One of the truly inspiring things that has happened this past year has been the opportunity to meet new people and see the ways in which they are willing to come along side our work with their own networks and interests. The Seattle-Eastside Bar Method has been one of those organizations. SEBM has been supporting Ben Towne Foundation this last year through their own challenges and campaigns. Take a look… Read more
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When we launched our foundation in September 2010 we had a bold vision – to accelerate the pace of pediatric cancer research and change the way childhood cancers are treated and cured. To accomplish this, we figured we needed to do a few things: create a movement, establish a vital partnership with the Center, and take our mission outside of Seattle. Two of these goals are well underway, so we figured it was time to take our show on the road!
A key reason to do this is because the work that is being done right now at the Ben Towne Center for Childhood Cancer Research has the potential to affect children across the United States and potentially the world. The Ben Towne Center for Childhood Cancer Research is the only facility in the Western U.S. with the infrastructure (GMP facility) to manufacture T-cell therapy for children diagnosed with cancer. Together with Center Director, Dr. Michael Jensen, we envision a day when children are cured of cancer without the devastating side effects of chemotherapy and radiation. When this comes to fruition it will truly be a revolution in the treatment of pediatric cancer.
In this video that many of you have seen, you can see our friends Dana and Frank and Sarah and Ryan – representing Boise, Idaho. Having received dozens of donations from Boise, we knew it was just a matter of time before we had an event there. Last Thursday we enjoyed a lovely evening in Boise. The event was hosted at the beautiful home of our family friends Howard and Becky. Dana and Frank, Sarah and Ryan, and Kate and Bill were vital in inviting and bringing their friends and colleagues to the event. After enjoying cocktails, appetizers and desserts for an hour, guests gathered to listen to our program. We were about five minutes into our content when a huge hailstorm completely shut down the power. While we are both fairly decent speakers, some of the more important content lay in our video presentations – so to say we scrambled would be an understatement. But somehow we managed to convey what we had hoped and the audience was incredibly gracious. The party continued into the dark of the night – with candlelight bouncing off the walls. A lovely time was had by all – despite Mother Nature’s interruption. I am guessing it will at least be something people remember!
Thank you so much to everyone who attended. We were grateful for your presence and willingness to take time out of your Thursday night to be with us and to learn more about Ben Towne Foundation’s mission. Our immense gratitude to our incredible friends for helping us put together this evening and helping us to raise awareness for this work. We look forward to returning there in the future!
I have been quite honest (and perhaps repetitive) in my writing about grief and Ben’s absence. You might notice however, that I don’t write much about Ben’s cancer journey anymore. Those moments of trauma are so embedded in my soul that it is a daily choice/decision to try not to live in them. After Ben died, those images and scenes of terror could not be fought. They always seemed to win the space in my brain and heart. But I have gotten better at this, thanks to a lot of intentional grief work and time. For the most part I am better able to re-direct those memories now – and for that I am thankful.
It is with that acknowledgement that I have the utmost respect for my friend Karen. Karen has bravely chosen (not without sacrifice) to retell her daughter Katie’s experience from diagnosis to death in her new book “Because of Katie”. She did this first and foremost so that medical professionals might better understand the journey an entire family takes when their son or daughter is diagnosed with childhood cancer. Her ultimate goal is that it would be required reading for all professional persons entering the world of pediatric cancer. But I also think it will be immensely helpful for friends and others who wonder what it is like for a family to walk this hellacious road. Karen is brutally honest, which I appreciate immensely, and articulates so many of the challenges a cancer and hospital life brings to those thrust into it. While there are many differences between walking through this with a teenage daughter verses a two-year-old son, much of it is universal to the experience and I am thankful she was willing to go back and commit it to paper. Thank you Karen!
Here is a passage from “Because of Katie” that resonated with me greatly:
One important thing to note about patients and families in the hospital setting is the fact that, no matter who we are in the “outside” world, we are stripped down to our essence in the hospital world. Whatever our job, our title, our level of education, our socioeconomic milieu, our looks, our self-image, our background – none of that is of any value or importance in a health crisis. We are only exactly who we are the moment the crisis occurs, nothing more or less.
Wealth, advanced degrees – even religious beliefs – nothing is of any consequence except who we really are, inside. What we think or what we believe will crack very quickly under the stress of our child’s illness; our essence, our deepest truth, arises out of the ashes of our former life. The families you will meet will be stripped down to their essence. They might try to flex and show you some of their more impressive qualities, but cancer is a great equalizer.
There are no shortcuts or advantages in the cancer ward. We are who we are, and – as with old age – in the stressful environment that is a pediatric cancer ward, we become even more who we really are. So it is good to be mindful that the people you encounter are, to a large extent, more naked than they have ever been, and more frightened. They are facing life and death issues, some for the first time ever, and they are finding out that they cannot take anything extraneously with them on this journey. My experience confirmed for me, that leading with love is the only way to make it through the hospital journey.
Jeff and I spent the dreary Seattle winter months watching the entire series of Friday Night Lights. How in the world did it take us this long to discover this? Why were we so late to the party? Oh wait, our son was sick and dying. Right. Anyways, thankfully we finally arrived in Dillon, Texas – and not a moment too soon. This was hands-down the best television drama that I have ever seen – the acting and writing were incredible (minus one random story line in season two). As we got closer to the end of series I started becoming increasingly sad. I didn’t want to depart with this show, nor it’s characters that were now my friends. The last ten minutes of the series finale felt like a horrible break up.
It has been weeks now. And I miss them. Not like I miss Ben – I’m not that crazy. But still…I miss them. I think about the Taylors, Riggins, Landry, Tyra, Matt Seracen and Julie, Buddy Garrity and more. I wonder how Jason Street is doing in NYC. Oh wait… he isn’t there for real. He is just an actor. Maybe I am crazy.
Luckily, spring has semi-arrived in Seattle. And with it, there have been some lovely people in our real lives lately – people that have huddled around the work we are doing. Supporters who truly have clear eyes and full hearts. Here are just a few of them:
Our family friends Pam and Roger generously gave of their time and gas to drive wine to Boise, Idaho for our upcoming event there.
Ray – our good friend and incredibly talented designer who continues to design gorgeous work for us with as much thought and perfection as if he were working for the Metropolitan Museum of Art.
The hand-written check that arrives every month in the mailbox from our dear friends. Opening that check is a reminder of so many of you who are contributing monthly to research at the Center.
Our sweet and darling neighbor Justine who brought over a jar to us recently. It contained money that she has been saving all year to give to BTF through her hard work! We continue to be amazed by kids who just get this – the definition of clear eyes and full hearts!
And so many more…
So while I pine for Coach Taylor and just a few more “y’all” quotes from Tami – I am thankful for the real people in our life who are part of our small, but growing, towne. Thank you!