Honoring Regan

Regan with her brothers.

Each year, heading into the fall, we get really excited about Cincinnati Walks for Kids. It’s a seriously fun event. If you’ve never participated, I encourage you to do so – the event has an energy that you just have to feel to believe.

As momentum is building for the event, I’ve been reminded over and over again how courageous and inspiring our walkers and their teams are.

Blake Flaugher is a big brother, honoring his little sister:

My life and the lives of my family members changed on December 1, 2009. That was the day Regan Leigh Arnold, my little sister, went to the emergency room for back pain and shortness of breath that were getting increasingly worse. It was determined that her lung had collapsed and it was not long before she had a chest tube placed to drain the fluid from her lungs.

After a month of running test after test, pathologists confirmed a diagnosis of cancer – lymphangiosarcoma.

We were prepared during that month for a diagnosis of tuberculosis or Gorham’s Disease (both terrifying diagnoses), but none of us were prepared for the flood of confusion that the word “cancer” would bring. We all had heard so much about it, or knew people affected by it, but this was happening to someone in our immediate family. I was personally in denial for months and months, and part of me still feels that denial today.

For the next year, we lived in a literal hell. But Regan was always optimistic, loving and kind despite the losses in her life that year – she missed prom, wasn’t able to get her driver’s license as planned, and lost her long, beautiful hair during chemotherapy.

She spent her 8 months in the hospital making bracelets for everyone she came in contact with: her medical team, custodial staff, other patients, her friends and so many others. She had a “bald board” that was plastered with pictures of her bald self with loved ones, which was famous in the hematology/oncology department. She played pranks on everyone, and made people laugh almost constantly. She was truly loved.

We didn’t know how much time we had left with her, but we knew the worst was coming as time passed. Before we could truly accept her prognosis, she passed away at home on New Year’s morning of 2011.

It turns out that Regan is the only teenage female ever known to have lymphangiosarcoma with her specific disease presentation, and her case is even more unique because she did not share a common history of known risk factors for those with angiosarcomas.

Some of her treatments were almost complete shots in the dark, including the chemotherapy. And the survival rate was extremely low for people who had similar cancers (~20% after five years).

Not only was her cancer rare, but it also caused her to live in a state of severe and relentless pain. It was incredibly hard to watch my athletic sister who loved her high school sports and was a passionate and successful track runner, eventually become confined to a wheelchair and tethered to an oxygen tank. She could not even walk up a few steps without crying from the pain caused by adrenaline in her chest. Her body simply could not take the stress of the lightest activities because her bones and lungs were literally being destroyed by a rare cancer that came out of nowhere.

She suffered in so many ways because of this condition, many of which we will never fully understand.

That is why we are participating in Cincinnati Walks for Kids to raise money for The Cancer and Blood Diseases Institute at Cincinnati Children’s. We want to help them have the resources to do research on rare cancers like the one Regan had.

Cincinnati Children’s is a fantastic hospital, recently rated #1 for pediatric cancer, and the LEAST we can do is give back to them by putting energy toward funding medical research for cancer in children.

They were also completely supportive and loving toward Regan and our entire family, and Dr. Denise Adams and the rest of the team were nothing short of amazing. Every single dollar counts, so even if you skipped your Starbucks for a morning or two before September 28th and donated $5 or $10, that would do wonders.

We want to honor Regan’s life by raising as much money for this cause as we possibly can.

You can support Walkers for Regan and many other teams in their efforts. Learn more about Cincinnati Walks for Kids at www.cincywalks.org.

Kate Setter

About the Author: Kate Setter

Kate manages social media at Cincinnati Children's, a role that she loves because it gives her opportunities to help families find stories and pediatric health information that they want and need. Kate is the mother of a four year-old and a toddler, you will probably hear about them and their antics from time to time as well.

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Comments

  1. Marsha McDowell August 31, 16:06
    What a great article honoring Regan and her brave fight against this cancer that attacked her body! She was a wonderful example to all of us! Cincinnati Children's Hospital is the best. My husband and I spent several months there with our two daughters. They both lost there lives to Omenn's Syndrome but the care they received from the staff there was phenomenal! I've never seen more caring doctors or nurses anywhere.
  2. Carolyn Cremeans September 02, 21:59
    So enjoyed the story about Regan Arnold, you see this story hits close to home, I have known Regan since she was a little girl, her Grandmother Ann is my neighbor, and I just a little of what this precious family went through .So glad that this years walk is to Honor a very Brave young lady. My son also was treated at Cincinnati Children's, he had surgery for a benign tumor on his leg. Our orthopedic Dr. recommended Cincinnati Children's and we are so glad he did, we were treated so very well and so was he. With all the visits we made there we never encountered a person that was anything but helpful and friendly.Dr.Crawford(retired) was wonderful and so was his staff. Ours was a happy ending, but know that so many are not, Thank You Cincinnati Children's !