‘We are your neighbors’: Money raised for pediatric cancer helps kids here in Central New York

One of the organizations that helped Archie Kulkus (in the foreground with his mother, Emily) and his family during his cancer treatment was Paige’s Butterfly Run, which has raised more than $3 million to help kids and their families in Central New York. His family and friends participate in the annual run as members of “Archie’s Orange Army.” Emily Kulkus works in public and media relations at Upstate. (photo by Susan Keeter)

One of the organizations that helped Archie Kulkus (in the foreground with his mother, Emily) and his family during his cancer treatment was Paige’s Butterfly Run, which has raised more than $3 million to help kids and their families in Central New York. His family and friends participate in the annual run as members of “Archie’s Orange Army.” Emily Kulkus works in public and media relations at Upstate. (photo by Susan Keeter)

BY EMILY KULKUS

Everywhere we go, Archie makes a new friend. He’s quick to smile and always chatty — not to mention pretty darn cute. So lately, lots of people stop to talk to us. Mostly him.

They tell me how cute he is. Then they talk with him and they tell me how smart, engaging and sweet he is. And every single time I think: If they only knew.

And then yesterday we were out running errands, and I was wearing my 2019 Mountain Goat Run shirt. The woman behind the counter asked me if I’d run this year.

“Yes, I did the relay,” I said.

She said, “Oh, my husband does it every year. He’s the one bouncing the basketball.”

Of course I know him; he’s a local celebrity.

She went on to say that he does it to raise money for leukemia and other pediatric cancers.

I tousled Archie’s hair — the hair that she and several others in the store had just admired — and said, “Well this guy right here is a cancer survivor. So please tell your husband thank you from both of us.”

The air left the room. There were audible gasps.

Sometimes I forget that “kids” and “cancer” are not things people are used to hearing. Sure, they see it on TV sometimes, but that’s someone else’s child — someone else’s problem.

I want people to see and know that pediatric cancer happens right here, too. We are your neighbors.

Archie is a beautiful, shining example of an amazing outcome.

He was 7 months old when he was diagnosed with Wilms’ tumor, a type of kidney cancer. He endured a nearly 12-hour surgery to remove the tumor and one of his kidneys and spent nearly a week in the pediatric intensive care unit at the Upstate Golisano Children’s Hospital. Over the course of eight months, Archie had eight radiation treatments, 15 chemotherapy treatments and many other tests and hospital visits to track his health.

In late March 2017, Archie received a clean bill of health, and his ongoing cancer treatment ended. Doctors will keep close tabs on him for the rest of his life. Survival rates for Wilms’ tumor are extremely high, and his future looks bright.

I don’t mind the gasps. Or the tears. I never want “kids” and “cancer” to be normal. But we have a long way to go before it’s a phrase we don’t recognize.

To donate to pediatric oncology research and patient programs at Upstate, contact the Upstate Foundation at 315-464-4416, or Paige’s Butterfly Run.

cover of summer 2019 Cancer Care magazineThis article appears in the summer 2019 issue of Cancer Care magazine.

This entry was posted in cancer, health care, kidney/renal/nephrology, patient story, research, Upstate Golisano Children's Hospital/pediatrics and tagged . Bookmark the permalink.

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