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!

Christmas Thoughts, Year 1

Christmas, 2005

To be honest, I have been a little baffled about why I am happy during this season. I thought that every day would be awful, full of longing and reminders of who and what is missing. The strange thing is that I am enjoying all of the small joys of Advent, and the days leading up to Christmas. I have been wondering why, and I can only think of a couple of things.

Last year at this time, we were suffering terribly. Katie was miserable in between rounds of chemo, and the last rounds were the worst. She needed medication around the clock to help her feel just "okay," and to control nausea, as well as 2-3 injections a day, and was only interested in watching TV and movies. We were all living in one small room at Ronald McDonald House, when she wasn't in the hospital: two queen-sized beds and a window-seat/bed, a table, two chairs, a TV/VCR/DVD player and (thank goodness) our own bathroom. David and I went shopping with my sister, Debbie to buy a wreath and 2 small (fake) trees, lights and decorations that the kids could make their own, and place on the windowsill of our room. Katie wasn't interested enough to finish hers. She skipped all of the opportunities at RMcD House to join in festivities, such as making gingerbread houses, caroling, a photo session with Santa or taking a holiday cruise. She just felt too awful. If you have ever loved someone who is suffering, you know that all who love and care for her suffer with her; that is compassion. It was a really hard time for all of us, especially since Katie and David LOVE Christmas.

The week of Christmas itself, Katie was an inpatient finishing a 5-day round of chemo; she spent Christmas Eve and Christmas morning in the hospital. I was with her, while Gregg stayed at Ronald McDonald House and visited us daily. We encouraged David to go home and spend Christmas with Uncle Charlie and Auntie Cheri, and to be with his grandparents, aunts, uncles and cousins. The Gerstenbergers really know how to celebrate Christmas, and we wanted David to be surrounded by that familiar love and joy. He did go, and he had a great time, but it was hard on all of us to be separated.

This year, we have enjoyed being in our own home, going to choose, cut and decorate a real tree again, hanging lights, making treats with Taylor, and (for me), spending quiet time praying with the Advent devotional readings. I love Advent; having been brought up as a Christian Scientist, I didn't know about Advent, and it was a revelation and a joy to me. The light and anticipation that are intrinsic to the season are helping me to deal with the darkness of the days and the strangeness of experiencing our first Christmas without Katie. Last year she was with us in body, but not in spirit, because she was suffering so much. This year, she is not with us in body, and I assume that she is not suffering any more; I feel she is free, and that is what I pray for her. I do not say "I know," because I cannot KNOW; I can hope and pray and feel, and that is going to have to be enough, for now. So I am thankful and joyful for what I have, and I will continue to love my girl with all of my heart. I wish she were here with us, enjoying Christmas, wearing her Santa hat with David...but she is not.

I found this poem in Elisabeth Kubler-Ross's book, On Death and Dying:

In desperate hope I go and search for her in all the corners of my room; I find
her not.
My house is small and what once has gone from it can never be
regained.
But infinite is thy mansion, my lord, and seeking her I have come
to thy door.
I stand under the golden canopy of thine evening sky and I lift
my eager eyes to thy face.
I have come to the brink of eternity from which
nothing can vanish--no hope, no happiness, no vision of a face seen through
tears.
Oh, dip my emptied life into that ocean, plunge it into the deepest
fullness. Let me for once feel that lost sweet touch in the allness of the
universe. - TAGORE, from Gitanjali

Tofino, BC, about a week after Katie's Celebration of Life

Grief Help

We were introduced to a website called www.caringbridge.org when Katie was first in the hospital. It is a wonderful way to stay in touch with the world when you are facing a serious problem. David set up Katie's page for her, but she decided not to be involved with it. I used it to communicate with the outside world, since Katie decreed that medical details not be discussed in front of her. That ruled out using the phone, and she disliked having visitors as time went on, so the website became a sort of lifeline for me with our community.

I have learned a lot from reading other people's caringbridge pages, and I came across a new one recently. This young lady had just passed away, and her mother posted the following advice on dealing with grieving friends/family; it is extremely valuable.

From Taylor Baum’s caringbridge page:We have a choice. We can be bitter and resentful to others or we can help them understand and be part of our grief journey. What follows are what I call "10 Grief Lessons for Others." By sharing these lessons with those close to you, a new level of understanding between you and others can help you down that long difficult road to recovery.

1. BE THERE FOR ME.
If you are my friend, reach out, talk to me, hold my hand, hug me. Know that even though we may say we are all right, we will never be all right again.

2. WE ARE DIFFERENT.
Understand that what has happened will change us forever and if you are my friend, you will accept me for what I have become, for who I am now, a person with different goals and different priorities. What was once important to me may no longer have any meaning.

3. BE A GOOD LISTENER.
We want above all else to talk about our loved one. To us, they will always be alive in our hearts, and we don't want others to forget them either. Don't be afraid to mention their names in our conversations. They were real people at one time, even though they are no longer with us. They had hopes and dreams we'd still like to share with others. Please don't pretend they never existed.

4. NO ONE ELSE KNOWS HOW I FEEL.
We all grieve differently. Please don't tell me you know how I feel. You don't. Rather than asking me, "How are you feeling?" ask me "What are you feeling?" I can probably give you a more honest answer.

5. I MAY GRIEVE FOR A VERY LONG TIME.
There is no set time limit to my grief. It may take me two years; it may take me five years. I have to do what is comfortable for me. Be patient. I will do the best I can in whatever amount of time it takes.

6. KEEP IN TOUCH.
Call me once in a while. I promise to do the same. Invite me to lunch or to a movie. I will eventually go, because I will eventually feel better. Don't give up on me and don't forget me. I am trying to do the best I can right now.

7. I MAY CRY AT TIMES IN FRONT OF YOU.
Please don't be embarrassed, and I won't be either. Besides being a natural emotion, crying is also a cleansing emotion. By crying I can relieve a lot of anger, frustration, guilt and stress. And best of all, I feel much better after a good cry.

8. I PUT A MASK ON FOR THE PUBLIC.
Don't assume just because I am functioning during the day that I am "over it." I will never get "over it." I try to function normally because I have no other choice. You should see me when the day is over, and I am in the privacy of my own home and free to let my emotions out. My day mask comes off and I am just a mother, aching for her child.

9. SOME DAYS MAY BE OVERWHELMING.
The slightest thing can trigger a bad time. It can be a song, a place I go, a holiday, a wedding or even smells or sounds. If I break down and start crying or seem to be in another world, it is because I am thinking of my loved one and longing for what I will never have again. I may need to try different things before I find what will be right for me in my new life. Encourage me to reach for the stars.

10. LET ME DO WHATEVER MAKES ME HAPPY.
We will never forget our loved one. The pain never leaves. It just softens a little with time. We eventually function again, feel hope again, find joy in our lives. It is a long road that we travel, but with the help of friends and relatives who understand a little of how we feel and what we are going through, perhaps that road will lead to new paths to enrich our lives in new ways we never dreamed were possible.

Another resource which was brought to my attention by a staff member of Seattle Children's Hospital is http://www.griefhaven.org/
This is a sort of clearinghouse of information for bereaved parents; it is a website started by a bereaved mother, Susan Whitmore. Check out their newsletter archives, if you are looking for some writing by people who understand.

A Quilt for Comfort

Today, Maribeth came over, and we sewed our first prototype quilt for Children's Hospital. Let me explain the project...

Katie had a quilt (mentioned in an earlier blog posting) which she took with her to the hospital, by grace. I think I also mentioned that I am very much a BEGINNING seamstress, yet I had made that particular quilt, with help from Rita, who is an ADVANCED seamstress (among her many other talents). It was very well-loved, all the way to the day Katie passed away. She took it everywhere she went during her illness, to every scan, procedure and appointment. She slept with it. I have been sleeping with it myself, since she passed away. This is a photo of it, folded so that you can see both sides. It is soft as a whisper, threadbare in places, torn open in others from wear, use, love, service. It has satin binding and is flannel on one side, with cotton quilt fabric on the other. The colors (primarily yellows) coordinate well. The quilt fabric has different state flowers on it. When we were really bored, sometimes we would study those. I am so grateful to be the person whose hands made a gift that gave Katie comfort every single day.

Since Katie got so much comfort from that blanket, I was thinking how good it might be to make them for other kids...particularly those who may end up at the hospital in shock, like we did. If you had to go to the hospital suddenly, possibly far away from home, would it be nice to find a soft, thick, warm, handmade blanket at the end of your unfamiliar bed? I think it might. I spoke to several friends who sew, and everyone agreed.

Maribeth is one of those friends. MB is a cancer survivor herself. Whenever she would sing a solo in church, I would sit in a pew, listening and crying, because I was so happy that she survived. She is one of the first people I called the day that Katie's tumor was discovered. She has been a rock for me throughout this whole nightmare, one of the people I can bare my deepest feelings to, complain, laugh, be appropriate or inappropriate with, dark or light...and know that whatever is, is okay. She and I (and Katie) share a similar sense of humor, and she NEVER patronizes. She loved Katie dearly, and they had quite the bantering relationship over the years.

MB's daughter, Taylor, was one of Katie's teenage role models. We call her "da bomb," because she is so pretty, talented and sweet. Katie and I would always go to see MB and Taylor perform in local musical theatre productions. Katie loved watching her friends on stage, and they inspired her to try the BPA Theatre School, which she loved very much.

When Katie was sick, she and Taylor spent many hours watching their favorite movies, sitting on the couch or on Katie's bed, relaxing together. Katie could just be silent with Tay, and they could do nothing, very happily together. Taylor was a great comfort to Katie, and brought joy to her last weeks. She was one of the few people who were always welcome in Katie's room.

Taylor decided to take on the quilts as her Senior Project in high school. She is going to assemble simple quilt kits for people to purchase; the proceeds will go to Children's Hospital, and the blankets can be sewed from the kits, and donated to the Hospital, if the buyer wishes.

So today, MB and I tried our hands at sewing a prototype, since we need one to show to family and friends who will want to buy the kits. It is flannel on one side, and cotton quilt fabric on the other, with satin binding, like Katie's. It turned out well, and it was really fun to work on it together. I can see this becoming a good thing; it's therapeutic, and a good time to chat, while accomplishing something worthwhile. As the project gets underway, I will post more info.