Tuesday, August 14, 2012

Surviving.

After Lily's oncology appointments, she comes home and plays doctor.
Five years ago. Lily, in the PICU.

Her version of doctor includes the typical triage: heart, blood pressure and temperature. It also includes other things: like IVs, MRIs, surgeries, shunt revisions and extensive outpatient physical therapy for her patients, who are typically her sister, our dog and a variety of dolls and stuffed lovies.

Lily is a survivor. And while to some, surviving may mean leaving all that oncology stuff behind, Lily carries it with her. She carries it in her play. She carries it in her narrative--the very stories she tells her friends. She carries in each step--sometimes shaky and off balance. We all carry it in our memories.

None of us will ever forget cancer. No matter if we are five years out or 50 years out. We cannot forget. It is not a state of wallowing in misery nor is it living in the past. It is living in the very moment.

Childhood cancer is right now. If it is not in my daughter's brain; it is in someone else's. It is in the blood of the 7-year-old I saw at CHOP today and in the bones of 16-year-old who is now confined to a wheelchair. It is in the kidney of the 13-year-old, who just wants to be playing soccer instead of waiting to see an oncologist.  It is in the brains of children that whose stories I read everyday in my EpendyParents group. Cancer may have physically left our family--Lily kicked it to the curb--but it is still out there wreaking havoc and stealing childhoods.
Lily, today, this very day. Five years out from a brain tumor., with her neuro-oncologist

For our family, surviving means carrying cancer with us. Surviving means remembering and fighting everyday to make sure that someday, cancer is just a memory for the other children battling this evil, nasty disease. Surviving means working to build awareness, raise money for research and fighting everyday for cures, therapies and better treatments for other children.

If we were to drop our cancer experience now--everything we battled; everything Lily fought with every cell in her tiny little body, would have just been a rough time. Cancer defined the mother I am today--it set the parameters; it changed our family. We cannot ignore it. Lily's battle for life, began with fighting for her own. Now the battle continues--and as a family we will battle for the life of other children.

Surviving is not the end of the fight;  but the start of a new fight--a fight waged along side other families against an insidious, sadistic enemy.

Ten kids, a day, die from cancer.

And we cannot abide this carnage.  The fight is not over; not by a long shot.

So for now, Lily plays doctor. Chloe plays patient. I write and yell and speak. Mike raises money. And together, we survive and we fight for those on the same path to survival; just like those who came before us and just like those after us.

Someday, ten kids, a day, will live in spite of cancer.

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