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Thursday, October 18, 2012

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.

Sunday, October 7, 2012

HUGE, Wonderful News



Thank You to our donors for your generosity to the Katie Gerstenberger Endowment for Solid Tumor Research.

 update on the endowment’s growth:  
Due to your generosity and market growth,  
as of March 31, 2012, the market value of the endowment is $167,373. This is a great increase over March 2011, when the total was $140,554. Thank you!

 what we are doing with the endowment’s income:  last summer, Seattle Children’s Hospital’s Research Institute opened the Center for Childhood Cancer Research (recently re-named the Ben Towne Center for Childhood Cancer Research in memory of the son of our friends, Carin and Jeff Towne. You can learn more about the Townes’ work at www.bentownefoundation.org.)
Dr. Michael Jensen, the director of the new center, is a man of vision, passion and compassion, who is pioneering the use of T-cells to kill cancer, rather than toxic chemotherapy and radiation. His work is a promising new kind of treatment, which has just (last week) received approval from the FDA to commence clinical trials! 
No chemotherapy, no radiation, no harmful side effects nor long-term disability, no secondary cancers - this is a treatment protocol of which we have dreamed for many years, and it is about to begin.
The income from the Katie Gerstenberger Endowment for Cancer Research is funding this work. Your contributions are supporting research to change the way cancer is treated – for the better.

an invitation to see what your donations are accomplishing:  Dr. Jensen has kindly offered to conduct a private tour of the research center (in downtown Seattle at 1100 Olive Way) for our endowment's friends and donors on Thursday, October 11, 2012 at 1:00 P.M.  If you would like to tour the center, meet Dr. Jensen and learn more about the research our endowment is supporting, please let me know by emailing me at karenlboren@yahoo.com. We would love to share this experience with you, and we need to know how many are planning to join us.

We are profoundly grateful to be participating in this research, and grateful to you for your donations, which are making this possible.