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In Honor of Hannah

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Hannah’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our beloved Hannah. It means so much to us that so many of you hold Hannah in your daily thoughts.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

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.

Latest Journal Update

2015 HHH Thank You!

I am immensely grateful for the Hannah’s Hopeful Hearts event we had at Grace Church a few weeks ago.  We had a full house and a very fun evening of food, drink, inspiration and music.  Dr. Olson and Dr Jensen were personable, funny and informative.  And the band, ah St. Paul de Vence!  The band had me shirking my hostess duties in order to sit down for their concert.  And to top it all off, we raised more than double what I had hoped we would (over $185K and still counting(!), as donations and matching gifts continue to trickle in.) I was especially grateful for Jim Olson’s sake that we raised so much since it was MY idea to include Dr. Jensen :)) But what started as a simple request from Jim to host another fundraiser, became quite a time, labor and heart-intensive project.

 

At first I thought, “No big deal…I’ve done this before, I can do it again.”  But the last time we had an HHH event, Hannah was still here. Little did I know that planning this evening would send me spiraling into another bout of grieving.  Event planning I could pretty much wrap my head around, despite the fact that I had to keep telling her story, but I was petrified with the notion of standing in front of hundreds of guests, talking about Hannah.  Usually, I’m overcome trying to speak in front of more than a dozen people, let alone in tribute to my deceased daughter.  But thankfully, and somewhat unbelievably, my preparation and her presence with me that night made it possible.  Here’s an excerpt of what I said, for those who weren’t there on April 10th:

 

Five years ago when Jim Olson was here for our first HHH, Hannah was here, smiling in the audience,so thrilled to see everyone’s support and to see so many people giving to the cause.  Back then, there was a sliver of hope that she would survive.  But 5 months later, she was gone.  And I miss her with all of my heart.

 

You know, Jim didn’t really know my daughter, Hannah.  I’ve often said, if I ever write a book it will be titled, “This is NOT my daughter!!” Jim knew Hannah as a product of her cancer surgery and treatment –an angry, rude, uncooperative, weak, wildly emotional girl.  Sassy maybe, but not as kind or as sharp as she once was.

 

Jim did not know my brave, beautiful, wise-beyond-her-years, funny, athletic, fiercely independent, hopeful girl who was the light of my life.

 

I’ve often thought –What if Jim’s Tumor Paint was available when Hannah had brain surgery back in 2007?  Maybe the Tumor Paint would have lit up the 200 or so cells that may have been missed, so the bad cells wouldn’t have been left to seed in her brain and become the cancer that would take her life.  And maybe the surgeons wouldn’t have accidentally taken healthy brain tissue that they couldn’t differentiate from cancerous cells, causing her to have to learn to walk, and speak, and dress and think all over again….

 

And maybe if one of Project Violet’s drug candidates was available to Hannah to treat her cancer instead of the chemotherapy that poisoned her body…. she may have been spared the hair loss, the feeding tubes, the multiple hospitalizations for secondary infections, the lost time with friends and family and school.

 

And maybe too, she wouldn’t have had to have radiation to her whole brain and spine.  Radiation is kryptonite to a growing brain and body.  It stopped her growth and diminished her brain capacity in so many ways. Hannah used to pride herself on being an excellent student.  That was taken away from her.

 

And maybe if Mike Jensen’s immunotherapy for brain tumors was ready when she relapsed, Hannah would still be here with us.  When Hannah’s cancer returned in 2009, we turned to Jim Olson, the expert on her particular brain tumor.  But 6 years ago, the only thing Jim could offer us was a hug and a heartfelt, “I’m so sorry.”

 

Fast-forward 6 years to today, and things look a lot brighter for kids who will be diagnosed with cancer in the future. Hannah would want us to keep fighting and not give up.  Hannah would want us to keep supporting these doctors who are finding cures not only for brain cancer, but for all childhood cancers.  Even the ones for which there is currently no cure.  I know that Jim and Mike are passionate about finding treatments that kill the cancer without harming the child. Hannah and Katie would want us to keep fighting and not give up.

 

Katie Gerstenberger died a few months before Hannah was diagnosed with her cancer.  They never knew each other in this lifetime.  But a few weeks before Hannah died, she was seeing (hallucinating) a girl that fit Katie’s description.  Karen, Katie’s Mom, and I believed that Katie was waiting to greet Hannah after she died. We believe the girls are now united as Karen and I are united in fighting this monster that killed our daughters.

 

Karen and I are in “that club” that no one wants to belong to – the club of mothers who have lost children.  No Dad wants to go through the hell of watching their child suffer and die. And no brother wants to grow up and live the rest of their lives without their sister.  So why do I stand here with my heart in my throat and organize a fundraiser which is basically a memorial to my daughter?  Because as Carin Towne, Ben’s mom, once said, “If parents like ourselves who understand the ultimate price of childhood cancer don’t’ stand up and say NO MORE, then who will?”   Thank you all for standing up with us.


I’ll never be able to thank my friends enough for helping me to put on this event.  I have the most amazing, talented, profoundly loving friends. First, there was that group of Hannah’s closest friends in the HHH t-shirts who had the guts and the desire to volunteer that evening.  I hope a part of their hearts was also healed that night.  I can’t name all of my friends who were there with me on April 10th; many have been with me since Hannah was diagnosed on November 5th, 2007; some close friends since our first children were born; and a few dear friends, like our caterer, Jeanette, date back to the 80’s when Bill and I met.  And then there are those soul friends who are in “that club” of mothers, forever linked by the loss of our children.

 

I’m not sure when we’ll have another HHH event like this one.  I do hope that Drs Olson and Jensen will combine forces again to share their complementary and collaborative research.  But we’ll certainly have an HHH team at Seward Park on Sept 27th for the next Run of Hope, supporting Dr.Olson.  Thanks to all of you for showing up, standing up, and for not giving up until better cures are found for kids with cancer. 

 

Love, Reba

(I’m trying to download photos of our HHH event here, but as was the case in planning the event, I’m having technical difficulties…I’ll keep working on it!)

I neglected to add that for those of you who would still like to make a donation to the Olson and/or Jensen labs, please contact Megen Strand at:  206-987-4823 or megen.strand@seattlechildrens.org

And for more info, www.hannahshopefulhearts.brownpapertickets.com


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Comments

2 Comments

Patty Christensen
By Patty Christensen
Reba - thank you for sharing this - I am so grateful to Drs. Olson and Jensen for continuing their work. My continued prayer is that families who have a loved ones diagnosed with cancer will have hopeful hearts because of the continued medical research and developments and that in your life time you will have the satisfaction of knowing there is a cure and that you helped to make that happen. I have so much admiration for your willingness to continue to try to make a difference. Hannah would be so proud of you, Bill, and her brothers. I'm so sorry I missed the event - sounds like it was a HUGE SUCCESS! Congratulations!
Karen Gerstenberger
By Karen Gerstenberger
Thank you for posting this here - I'm going to share a link to it on facebook.

Thank you and Bill for including our family, and Katie's story, in Hannah's Hopeful Hearts 2015. You wrote - and spoke - so beautifully! The event was perfect in every way, from food, to flowers, decor, music and of course, the message of real and present HOPE from Jim and Mike...the only thing that could have made it better would have been for our girls to there, healed and in remission. I believe they WERE with us in spirit! I thank Hannah and Katie for bringing us together.
With much love,
Karen