Joanna’s Story

October 2001  Joanna in the Pumpkin Patch

Our family welcomed our sweet Joanna into this world on April 15, 1999.  Her arrival was an answer to many prayers and we were so thrilled (especially big brother Paul, then six)!  Joanna was a happy, healthy baby who all-too-quickly grew into a beautiful 3 year old with big brown eyes and a cascade of bouncing blonde ringlets.  She had the sweetest, most generous personality and found beauty everywhere. She lived each day with excitement and joy and loved “to celebrate”. She had fun and she brought so much happiness and love into our family.  We “loved her more than anything” and she knew it.

     During the summer of 2002, Joanna started sleeping more and didn’t seem to have her usual abundance of energy. By October, she appeared pale and at times dark circles appeared under her eyes.  She didn’t look healthy, but numerous trips to the pediatrician for varying symptoms turned up nothing. She was treated for a minor bladder infection, but unexplained spikes of fever and increasing bouts of nausea persisted.  In November, we were referred to a gastroenterologist for a range of digestive issues.  Joanna was hospitalized on December 19, 2002 for a complete intestinal blockage.  Nothing could have prepared us for the news that followed.

Easter 2003 - Paul and Joanna Joanna was discharged from the hospital at 8 PM. We came home and immediately dyed Easter eggs!

On Christmas Eve of 2002 at the age of 3½, our beautiful baby girl was diagnosed with Stage IV Alveolar Rhabdomyosarcoma, a pediatric solid tumor with a very poor prognosis. We transferred Joanna to All Children's Hospital in St. Petersburg, FL for further evaluation.  An exceptionally aggressive chemo regimen was suggested followed by radiation therapy. 

     With a battle plan in place, All Children’s Hospital became a “home away from home” for us for approximately 26 days of every month. We grew to love 2 Southwest (“our floor” as Joanna called it). Joanna’s strength and courage through the next 2 years of horrendous chemo side effects and life threatening infections were an inspiration to us all. She never complained through trips to ICU, hundreds of medical procedures, and numerous major surgeries.  She amazed us all! 

     We spent summer 2003 in New York City at Memorial Sloan Kettering Cancer Center where Joanna received extensive radiation therapy and more chemo.  On January 15, 2004, a world-renowned surgeon

April 2004 - Joanna and her friend Michela Joanna chose to have her 5th birthday party at the Tampa Clinic!  Our “Clinic Family” has always meant the world to us!

at Memorial Sloan Kettering, resected what was left of the primary tumor with clear margins and no damage to Joanna's surrounding organs. What a great day it was!  We celebrated as our doctors and nurses came by with hugs and messages of hope. God had sent a miracle!  Joanna's "sick" (her name for the tumor) was gone! 

       Post-surgical chemo and radiation were completed in August 2004, and in September, we moved from Tampa to Georgia to be closer to our families. We enjoyed ten months of a blissful “normal” life and cherished every minute of being together!  During a family vacation to St. Petersburg in July 2005, Joanna developed severe abdominal pain and started vomiting. A couple of days later, our worst nightmare was confirmed by surgery. Joanna had relapsed and the cancer was widespread throughout the abdomen. Though we were devastated, we have thanked God repeatedly for allowing us to be “back home” with Dr. Barbosa at All Children’s when we got the news.

After much soul searching and many questions for Dr. Barbosa and our doctors in New York, we decided that it was time to take our precious daughter home and make the most of the time that we had left with her…AND WE DID!

August 2004 One of the many wedding ceremonies.  Thank God for pictures!  Isn’t she beautiful?

We lived each day to the fullest and packed in as much fun and love as possible! We chased butterflies, caught fireflies, built campfires, played princess, had candlelit “wedding ceremonies”, planned and attended “real” tea parties, read books, ran races, lay in the warm sunshine, danced, and laughed and laughed and talked and talked. Joanna also finally fulfilled her dream of going to “real school” like big brother, Paul. Joanna became a first grader in August 2005 through the homebound program at Bonaire Elementary School. She was so proud of herself, absolutely loved learning, and adored Mrs. Foy

August 2005 Playing on the playground with Daddy.  She was so proud of her hair!

(who was also Paul’s 1^st grade teacher)!

     Our sweet Joanna left this Earth on December 22, 2005 at 1:15 a.m. She appeared to be comfortable and slept peacefully during her last day. She died at home with Mama and Daddy by her side and was her courageous little self up until her last breath. She had assured us much earlier that if she got too tired and too sick to have fun and feel good here, she would go to Heaven and play with her “Gandaddy” and have fun until we joined her.

     Though our hearts are broken, we have so much to be thankful for---so many memories to cherish. We are comforted knowing that we did everything that we could humanly do for our daughter here on Earth. It just wasn't quite enough - God had a different plan. We will forever be truly grateful for the six years we had with our Joanna.  What a beautiful, sweet, strong, courageous child our family was blessed with!

                                   We love you sweet Joanna. We will play again soon! - Mama, Daddy and Paul.