Help make Natalie's birthday wish come true!August 16, 2012. It's 9:30 a.m. and I'm driving across New York City trying to get to my office on 45th and 3rd while dialing my 3-year-old daughter Natalie's pediatrician. Stopped at a red light in Times Square, I see the officer's lights flip on behind me. Crap! I quickly hang up the phone after having left a message. But it's too late. The officer issues me a $200 ticket for being on my phone while driving, and nope, it didn't help when I explained to the officer that my daughter was sick, that I was worried, and I was simply trying to get a hold of her doctor.
Fast forward about four hours and there we are, Natalie and I, sitting in a quiet room in the ER of Hackensack Medical Center, eagerly waiting to find out what the hell is going on. Feeling something wet dripping down my arm, I gently shifted a sleepy Natalie over to my other shoulder ready to wipe off a little drool. To my complete shock and horror it wasn't drool at all, but rather a small stream of blood seeping from Natalie's right eye as well as from her nose. Before I could hit the call button, in walked a small group of people, one of whom was the doctor who had initially examined Natalie upon our arrival. She had tears in her eyes.
When the first person was introduced as the social worker, that was it-I instantly started to feel myself welling up with tears as I held Natalie tighter, asking them, "What is wrong with my baby?" The doctor simply replied, "Your daughter has high-risk acute lymphoblastic leukemia." Cancer.
That moment is one I'll remember for a lifetime.
Now here we are, a little over a year later, and we're one of the fortunate families battling this hideous disease who have the luxury of a cancer-free date: Natalie's is November 2014. Although it has been a difficult year, to say the least-weekly (often times more) clinic visits for chemotherapy, lots of platelet and blood transfusions, and far too many hospital and ER stays-we're through the worst of it, and as of the end of June, Natalie has officially entered the maintenance portion of her treatment. This, in a nutshell, means that in addition to her daily oral chemo medications, she only needs to be in clinic for IV chemotherapy and spinal taps/chemotherapy once a month. So compared to what we were doing, not to mention what some of our other fellow cancer warrior families go through, we are on "vacation" (well, not exactly, but you get what I'm saying).
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Before our journey began, I don't recall knowing anything about childhood cancer. Sure I had seen, and often times cried over, those moving St. Jude's commercials, but aside from that I knew next to nothing. Was it because like many others it didn't affect me directly and therefore I unknowingly threw my blinders on? Or was it because childhood cancer is more or less an unmentionable topic, and therefore rarely discussed? Honestly, maybe it was a little bit of both, because even once I entered this realm, it still took me several months before my eyes were opened, and the pediatric cancer facts were revealed.
For instance, I had no idea that September is childhood cancer awareness month or that our color is gold. I didn't know that every single day in the U.S. alone, 32 children are diagnosed with some form of childhood cancer. I didn't know that childhood cancer is the number one disease killer of children in this country, and that the incidence of invasive pediatric cancers is up 29 percent in the past 20 years.
The most shocking fact of all, the one that should truly be a crime, is that even with the above facts, the National Cancer Institute only allocates 4 percent of its budget to pediatric cancer. Only 4 percent. What is wrong with this picture?
With this newly found education, my blood began to boil and I have vowed to do everything in my capacity to fundraise and advocate for pediatric cancer research and the families in desperate need of both. I'd like to say that I'm fundraising for a cure-well, in the big picture I am. But if there's anything I've learned in the past year, it's practicality, and unfortunately at this time, finding a cure is way too broad of a statement. In fact, I think one of the biggest problems is that people have become numb to hearing it. However, something that is practical and within our reach is to continue funding clinical trials that prove to not only be pieces to what seems to be an endless searching-for-a-cure puzzle, but they help to find better ways of treatment and can save the life of someone who has otherwise been given a grim prognosis.
Enter Natalie's birthday wish. Cancer ruined her third birthday, but it sure as hell won't be touching her fourth. This past April we were thinking ahead and decided to make Natalie's fourth birthday-September 28, 2013-truly momentous by raising $50,000 for pediatric cancer research via The Truth 365's "Dream Team" of leading pediatric oncologists (The Truth 365 is an initiative of the Arms Wide Open Childhood Cancer Foundation.)
On Natalie's Facebook page, Infinite Love for Natalie Grace, I uploaded a photo of Natalie and myself holding a sign asking one simple request: "Will you send us a dollar for pediatric cancer?" Being it was almost the start of May, I thought that raising the $50,000 by September 28 would be a real stretch. Well, we're nearing the end of our fundraiser, and here we are just past $40,000. Not only have we received hundreds of letters and dollars from all 50 states, but we've also even been sent donations from about a dozen different countries as well. This fundraiser has been so much more then raising money alone; it has inspired and brought the best out in people, even myself. From the Girl Scouts to the Middletown Police Department, people who have never met us have been advocating and fundraising not only to honor our sweet Natalie Grace, but also to be a voice for all children fighting this beast.
I wish that cancer had never happened to Natalie, but not a day goes by where I'm not incredibly grateful that she has had a positive prognosis from the start, allowing me to fight for cancer research. Many of my fellow cancer families don't share this same fortune, making advocating and fundraising nearly impossible for them. Some of these amazing people still spend every moment in the clinic and/or the hospital. Some are in the thick of the fight, having no idea if and when their child's fight will ever be over. Some, as we speak, are sitting by their child's side day in and day out, as they've been told it's the end of their child's journey. And some are mourning the loss of their child, trying simply to get through each day with broken hearts and unanswered questions.
For the sake of these families, please consider contributing a dollar (or more) to help us make Natalie's birthday wish come true. You can donate online or write a check (don't worry if we get your letter a little late) made payable to "Arms Wide Open/The Truth 365" and mail it to:
P.O. Box 4064
Middletown, NJ 07748
C/O: Andrea Verdone Gorsegner/Infinite Love for Natalie Grace
If you can't help financially, then I ask you to share our story with your friends, family and even strangers. You never know who will see it and want to help in a big way.
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- by Andrea Verdone Gorsegner