Jodie Potter is an Emily Whitehead Foundation board member and the organizer of our Pittsburgh and Philadelphia Marathon running teams, among other events. In December 2011, Jodie’s son Corban was diagnosed with neuroblastoma just prior to his second birthday. Today, Corban Potter is five years cancer free!

In her own words, Jodie shared with us the story of her son’s diagnosis and recovery, how she came to be involved with the Emily Whitehead Foundation, and her commitment to fight back against the “big bully” that is cancer.

March 20, 2017, is a day that I’ve eagerly anticipated for the last five years. It’s one of several ‘milestone days’ that both haunt me and drive me.

Five years ago, on March 20, 2012, cancer was skillfully removed from my young son’s body.  We have lived the last five years thankfully claiming ‘no evidence of disease,’ but finally today, I can say my son is cured of cancer.  It’s ‘just’ by textbook definition, but CURED is a gift that no one is promised!

The Emily Whitehead Foundation has been woven into our journey before the foundation or our journey even began. Shortly after Emily was diagnosed with leukemia, my husband and I wondered together how their family was putting one foot in front of the other…why them and not us? Our daughters were in kindergarten classrooms next door to each other at school.  It could just as easily have happened to one of our children.

On a cold December day, shortly before our youngest son turned two, it did.

We learned that the reason his lingering cough wouldn’t go away was that there was a large tumor sitting behind his lung. It was a Sunday afternoon, and we were sent home from the emergency room to see an oncologist the next day.

As soon as Emily’s dad, Tom Whitehead, heard of Corban’s condition, he called and encouraged us to seek treatment at the Penn State Hershey Children’s Hospital. Emily was inpatient there at the time, dealing with her first of several relapses. They offered to appeal to doctors on our behalf and were there at the hospital and could help us. When we arrived in clinic the next day, in a complete fog, with no idea what we were facing, Kari was there in the waiting room to greet us. Years before EWF even existed, they offered support to other families who were navigating the terrifying world of a child’s cancer diagnosis.

My son Corban was diagnosed with neuroblastoma, a solid tumor originating in the nervous system, when he was not quite two years old.  The cause is unknown. His prognosis was positive, and his treatment was fairly short compared to what some families go through. No one told him how cruddy he should feel, so it was business as usual for him. As far as he knew, he was just supposed to keep playing and singing country music songs and watching John Deere tractor videos.

We had our share of bumps and scares for sure, but thankfully, things went mostly as the doctors hoped and predicted they would. He started his first round of chemo on my birthday and ended his second round of chemo on his second birthday. Emily was inpatient again that day, and she bought him birthday gifts from the hospital gift shop to keep him entertained while he was hooked to the IV in the infusion room.

He underwent chemo, several blood transfusions, and a couple of unplanned hospital stays when his counts were low. He tolerated his treatment well, but he sincerely hated having the dressing on his central line changed. Most times, my husband and I had to hold him down by his arms and legs while the nurse changed the dressing. He doesn’t remember any of this, but I won’t forget it. He felt fine, and he didn’t want anyone messing with him.

Finally, on March 20, 2012, the pediatric surgery team removed a tumor about the size of a hockey puck from behind his right lung. The docs said he looked like a pin cushion in the operating room—he had so many monitors hooked up to every critical spot.  It’s painful to try to imagine what he went through in the OR. The scar around his side still stops me when I see it—a permanent reminder of how far we’ve come.

He was hooked up to lots of tubes and wires and monitors after the surgery, and I remember very clearly sitting up all night in a rocking chair at his bedside with my forehead resting on the side of his crib. He was hospitalized for about four days after the surgery, but once they unhooked the tubes and wires, he bounced back to his adventurous, sunny self pretty quickly. He kept me on a very short leash in the hospital—I spent most of my time in his crib with him. A few days after his surgery, I finally got up to go for a little walk down the hall, and when I came back, I could hear him and daddy playing construction site in the crib. ‘Vroom-vrooms’ and ‘hey macks’ never sounded so sweet.

We have gone back for regular checkups over the last five years, with visits getting spaced further and further apart as time passes. Corban is now in first grade, and he is one of the happiest kids you’ll ever meet. He’s happy about everything and happy about nothing. He loves to ride his bike and dirt bike and dig and get dirty. Really dirty. He is healthy and happy and living and loving life. We are blessed and so very thankful for each day.

After Corban’s diagnosis and treatment, as many parents do, I had an overwhelming desire to give back to the community who had supported us so faithfully, or pay forward to families who would be walking the same path we walked. In addition to this, I felt the need to fight back against the big bully (cancer) who picked on my baby.

Over the last five years, I’ve participated in many fundraisers for pediatric cancer research and spoken at events to raise awareness for the cause. It is an absolute honor to be involved with the Emily Whitehead Foundation. My daughter Manna is Emily’s best friend, so we spend a lot of time together. Seeing Manna and Emily playing together, and often Corban tagging along, always causes me to pause and remember where we came from. Kids being kids…never promised, but we made it.

I stare miracles in the eyes on a daily basis. Now our job is to make sure other families can celebrate everyday milestones as well. I’m serving as an EWF board member, leading the teams of charity runners in the Pittsburgh and Philadelphia marathons, and every day brainstorming to fill our dream board with ways to put an end to pediatric cancer.

There is a huge amount of satisfaction seeing things that were at one time just ideas on the dream board turn into reality. I’m over the top excited about our upcoming Believe Ball this fall—to celebrate the kids who are thriving, when there was a time when they were out of options to get better, to honor the kids who cancer took from this world too soon, and to recognize the team of doctors whose life’s work is to see these children live.

I promise it will be a celebration like no other. I’m so proud of the team we’ve assembled here with the foundation, and I believe we are changing the world.

Today (and every day), I celebrate my son being CURED of childhood cancer. Soon, I will join EWF in celebrating a world CURED of pediatric cancer!

Learn how you can Get Involved with the Emily Whitehead Foundation.