Dad Runs Marathon In Honor Of 6-Year-Old Daughter Battling Rare Disease

Dad Runs Marathon In Honor Of 6-Year-Old Daughter Battling Rare Disease
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As we sat in the emergency room late one night last September, I kept thinking back to all of the ways in which our oldest daughter Audrey, 6, hadn't been herself lately. In the weeks leading up to that night she had become frail, she had lost her color and she had complained about always finishing last while racing around the playground with her classmates. When the doctor finally came in we found out why -- Audrey had a baseball sized tumor in her right lung. We were devastated. The doctor explained to us that she had a long road ahead of her, beginning with a very invasive surgery to remove the tumor, and followed by some type of treatment plan.

After a seven-hour surgery that left a nine inch scar on her back, Audrey began to quickly recover. Our excitement over her recovery was exceeded only by the news we received from her oncologist informing us that no further treatment would be necessary. We were jubilant. He explained to us that the tumor had been diagnosed as an Inflammatory Miofibroblastic Tumor (IMT), a rare tumor which rarely spread to other parts of the body and had a low rate of reoccurrence. In essence, the nightmare that had overtaken our lives in those weeks was over, or so we thought.

Just after Thanksgiving, Audrey began showing some of the same symptoms that had preceded the discovery of her tumor. We soon found ourselves back at the hospital where our oncologist informed us that the tumor had, in just a few short weeks, re-grown back to its original size. Our nightmare had returned and we weren't sure what to do. Our doctors were doing so much to try and help, but this was the first case of IMT they had ever seen at the hospital. We were looking for answers, a plan, anything that would lift this burden off of us and our brave little girl. Those answers came when we were referred by our doctors to St. Jude Children's Research Hospital in Memphis, Tenn.

As a parent, the one thing you are looking for when you are in a situation like this is for someone to come alongside of you and give you all the confidence in the world that they will do everything they can to fix your child. From the moment we stepped into St. Jude that is exactly what we found. We were assigned world-class doctors -- leaders in their field who looked us right in the eye and said "I will care for your child as if she were my own." Furthermore, they had the resources to make it happen.

After a battery of tests, the doctors confirmed that the second tumor was IMT. They explained to us they had access to a new drug, an oral chemotherapy agent that had been showing incredible results in adults with similar tumors. To our great relief this drug, unlike most chemo treatments, had very few side effects and our daughter would be able to continue with her schooling and remain highly functional throughout the treatment.

Our relationship with St. Jude began in the middle of December. In the few, short months that have followed, this incredible drug has reduced Audrey's tumor to less than a quarter of its original size. She is full of life and looks as beautiful as I have ever seen her. As you can imagine we owe quite a debt of gratitude to St. Jude. One of the first things they share with you when you walk through their doors is that you will never receive a bill from them. You see, not only are they healing our daughter, they are doing it at no cost to us. That's why when I saw an opportunity to give back, I wanted to take it.

On Saturday, April 28, I will be competing in the St. Jude Country Music Marathon in Nashville, Tenn. We've been able to use Audrey's story and our amazing support system of friends and family to raise funds as a St. Jude Hero. While this is a small amount in comparison to what they have done for us, it is important that we share our story with as many people as we can and do our part to give back.

Oh, and one last thing. I won't be the only one racing that weekend. Audrey, who only a few months ago struggled to make it across the playground, will be participating with nearly 5,000 other kids as they complete a one mile run as part of the ING KiDS ROCK race. She's so excited to run, and so are we, knowing how far she has come since September. Thank you, St. Jude!

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