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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

Thank you Team HHH! and SAVE THE DATE for Olson and Jensen!!

Our 5th year participating in the Run of Hope was another success.  We had a larger turnout of runners and walkers than I had expected, including some of Hannah’s now-16 year old girlfriends!   I was also especially happy that both Ryan and Andrew were able to join me and Bill for the event.  The day always leaves me exhausted, grateful and somewhat sad, knowing that so many of the families that collectively put on the Run of Hope are doing so while missing their sweet children.  As one bereaved Mom said to me, some day, we won’t have to do this anymore. That’s the hope. 

 

Our Hannah’s Hopeful Hearts team contributed over $3000 to Dr. Olson’s research towards a grand total of over $375K!!  On Sunday, Jim said,

 

 “We wouldn’t be at this point if it weren’t for events like this.  The patients and their families, through all the fundraising at Children’s and all the fundraising at Fred Hutch for pediatric brain tumor research have together raised over 13 million dollars!  More kids are going to survive in the future and fewer kids are going to have toxicity in the future thanks to events like this.”

 

 Jim was especially happy to announce that thanks to everyone’s support the FDA has approved his tumor paint which will begin patient trials in the spring of 2015.

 

Tumor Paint – the scorpion-derived miracle stuff that lights up cancer cells so that surgeons can differentiate normal cells from cancerous cells – is not the only thing going on in Jim’s lab at the Fred Hutch.  His “Project Violet” relies on the support of the community to rapidly advance cancer research for a new class of cancer drugs created from nature.  Ryan and I recently were privileged to tour the lab with the brains behind this new science.  The beautiful thing is that Dr.Olson and his team’s research will help not just pediatric cancer patients but adults with cancer and a whole host of diseases.  There are a multitude of reasons to support the Olson lab. 

 

Which brings me to my special announcement:  On April 10, 2015, we will host another Hannah’s Hopeful Hearts fundraiser at Grace Church!  After Ryan and I visited his lab, Jim told me that our first event at Grace in 2010 – the event where Hannah was present -was one of the most meaningful nights of his life.  He asked me if our community would be interested in a research update as well as an opportunity to further support his work.  Of course I said, YES!  I was also intrigued by the possibility ofinviting Dr. Mike Jensen, lead researcher at the Ben Towne Centerfor Cancer Research in Seattle tojoin us that night.  Jim graciously agreedto share the night and Mike happily came on board.  Earlier this year, Grace Church hostedanother event in support of Ben Towne as 4 young people – including 2 of Hannah’sclassmates – cycled across the country in RAAM (Race Across America), whileraising money for Dr. Jensen’s immunotherapy research.

 

This Hannah’s HopefulHearts event in April will be a ground-breaking and memorable night as seldom,if ever before, do Dr. Olson and Dr. Jensen appear together.  While they work in separate labs and approachcancer from different angles, they have the utmost respect for each other.  As Jim said, “Mike and I trained together, wewere Fellows together, we are brothers.” I am SO EXCITED and grateful that these two world champions in pediatric cancer research will come togetherto share their work in one night at Grace.

 

Not only do we have this rare opportunity to hear from Olson and Jensen in one fell swoop, butwe’ll have special musical guests that night …to be announced!!  When I confirm the band, I’ll let you allknow.  But in the meantime, SAVE THEDATE!  APRIL 10, 2015!

 

Love, Reba

 

I’ve added new Run of Hope photos to the album

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Comments

3 Comments

Sarah Sydor
By Sarah Sydor
Looking forward to 4/10/15 - wouldn't miss it for anything!
Karen Gerstenberger
By Karen Gerstenberger
Congratulations on your achievement at the ROH. You are a great advocate, and I canNOT wait to join you at Hannah's Hopeful Hearts' event in April (and am ready to help in any way)!
With love,
Karen (& Gregg)