Joanna Burgess’ Shocking Diagnosis of Childhood Bladder Cancer

Joanna played "hospital" as a child and the interest in helping others never left her.

Joanna played “hospital” as a child and the interest in helping others never left her.

Editor’s Note: This is the story of Joanna Burgess’s amazing and inspirational life.  Joanna originally submitted the following story to be published in a major national magazine, but the magazine elected not to publish it, however their loss is our gain.  Joanna Burgess is a nurse, a cancer survivor, a wife and the 2011 Great Comebacks® South Region Award Recipient and you can find out more about Joanna Burgess by clicking here. Part 2 of a 5 part series – originally published on the Courage to Shine website.

In December of 1965, after I had just turned three, my mother started noticing blood in my urine.  A trip to our local family doctor would change all of our lives. My parents were told that I had a very rare form of bladder cancer with a 10% survival rate. I can only imagine what my parents must have felt hearing that collection of words. (I would learn later in life after obtaining my medical records that the cancer had a name – rhabdomyosarcoma, meaning a fast growing highly malignant tumor of the soft tissues).

My father was a young new minister in upstate NY and my mother was a kindergarten teacher at a local school.  They had no medical background and had never faced a medical crisis. My parents were asked to place the trust of my life into the hands of the medical professionals. They had no other options.  My father would later tell me that handing your child over to the unknown rocks the foundation of your world. They had to make the choice to agree with decisions made by my medical team that would affect my life in known and unknown ways.

Joanna having fun at the beach as a young girl.

Joanna having fun at the beach as a young girl.

Feeling broken and torn, my father went to a small chapel and screamed to God, pleading that my life be saved.  At Boston Children’s Hospital, in the ward where my crib-like bed was, I would sense that same anguish again and again from the parents of other children, children with cancer, burns, and other life altering physical traumas. Instead of screams, they were whispered prayers in the night over sleeping children. I believe that I absorbed the energy of those thoughts and feelings, from parent to child and child to parent, into my subconscious ultimately shaping the person that I would become.

Boston Children’s Hospital was a four hour drive from my home in upstate New York.  My cancer therapy included investigational chemotherapy sponsored by a private organization affiliated with the hospital and high doses of cobalt radiation which caused third degree burns on my lower back.  Treatment also included the removal of my bladder and the creation of a urostomy, a way to divert urine by connecting the uretersto a conduit made out of the small bowel which is then brought to the outside of the abdomen through a surgically created opening called a stoma. A bag is worn over the stoma to collect the urine.

People ask about my memories of that time.  I tell them that I mainly remember the “fun” things about having cancer.  I would spend countless hours in the “go-carts,” a special kind of wheel chair designed for wheeling the children around the hospital corridors and grounds. My father would wheel me up and down the long hallways and sing to me with his deep booming minister’s voice, “Train to the farm, chugga chugga choo choo.”  There were mountains of cards from my church that my parents would read to me and I remember my sister bringing me a cherished gift of one of her beloved dolls.

The treatments had many side effects that would continue to manifest for years.  My father became the primary caretaker of my ostomy and radiation burns.  When my burns were at their most severe state, he would have to sleep by my side at night to make sure I didn’t roll over and disturb the bandages. Later, in my growth years, I experienced bone pain, and difficulties with my colon causing many “stomach aches” and trips to the emergency room.

For each of these events my father would end up reliving the pain of the day he learned of my cancer diagnosis. In a very real sense, he became a wounded warrior.  His devotion to the care of my physical wounds was courageous but it truly left him heartbroken to see the pain I endured. To this day it is still a very raw experience for him. Even now, on the brink of turning 80, he still cannot talk about this experience without crying.  He has told me that he has never fully recovered from his own emotional wounds from my cancer therapy, and that he really does not want to, for those wounds are an integral part of him. They have shaped him into the person that he wants to be, a sensitive father, husband and caretaker of the people that reach out to him in his community.

Next: Joanna Burgess Discovers Her Love For Nursing

© Copyright 2012 Joanna J. Burgess

Addition links of Joanna Burgess to view:

2011 Great Comebacks® South Region Award Recipient and you can find out more about Great Comebacks® and Joanna Burgess at  http://www.greatcomebacks.com/us/stories/Joanna-Burgess.shtml

Sarcoma Alliance Cares for Children and Young Adults – News Release about Joanna Burgess: http://www.prweb.com/releases/2011/9/prweb8834724.htm

If you would like to contact Joanna Burgess please do so by sending her an e-mail to contact@courage-to-shine.org and we will forward it to Joanna.

About UroMed Catheters
Headquartered in Suwanee, GA [a suburb of Atlanta], UroMed is one of the nation’s leading providers of single-use catheters, urological and disposable medical supplies, including intermittent catheters, closed system catheters, condom catheters, pediatric catheters and continence care products. UroMed is nationally accredited for Medicare reimbursement and most state Medicaid plans, and partners with private health insurance providers and health plans to provide patients with single-use catheters, catheter kits and incontinence products. UroMed also has seven staffed regional offices located in Boston, MA; Columbia, SC; Jacksonville, FL; Dallas, TX; Carlsbad, CA; Knoxville, TN; Richmond, VA; and Baton Rouge, LA; enabling next-day delivery after a customer’s initial medical supply order. For more information, please visit http://www.uromed.com or call 1-800-841-1233.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: