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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6 thoughts on “Thank You for Listening Generously

  1. Dearest Karen,

    I am so glad that you are finding some peace of mind and resolution in this extraordinary movement forward and in the knowledge that you have helped to contribute to the defeat of the enemy that took Katie’s life. You have poured all the love you would have shown to her if she were alive into saving other children; you are such a gift to this world.

    I get where you and Gregg are, too. I guess I am somewhere in between. My husband and son are not at all interested in my suicide prevention work; my daughter listens, and helps at times. But I am the one who feels compelled to respond in some way to our loss by trying to stamp out disaster — and yet, I also feel as Gregg does. Nothing that I do or that we accomplish will bring our son back to us. And so sometimes I work hard at it, and sometimes I couldn’t care less.

    We are all so changed by our losses. I think I speak for the world when I express gratitude that some of the ways in which you have been changed have energized you to do so much on behalf of others. You are an incredible mother.

    Robin

    • Robin, your words warm my heart; thank you for reading (& listening). Yes, there are seasons of great activity, and those of lying fallow. We bereaved parents understand each other in ways that no one else can, and that understanding breaks into the profound sense of aloneness of this road. Our book study together was such a refuge and release for me. Thank you for all that YOU are doing for others. With love from me.

  2. This was an absolutely beautiful post, Karen. Your quest for progress, and the relief you have felt with the Ben Towne Center, is really gratifying– and comforting to me. It makes me happy for you, in a sad kind of way, if you get my meaning. I so envy your passion for curing cancer…I am more like your sweet hubby…struggling to even look at epilepsy research anymore. That disease broke my heart, and so the thought of it is painful to me. I guess we are all like similar bottles of glass that shatter differently when dropped.

    I am just glad you have had the courage and fortitude to go where you have gone. The fact that you can rest now speaks volumes. Your daughter has left a legacy in her mother’s passion for a cure. What a blessing to all the other families that come behind you. You are a world changer, my beautiful friend. In honor of Katie.

    • Karen, thank you. Your gentle love and encouragement have been with me and have helped me to survive this path from afar. Your ministry is just as important as mine, or Robin’s or Chris’s – it is centered on the home. That is as vital as working for a cure for cancer. It could be called “working for a cure for heart-brokenness” – within your own family and your community. I am also aware that if Gregg wasn’t called to do his work, I wouldn’t have the freedom to do mine. Not everyone is called back into the same fire that burned them; there are as many ways to serve as there are individuals, thanks be to God! Sending love to you, dear friend.

  3. This is extraordinary news and an extraordinary post. You inspire me to continue my own efforts to help in the work toward eradcating epilepsy, and I am also relieved from the efforts periodically, resting, perhaps, like Greg (and you). I was so moved reading of your relief — that was really an amazing description. Hallelujah!

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