Monday, April 13, 2015

Hannah's Hopeful Hearts 2015 RECAP

On Friday evening, April 10th, I had the privilege of introducing my favorite cancer researcher (Dr. Michael Jensen) to the audience at Hannah's Hopeful Hearts 2015, held at Grace Episcopal Church on Bainbridge Island. Dr. Jensen was joined by Dr. Jim Olson, who also presented his latest, equally-inspiring research. The two doctors are friends, and their work is complementary, but they focus on different areas of oncology.

You've probably read notices about HHH, if you follow my blog, facebook postings, or read Inside Bainbridge, the Bainbridge Review or the North Kitsap Herald, as I have been spreading the word as much as possible.
Dr. Jim Olson and Reba Ferguson (Hannah's mom/HHH organizer) Photo credit: Project Violet - www.projectviolet.org
The event was a huge success, for which I thank my friend, Reba Ferguson (Hannah's mother). Reba poured her heart and countless hours of time into making this event go. She personally oversaw EVERY SINGLE detail, and she did it with grace, good humor, and kindness. It was a marvel to watch her work with people from different organizations over months of planning - with attention to detail, yet without micromanaging. I thought I would simply volunteer to be of help in the background, but Reba's generous heart opened wide to invite us to include Katie and tell her story as part of this event. Reba introduced Dr. Olson, and invited me to introduce Dr. Jensen.

I was very nervous - very, very nervous - about speaking. I don't know why this is the case, as I used to speak in front of large groups at work. I used to love being on stage; I even thought (in my youth) that I might want to major in drama in college. I like to talk. But it is becoming increasingly difficult, rather than easier, to speak - and nearly impossible to do so without notes. I have a couple of theories about why (including the emotional nature of the subject, hormones, personal betrayals which have undermined my confidence, PTSD-induced anxiety, perfectionism..."the usual suspects"), but whatever the underlying cause, I was nervous.

As I was getting dressed, I noticed that the more nervous I am, the more I fall into what I think of as "Bellevue Syndrome." It's a function of my upbringing in that community:  to avoid being criticized or mocked, I try to present a PERFECT SURFACE. That was a big deal in the Bellevue, Washington of my day, and it means trying to cover any physical imperfections by dressing and using makeup to the very best advantage. It's humorous, once I am aware of it; it reminds me of that saying about "rearranging the deck chairs on the Titanic." I KNOW that no one is perfect, and that everyone is more concerned with their own issues and appearance than they are about other peoples'. But for some illogical reason, I go through the process - and then I let it go.

{ Last night, at the Rolling Bay Presbyterian Women's Fellowship Dinner, a singer with the voice of an angel gifted us with two different songs. She said, as a throw-away comment, "Fortunately, only God has to be perfect!," and her words went right to my heart. I wish I had heard her say it a couple of weeks ago, but I was grateful to hear it at all! }

So, getting ready for Friday night, I prayed a lot. It helped to have Gregg, David, my parents, Reba's family, many friends and our Sh*tty First Draft Writing Group there to support us. Reiki also helped to calm me.

I was enormously thankful for the opportunity to share from my heart with this group, and to introduce someone whose work means so very much to me. And it went well. Reba, Dr. Jim Olson and Dr. Mike Jensen spoke beautifully. I did my part wholeheartedly, and most importantly, the event introduced a lot of people (300 or so) to cutting-edge, super-exciting, non-toxic cancer care, and to the brilliant researchers who designed it, and who lead the teams which produce and administer it at Fred Hutchinson Cancer Research Center and The Ben Towne Center at Seattle Children's Research Institute.

The totals are not in yet, because there will be employer matching to tally, but as of Friday night, Hannah's Hopeful Hearts raised $180,000 to be split between Dr. Jim Olson's lab and Dr. Michael Jensen's lab. That is enough to pay the salary of a cancer researcher for one year in each lab!

So, although my part was small, I will share it with you here...
"By now, most of you know something about Katie’s story:  what a joyful, healthy and active girl she was for 11 ½ years; her dreams of being a writer, actor and mother; her shocking stage-4 diagnosis of a widespread tumor after 3 weeks of the simple symptoms of a virus.
 
During her prescribed 5 rounds of devastating chemotherapy and the grueling,18-hour surgery which followed, Katie suffered horrendously – and nearly died. It is hard to describe the pain of bearing with the suffering of your beloved child who is desperately ill with cancer, made even more ill from the side effects of poisonous treatment. We could see that the treatment was doing tremendous damage to Katie’s health - which was counter-intuitive to us - but there was simply nothing else to offer her. Her doctors – some of the best in the country - had to use the “blunt instruments” at hand, or stand by and let this massive tumor kill her rapidly.

We longed for a better way, but back in 2006, there was none available.

During all of this time, we were carried on the prayers of many faithful friends and family members. We felt those prayers, and saw many evidences of God’s tender love all through the 10 difficult months of Katie’s illness.

After Katie’s passing, I began to feel concern that her death might cause people to lose their faith. I myself wrestled actively with God, day by day, in my grief. I still loved Him, but I had a lot of hard questions, and I assumed others would, as well.

I didn’t want Katie’s suffering and death to turn people away from praying to God, or leave them feeling as if God didn’t hear their prayers, or didn’t care enough to answer them. Eventually, I realized that this was not my responsibility, but it concerned me.

In the fall of 2007, shortly after Katie’s passing, we invited our neighbors to have dessert with us. Ken is an immunologist, and his wife is a two-time cancer survivor – and they are also parents. I knew that they would understand our questions.

I asked Ken, “Why are we poisoning children? Why are we not harnessing the immune system, and using its power to kill cancer?” Ken told me that scientists would love to be able to do that, but they didn’t sufficiently understand how the immune system worked, to make it possible, at that time.

We continued to hope for better cures, devoting time and energy to establishing the Katie Gerstenberger Endowment for Cancer Research at Seattle Children’s Hospital, supported by of our generous family and friends.

In the summer of 2010, we were invited to a small gathering to meet Dr. Michael Jensen; he had been in Seattle for only five days.
As Mike talked about his research, I told him, “This is exactly what I was asking my neighbor about!,” and I began to feel very hopeful.

We gathered in the living room of this beautiful home, and Mike showed a video which changed my life (and I hope it will change yours). He showed us a film of T-cells devouring a brain tumor. No chemotherapy, no radiation – just the patient’s own immune system, working to kill the invading cells.

I leaned against the wall, felt tears welling in my eyes, and whispered to my friend Carin Towne (who was standing next to me), “This is it. This is what we’ve been praying for! The answer to our prayers is here.”

After getting to know Mike a bit more, I decided that it would be a good idea for him to meet our neighbor, Ken, so we invited the two couples to dinner. It made me very happy to see Mike and Ken chatting together in our kitchen, but after that, there was no “science talk” around the dinner table. I was a little bit disappointed that my attempt at “scientific matchmaking” was bearing no obvious fruit, but it was still a lovely evening.

Well, I was wrong. Though it wasn’t obvious that night, a match had been made.
You may have heard about a new company in Seattle, which debuted on the NASDAQ exchange in Dec. 2014, called Juno Therapeutics - a “biopharmaceutical company focused on revolutionizing medicine by re-engaging the body's immune system to treat cancer.” Juno Therapeutics is a partnership between Seattle Children’s Research Institute, Fred Hutchinson Cancer Research Center and Memorial-Sloan-Kettering Cancer Center. Dr. Mike Jensen is one of its Scientific Founders - and our neighbor, Ken, is the Chief Scientific Officer! We would like to thank Juno for their support of Hannah’s Hopeful Hearts this evening.

As Director of the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute, Dr. Jensen and his team have - to date - saved the lives of 19 children - children who had no more treatment optionswithout poisonous chemo, radiation or surgery. Young lives have been restored, and families saved, from the grief that we have endured. Katie’s Endowment supports this work.

So it is my pleasure to tell you, here and now, that our prayers are being answered; we have the privilege to witness this, and we have the privilege to support the work. And here is the man who will tell you about it: a brilliant researcher, a passionate and compassionate care-giver, and one of my heroesDr. Michael Jensen."

Thank you to every person who attended and donated to Hannah's Hopeful Hearts!

6 comments:

Elizabeth said...

I am just in awe of all of this, Karen, and mainly of your incredible testimony, faith and grace.

On a practical note, I loved your description of "Bellevue Syndrome." I don't think I'll ever get ready for a public speaking engagement now without at least inwardly chuckling about that!

And as an aside, I just worked on a chapter of a ghostwriting project that was about cannabis and immunology. Fascinating stuff -- the fact that we have cannabinoid receptors in our brains that are intricately involved with our immune system -- I, too, have high hopes that more holistic treatments for a host of diseases are on the horizon!

Karen Gerstenberger said...

Dear Elizabeth, thank you for your encouraging comment. I think about the 20 years during which you have walked alongside of Sophie, and I marvel at your stamina and devotion, knowing that you have had only "blunt instruments" to use, until cannabis became available. I'd love to hear more about your ghostwriting, and am thrilled that research is being done on the connection between cannabis and the immune system. Xoxo

Anonymous said...

So proud of you my friend. Wish we could have been there. Mahalo...Carin xoxo

Anonymous said...

So proud of you my friend. Wish we could have been there. Mahalo...Carin xoxo

Karen Gerstenberger said...

We missed you - I carried you & your family in my heart, Carin! Mahalo xoxo

Daisy said...

Beautiful intro, Karen. You made me smile several times. Both you and your friend, Reba, are a wonder. I am amazed and grateful to hear of these new medical developments.

PS. Forgot about the "rearranging the Titanic's deck chairs." Very good kick in the pants.