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Archive: June 2016

Between the Rain and the Sun

Late in the afternoon, we all drove over to Mayfield Cemetery to visit Rebecca’s gravestone, two years after her death.

“She’s not here,” Kat said quietly as the kids headed back to the car, for once not making a race of it.

“I know,” I said.

“She’s in her preschool.  She’s at New Jersey.  She’s everywhere we are.  This… is the last place she is,” Kat said.

Misunderstanding her meaning, I shook my head.  “No.  The last place she was, was in our home.  In her home.”  My voice cracked on the last words.

Kat didn’t correct me.  We stood silent, holding each other, feeling the stiff rivers of pain running through each of our bodies.

The cemetery groundskeeper rolled slowly by in his SUV, giving us the “we’re closed” look.  Kat nodded at him.  The SUV rolled on.

I took some pictures of the mementos friends had left earlier in the day.  Flowers.  A rainbow-colored spinner.  A small plastic Rainbow Dash toy.  We nestled the figurine into the earth next to the stone, in hopes that it would stay safe through a summer of mowing.  I whispered a few words to my absent daughter, barely voicing apology and love and regret past the tight bands of sorrow in my throat.

We decided not to go to any of the kids’ favorite restaurants for dinner, not even Rebecca’s.  We drove instead to Chagrin Falls, to eat at Jekyll’s Kitchen, our first visit since its reopening.  After dinner, we got ice cream at Jeni’s and walked down the stairs to the falls.  We showed the kids where I had formally proposed to Kat, one icy March afternoon almost two decades before.  Carolyn was incredulous to hear that we’d jumped a closed gate to do it.  Joshua climbed over rocks and logs down on the river’s bank, falling once and then warning me about the moss on the rocks.  “The moss is very slippery,” he informed me solemnly.  “You have to be careful.”

On our way home, the clouds were underlit by sunlight which I guessed was reflecting off Lake Erie.  As we turned alongside the interstate, I spotted columns of rain off to the north, dark beneath the darker clouds.

I had a sudden hunch.  I turned off the direct path home, working north and west in a stairstep fashion.

“Why are we going this way?” Carolyn asked.

“I think your dad is stormchasing,” Kat said.

“Rainbow-chasing,” I replied.  “I just have to get us between the rain and the sun.”

Soon enough, a light sprinkle fell across the windshield.  Just as I turned west onto Cedar Road, the sprinkle intensified to a light rain.  Ahead of us, the setting sun turned utility lines into threads of golden fire.

“If there’s a rainbow, it will be behind us,” I said.  “Kids?  Is it there?”

A rustling of movement, and then: “Oh my God!” Carolyn exclaimed.

I pulled into the parking lot of the Burger King across from University Square, and there it was: strong and bright at the horizon, fainter at the zenith, paralleled by a still fainter cousin.  Well, would you look at that—double arches over Burger King, I thought, wryly.

The rainbows flared and faded as rain and clouds and sun shifted places, the slow dance of color and light.  I watched it all unfold, feeling anew the ache of regret that I hadn’t been able, hadn’t thought to try, to give her one more rainbowShe would have loved this so much, I thought sadly.  Just as her sister and brother are loving it, right now.

“This is a sign,” Carolyn said.  “It has to be.”  I smiled softly.

Two years.  Two rainbows.

We love you, Little Spark.  We miss you.

Fearing The Cure

I’m afraid there will be a cure for cancer.

Except no, that’s not really it.  In truth, I’m afraid of what a cure for cancer will do to me, and to Kat.

After my mom died of breast cancer in 2003, I gritted my teeth at news stories of promising new cancer treatments.  I’d think to myself, If a cure is coming soon, why couldn’t it have come sooner?  As, I’m sure, the parents of polio victims asked themselves, when the vaccine came into being.

Word came recently that the FDA is fast-tracking a novel treatment for glioblastoma, based on genetically modified polio virus.  Initial trials have been so effective, they’re opening it up to as many as possible.

And I remember reading about this treatment, which had worked in a single case, two years ago, as our daughter was treated for glioblastoma.  We tried to get access to the treatment, tried to get into a study or just be given a sample to administer, and were denied.  Twice.  They wouldn’t let us try it on a little girl with multiple tumors, when it had only been successfully tried on an adult with a single tumor.  That door was closed to us.

So the experimental treatment we tried wasn’t a modified polio virus.  It was something else.  It was something promising.  It didn’t work.

I know this polio treatment, as much as we wanted it then and as promising as it looks now, may come to nothing.  So many other treatments have before.  I remember the every-other-year drumbeat of “Is This The Cure For Cancer?” headlines and magazine covers—all about novel, promising approaches that nobody remembers now, because they didn’t work as it seemed like they might.

“A cure for cancer is the next great breakthrough in medicine, and it always will be,” I sometimes joke, a little bleakly.  But then, that’s what they used to say about polio itself.  About smallpox.  About wound infections.

I read that story about the treatment we’d begged them to let us try, and how it looked like it might cure the cancer we could not, and sick grief ached anew in my chest.  I thought, What if this really works, and we failed to get it for her?  What if I could have called that doctor again, begged and pleaded, and somehow gotten him to say yes that time, and saved Rebecca’s life?  Will I ever forgive myself if the cure was there all along, and I was too weak or blind to force it into our hands?

I still don’t know the answer.

I don’t want brain cancer to remain uncured.  I don’t want any cancer to remain uncured.  I don’t want other families to suffer what we and so many other families have suffered.  There is much I would give to bring about that day, even though it comes too late for my mother, and for my daughter.  There is much I have given, in many senses, to try to bring about that day.

When that day comes, if it ever comes, even if it’s just for one type of cancer, celebrate all the lives that will be saved.  Feel that joy and relief.  But also spare a moment of compassion for all the lives that were lost, and all the lives that were broken.  Especially for the ones who died just before the cure came, the ones who mourn both their absence and the could-have-been that came so close.

Until that day comes, if it ever comes, spare a thought for those who live sick with dread and desperate hope, wishing and praying for a breakthrough to save their loved ones.

Spare another for those who live in dread of that day, and hate that they do.

June 2016
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