Childhood cancer survivor Julia Jones will be joining us as a guest blogger this month as part of a project to earn college course credit. In the coming weeks, she'll be dissecting timely childhood cancer policy topics from the perspective of a survivor. Today, she offers us her childhood cancer story by way of introduction: The story of my cancer starts 18 years ago. I was a normal six year old with two brothers, a mom and a dad, and a safe home. I had dreams of being just like Shirley Temple, and I had long blonde curly hair. Cancer was not a word in my vocabulary.
I was home schooled and my favorite part of home school was going to the The Kennedy Center in Washington DC. The day I learned about cancer, I went to see a performance of John Phillip Sousa with my mom, brothers, and our homeschooling group. I wore a blue dress with pink flowers and lace trim.
I remember what followed as a series of snapshots: Sitting in my mother's lap during the performance because my "belly hurt." Laying down on the floor of the van as all of the moms took turns feeling the lump in my stomach. We went to the pediatrician, who redirected us to the emergency room.
The things I remember from this experience surprise me, probably because I remember them through the lens of childhood. I remember the things that annoyed me and the things that scared me, but I also remember the funny details that are important to a child. I remember the Power Ranger stickers and the way that the chemo felt cold running through my veins. I remember watching "The Swan Princess," eating hospital fish sticks, and the "zoo" in pediatrics that housed stuffed animals.
Cancer gave me a very specific skill set: I could lay still during radiation treatments and I could count to 30 before a "pokito in the port," which is the phrase my nurse used to refer to accessing my infusaport. I required my nurse to count to 30 every time she accessed my port, and if she attempted to trick me and skip ahead she would be required to start again.
The reality of my treatment is that I was very fortunate. Days after finding the tumor, I had surgery to remove my kidney and we found out that I had Wilms Tumor with diffuse anaplasia. I then had radiation and chemotherapy. Within weeks of starting treatment my long blonde hair was falling out and I was losing weight. It is hard to look at pictures of this little girl who is pale and not much more than skin and bones.
But I was fortunate because my hospital allowed me to receive my chemo from home. I was fortunate because I tolerated my treatment well. I was fortunate because my cancer never came back.
I often reflect on my friends' experiences with cancer and when I look at the things that some of them have struggled through, I think: there are no words for how lucky I was.
Sometimes I think it was all easier for me: easier to be the little girl who didn't know what cancer meant than to be my loved ones who watched the girl they knew wither away.
I remember asking my parents if there would ever be a time when I wouldn't think about cancer everyday. I've found that the answer is yes and no: There are some days when I don't think about it at all, and there are some days when I feel that cancer has become so fused with my identity that I think about it all the time.
Cancer brings up so many complicated emotions: fear, anger, guilt. Have I done enough and can I ever do enough to stop this from happening again? Cancer is the worst. I hate it. It has robbed me of my childhood, my health, and my friends. And still, I see where my experience has made me stronger today.
Due to my involvement in the pediatric oncology community, I know and love many children who have cancer and young adults who are survivors like me. The most profoundly difficult and painful part of my life has been watching children I care about struggle against cancer, simultaneously knowing what that is like and knowing that my battle was nothing compared to what they face.
I am a survivor, but cancer will never be over for me until those that I love are free as well.
About Julia: Julia is in graduate school working toward her Masters Degree in Counseling. As a childhood cancer survivor, she hopes to one day work with children with cancer and their families, helping them through the emotional challenges during and after cancer. She is very active in the childhood cancer community, especially as a volunteer for Special Love, which provides camps for kids with cancer and support for families. Julia enjoys expressing herself creatively through art, music, and dance.