Showing posts with label Ben Towne Foundation. Show all posts
Showing posts with label Ben Towne Foundation. Show all posts

Tuesday, July 16, 2013

Happy July, Thanks & Cancer Research BREAKTHROUGH NEWS!

Wishing you a happy July! Our guild has been blessed yet again by Lucile and Noble Nilsen. Here is the latest batch of Lucile's handiwork:
32 new quilts & blankets!
Tons of variety of color and pattern in there
If I could get them back into the bags, I would take them out to show you, but they are perfectly packed.
Thank you, Lucile & Noble!

I had the privilege of delivering some of our donated fabric to Gabriele, who is visiting our area this summer. Gabriele owns a quilter's retreat house in Texas, and has generously offered to sew for Katie's Comforters Guild this summer. We had a great meeting/hand-off, and I look forward to seeing what her creative imagination leads her to do with the fabric. Thank you, Gabriele!

We were grateful to receive a box of yarn from Georgann S., which we are going to give to Liberty Bay Books' Knitting Group; they will work their "magic" and turn it into blankets for patients. Thank you, Georgann!

You may have heard or read about the breakthrough at the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. In case you missed it, the patient in the first clinical trial for T-Cell therapy is in REMISSION. The Katie Gerstenberger Endowment for Cancer Research supports the work of the Ben Towne Center and we could not be happier to receive this news. To learn more, follow this link. You can find out more on the Ben Towne Foundation's website (www.bentownefoundation.org) and at www.komonews.com.

Keep us posted of your sewing, knitting, crocheting or fleece-making activities and we will be happy to post photos of your donations here and on our facebook page. Thank you all for your support!

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.

Tuesday, October 2, 2012

As September Was Winding Down...

...there was a lot of activity in Katie's Comforters Guild!
The last week of the September, which is Childhood Cancer Awareness Month, saw your president working for awareness and support.

On Sunday, September 23rd, I made a presentation about my book, about our guild and about childhood cancer research at Eagle Harbor Book Company on Bainbridge Island, WA. There is news about this event on both of my other blogs:
Gberger and 
abundant living after catastrophe .

I brought Katie's quilt with me to help "show and tell," and Donna's and Sandy's quilt (see the previous posting) was hanging on display in the front window of the store for a week, behind the poster of my book's cover. It provided a wonderful illustration of our guild's mission, and what our talented, generous members and friends do!
Several members and friends of our guild were in attendance at this event, and one of them was Bonnie P. She brought with her a new half-dozen quilts to donate to the guild. Here they are:
Awesome tie-dye center with borders and Bonnie's trademark "FROG" label
This is a photo of two together - a sunshine theme and a dinosaur theme
Beautiful batik
Handkerchief-style print
Anchors aweigh with mattress-ticking stripes
Thank you, Bonnie!

The day after this event, I was invited to speak to a group of quilters who meet to sew for charity. They wanted to know more about our guild, so I took Katie's comforter and Donna's and Sandy's quilt, along with some brochures, and spoke to them. They have decided to sew a donation for us, and I'm so thankful!

On Friday, September 28th, Dr. Michael Jensen, director of the Ben Towne Center for Childhood Cancer Research announced at the annual Ben Towne Foundation BENefit that the FDA has given permission for clinical trials to commence using Dr. Jensen's T-cell therapy in treating childhood cancer. This is wonderful news! Treatment with little side effects and no harm done to patients is a dream-coming-true. The Katie Gerstenberger Endowment for Cancer Research supports the Jensen Laboratory, and their work holds great promise.

September was an awesome month for progress in pediatric cancer awareness, research and comfort. Thank you for all you do to help make this possible!