Tuesday, September 1, 2015

3,121 Miles. #Journey2aMillion

I was waiting in airport security with Lily. She was just 15 months old. Forty-eight hours earlier, Lily was in the PICU, recovering from her fourth and final brain surgery.

Her stitches had not dissolved and there was still dried blood on her incision.

It was the summer and there was a long, long line. I tried to ask to go ahead of the line--to go through the line for people with special needs or for frequent fliers, but I could not form the words: "My baby had a brain tumor." I stood there silently, texting Mike, worrying about Lily in the stroller, scared she might vomit in the heat of the long security line.

We waited and waited. Mike stayed home for this trip; he needed to work and we knew this would be the first trip of many and we needed to save his time off for the long haul ahead. This time I would meet with the doctor in Houston who would manage Lily's proton radiation treatment. I was alone with Lily, studying her.

There was the new incision, plus all the others, everywhere that formed a map of her time in PICU. Brain cancer leaves its mark everywhere--it is messy, unrelenting. We had not fully removed the dirty, sticky outline of adhesive tape that formed a small rectangle around the spot that held all those IVs. It looked like an outline at a crime scene.

We waited for an hour. We made it through security. We made it on the plane. Lily sat on my lap--we had the middle seat--the only seat we could get with little notice. The passengers next to me just stared and stared at the long, long scar running down the back of her head and onto her neck.

I could not tell them what happened. I could not say: a month and a day ago my daughter was just a baby. Now she is a baby with ependymoma; a baby battling childhood cancer. I could not say that I was staring too; staring at that long scar, remembering that Lily had been facedown in an operating room for 4 1/2 hours. She had to receive 4 units of blood. The tumor did not want to let go.

Our flight was 3 1/2 hours. It was 1,560.5 miles to Houston; 3,121 miles round trip.

When you leave your home for cancer treatment for your child, you truly leave everything behind. You leave your bed, your friends, your dog, your cat, your normalcy, your sanity. It is all left  in panic, as if a storm is coming. However, the storm already swept through and you lost all those things  the moment your child was diagnosed with cancer. You traded your bed for a hospital chair and your friends for nurses and other shell-shocked parents. Your pets have become something you need to have someone else care for because you are gone; gone in the night and racing right into the storm.

Because you have to get right to the center to fight--and then you have to go where the hope is--you have to try to find a cure, no matter how far you go.

Our trip for proton radiation was 3,121 miles.  My friend Stephanie has traveled over 18,000 miles for her son Nico, who is battling Neuroblastoma. Keren traveled 4,600 miles, for Cole, her neuroblastoma survivor. Renee traveled over 6,606 miles for Felicia who battled Wilms Tumor.  David well over 1,600 miles for Jonathan, his son, who battled ependymoma. We all left it all behind for our kids. We keep leaving it behind with every MRI and treatment plan and follow-up meeting and radiation treatment.

And then there is my friend Robin. She traveled endlessly--thousands and thousands and thousands of miles for a cure for her daughter Campbell, who battled ependymoma of the brain and spine.  Campbell never got her cure. She is forever 8 years old. Brain tumors never want to let go.

That is why this September, during Childhood Cancer Awareness Month and Alex's Million Mile, we will walk and run and ride and log our miles for a cure. We will leave it all behind--our comfy couches and car rides and our fears--and we will walk, run and ride right into the beautiful storm of hope.  We have no choice. We do it for our children--we do it for our friend's children--we do it for the children  who are diagnosed each day. We do it because childhood cancer remains the leading cause of death by disease in children. Children are diagnosed everyday. Children are dying everyday.

Everyday.

But there is hope. There is hope, one mile at a time.

This September we will join with teams all around the world in Alex's Million Mile--a month long awareness and fundraising event. We will track our miles and collectively reach 1 million miles and 1 million dollars for childhood cancer research.

We will do it, one mile at time, leaving behind all those doubts and fears. Trading the storm for the joy of hope.

If you feel inspired to take this journey with us and log your miles in September, join Team #BigLemonade for Alex's Million Mile. When you join, you will record the miles you go and with every step you take, know that you are walking with all us of towards hope for a cure, one mile at a time.






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