From my earliest entree into blogging in my daughter Alexis' journal, I learned quickly that the childhood cancer community was a very disorganized and dis-unified group of entities and individuals who all had the same ultimate goal: a cure.
The words we use to talk about cancer, in children and adults, influence how we think about cancer and those unlucky enough to be touched by it. Survivors are called "victorious" and "winners." Those who have not survived their cancer are called "angels" and "in a better place.
There are times in long endurance events when the destructive thoughts begin to filter through your brain, suggesting how truly pleasurable it would feel to simply take a seat and stop. As those thoughts taunted me, my mind turned to one thought: my daughter never quit, neither will I.
I wanted to take this opportunity to bring to light an issue that I think deserves much more awareness and attention on the federal level. Childhood cancer. Childhood cancer is the number one disease killer of our children in this country. Were you aware of this fact?
There is a message of hope in each and every child and family who hears some of the worst words in the English language, "your child has cancer." There is honor in making everyone aware of these heroes.
Most of the other guests at Jill's House were older men receiving proton for their prostate cancer. These folks quickly became like extra grandparents to Donna and Mary Tyler Son. There was always a set of arms wanting to hold and moon over the baby. It was a Brigadoon in Cancerville.
Donna developed a fever and we were told to bring her in to the ER. It was 3 a.m. on Christmas Eve and there was a blizzard happening. Poor Mary Tyler Dad was out in the alley trying to push the car and I was inches from delivery and trying to steer the car with my big belly in the way.
As we exited the plane, rows of Chicago firefighters and police officers gave the kids standing ovations. I lost it -- tears, sniffles, undisguised emotion. Something about these men and women who put their lives on the line daily saluting these sick kids really moved me.
After a checkup to ensure Donna's brain wasn't swelling from the drugs, our oncologist asked her, "How is it that you are as sweet as you are?" Donna considered that question a moment, turned to look at me, and responded: "Because I love my Mommy and Daddy so much."
How to reconcile the girl in our photos, our beautiful Donna, with the photos the doctors order, those inside her body? How, as a parent, do you make sense of what you see in front of you and what the doctors tell you is happening?
Getting Donna into dance was one of the ways we chose hope, the mantra that had guided our Cancer Parenting since diagnosis. Choosing hope meant believing that Donna would enjoy her classes, make it to the recital, shine on a stage like the star she was, and live.
My heart breaks a little whenever I see these photos. I ache for the family that was. I want to protect our naivete. While I can't do that, I can remember the family we were. I can see our joy and our love and marvel at Donna's beauty and light. All of those things are intact. Still, today, intact.
If you see a bald child, smile. Look their parent in the eye. Let them know you understand. Be aware that you are looking at greatness. Know that kid is amazing and brave and so very, heartbreakingly vulnerable. Just like Donna.
There my husband was, tossing his burger, repeatedly, and I was incensed. 'How could he?' I remember thinking. My picture-perfect family getaway where we were going to ignore cancer for five whole days was being usurped not by chemo or neutropenia or cancer but by blue cheese!