Monday, September 30, 2013

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.

Thursday, September 26, 2013

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.

Monday, September 23, 2013

September (GOLD) News

NEW YORK TIMES BESTSELLER!!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!

Sunday, September 22, 2013

When One Door Closes

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." - Helen Keller

Saturday, September 14, 2013

Compassionate Action Starts with Seeing

"Compassionate action starts with seeing yourself 
when you start to make yourself right and 
when you start to make yourself wrong. 
At that point 
you could just contemplate the fact 
that there is a larger alternative 
to either of those, 
a more tender, 
shaky kind of place 
where you could live." - Pema Chödrön

Monday, September 9, 2013

Gratitude First

 "Happiness is not what makes us grateful. 
It is gratefulness that makes us happy."
- David Steindl-Rast, A Listening Heart

Friday, September 6, 2013

Light, Peace, Presence

"Enveloped in Your Light, may I be a beacon to those in search of Light. 
Sheltered in Your Peace, may I offer shelter to those in need of peace. 
Embraced by Your Presence, so may I be present to others." - Rabbi Rami Shapiro