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Hannah’s story began on October 21, 2007 with headaches and a variety of unusual symptoms which were tough to diagnose. My mother’s instinct knew something was wrong. So did Hannah's. On November 5th, during a final trip to the clinic, a CT scan revealed that Hannah had a brain tumor. We were immediately sent to Children’s Hospital in Seattle. Following brain & spinal MRI’s, she was admitted to the hospital. Hannah faced all of these tests (and this new information) bravely, calmly and with eyes wide open— she was much tougher than her parents. The next day, a team of gifted neurosurgeons successfully removed the whole tumor between her cerebellum & brain stem. As Hannah recovered, we awaited the pathology report, finally to discover that the tumor was a malignant anaplastic medulloblastoma. Following further recovery on Children’s inpatient rehab unit, Hannah received radiation and chemotherapies over the course of the next year. In addition, she is participating in a nationwide research study for children with high risk medulloblastoma. Hannah was randomly selected to the arm of the study in which she receives all available treatments, including a trial drug - Accutane - which is new for this type of tumor.
Hannah remained cancer-free for 18 months post diagnosis. On May 13, 2009, during a regular MRI scan, we discovered that Hannah's cancer had returned. She began taking an oral chemo which enabled her to continue her life at home and at school which was very important to Hannah. After 6 months of this new treatment, an MRI showed evidence of 5 small tumors in her brain. We then opted for gamma knife radiation to these tumors, followed by a change in oral chemotherapies. As her tumor continued to show signs of slow but continued progression, we changed treatment courses and prayed for a miracle. Hannah never gave up believing that she could once again beat this cancer.
In the month before Hannah died, we all came to realize that we could not stop the cancer's progression. We stopped treatment and tried to keep Hannah as comfortable and pain-free as possible. With the help of hospice and Children's Hospital, Hannah died peacefully at home on August 30, 2010, surrounded by her family, just a few weeks past her 12th birthday. Although we lost our beloved daughter, we will continue to raise awareness and funds for pediatric brain cancer research. We hope that someday soon, no child and no family has to suffer the devastating effects of brain cancer and its current treatment. It was too late for Hannah but not for the children of our future.
Throughout Hannah's journey, we were comforted and held up by an unbelievable outpouring of love and support from Bainbridge, not to mention from friends & family across the country. Not in a million years would we have chosen this path for Hannah but we walked it with her. We believed in her strength to heal her body, in her feisty, independent spirit, in the love she shared with her many friends and family. Someday we may discover why God chose Hannah to take this path for some very special purpose. We are so grateful for your thoughts & prayers, your gifts both practical & soulful, and for the love you sent to Hannah as well as to her brothers Adam, Ryan & Andrew. Although Hannah’s story began as every parent’s worst nightmare, it became a story of love and caring and why we are all here for each other.
Gratitude for the Run of Hope 2013
Sep 30, 2013 1:26pm
In my posting this morning, I neglected to mention an important part of our HHH team yesterday. Bainbridge Islander, Naomi Spinak, brought her family, her cookbooks and her cookies to our tent at the ROH. Naomi wrote a cookie cookbook, "A Year In Cookies" dedicated to her friend's son, Logan Wight, who too lost his battle with a brain tumor in Feb., 2012. Ironically, Logan was diagnosed the month that Hannah died. Naomi turned her baking gift into a book whose proceeds now benefit Jim Olson at the Fred Hutch Cancer Research Center. Many ROH participants were happy to find Naomi's books for sale and her molasses cookies free for the taking. Thank you Naomi.
A youtube video came across my Facebook newsfeed last week that demonstrated one of the key contributing factors to your happiness is how much GRATITUDE you show to the special people in your life. In the video, a small group of individuals were asked to write a letter to an important, influential person in their lives. But not only that, they were then asked to call that person on the phone and express their appreciation. The conclusion of the video was that the difference to your happiness is dependent upon not just thinking about the people in your life that you appreciate, but in actually expressing your gratitude to those folks. You can watch the video here to see for yourself: http://www.upworthy.com/scientists-discover-one-of-the-greatest-contributing-factors-to-happiness-youll-thank-me?g=2&c=upw8
I continue to believe that I would not still be here following Hannah’s death were it not for the love and support of my friends and family, both near and far. For that, I am grateful. This past weekend was another clear illustration of that support. Yesterday, over 40 Hannah’s Hopeful Hearts braved nasty weather to participate in the 5th annual Run of Hope. Between participants and donors, our team raised nearly $3000. With over 80 teams participating in the event, I’m sure they met their goal of $250,000. 100% of the money given goes to fund Dr. Jim Olson’s lab and its innovative search to cure pediatric brain cancer. We will continue to support the Run of Hope and Jim’s research as that was one of Hannah’s final wishes.
I continue to be impressed with the people that show up year after year to support our HHH team. Among those, I have to give special thanks to a couple people…to Ryan for promoting the event in memory of his sister; and to Kathi McMahon for helping me orchestrate the nuts and bolts of the event. I love you both, and I could not do this without you guys, let alone without our team. And I couldn’t say it better than Lisa, a fellow cancer Mom, who said this after yesterday’s Run: “This event is always bittersweet. We walk and run in memory of more children every year. People are generous and loving and amazing in so many ways that are incredibly visible at an event like the Run of Hope. It is humbling.”
As if the ROH wasn’t humbling enough, Bill and I attended another annual event this weekend, The Ben Towne Foundation’s benefit for childhood cancer research. Dr. Michael Jensen, a colleague of Dr. Olson, heads up this equally progressive work, harnessing a person’s immune system to fight cancer cells. Just as we continue to support causes in Hannah’s memory, Carin and Jeff Towne head up a great foundation in memory of their son, Ben, who died of neuroblastoma. We joined our friends Karen and Gregg Gerstenberger (Katie’s parents) and Mary Jane and Brian Boxer (Jenny’s parents) at this huge gala which probably raised over a million dollars. It was striking to me that at the Ben Towne dinner, our table with the Gerstenbergers and Boxers were among a handful of parents who have lost children, while at the Run of Hope, most of the families participating have experienced unfathomable grief. It’s remarkable that whether you’ve experienced the death of a child or not, there are so many folks ready to step up and support pediatric cancer research which is tragically underfunded. I can’t thank you enough for generously supporting these causes which are dear to our hearts.
I’ll do my best to thank those Hannah’s Hopeful Hearts in person. I’m guessing it elevates my own level of happiness. It certainly raises my hope.
I've posted a few new pics from our weekend in the photo gallery.
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