On June 28, 2017, my husband Joe and I received the fateful news that our daughter Sophia, aka Wonder Woman, had a mass on her brain.
This news came after weeks of Sophia being sick off and on; after numerous desperate trips to the pediatrician for answers; after a great deal of blood work with the only indication being celiac disease (this Mama Bear knew celiac was not causing her daughter to be so sick); after we took Sophia to the ER at Penn State Hershey Medical Center on June 24 because she was severely dehydrated (we haven’t left); after an endoscopy was done to confirm celiac (in the end it still isn’t clear if she has it or not); and after a bad night of sleep with a headache that Tylenol didn’t touch led Sophia’s GI team to call for an MRI of the brain.
A biopsy of the mass confirmed the tumor was malignant.
It was not lost on me that Sophia’s oncologist never used the word cancer, always referring to “the tumor” or “this type of tumor.” Maybe that is why I myself have been slow to use the word.
More likely than not though, it is because I don’t want to admit that my child has cancer. That she is now a statistic. That she is now a face of Childhood Cancer Awareness Month.
You may have noticed that some of your friends on Facebook are changing their profile pictures and “Going Gold” for the month of September in honor of Childhood Cancer Awareness Month. Quite a number of municipalities are also “Going Gold” thanks to efforts by people like Christopher Winters, one of the first to welcome me to the pediatric cancer community. As he likes to say, “We are all family.”
Despite still trying to find my place in this community and not being one that usually advocates awareness months, I am joining them in “Going Gold” for Childhood Cancer Awareness Month because life is not the same as it was nearly three months ago. As someone I work with once told me: “Where you sit is where you stand.” I quite literally sit by my child’s hospital bed as she fights a rare form of brain cancer. Therefore, I now stand with my newfound community in advocating for Childhood Cancer Awareness.
I know that this month means different things to different people. For me, it is just as much about raising funds to find cures as it is to educate others, particularly parents and even doctors, of the need to consider cancer as a possibility when a child is sick.
Just as important as finding cures is figuring out why our precious little ones are fighting these “villains” – the term we use to refer to our little Wonder Woman’s cancer.
I struggle with the lack of interest – or maybe this is my perception in my current state of mind – in researching the why and how of childhood cancer.
Yes, we need to research cutting-edge treatments. But personally, I want to understand why my bright, beautiful, funny, healthy kid who only ever had the typical cold got slammed with cancer. And not a “typical” well-known cancer. No, my kid had to be attacked by a cancer that has stumped seasoned professionals at multiple institutions in this country. So, we are stuck in the middle – we have no solid research to guide her medical team to treat her, and we have no one seemingly interested in determining what caused this cancer in the first place.
If we truly want to tackle childhood cancer, along with finding cures, we need to answer questions.
What caused this particular cancer?
What triggered her cancer?
Why at this point in her life and not later?
Why this child?
Why at all?
So many questions that will most likely go unanswered for Sophia, but should continue to be asked if we truly want to make a difference in the world of pediatric cancer.
Yes, I want my child healed. So, yes, I want her medical team focused on solving the problem before them.
But I also want to understand what happened to Sophia, and in turn, help prevent other kiddos and their families from being dealt this terrible blow.
Throughout September, please keep Sophia and other children battling this vicious disease – as well as those who have either won or lost their battles – in your thoughts.
But also please take the time to learn more about childhood cancer. I’m living in the midst of it, but am self-admittedly ignorant when it comes to the big picture.
And parents, trust your gut and be the advocate your child needs you to be when they are sick. Educate yourself and demand things be ruled out. It was beyond frustrating at the time, and it hurts my heart now to know how many weeks we lost to a very aggressive type of cancer.
I realize that if this issue hasn’t impacted you directly, it may be easy to overlook.
But as Sophia has shown us, cancer can hit any child and family out of the blue, and it can be devastating for a beautiful, full-of-life child with a very bright future ahead of her.
For more information on childhood cancer and how you can get involved with related events visit Four Diamonds.
Erin Kelly Marsicano, 38, is mom to Sophia, the most famous redheaded Wonder Woman, and wife to Joe, her hysterical blonde Italian husband. Outside of their current home of Hershey Med Center, Erin and her family live in Mechanicsburg in a new-to-them 1800’s farmhouse, and she works in Pennsylvania’s beautiful Capitol building.