Photo Credit: Courtesy of Andrea Verdone
On August 16, 2012, my family’s world was turned upside down. That was the day I was told that my three-year-old daughter Natalie Grace has Acute Lymphoblastic Leukemia (ALL). Cancer.
Natalie's first month of treatment was a blur. I couldn't get past the fact that cancer had entered our household via my beautiful, sweet, innocent little girl. This had to be a mistake, right? I mean, we had family photos taken in the park just two days prior to her diagnosis. The month before that, we were enjoying our annual Jersey shore vacation.
When my husband Dan initially took Natalie to the pediatrician he was told that she simply had a "summer virus." How did that become cancer only days later? These are all questions I eventually had to stop asking myself since, unfortunately, there truly are no good answers.
Let me take you back to the day -- August 16th -- when we were introduced to our “new normal.” In just a matter of hours I had gone from photography editor in the fast-paced environment of the magazine industry, to mom-oncologist in the even more accelerated domain of a hospital. The day after Natalie’s diagnosis, Dan and I sat in a small room with Natalie’s main oncologist, her R.N. and a child-life specialist where the lesson of our new life had begun. Through tear-filled eyes we had to initial and sign 25 pages of a consent form allowing them to introduce numerous toxic chemo drugs into her tiny, fragile body. Additionally, this is when they informed us that because of her practically non-existent immune system, Natalie could no longer attend school, and subsequently I would need to put my career on hold (at least for the next ten months). So instead of planning weekend play dates and attending birthday parties, our new life revolved around our very sanitized house and regular clinic and hospital visits.
Although none of this has been easy to cope with (especially for Natalie’s older sister Hannah), we are forever grateful for Natalie’s positive prognosis. From the beginning, the doctors had no doubt that although our road would be long and treacherous, we all would make it out stronger in the end. We’ve certainly had our share of fearful moments including numerous ER runs and hospital stays, but through it all I’ve tried to hold on to their initial positive prognosis. Natalie will survive this, quite simply, because she has to.
Before, I was surrounded by photographers and agents. All of a sudden, I was surrounded by small cancer warriors and the parents who were sharing their battles. I knew we were blessed to know that Natalie would survive, but this didn’t truly hit home until I started meeting some of the amazing children and their families who unfortunately did not share this same comfort. I began meeting parents who had lost children (some less than a year into their wars), and parents who had no end in sight (for good or bad).
Here we are about to “celebrate” that Natalie is entering the maintenance part of her treatment (chemo once a month until November 2014 rather than weekly), and there they still are in a constant state of mourning or fear of mourning.
That’s when I decided that if I have the luxury of knowing that my daughter will survive, then I need to give back by doing everything in my power to honor not only the children who have been taken too soon, but to fight alongside the children who continue to battle for every second of their lives.
When we unwillingly joined club cancer, I was shocked and angry to learn that funding for pediatric oncology research is inadequate, to say the least. In fact, adult cancers continue to get a majority of the National Cancer Institute's (NCI) funding while a mere 4 percent is allocated to pediatric cancer research. And if you assume donating to The Leukemia Lymphoma Society or The American Cancer Society will greatly benefit our children, think again -- they designate even less to our kids!
Here are some facts about pediatric cancer in the U.S. from The Truth 365:
--Each year in the United States, approximately 13,500 children and adolescents 18 and under are diagnosed with cancer. That’s more than a classroom of kids a day! More than 40,000 kids undergo treatment for cancer each year.
--In 20 years, the U.S. Food and Drug Administration has initially approved only one drug for any childhood cancer.
--Cancer is the leading cause of death by disease in children and adolescents, and in the U.S. alone, seven children die every day of cancer, the average age being eight years old.
--Incidence of invasive pediatric cancers is up 29 percent in the past 20 years, yet funding for pediatric cancer is down.
Due to Natalie’s recent diagnosis, her third birthday kind of sucked, so I’ve decided that her fourth birthday celebration needs to be epic. I’m not talking about some grand party (though we’ll be doing that as well), I mean epic in a way that we can honor all that Natalie has gone through this past year, everything she still goes through today, and what so many other families go through on a regular basis.
With this in mind, we began to ask people to mail a single dollar to us, with the ultimate goal of raising $50,000 by Natalie’s fourth birthday (September 28th). We're giving 100 percent of the money raised to pediatric cancer research, via The Truth 365, an initiative of the Arms Wide Open Childhood Cancer Foundation that has joined forces with John Maris, the Director of the Center for Childhood Cancer Research at Children’s Hospital of Philadelphia, and his dream team of leading pediatric oncologists from Children’s Hospital, Sloan Kettering Cancer Center, St. Jude Children's Research Hospital and other top research hospitals in the country.
Helped by the power of Facebook, letters and dollar bills have been arriving from all over the world and we’ve already raised $20,000. We still have a long way to go to hit our $50,000 goal but donating a dollar is easy. You can do it on our website: http://www.willyousendusadollar.com.
If you’d rather send a dollar or a letter, mail it to:
P.O. Box 4064
Middletown, NJ 07748
c/o Andrea Verdone Gorsegner of Infinite Love for Natalie Grace
Checks (tax-deductible) are made payable to: Arms Wide Open/The Truth 365