCC for the Hope & Empowerment conference.
Courtney's Carolyn & Henry

This included an introductory session, two break-out discussion sessions and a wrap-up.
We presenters spoke, listened and exchanged questions and answers with hospital staff, hospice staff and other interested parties. There was also a bone marrow registry drive, at which Gregg and I joined the bone marrow donor registry with a simple cheek swab and some paperwork, and with Gina Cousineau's help. (For information on how you can "be a hero and become a donor," go to http://www.bahbad.org/).

After the conference, we met again at the Tucker residence, and relaxed and brainstormed about the conference.
Dianne Killian, me, Karri Harmon & Michelle
Heide & Jake Randall with Michelle's friend, Thankful A.

I would have loved to have had higher attendance, because of all of Michelle's hard work, and so that we could have shared the excitement with more people in the area, yet it was such an intimate, authentic, deep, lively and relaxed experience with the group we had. Most of us feel that this should become a tour, of sorts, perhaps as a part of medical school curriculum. We felt what Michelle called "The Power of a Parent" in each other's stories, work, and passion for our kids. And our love extends beyond our own families and children, because our deep desire is to prevent other families from experiencing what we have had to go through. We'd love to see the day when this disease is like polio, with a real CURE. Not one more child suffering and dying from it, not one more sibling, parent, grandparent and friend bereaved because of pediatric cancer. It's the number one killer of children in this country.
The NUMBER ONE KILLER of KIDS.
Would you tolerate a child-killer living in your neighborhood? I didn't think you would. But there is one.

To sum up the Hope & Empowerment Event simply, I had a great time. I am bursting with ideas for what to do next, and need to deeply consider how to proceed. Meeting core members of my grief community in person, after reading and writing to them for over two years, was an extraordinary gift that I did not expect to receive.

We have http://www.caringbridge.org/ to thank for leading us to each other in the first place. We have God to thank for bringing us together, in hope and empowerment for ourselves and for others.
Finally, I have to tell you, I love this woman.
Thank you, Michelle, for sharing your beautiful son Henry with us, and for honoring your promise to him. You are blessing countless others, including me!

17 comments:

Smileygirl said...

Welcome home! Look forward to catching up with you and hearing more about this incredible weekend.

Love to you guys from across the pond!
XOXO

Kathy Kvinsland Davis said...

Dear Karen,
You have done Katie proud, as she always did you.

How I would have loved to have heard you speak.

Love,
Kathy

Kay said...

Wow, girl! You've been busy. Sounds like you had a pretty incredible time. I'm so glad it all went well for you. The movie sounds very interesting, but I am always leery of 'dragging myself through that' again. But I'm glad you got to see it.

Mary Potts said...

Thank you for sharing all of this, Karen. I can only imagine how you felt connecting with these other strong and purposeful women, knowing all of you are on a mission to rid the world of this disease on behalf of your beloved children. There is no better way to honor their memories. I'm weeping now, for not having taken the three-hour drive to Indy.

Bless you, for your courage and initiative,
Mary

Mary said...

I'm so happy to hear about your trip Karen! I'm thrilled you got to meet in person all of amazing these people with whom you've corresponded over time...and I am SURE you'd have huge impact as part of a medical school curriculum. Welcome home!

Tara said...

So glad you had a great time in Indy! Funny to see pictures of places I frequent on your blog!

You are welcome back to the Hoosier state anytime! ;)

endswith8741 said...

Looks like a great trip! You look like a pro, and I'm sure your speech would have moved me.

Busy Bee Suz said...

Karen this sounds like such a positive trip for all of you. So happy you were able to attend and get your 2 cents in as well.
I am sure your little Angel is so proud of you!!!!
Meeting the Dr's who are researching Katie's type of cancer; astounding.

PS.
I looked for the Rebook today at a store. They did not have any. I will keep looking. So proud of YOU!!!

Karen said...

Sounds like a truly meaningful and poignant and productive gathering. I understand what it must have meant to you to meet with your support system and others who care so deeply for what you care about right along with you. It must take away the terrible sense of aloneness bereaved parents often feel. I hope you will give us an idea of what you said, if you ever get the chance. I am really proud of you for finding the strength to do this. Katie was truly honored by this act of love by her mama.

Allegra Smith said...

I thought of you often during the time of the conference and I was sure, pure Intuition and knowing how you handle your burdens, that it would be a time of giving for all those involved.

Katie must be so proud of you! I think that the idea of having this conference around the country is a great one. While Academia is more than important for all physicians and associates, I believe that the reality parents can bring to the equation can only result in more awareness of the children's needs.

I am proud of you and delighted that you are finally published nationally. Hearty and loving congratulations!

LeighSW said...

Glad to hear it went well!

amanda said...

Karen- I am so glad all went well and was a rewarding experience for all of you. I always say that I am amazed by Katie's strength but I should not be, she got that strength from you!
Amanda

deb said...

You humble me .

Elizabeth said...

Welcome home! I thought about you almost constantly this weekend, knowing that all was well, somehow. The conference sounds like it was wonderful and inspiring -- and I, too, wish that it might have been attended by thousands and thousands of people. Do you know if the movie is going to be widely distributed or available on DVD? You have somewhat coyly left out how your speech went, so I'm waiting, miss!

Also, we need to talk sometime about the work that I currently do with quality improvement in children's healthcare -- your words about parent advocacy and empowerment are very important and there might be more ways for you to contribute and channel them!

AnnDeO said...

Courage you have... to be able to connect with others and share your story for our benefit. I am so fascinated and inspired by your experience.

Anonymous said...

What a wonderful peek into your weekend. I hope you will share more with us when you have the energy to do so. Your idea of sharing with medical schools is so intriguing. I'm thrilled your experience was so positive, and happy that you felt Katie's presence with you.

Karen B.

Anonymous said...

Karen,
I have been reading your blog anonymously for some time now, and have posted a couple of comments. I am from Indianapolis and am thrilled that you were able to visit our beautiful city. Indianapolis is a lovely, very friendly city. I am proud to call it home.

I hope you will visit again.

Debi Ware