When life gives you cancer: Upper Arlington teen publishes book amid eighth diagnosis

By the time Alea Ramsey had turned 18 earlier this year, she was a published author. But also around her 18th birthday, she got the news she would be battling bone cancer for the eighth time.

Ramsey, a rising Upper Arlington High School senior, has been battling osteosarcoma, an aggressive form of bone cancer, since she turned 13 in 2018. In the first 300 days of her diagnosis, she was at Nationwide Children's and received six surgeries and 24 rounds of chemotherapy. Then 11 months went by and things seemed great. Since then, it's been one surgery after another.

Last summer, she had four ribs replaced with titanium — and in June of this year she had surgery to replace her spinal vertebrae, which had collapsed. All in all, she had been diagnosed and relapsed eight times.

Her experiences as a girl fighting cancer and learning to find her voice led her to write a book titled "When Life Gives You Cancer" which she hopes to be a "dummy's guide" for teenagers finding out they have cancer.

"While I was going through the treatment, I found no books for young adults about going through cancer or even something relatively similar," she said. "And so, I decided right after being diagnosed that I would write my own book."

'There's a lot more to this than smiling kids on the commercial'

Ramsey was a seemingly healthy seventh grader in 2018 when she started having pain in her leg. What her family initially believed was a dancing injury quickly turned out to be a malignant tumor.

Although osteosarcoma is rare, it is the most common childhood bone cancer, according to the American Academy of Orthopaedic Surgeons. Of the 1,000 new cases of osteosarcoma diagnosed each year in the U.S., about half are in children and teens.

She began writing around the time of her diagnosis as a middle schooler through 2020 "because nobody can really prepare you." for what is to come with cancer. Each chapter begins with a poem that she's written about her experiences and the loss of the kind of normal childhood that most kids get to enjoy.

"Sometimes when I dream, I can still see myself/Looking back at me, not a scar in view/long locks of gold falling past my shoulders/dancing around my room," begins one of her poems in the book.

Often, people don't see the tragedy and struggle, Ramsey said, behind the scenes of a battle with cancer: young children pushing baby strollers through a hospital wing while hooked up to chemotherapy pumps, teenagers graduating high school in a hospital bed or kids kept from home because of treatments and illness.

"I don't want you to have to experience it to understand — that's what I'm hoping the book will show — that there's a lot more to this than smiling kids on the commercial asking for money," she said. "You could be on that (hospital) floor right now, I have a feeling none of those kids are smiling."

Her book was published in June by Bell Asteri Publishing, a Fort Worth, Texas, publishing company that focuses on books written by childhood cancer patients and survivors and is available on Amazon and other bookselling websites.

About 9,910 children in the United States under the age of 15 will be diagnosed with cancer this year, and about 1,040 children under the age of 15 are expected to die, according to the American Cancer Society. Ramsey has lost five friends to cancer since she began treatment five years ago.

At CureFest, an annual rally for childhood cancer awareness in Washington, D.C., families each year send in the shoes of their children who have died that year to cancer. Last year, nearly 1,800 empty shoes lined the hill of the Washington Monument, as a powerful reminder of the toll of childhood cancer, Ramsey said.

"The first year I didn't understand it, but then I went back, and I saw my friend's shoes," she said. "It all kind of fell into place and knew this was something I needed to stick to, because if not, who would?"

Navigating a new normal

For Janette Ramsey, Alea's mother, managing osteosarcoma has not been fun.

"I think, interestingly enough, the whole time I kept searching for 'why, what's the purpose of this?'" Janette Ramsey said. "And I think through Alea, we've learned that our purpose is to support others."

Their new normal includes joining a "bizarre club" of families who are all fighting childhood cancer together, including several in the Upper Arlington community. Some who have lost children have even come over for the holidays, Janette Ramsey said.

"Once you're in it, it's a very positive place to be, even under the worst circumstances," she said of the closeknit group of families.

Throughout their Upper Arlington neighborhood, many homes have yellow ribbons tied around trees and mailboxes in support of Alea, and friends have helped to organize parties. Janette said in the year following Alea's 2018 diagnosis, they didn't spend any money on groceries because community members supplied meals.

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Alea Ramsey has continued school at Upper Arlington and just completed her junior year. She attended school in-person from the beginning of her junior year through December before she relapsed with cancer again.

The school even worked to set up a robot with a video camera so she could "attend" classes. And at a UA football game last September, the school held a fundraising evening where they sold shirts and childhood cancer patients like her were recognized.

Janette Ramsey said during the past five years, her daughter has gone from a quiet, shy middle schooler to a young woman who has spoken at CureFest and to U.S. legislators in her advocacy to raise awareness about childhood cancer.

"The transformation has been amazing — I do think that's probably the one blessing to all this is — she found her voice and she's making a pretty big difference," Janette Ramsey said.

Turning lemons into lemonade

Alea Ramsey said she has decided to turn her recurring battles with bone cancer into action — raising awareness for other children going through the same experiences.

Funding for researching childhood cancers, including forms with very low survival rates, continues to remain a small fraction of total funding, Ramsey and other advocates for expanded funding say. From 2008 to 2016, only $2 billion globally was allocated specifically for childhood cancer research, according to a 2019 study published in the Lancet Oncology journal.

In 2016 alone, the United States National Cancer Institute allocated $5.2 billion to different types of cancer research.

While Ramsey's osteosarcoma has a relatively higher chance of survival than some cancers, other children aren't as fortunate, she said, and a funding gap for research makes the problems worse.

"I was lucky and did not have a 0% chance (of survival) but there's always the possibility," Ramsey said. "And so, I want people to realize that you don't like understand that hope picture of it until you physically see it."

Proceeds from the sale of the book benefit her nonprofit organization, Bearing Hope, which sends children fighting cancer blankets and, every few months, care packages that include stuffed animals and games.

"I didn't realize how many kids were fighting," she said about her experience running Bearing Hope. "I would have never known that some of them are in elementary school or younger."

Janette Ramsey encouraged people who want to support childhood cancer awareness to consider purchasing the book or talking with elected officials about increasing funding for research.

While Alea Ramsey looks forward to normal teenage things — getting her driver's license, a tattoo and finishing school — she also looks forward to beating cancer.

"Eighth time's the charm, hopefully," she said.

@Colebehr_report

Cbehrens@dispatch.com

This article originally appeared on The Columbus Dispatch: Upper Arlington teenager publishes book amid eighth battle with cancer