Thank You for Listening Generously

“When you listen generously to people they can hear the truth in themselves, often for the first time.” – Rachel Naomi Remen

I rarely write postings for all of my blogs at the same time, but today, I am doing just that. If you visit any of my blogs (www.karengberger.blogspot.com , www.katiescomfortersguild.blogspot.com , www.katiegerstenbergerendowment.blogspot.com  and www.abundantlivingaftercatastrophe.wordpress.com ) this is what you will find.

It’s been a deeply moving season here. The end of summer brings with it memories of Katie’s passing (August 16th), my parents’ anniversary (this year they marked 60 years of marriage on August 17th), the start of the school year (David is a junior in college, studying in Italy for a semester; Katie should be a senior in high school, looking at college choices and enjoying her last year at home with friends – but she is not). It also marks the anniversary of the start of her illness, her diagnosis, and the 10 months which were a kind of living hell, leading to her passing. The 10th of October, the day we entered the hospital “for tests” and didn’t come out for months; October 13th, the day we found out that it was cancer (though not what type) and Katie’s first round of chemotherapy began.

Gregg let me know during this time that he is not comfortable hearing the news, in detail, of all of my involvement in the world of cancer. He can take only so much of it. My work does not give him solace the way it does me; it simply reminds him of what took our daughter away. When I asked him if the advances in research, cures and awareness make him feel better, he replied, “No.” None of it will bring Katie back, so it’s not a comfort to him. Even though it comforts me, I need to filter some of what I ask him to participate in. Fair enough.

Shortly after my book reading event at Eagle Harbor Books in September, Gregg and I attended the Ben Towne Foundation’s annual BENefit. We were “table captains,” which really means that we gathered interested family and friends and all sat together for dinner. The Foundation makes it so easy to “host” a table that I wouldn’t feel right calling it “hosting.” That was the second cancer-related event in a month’s time, but Gregg loves the Townes and wants to support the Foundation.

At the BENefit, Dr. Michael Jensen announced that his work on relapsed leukemia has been given approval by the FDA to move into clinical trials. That means that children here in Seattle who have no other hope than a miracle have a chance at that miracle; they can enter a clinical trial using their own re-engineered T-cells to fight their own cancer. It will begin sometime in the next few weeks.

This announcement brought our table to tears. We were sitting with my parents, brother and sister-in-law, as well as with two other couples who are friends – both of whom have watched their own daughters die from brain cancer. Three sets of bereaved parents heard the news together. It was a dramatic moment, and one that has truly changed my life.

I finally feel relief.

I feel relief, for the first time since Katie died.

Since Katie died, I have felt like the parent of a murdered child. I have felt that the murderer is “at large,” and beyond the capacity of “law-enforcement” to catch. It hurts. I feel it’s my duty as her mother to catch her killer and bring him to justice. I didn’t realize that so much of my work and energy has been directed to catching this killer – but it has.

After the BENefit, several family members and friends joined me for a tour of the Ben Towne Center for Childhood Cancer Research. At the end of the tour, I took Dr. Jensen aside and thanked him. I told him that for the first time since Katie’s passing, I feel as if I can relax. I know that the killer is now identified. We may not have him on death row yet, but his whereabouts are known, and he is in the crosshairs of the law. They are going to catch him, and stop him from killing other children (and adults). This is Dr. Jensen’s mission, and it is now beginning to be available to patients (not just lab mice).

On the tour, my dad asked Dr. Jensen two important questions (and I think I heard the answers correctly):

1)   How much does it cost annually to do what you are doing?

Answer: $1.5 million

2)   How much do you need annually to be able to conduct experiments on the cancers you want to cure next?

Answer: $15 million.

Friends, what is being spent on the next election makes this sum look positively PALTRY. This research has the potential to cure children AND adults. If you know anyone who can contribute to it, please invite them to contact me or the Ben Towne Center. I will be happy to effect an introduction.

What I want most to share with you is the fact that I feel a new freedom now. The baton is in Dr. Jensen’s hands (and those of his colleagues, some of whom were part of Katie’s care team). I will continue to do my best to raise awareness and financial support, but I can finally let go of this part of my work, because it is being done by the professionals. And some of the thanks for that goes to Carin and Jeff Towne, and the memory of their precious son, Ben.

I wasn’t aware that I was holding my breath for this to happen, but I have been…and I can rest now. Thank God that prayers are being answered! The timing was not sufficient to save Katie’s life, but I believe that the cure will be part of her legacy.

Thank you for reading my blogs, for commenting, for supporting our family through this time. Though we will never be “over it,” your listening, caring and praying has been part of our healing process. That process continues – and finding a cure for cancer is surely a part of it.

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Abundance, Not Perfection

The past week has been filled with joy, good news and answered prayer.

That’s a reason to stop and give thanks – to just STOP, right there, and give thanks to Love for these blessings.

My book reading at Eagle Harbor Book Company resulted in raised awareness and support for childhood cancer research. I have specific, personal evidence of that, and it is a rich blessing to me to know that the message which I feel called to share is being heard.

And – HEY! I must say – they sold out of “Because of Katie,” and had to order more. It out-sold J.K. Rowling’s new book – can I hear a “woot-woot!” just for that fact?

Karen and Dr. Michael Jensen discussing childhood cancer research at Eagle Harbor Book Co. (photo credit: http://www.eagleharborbooks.com)

After that, I spent days writing and working on other projects. On Friday, it was time for the third annual Ben Towne Foundation BENefit. Gregg and I have been fortunate to have attended this event every year, and to have seen this dream grow BIG. We love Carin, Jeff and Ryan Towne, and wish we had known Ben. We met the Townes because Ben was treated in the same place by the same staff who treated Katie, at Seattle Children’s Hospital. Fortunately, one of those people thought we should meet – and we did. The resulting friendship is indeed a gift from our children.

Gregg dislikes re-entering the world of pediatric cancer, and this is the only benefit which I can persuade him to attend nowadays. He goes gladly because he wholeheartedly supports what the Ben Towne Center for Childhood Cancer Research is doing, as well as the family and the Foundation that brought that center into being. I can’t think of ANYone who could persuade Gregg to be in a video other than the Townes.

benefit 2011 Feature Video from ben towne foundation on Vimeo.

It would be difficult to describe the relief – the weeping, grateful relief – which I felt on Friday evening when I heard  Dr. Jensen announce from the stage that the U.S. Food & Drug Administration has just approved clinical trials for the new T-cell therapy he has designed. That application, submitted by the Ben Towne Center for Childhood Cancer Research, is what I have been dreaming of for at least five years: therapy which does no harm, only good – and rapidly. Therapy which can help adults, as well as children. Therapy which can be applied to a variety of different cancers, without causing secondary cancer. It is therapy that I wish had been available in time to save my own daughter’s life, and the lives of our friends’ children.

In the midst of these blessings is the knowledge that none of it changes the outcome for us…Katie is dead, as is Ben, Hannah, Jenny, Henry, Jessica and Hayden, and so many others…they are not with their parents, where we feel they belong. They should be here, growing up, being loved and nurtured by their families. But they are not. They are somewhere else. In my belief, they are in the next phase of life, going forward, yet awaiting our arrival and reunion. I believe we will see one another again. I believe that Katie’s life work is large, full, and that she did it with beauty, dignity, courage and completeness, as far as her part goes. I only wish it had been a longer life, without the suffering brought on by cancer.

I will never feel that it was worth what has happened since – no matter how much good, no matter the progress and the lives yet to be saved – I will never feel that my daughter’s life should have ended at 12 and a half years. That will never, ever be “okay” with me. If someone wants to tell me that God had a plan and that Katie’s death was part of it, so that I would become more faithful, less selfish, an advocate for cancer research, or do any number of “good works,” I will want to punch that person on the nose. Period. So please, do not try to tell me that it was a “good” thing that this happened. It wasn’t, and it never will be.

Having written that, it is fascinating that in the class I’m taking right now – RIGHT NOW – the focus is on prayers that are not answered the way we wish they were. The lesson I’m studying (Beth Moore’s “Believing God”) is dealing with specific prayers for healing that are answered with recovery, and those that are answered without it – even prayers that are followed by death, rather than healing. I’m so glad that someone is willing to face the facts and discuss them! The worst thing is to brush off questions which don’t presently have answers. Wrestle if you wish, but do not deny or ignore!

Life can be filled with goodness, yet still be imperfect, and that is what my life is like. I have to work continually to accept what has been denied, and to embrace, with love and gratitude, what has been given.

A cure for cancer is closer – hope is rising – progress is in the works. My daughter, who should be applying to colleges this fall, does not live here on earth with her family; I can’t see her until I die. These are facts of my life. It is a life is filled with abundant blessings – and it contains horrific wounds. It is not perfect – it is human. And it is a gift.

Eagle Harbor Books & “Because of Katie”

“Because of Katie”

Eagle Harbor Book Company (located at 157 Winslow Way East on Bainbridge Island, WA; telephone number 206.842.5332) is hosting an event which includes my book, “Because of Katie” on Sunday, September 23 at 3:00 in the afternoon.

I hope you’ll join us!

The event will last for an hour, during which time I will read from my book (and sign a copy for you, if you’d like one). I’ll also show a brief video from the Ben Towne Foundation about Dr. Michael Jensen (a Bainbridge Islander) and his work as the Director of the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Hospital. We’ll hear about the exciting research he is doing with the immune-system, harnessing its power to kill cancer cells!

We’ll also have a display showing and telling a bit about Katie’s Comforters Guild at Seattle Children’s Hospital, the guild which I founded after Katie passed away – which was inspired by her attachment to her own home-made quilt.

This is in honor of the fact that September is National Childhood Cancer Awareness Month – did you know that? The President of the United States even signed a proclamation to that effect (if you’re interested, you can read more from Curesearch here).

Thank you, Eagle Harbor Books for providing a community space in which to spotlight this important issue!