Showing posts with label grace. Show all posts
Showing posts with label grace. Show all posts

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!

Monday, March 9, 2015

Hannah's Hopeful Hearts - Join Us April 10th!

Please join us!
Mark your calendar,
and go to
to reserve your tickets! Space is limited; don't miss this special event!
Gregg and I are delighted to invite you to join us at Hannah’s Hopeful Hearts on Friday, April 10th, 2015, 7:00 pm at Grace Church on Bainbridge Island.  This event is in memory of Hannah Hunt and our daughter Katie, two vibrant, beloved girls who passed away from pediatric cancer.

The first Hannah’s Hopeful Hearts event in March, 2010 was an enormous success, raising funds for brain tumor research which were critical in the development of Dr. Jim Olson’s Tumor Paint, which is now in clinical trials.  Tumor Paint aids in surgery by illuminating only cancerous cells, improving outcomes by leaving healthy brain cells untouched. Further innovative research is being pursued by Jim and his colleagues at Fred Hutchinson Cancer Research Center under the name of Project Violet. They are creating a new class of nature-derived compounds that treat cancer (and other diseases) while leaving healthy cells untouched.

The Katie Gerstenberger Endowment for Cancer Research supports the Jensen Lab at the Ben Towne Center for Childhood Cancer Research (BTCCCR). The Jensen Lab is named for Dr. Michael Jensen, a Bainbridge Island resident and the director of the BTCCCR at Seattle Children's Research Institute. Under Mike’s leadership, the BTCCR has achieved great success with its T-Cell (immunotherapy) research, targeting the most common childhood cancers - leukemia, neuroblastoma, brain tumors and sarcomas.  Currently, 11 children (and counting) who have been treated through the BTCCR’s clinical trials are in remission! A new clinical trial treating relapsed neuroblastoma has been launched, and there is hopeful progress for curing brain tumors with T-Cell therapy, as well. 

At the Hannah’s Hopeful Hearts event on April 10th, you will hear presentations by, and a moderated discussion with, Dr. Olson and Dr. Jensen – two leading lights in cancer research who have never before shared a stage.  Hannah’s mother, Reba Ferguson, and I will speak briefly on behalf of families supporting Jim’s and Mike’s work. Wine and beer, light hors d’oeuvres and a simple dessert buffet will be provided; the evening will conclude with a lively concert by the band St. Paul de Vence.  This band is featured on The Violet Sessions CD, a creative project which supports the Olson Lab. If you’d like to hear a sample of their music, go to http://stpaulband.com/#/music/ .

Please reserve your spot now at http://hannahshopefulhearts.brownpapertickets.com,
and join us and the Hunt-Ferguson family for an inspirational evening, furthering the work of these two brilliant doctors in their mutual goal of finding less toxic, more effective treatments for pediatric cancer. If you are unable to join us on April 10th, you may make a donation via the same link (perhaps your employer will match your gift).

With hope and gratitude,
Karen and Gregg Gerstenberger

 Special thanks to our Title Sponsor, Windermere Real Estate of Bainbridge Island, WA

Hannah’s Hopeful Hearts 2015 benefits:

Monday, January 26, 2015

Hannah's Hopeful Hearts

I just received this message from our friends, Reba & Bill:
     On March 19th, 2010, the Bainbridge community came together at Grace Church for the Hannah's Hopeful Hearts "Climbing Mountains for A Cure for Brain Tumors" fundraiser.  The event was an enormous success both in terms of the love that was poured out for Hannah and our family and for the funds raised for brain tumor research.  The funds were critical for the development of Tumor Paint in Dr. Jim Olson’s lab.  We are delighted to share that the US FDA just gave the green light to begin brain tumor trials in the US with BLZ-100, the first tumor paint product. 
     In addition to Tumor Paint, innovative research under the name of Project Violet was developed by Jim and his colleagues at the Fred Hutchinson Cancer Research Center.  Project Violet aspires to develop a new class of nature-derived anti-cancer compounds that attack cancer cells while leaving healthy cells untouched.  This project largely depends on public donations – often from parents and friends of Olson’s pediatric patients - to fund the development of drugs to treat cancer or other diseases once thought incurable.
     Another pediatric cancer researcher, Dr. Michael Jensen, heads up the Ben Towne Center for Childhood Cancer Research.  Affiliated with Seattle Children’s Hospital, the Ben Towne Center has in a few short years achieved great success with their immunotherapy research.  Currently, 13 children and counting are leukemia-free, the relapsed neuroblastoma trial is beginning, and there is hopeful progress in targeting brain tumors. Additionally, Grace Church sponsored a young team of cyclists last year in the Race Across America (RAAM), benefiting Mike Jensen’s research.  Two of these cyclists were classmates of our daughter, Hannah.  We have been proud to support both Jim and Mike’s work.
     We are excited to announce that for the first time ever, Dr. Olson and Dr. Jensen graciously agreed to come together in one special night to update our community on their work and progress in childhood cancer research.
This new Hannah’s Hopeful Hearts event will take place on Friday, April, 10th, 2015, beginning at 7 pm at Grace Church on Bainbridge Island.  Following presentations from Dr. Olson and Dr. Jensen, a call for donations will take place.  During the night, wine, light hors d’oeuvres and a simple dessert buffet will be provided.  The evening will conclude with a lively concert by the band, St. Paul de Vence.  Friends with Jim, this band contributed to the Violet Sessions CD, a creative project that helps to fund research at the Olson lab. 
     We look forward to another heartfelt and inspirational evening to further the work of these two amazing doctors towards their mutual goals of finding less toxic, more effective treatments for pediatric cancer.  And in the words of our favorite QB who is #strongagainstcancer, Go Jim!!  Go Mike!!  Go Hawks!!

With gratitude and hope,  
Reba Ferguson and Bill Hunt
Gregg and I will be participating in this event, and we invite you to mark your calendars and join us. It's going to be a stellar evening, filled with good news, hope, thanksgiving and joy.

Sunday, November 23, 2014

Creativity in Healing & Spiritual Growth

Grace Episcopal Church on Bainbridge Island, WA
is hosting a series called
"Spiritual Practice Saturdays."
On December 6, from 9:30am - Noon, 
I'll be leading "Creativity in Healing and Spiritual Growth,"
and you're invited to attend!
Here is the description, from Grace's email:
 "God as Creator has made us creative. Inviting that creativity into our spiritual practice can be daunting, and an authentic pathway into healing and growth. Come spend a morning with us as Karen Gerstenberger, author and speaker, guides us as we write and walk and draw mandalas as spiritual practice. Together, we will playfully and skillfully encourage our 'unencumbered self' to authentic expression - the kind of expression that leads to healing, growth and joy. 
To help us plan, please contact Robin Livingston robin@robinmlivingston.com if you wish to attend."

Thursday, April 3, 2014

Light, Refuge and Strength

I'm finding the practice of yoga two or three times a week to be highly therapeutic, physically, spiritually, mentally and emotionally. Practicing more often might be better yet, but I'm a beginner, and this is where I begin.

Yoga is helping me to recognize my less-than-gentle thought patterns. It doesn't stop them altogether, but helps me notice them, and once recognized, I can choose whether or not to continue thinking that way.

At Rancho La Puerta, I heard afresh how unkind my inner-critic is, about my body and about all of the mistakes I make in daily living. The harshness of that voice stood out loudly, because I was in a space where everyone treated me with gentleness, kindness and encouragement. I began to wonder: maybe God isn't a taskmaster.

For someone who believes that "God is Love" - who has heard and believed those words since childhood - I realized that I don't always live as if I truly know it. Unconditional love is a wonderful concept, but at times, I have a functionally different image of God: God as an irritable, impatient parent. Intellectually, that doesn't make sense, but emotionally, there it is.

Recently, I saw this in action, when a friend shared her story of a family crisis. I listened with deep compassion and concern, but felt powerless to help. That powerless feeling was extremely uncomfortable. It was hard to bear, knowing that I could not make this better for her.

After more than seven years of walking in the world of cancer and grief, I found myself as lost for words as the most clueless novice imaginable. I stumbled over my words, and later, silently raked myself over the coals.

It's important to be aware of this, because there were times when I was unhappy to be on the receiving end of the things that people said to us when Katie was ill, and after her passing. Though well-meaning, some said banal, inappropriate or unhelpful things. Listening to my friend's difficulty, I felt just like one of those people.

Eventually, I noticed how savage I was being about my ineptness, and thought, "This conversation is not the most important thing in her day; let it go." I prayed for her and her family. I prayed over my clumsy words - prayed that God would communicate to her my loving intention, and allow only blessing to come from those words. I remembered yoga, and mindfulness, and made an effort to be gentle and kind to myself.

And then, this happened: a periwinkle blue (lavender) butterfly appeared.
I kid you not. 
I have never seen a butterfly of this color in my life. 
It flew right in front of me and landed on a branch. I tried to just be present to it, but I had to take a photo - the color was so rare! Then I looked deeply at this gentle creature, and knew that it was a message of love from God (and Katie), that "the Light shines in darkness, and the darkness does not overcome it."
"At the beginning God expressed himself. That personal expression, that word, was with God, and was God, and he existed with God from the beginning. All creation took place through him, and none took place without him. In him appeared life and this life was the light of mankind. The light still shines in the darkness and the darkness has never put it out." - John 1:1-5, J.B. Phillips New Testament
My personal ineptness - my humanity-  cannot muffle or put out the Light that is in this world, in each one of us. That Light is Life, and it is Love. God made us human, including love AND awkwardness.

The next morning, reading devotionals, I decided to look for all of the qualities of God that were listed in the texts of the day. Here is what I found:
  • Love
  • gracious
  • merciful
  • slow to anger (patient)
  • kind
  • good to all
  • compassionate toward all
  • faithful in all His words
  • holy in all His works
  • lifts up the falling
  • raises up the bowed
  • just in all His ways
  • near to all who call on Him
  • all-sufficient
  • generous giver
  • healer
  • restorer
  • Life
  • Spirit
  • seeker
  • finder
  • forgiving
That doesn't sound like a taskmaster to me; it sounds like a loving, understanding parent - one whose promises we can trust.
"God is our refuge and strength; an ever-present help in trouble." Ps. 46

Thursday, February 21, 2013

As Jackson Browne Says, "I'm Alive"



“LORD GOD, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone. Amen.” - Thomas Merton

I have been on a blog-sabbatical, because the year 2012 ended with huge work-related difficulties. Certain events knocked my feet out from under me for a couple of months; I feel as if I'm recovering from a debilitating illness, but have renewed hope that "all shall be well."

David came home safely & happily from his semester in Italy, and is now back at school. During his vacation, we celebrated Christmas with my parents. 
I am deeply thankful that both of my parents are alive and well, at the ages of 80 and 85 years. Not only do we enjoy each other's company, but their love and support means the world to me; they helped me enormously through this difficult time. No matter how old you are, you still need your mom's and dad's love, support, understanding, strength and wisdom!

The impetus to start blogging again came in the form of a newsletter from www.griefHaven.org. I wrote an article for their "Parent Journey" newsletter last summer, and it was recently published; you can read it by clicking on the link below the picture. 

 


There is always inspiration and support at griefHaven. Susan Whitmore, the founder, understands this journey as no outsider can, because she is on this journey herself; her only daughter, Erika, passed away from cancer as a young adult. Susan is compassionate, sparky, strong, tender, encouraging, intelligent and a good communicator. I am thankful that she was inspired to found griefHaven in Erika’s memory, and to share her wisdom and experience with others.

I am beginning to believe that, no matter how empathetic people are, no matter how caring and compassionate, no matter how well-meaning or how much they think they understand what we are going through, no one understands what this experience is really like unless they have been through it. 

No one else can understand the landscape through which we walk - the vulnerability, the longing, the daily ache of missing our child, the frequent reminders, the life-long series of “no, not ever” and “never-again,” the unseen hazards that lie in wait for us like buried land mines. Panic attacks, PTSD, memory triggers,  the excruciating, debilitating pain of trauma-recall (like a punch to the gut) which we experience in the grocery store, on vacation, while driving a car, listening to the radio, surfing the internet – anytime, anywhere - these are not a part of the average person's daily life. You may work with us or socialize with us, but unless you are one of us, you cannot possibly truly know how we feel, and we hope that you never do, for your sake. 

Because of this, please consider us and our idiosyncrasies with a bit of extra compassion, for you do not know what we are seeing and experiencing. We may be standing right in front of you, yet not present with you at all. Though looking at you, we may have dropped through an invisible trap-door to the past, and be re-living the moment of our child’s diagnosis, or his death in our arms, handling her ashes, or that telephone call – the one which gave us the news which ended our life as we knew it. That phone call which started us on our journey, down the path which no parent wants to take.

Though it may sound morbid, there is comfort in the company of bereaved mothers, comfort which I don't find elsewhere. Of course, there are also those with whom I have nothing in common other than our child's death, and those relationships do not develop. I recently joined a small writing group whose members are bereaved moms, and it is encouraging, stimulating, and fun. I have hope for each one of us as writers, and as women, making our way in the world, each of us carrying (as one of them said) "a brick in her pocket."

I was speaking with another dear friend and fellow-traveler on this road, and we both find that the certainty, clarity and authority which came to us during our child’s illness, and after her death, has faded somewhat over the years, and is not as strong now as it was then. We are both saddened by this additional loss. That clarity and sureness was one of the gifts I felt that Katie had left to me: “Mom, you need to stop apologizing.” Of course, I will apologize when I know that I am wrong; Katie was saying that I needed to stop apologizing for being fully, truly myself…and she was absolutely right. I have not had difficulty advocating for my children; however, doing so for myself has proven to be more problematic. By grace, I can ask for help in this area, and receive it.

Here are a few ideas which have been helpful recently:
"Suffering is the sandpaper of our life. It does its work of shaping us. Suffering is part of our training program for becoming wise."   -Ram Dass

"Those who love you are not fooled by mistakes you have made or dark images you hold about yourself. They remember your beauty when you feel ugly; your wholeness when you are broken; 

your innocence when you feel guilty; and your purpose when you are confused." -African saying
 

"God doesn't lose heart! Beginning with creation God keeps coming up with creative, imaginative ways to respond to our destruction, our refusals, our ignorance and stubbornness and sin. God comes after us and will never stop. Jesus keeps saying this: that he has come to search out what is lost, to find and heal the broken-hearted, to bring good news to the poor. That is what Jesus is here for - unconditional love!  God just keeps devising more and more mysterious and humble and spirit-filled ways to get us to be human and love back.- Megan McKenna, from Parables – sent via email in A Daily Spiritual Seed

"I have sometimes been wildly, despairingly, acutely miserable...but through it all I still know quite certainly that just to be alive is a grand thing." - Agatha Christie