If you are anything like me you go through life preparing for the bumps in the road which might pop up unexpectedly. You go through life preparing for obstacles that might appear before you. You go through life preparing for your family’s future by purchasing life, health, auto and home insurance just in case. But how do you prepare for the unimaginable? How do you prepare for a doctor to tell you your child has cancer? How do you prepare your little boy for the loss of his leg? How do you prepare your 11-year-old for the possibility he may never step foot on a basketball court again? How… ?
This is exactly what we had to do in July 2007, when our youngest son, Sean, was diagnosed with osteosarcoma, a bone cancer, in his left knee. Sean had been complaining about a sore knee but initial x-rays did not show anything alarming. After a month of pain, sleepless nights and a progressive limp, we finally insisted on an MRI. Thus began our journey, and it is a lifetime journey, into pediatric oncology.
If you are reading this newsletter published by CURE, you probably have been touched in some way by pediatric cancer. The first time I picked up this publication, I was sitting in the Aflac Cancer Center on the fourth floor numb, looking around at all the children and their parents thinking, “I cannot believe I am here. How did we end up here? I am not strong enough for this.” That was two days after Sean’s diagnosis, as my husband, John, Sean and I sat in the waiting room for our first appointment with Dr. Bradley George. I looked at all the children and wondered, “What is your life like?
How are your parents dealing with siblings, jobs, everyday activities, school?” I thought I would find the answers on their faces because I needed to find the answers somewhere. But I didn’t find answers that day from strangers; I found my answers through my 11-year-old son. Sean sat in every meeting with us while words like osteosarcoma, chemotherapy, amputation, rotationplasty, doxorubicon, cisplatin, and methotrexate were uttered. Words we would all come to know like our own names. Sean gave me more strength, showed me more character, and bestowed more grace than anyone I had ever known. I am so proud to say I am Sean’s mom.
By the weekend, our community was aware of Sean’s cancer. Sean was the fourth child to be diagnosed with cancer at his school in five years, so we were surrounded by love, compassion and people who had walked this walk. That weekend, Sean made a phone call to his friend Andrew Vassil, who had been diagnosed at six years old with an inoperable brain tumor. Sean and Andrew, two 11-year olds, had a conversation about cancer and biopsies, not sports and girls mind you – cancer and biopsies! How surreal is that?
While the initial diagnosis of cancer was devastating, the surgical options presented to us were just as overwhelming. Not only did my little boy have cancer and have to go through 30 rounds of chemotherapy, but they would have to take his leg, too! I was in shock…he’s got things to do, games to play…please, please, no.
After a month of research, consultation, and prayer it was decided that the best chance for Sean to live a cancer-free life and continue the life God intended was to undergo rotationplasty surgery. Complete amputation and limb-salvage were also presented as options but the surgeon told us rotationplasty would give Sean the most function and usually only means one surgery. More function, less time in the hospital – sign us up!
Sean’s left knee and most of his thigh were removed (and the cancer!) in october 2007, his lower leg was rotated 180 degrees and reattached to the remaining part of his thigh. for those who have never heard of rotationplasty, and I know it is hard to imagine, Sean’s heel is now his new knee while his foot acts as a regulator for his prosthesis.
It has been almost three years since Sean’s diagnosis, and while this may sound odd, childhood cancer has made us better people. When applying to college last year, my daughter wrote about her brother’s fight, “Having something so bad happen to your family weirdly has amazing outcomes.” I couldn’t agree more.
Our family has been involved in many fundraisers for childhood cancer through CURE. finding a cure has given me a purpose in life I never would have found if not for Sean’s diagnosis. I have sat with senators educating them about the lack of funding for pediatric cancer, asking them for their help. I have even spoken in front of more than a thousand people telling them about children with cancer, asking them for money – this was way out of my comfort zone for sure, but I will do anything for these kids.
Today, Sean is cancer-free. We go in for chest x-rays every four months. He is on his fifth prosthetic – he just keeps growing! He will be attending Blessed Trinity Catholic High School in August. He plays football, basketball and this summer he has been selected to play in an elite travel lacrosse league. My boy is living the life God intended and we are more than blessed to sit on the sidelines and cheer him on.