#BTFBenefit2014 and the Number 10

#BTFBenefit2014 and the Number 10

Reba, Gregg, Lynora, Daniel, me, Jim & Caroline

Something absolutely wonderful happened on Friday evening. We gathered with friends and family among 1,700 people to celebrate the tremendous achievements of the Ben Towne Foundation's first five years in existence.

Reba and Bill

Two members of the TEAM BTF Ride Across America Team

In the space of 10 minutes, over $1,600,000 was raised to support childhood cancer research at the Ben Towne Center for Childhood Cancer Research, with the help of Joel McHale, who hosted and kept us all laughing.

Reba, Joel and me

As always, Carin and Jeff Towne and Dr. Michael Jensen spoke movingly, beautifully and with passion about their mission. A brief video shared the story of one of the most recent recipients of Dr. Jensen's T-cell therapy.

In addition to the wonderful sum raised that night, we celebrated these milestones:
- two clinical trials were launched for T-cell treatment of leukemia
- a third clinical trial is ready for submission, for the treatment of neuroblastoma
- 10 PATIENTS ARE IN REMISSION! Stop right there. 
 Ten patients who had experienced relapse, who had no other treatment options - whose hope for a cure was completely exhausted, and were facing death - those ten children are now in remission.

Ten families are not heartbroken today - parents, siblings, extended family and community - have their precious, beloved child with them. Ten families did not have to sign "do not resuscitate" forms, did not have to request hospice care, did not have to plan a memorial service, pick a headstone, face an empty bedroom.

Ten.

I was so happy Friday night that I could not go to sleep.

In no way does this great accomplishment reduce the pain of missing Katie, or change the fact of her absence in our home, our lives and and in our future. And yet...
And yet, for me, this is a kind of justice for her killer. This is arresting the culprit. This is going to prevent this tragedy from being repeated, over and over again.

Not only that, but T-Cell treatment does not endanger the future life of the patient, because it does not cause organ damage, reproductive damage, hearing loss or secondary cancers, the way that traditional chemotherapy and radiation do. This treatment uses the body's own immune system to heal itself, and the possibilities for its use are endless.

With research, it can be applied to different kinds of cancer, and to adults, as well as to children. All we need to do is continue to find funding for the work to continue and expand.

Tonight, some parent who thought their child was going to die, is instead going to tuck her into bed, and kiss and hug her "good night." It won't be me and my daughter, yet I am happy for that family - for all ten of those families who have received this gift from Dr. Michael Jensen and his research team at the Ben Towne Center. We will continue to support this work through the Katie Gerstenberger Endowment for Cancer Research, and through the Ben Towne Foundation, and in any other way we can.

My friend Lynora and her son Daniel came all the way from Alaska to join us!

Lynora, Reba and me - as Reba says, "Mothers in Arms"

I am asking you to help us spread the word about this, and - if you are able - to join us in supporting it. 

100% of every penny and dollar which you donate to the Ben Towne Foundation for Childhood Cancer Research goes to research. There is not one cent of overhead cost deducted from your donation; every bit goes to funding research. Please share this happy news with your community, and join us! As Ben used to say, "Come on, everybody!"

*if you are an Instagram user, you can see more photos of the event at #BTFBenefit2014

Inspired to Give

1100 people gathered for the Ben Towne Foundation's BENefit 2013 (Image: Bryce Covey Photography)

Around here, autumn is the time when many charities host fundraisers. Gregg and I are always pleased to attend the Ben Towne Foundation's annual BENefit. We've had the privilege of being an active part of this event from its inception, and watching it grow each year lifts my heart like no other "gala" can.

Though the thing that drew us together with the Townes is the worst thing that has ever happened to us, our friendship goes far beyond that loss. It includes our sense of humor, commitment to family, a lot of coincidences, shared tastes and sensibilities, fierceness, passion and joie de vivre. It is pure pleasure to be counted among their friends and supporters, and to do all that we can to share their message and raise awareness of it.

Jeff & Carin Towne with Dr. Michael Jensen (Image: Bryce Covey Photography)

Though there are always some moments during the program that make me cry, most of my emotions at the BENefit are joyful, because the Ben Towne Foundation is getting the job done - making my dreams of a cure for pediatric cancer come true, in this time and place. Through their efforts, the pace is accelerating here in Seattle under the leadership of Dr. Mike Jensen and Dr. Rebecca Gardner (two special favorites of mine), among others. The Katie Gerstenberger Endowment for cancer research supports their laboratory.

Reba & Mary-Jane with me

Joining us at our table were my parents, brother Jim and sister-in-law Caroline, and our friends Reba, Bill, Mary-Jane and Brian. Let me give you a few statistics about our table: 60% of us had our only daughter die from pediatric cancer. Every single person at our table (100%) had suffered the loss of someone close to them as a result of pediatric cancer. For 20% of our table, it was their ONLY child (100% of the children in that family). All of us want to see this disease wiped out, with as few side effects, as quickly as possible. And we were in the right place to help the researches accomplish that.

The news is good, my friends: the first patient in the clinical trial of T-Cell therapy continues to enjoy remission, gained after only 9 days of treatment, with side effects of flu-like symptoms during that time. The next patient is ready to enroll, and it looks as if the clinical trial will soon be expanded to include a much broader range of ages - open for more patients to be treated and cured in this new, non-toxic way!

Did you know that it can cost 10 times more to treat a child with traditional chemotherapy than with T-Cell therapy - and surgery costs even more? The bill for Katie's care was in the neighborhood of a million dollars, for which we were (thank God) covered by medical insurance - but there are many whose finances are completely wiped out by such treatment, and without the promise of a cure!

Think of it this way: you could spend $350,000 for a patient to endure chemo, which can cause secondary cancers, organ damage, susceptibility to infections and reproductive problems - or $30,000 for a patient to have T-Cell therapy, with no long-term damage whatsoever, and continuing immune-system support for remission. Which would you choose for your child - or for yourself? What would you like to see become the "norm?"

Last week, I had the privilege and pleasure of attending an elegant "thank you" party for Seattle Children's Hospital's Circle of Care as the guest of one of our dear friends. The Circle of Care was conceived and founded by Scott and Laurie Oki, at Seattle Children's through their challenge grant of $1,000,000 in 1993; since that time, it has spread across the nation and has inspired $4.7 BILLION of giving to 25 children's hospitals in North America! This group is deeply appreciated by the hospital community. We enjoyed an inspiring evening of intimate conversations with top doctors and supporters who are equally committed to improving the health and quality of children's lives. I hope someday to be able to join the Circle of Care!

On this day - the very one on which Katie was admitted into the hospital in 2006 - people such as Katie, Carin and Jeff Towne, Dr. Jensen, the Okis and all of the members of the Circle of Care inspire me. Who (or what) inspires you to give?

Inspired by Love and Service

"The beauty and charm of selfless love and service should not die away from the face of the earth. The world should know that a life of dedication is possible, that a life inspired by love and service to humanity is possible." - Sri Amritanandamayi Devi

 

This love and service are perfectly expressed in nursing care, whether it is a family member caring for a child who is sick with a virus, or a professional nurse with advanced training, serving in an intensive care unit. One of the most tender aspects of this love and service to humanity is seen in hospice nurses. 

I am privileged to know a hospice nurse who was trained in the ICU, and moved outward from there to care for people with life-limiting illness - those who choose to forego extraordinary means of prolonging their lives, preferring to focus on quality of life over quantity.

When we were faced with Katie's diagnosis of relapsed adrenocortical carcinoma (and with it, "terminal" cancer), Seattle Children's Hospital offered to call hospice and request care for Katie in our home. We accepted, in shock and gratitude. Amy came over a few days later with the hospice social worker, Dee; they explained everything and answered our questions.

 

In many parts of the country, hospice is not available for children. One of the reasons for this is the fact that - even among hospice professionals, where death is viewed as a natural part of life - the death of a child is a very hard thing to witness and accept. Fortunately for us, Amy knew that "The LORD cares deeply when his loved ones die" (Psalm 116: 15), and she came alongside to teach and help us, providing skilled hands to deliver that sacred care.

Over the next weeks, Katie's condition grew more life-limiting as the disease advanced in its unique and terrible way. During that time, Amy was always just a phone call - and a few minutes' drive - from us, all day and night, every day. She consulted by telephone, made home visits, provided comfort care and listened, in the most compassionate, understanding and devoted way. Katie was not happy to be in hospice care, and adopted what we call a "spicy" attitude to Amy (calling her "the quack" when she was out of earshot), but Amy understood this and loved her. 

 

We will be forever grateful to Amy for her support in some of the most tender and sacred moments of our daughter's life and death.

 

Amy writes a beautiful blog, and has just published an article in the American Journal of Nursing which I highly recommend; it can be found HERE. For more insight on this subject, check out this article in The Week magazine (an excerpt from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. ©2013 by Katherine Anne Butler).

 

When one you love is sick or dying - whether you are a family member, friend or professional caregiver - your gifts of love and selfless service are essential. Your presence can bring peace and comfort - even if no cure is possible - and in so doing, you act as the very hands of the Holy One (Matt. 25: 36-40). It is a sacred vocation.

The Sun Magazine | Dawn And Mary

The Sun Magazine | Dawn And Mary

My writing group gathered for dinner here the other night. The "Sh*tty First Draft Writing Group" has five members, each of whom has suffered the death of a child, each of whom has a strong character and a love for the written word. We meet to encourage one other to write - even what Ann Lamott calls "sh*tty first drafts" - or ideas that are still in our minds, or scrawls on scraps of paper...any writing, in any form, is welcome.

You might think this is a depressing group, but you would be mistaken in that assumption. Yes, someone occasionally cries, but there is far more laughter, lively discussion and deep listening. We share ideas, whatever we are working on and books we have read; we drink wine. We share our stories. We hold space for each other, talk about what it is really like to walk this earth without our child, in this new landscape which is continually surprising us. We remember our children, and we hold those memories together, with love.

One of our members, Robin (author of the blog Grief & Gratitude), is a wonderful resource - she has read all kinds of books and essays, and frequently shares them with us. I love that quality in her; she's a bit like a personal shopper for good writing on interesting topics. This week, she shared an essay by the writer Brian Doyle - an essay about two of the women who died in the shooting at Sandy Hook Elementary (there is a link to article in The Sun Magazine at the top of this post).

The entire essay is brief and beautiful, but the last paragraph in particular struck a chord in me:

"The next time someone says the word hero to you, you say this: There once were two women. One was named Dawn, and the other was named Mary. They both had two daughters. They both loved to kneel down to care for small beings. They leapt from their chairs and ran right at the boy with the rifle, and if we ever forget their names, if we ever forget the wind in that hallway, if we ever forget what they did, if we ever forget that there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children, if we ever forget that all children are our children, then we are fools who have allowed memory to be murdered too, and what good are we then? What good are we then?"

As I prepare to attend the Ben Towne Foundation's annual BENefit this weekend, I look forward to gathering with parents, researchers, oncologists, hospital staff who treated Katie, family and friends who know firsthand that "there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children..."

I will be grateful to be in such company. We will hear stories of the progress made this year, progress in research and the treatment of cancer through T-Cell therapy at Seattle Children's Research Institute's Jensen Lab (the first patient is in remission!). I will join hands with others who are snarling at death - at cancer - and together, we will run roaring at it to defend our children - all children - because, in fact, they are all our children. 

If you'd like to learn more or find a way to get involved, follow the links to the Ben Towne Foundation and Jensen Lab.

September (GOLD) News

One of my favorite bloggers, Stephanie Nielson of "The NieNie Dialogues" and author of "Heaven is Here" has posted about Childhood Cancer. In that same posting, she has generously endorsed my book, "Because of Katie." Thank you, Stephanie!

Stephanie (also known by her readers as NieNie) survived an airplane crash which caused burns over more than 80% of her body. She writes a joyful, funny, sweet and real blog about her life as the mother of five children, spanning the years before and after the accident. The crash happened on the one-year anniversary of Katie's passing, so the date was very significant to me. Stephanie's journey - physical, emotional and spiritual - back from death continues to inspire me and thousands of others.

In case you didn't know, September is Pediatric Cancer Awareness Month (think "gold ribbon" when you see the pink one for breast cancer awareness). Many of our friends and acquaintances know about childhood cancer, and are committed to supporting research for better cures and treatments plans. They have started foundations, non-profit organizations, organized fundraisers, written articles, lobbied Congress, volunteered at camps and spoken freely about what they know - and what they wish they didn't know.

Clearly, it is neither wise nor acceptable to poison people - particularly sick people, especially growing children - in an attempt to cure them. But traditional chemotherapy and radiation are poison, and often lead to physical impairments like hearing loss, heart trouble and - if you can imagine the horror - secondary cancers. So a child who is cured in his youth may be diagnosed with a new cancer (not a relapse of the original disease, but an entirely new cancer) when he is older. After enduring the worst kind of sickness, this is cruel and unusual punishment.

We founded the Katie Gerstenberger Endowment for Cancer Research when Katie was in hospice care. She wanted us to direct the funds to cure cancers like the one she had (adrenocortical carcinoma). While childhood cancer is rare, adrenocortical carcinoma is extremely uncommon among that rarity, so we expanded the purpose of her endowment beyond that one form of the disease. To date, Katie's endowment is funded with nearly $193,000, and contributed $6,963 in this past year to the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. We are grateful to our family and friends who have helped to build this fund, as well as moved and relieved to see progress in the treatment and cure of cancer in these six short years since Katie passed away. With awareness, inspiration and financial support, it will come even faster - to children and adults who suffer from the many forms of cancer, and to those who suffer from the horrific, medieval torture-chamber-variety of treatments that have been all that is available to offer them, up until now.

To see the killer of my daughter (cancer) being brought to justice (wiped out) is profoundly gratifying to me mentally, emotionally and viscerally. If you are interested in joining this effort, please follow the links in the text in this posting to find out more.

To Dr. Michael Jensen and his colleagues at the Ben Towne Center for Childhood Cancer Research, to Carin and Jeff Towne (and everyone at the Ben Towne Foundation), to all who work tirelessly to make a better world for the sick, and for those who love them: you have my heartfelt thanks. And to Stephanie Nielson: thank you for caring about all of us who are touched by childhood cancer, and for using your blog to bless your readers!

October 10 - Year 1

This is the day, one year ago, that we went to Children's Hospital in Seattle through the Emergency Room entrance, and stayed. We were terrified. We were questioned for hours, by many teams of doctors. We waited. We tried to help Katie relax. We called our parents.

Thank goodness that she had the foresight to bring her favorite cozy blanket with her, the one that I made (I am not a good seamstress) with Rita's help. That blanket went everywhere with her, the entire time she was in the hospital, to every scan, procedure, room change and appointment, as a shawl, a cover, a cloak, a mask & an air filter. It is now on our bed. She was funny about it: there was a "right" side and a "wrong" side, an "up" side and a "down" side. I am the only one who understood this. And I keep it the way she liked it, on my bed. She would never let me mend it. It has some holes in it, and it is wearing thin, but I was not allowed to sew it up. I was allowed to wash it, as long as it was back with her by the end of the day.

It would be hard to describe the quality of our fear. I could tell you about it in several ways, but the one that comes to mind is this: at this hospital, with the combined resources of the University of Washington Medical Center, the Fred Hutchinson Cancer Research Center, and Children's Hospital's own renowned doctors, we were told, "We never see this." "In 25 years, I have never seen this." "This is very rare in adults, and even more rare in children." "It is inoperable, and it is not chemo-responsive." Here we had a perfectly healthy child, who just happened to slow down and have a slight fever, on and off for 3 weeks, and --WHAMMO!-- it is revealed that she has a tumor extending throughout her abdomen. One, huge, invasive tumor, and it has entered her heart.

So on this day, this year, I need to stop and say, oh, how I recall the awful feelings of that day. So much has happened since then. The world has become a darker place, for me, yet I learned & saw many important things along the way. The worst thing I learned, at least as I see it today, is that you can work as hard as you know how to work, with all of the experts and expertise available, with the best of intentions, surrounded by good will in amounts that you never dreamed possible, with a love so great that it's hard to believe it flows through one human heart, and you may still have to watch your child suffer and die. That is why the world looks so different to me now; that, and the fact that the light of one lovely, feisty, gorgeous, hilarious, spritely, creative 12-year-old girl is no longer with me in this place.

A Hard Time of Year

We are heading into a difficult season, for me. It's early October, the time when Katie was first admitted to the hospital, one year ago.

Last year at this time, Katie was sick with what we (and her doctor) thought was a virus. Mono was going around our area, and her symptoms resembled mono symptoms, except that she tested negative for it, twice. She was weak and tired, and had dark circles under her eyes. She slept alot. I kept her home from school due to her lack of energy and her low-grade fever. I took her to the doctor for blood tests and other tests. This went on for 3 weeks. We did the online homework drill, with me going back and forth to her school for books, and to turn in the homework that she was able to do.

Finally, we noticed a slight swelling in her zyphoid process (sternum area), and the doctor ordered an ultrasound. Beginning of nightmare...October 9th, 2006. I got a call from our doctor that same day, after the ultrasound results came in, telling me that there was a large growth in Katie's abdomen, around her kidney and heading up towards her heart. I found it hard to breathe. I told the doctor, "You have to stop talking." I set the phone down on the kitchen table, and lay my head down as I tried to breathe. After a few moments, I told her she could continue. I was told to get Katie to a CT scan, that afternoon.

Wouldn't you know it, that day David had a friend over. We got in touch with his mom, and she came to take him home. I called Gregg & told him to come home as soon as possible. I called my mom and asked her to accompany us to the CT scan. I took Katie and my mom and we went for her first-ever CT. After the scan, Grandma bought Katie a stuffed animal at the hospital's gift shop, and we took her out to her favorite restaurant for dinner; her choice: a cheeseburger and fries. Then we went home, and the next blow fell. The CT revealed more of the tumor, and we were to go to Children's Hospital in Seattle first thing in the morning, as soon as we could get copies of the CT in our hands.

On October 10th, we entered via the emergency room, and the nightmare began to unfold before our unbelieving eyes. Katie was tested, questioned, and examined for hours, and finally, admitted to the Hematology-Oncology floor (affectionately known as SCCA, the Seattle Cancer Care Alliance).

Let me just say here that the feeling we had over and over, and still have is: there must be some mistake. We don't HAVE cancer in our family. To this day, I think: maybe I was hit by a truck, and I am in a hospital somewhere, out of my mind, and dreaming this. I wish it were so, instead of what is instead true: this cancer took 10 months to kill Katie. We tried to shrink it, kill it, have it cut out, and again to keep it at bay with drugs. But no, it was going to do its thing in her body.

At first, I felt as if a rapist had got into my house and into my daughter. I just felt that she had been violated by a silent, unseen assailant. How DARE this thing sneak in like that? Where were the signs? Where were the symptoms, when it was tiny enough to fix it? Why not a peep, not a bump, not a bulge, not a blood marker, until it was encasing her adrenal gland, kidney, in a lobe of her liver, filling her inferior vena cava and IN her HEART? I was filled with rage, and terrified.

So now, one year after her diagnosis (and nearly 2 months after her passing), I'm having some bad memories, flashbacks, of this time last year. Remembering fear, trauma, the desire to protect my girl from something completely out of the blue, out of my control; I've got some simmering anger about it, too. It is what it is, and there it is, today.