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Katie’s Story

On Oct. 10, 2006, Katie was admitted to Children's Hospital, after 3 weeks of sick days & doctor visits, with what looked like a virus (low-grade fever, extreme fatigue). She was diagnosed with a neuroblastoma tumor in her abdomen and heart. Later, the diagnosis was revised to undifferentiated carcinoma, and finally to adrenocortical carcinoma.



 

Pathology (electron microscope) led to new diagnosis; experts at St. Jude's Hospital were consulted. Chemo regimen was changed to address carcinoma.

In January, after 5 rounds of chemo, we went home to rest before Katie's surgery  (Feb. 21-22, 2007). Drs. Waldhausen & Cohen were able to successfully remove the entire tumor, which had started on the adrenal gland, encased one of Katie's kidneys, filled her inferior vena cava and entered a lobe of her liver & her heart. It took 18 hrs. to remove the tumor; it was adrenocortical carcinoma. Thanks to Puget Sound Blood Bank & donors for the gift of life Katie received (70 units) during surgery!

Katie spent 3 weeks in CICU, recuperating (the incision couldn't be closed for 2 wks). She then moved to the surgery ward, & spent 3 more weeks getting stronger. On 4/1/07, we were allowed to go home for good!

In early May, Katie's PET scan showed a bit of cancer in her upper back (nothing emergent). Scans were scheduled every 3 months (it was called a slow-growing cancer).

In June, the kids went to Camp Goodtimes, & were starting summer activities when Katie began to have pain in her lower back & legs. She had massage & physical therapy, but the pain increased in strength and frequency.

CT scan revealed a new tumor, spread to Katie’s bones, spinal cord & liver. Dr. Park said there was nothing they could do to get Katie into remission. Hospice was called, mitotane (oral chemo) stopped, & we were given medicines to keep Katie comfortable. We went home to try to accept the news that she was going to pass away.

Katie had about two weeks of increasing weakness. During this time, she & David were attendants in their cousin's wedding. A week after the wedding, Katie lost the ability to move her legs. One week after that, August 16th, she passed away peacefully, with Gregg, David & me at her side.

Please accept our thanks for your love, prayers & support. We appreciate every one of you.

Love & blessings,

Karen, Gregg & David

www.karengberger.blogspot.com

Latest Journal Update

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Happy May Day!

"Because of Katie," the story of Katie's journey (and ours with her) is now available in Kindle format, in addition to paperback. You can find it on createspace.com, amazon.com, in your local bookstore and on my blog.

I had a thrilling evening of reading aloud and signing copies of the book, sponsored by our local Liberty Bay Bookstore at the Loft Restaurant in Poulsbo (see the photo), and have since been busy, sending out postcards about the book to all of the nursing schools in the country. When I finish with that list, I will start on the list of teaching hospitals.

In case you missed it, "Because of Katie" is
the true story of our family's 10-month journey with our 11-year old
daughter through her cancer diagnosis, treatment, surgery, recovery, remission,
relapse and beyond. I wrote it specifically with medical personnel in mind, to
help staff to understand what this experience is really like, from the patient's and family's perspective.

The American health care system is
in need of reform. One of the best reasons to read this book is to learn from a
first-hand account, across many medical disciplines, how a top-rated hospital
treats its patients (and patients' families). This book will give you concrete
examples of family-centered, effective care, and will teach using practical,
usable nuggets which stand out in a narrative format. The appendices are
particularly important chapters.


During her treatment, Katie was
seen by professionals in many departments of Seattle Children's Hospital:
Emergency, ICU, Hematology-Oncology, Surgery, Cardiac ICU, Cardiology,
Ultrasound, Audiology, CT and more. She was lovingly cared for by nurses,
doctors, child-life, social
workers, physical therapists, nutritionist, psychiatrists, respiratory
therapists, the access team, volunteers and more. This book explains the impact
that each person has upon patients and other family members.


I hope that you will take a look
at it on amazon.com, read the reviews, search inside the book, and order a copy
for yourself and/or your doctor. It reveals a great deal more than is
available in textbooks.


Blessings to you!