Tuesday, February 28, 2012

Because of Katie (Book Review)

Katie Gerstenberger died at twelve from a particularly vicious form of cancer (I know; is there any other kind?) that moved with speed and in silence to strangle her internal organs before offering only the subtlest hints of its presence.  

I don't remember how I "met" Katie's mother Karen.  It happened sometime during that fog of the first couple of years after Josh's death, when I was searching for  . . .  well, I have no idea what I was searching for online, but among my discoveries were other mothers, other women whose lives had been transported to that other place where children die.  I suppose we all live in a Madeleine L'Engle novel, and not a very good one at that.

At some point, four of us connected in a particular way, and spent months together writing our way through a "retreat" with Joyce Rupp's book, Open the Door.  By that time, our children had been gone for awhile, and we had each reached a point at which we wanted to re-engage with the rest of the world.  Of the four of us, three had young adult children who had died suddenly, without warning: an unknown complication of an illness stalked a young man in the night, a rogue wave pulled a young woman out to sea, and depression claimed another young man, in the form of suicide.  Katie was by far the youngest of our children, and the only one to die after a lengthy illness.

Because of Katie chronicles the Gerstenberger family's experience with that illness, from the first hint that Katie was not bouncing back from what seemed to be some sort of childhood virus, through the terrifying testing and diagnosis, through the family move to the hospital, through Katie's return to home and hospice care, through her death.  Throughout the book, Karen offers commentary and suggestions that should be helpful to families and medical caregivers alike.  

I think that the book may prove particularly helpful to parents and older siblings caught in the same maelstrom of illness and procedures.  Karen describes the alarming disorientation of being sucked into the world of children's cancer and hospital life; in particular, the loss of privacy and the sudden appearance of an entire phalanx of personnel in her family's life, each representing a profession and set of responsibilities previously unknown to Katie's family.  Seattle Children's Hospital clearly represents a model of family centered care at its best.  The family is involved in every decision; parents are able to be present for every procedure.  School and tutoring options are available for patients and siblings alike ~ a semblance of normalcy and activity for those who as a family move far from home to access care for a child.  And yet . . .  some interactions go poorly.  And parents sometimes have to travel several floors to use the bathroom or take a shower!

Since the beginning of my breast cancer experience, I have realized anew how important it is to have a guide (or several) whose perspective mirrors your own.  I have learned a great deal about breast cancer from the doctors and nurses, of course, but none of them have provided much in the way of guidance about daily life and comfort.  That has all come from other women: from their books and phone calls and emails and blogs and, in the case of a couple of friends who are nurses, from their generous arrival on my doorstep to help with home care.  In the shocking world of children's cancer care, Karen Gerstenberger is such a guide.

No one would envy a mother whose child has died, but I think that in our little group of conversing mothers, the rest of us have envied Karen her time to care for Katie and to say good-bye.  What shines through this book, and is of far more importance than the medical detail (although I know that parents in similar situations will cling to that, and rightly so), is the closeness of the Gerstenberger family, a closeness forged in honesty and love as Katie's prognosis worsens.  Probably many of us have experienced that awful silence and isolation that accompanies serious illness and death; family and friends vanish into thin air, put off by the vehemence of our reactions, frightened by the physical realities, and afraid of doing or saying the wrong thing.  Karen's forthright approach to her daughter's final months will perhaps ease the way for others to know how to offer companionship to those in trouble.  And her honesty and compassion certainly serve as a model for other parents called to wade in these particularly deep waters alongside a beloved child.


  1. What an excellent book review! I can see how this would be helpful to anyone with a child in that situation. Thank you for the thoughtful words you shared.

  2. Dear Robin, thank you so much for your thoughtful, thorough, positive review of my book. As you know, I pray that it will bless each person who reads it, and I hope that it blessed you, particularly in the midst of your own walk through what can feel like the "medical maze." I would love to see the book used as a teaching tool to help doctors communicate more clearly and compassionately, and to help them face their own feelings about serious illness, so that they can better help patients and family members to face ours.

    Our little group of bereaved mothers has helped me so much to write my way through the emotions, as well as providing excellent company in which to explore the spiritual ramifications of my grief - of all of our grief. I'm deeply thankful to God to have introduced us - such online sharing & fellowship was not possible even 10 years ago!

    Your writing style is so clear and incisive that I could "see" you in court. I could hear your summary argument, and I am deeply impressed. So we are now looking forward to YOUR book, in its time.

    With loving gratitude for the gift of your friendship.

  3. What a wonderful reading and review of this fantastic book. I am so grateful that Karen has such beautiful friends -- both virtual and "real life" --

  4. I echo Elizabeth's comment.
    And send a virtual hug to you Robin, for the loss of your son.

  5. Mary R., Poulsbo WAMarch 13, 2012 at 2:59 PM

    Dear Robin, Thank you for this wonderful book review. I can't wait to get my own copy of Karen's book. I am inspired to share it with my daughter who is currently practicing music therapy in a cleveland hospital often tending to the needs of terminally ill patients. She has found she can help both the patient and the parents/family with her music and education. I bet this book will help her and the hospital staff as well. Robin, I'm so very sorry for your loss and your own health battles. I am praying for you.

  6. Thank you, Mary. I hope your daughter enjoys the book. It's kind of like having a sister share the inside story with you.