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Father publishes his daughter’s cancer diary after her death

April 15, 2018

Jerry Davis, seen in a Thursday, March 29, 2018 photo, helped fulfill his daughters' dreams by taking her cancer diary and publishing into a book. (Megan Raymond/The Daily Times via AP)

MILLSBORO, Del. (AP) — Heather Davis Johnson was a warrior.

That’s what her father, Jerry Davis, a Millsboro resident, says.

Johnson was diagnosed with colorectal cancer in 2010. She battled the disease for over five years before dying on Jan. 1, 2016, at age 43. She left behind a husband, Steve, and two daughters, Grace and Katy.

“She just met this challenge with tremendous courage and determination,” Davis said. “And she fought and she fought and she fought.”

She kept a diary on Facebook and CaringBridge.org throughout her disease with the intention of publishing it after she was cured.

Davis promised his daughter that, if she would not survive, he would publish her posts in the form of a diary.

He fulfilled his daughter’s promise and published her writings, titled “The Starfish Chronicles,” earlier this year, for sale on Amazon for $19.95.

Johnson’s diary is a tribute to her, Davis said, and carries a simple message: Never lose hope, and keep a positive attitude.

“I fulfilled my promise,” Davis said. “I think the book has sold about 200 copies so far, but it is not about making money, it is about getting the word out, and a few hundred dollars of royalties, they’ll go to Grace and Katy (Johnson’s daughters). But it is not about the money. It’s about getting the word out.”

In the diary, Johnson stresses the need to be one’s own advocate.

Johnson, 38 at the time, first started to complain of symptoms when she was pregnant with her second daughter, Katy, and mentioned it to her OB/GYN, who told Johnson she was too young to have cancer.

A gastroenterologist told Johnson the same thing: She was too young to have cancer.

But after Katy was born, and the symptoms persisted, Johnson knew something was wrong, and that is when she was diagnosed with Stage 4 metastatic colon cancer on Nov. 30, 2010.

After she was first diagnosed was when Johnson learned the importance of speaking up.

“She recognized that, almost immediately, if you are a patient, you have to be your own advocate, your very strongest advocate,” Davis said. “Learn whatever you can about your disease, the options, and it’s OK to ask questions. Talk to your doctor, and if necessary, challenge him or her and say ‘Are you sure?’ ‘Have you thought about this’”

Throughout the diary and her experience with cancer, Johnson remained positive.

Right before her first Thanksgiving after being diagnosed, Johnson had an encounter with a cashier at a grocery store, who was speaking negatively about the holiday and how the cashier had nothing to be thankful for.

Johnson took exception to this.

She explained to the cashier that, even after having had a cancer diagnosis for a year, Johnson still had a lot for which to be grateful.

“I may still be in this fight, but as I said, I have a LOT to be thankful for this year,” she said in the book.

Johnson had an extended network of support while going through cancer treatments, too.

The group, nicknamed The Tribe, helped Johnson along the way. The group was also involved in philanthropic causes, raising over $20,000 for Relay for Life in Harford County, Maryland, Davis said.

In the book, Johnson takes time to thank the members of her support group.

“Tonight I am thankful for my amazing Tribe that surrounds me every day with love,” she said in the book. “This includes my family, my friends, my church, and my incredible teams at Johns Hopkins and Sloan Kettering and the countless people who have lifted me up in prayer over these last two years. My life is truly blessed by each of you.”

A close support group is very important for anyone dealing with cancer, said Sean Hebbel, LCSW, program director for The Cancer Support Community for Delaware.

A support group can often consist of friends, family or people from a church community, Hebbel sad.

“I would say it is crucially important to deal with the isolation by getting a support network,” Hebbel said, “no matter how you frame that around you.”

Members of Johnson’s support group still check in on her daughters to make sure they are doing OK, Davis said.

The book though, Davis said, is not necessarily a sad book.

“The ending, of course, is sad, but it is also inspirational,” Davis said. “Parts of it are funny, they’ll make you laugh out loud, parts of it. Parts of it will make you cry. But, overall it will inspire you about the courage of being a mother in her fight for her life.”

Davis said his daughter was able to inspire others while going through her cancer treatments.

She gave a speech at Johns Hopkins to the oncologists before they started their rounds. That speech, Davis said, was a standing-room only speech, and after she was finished, Johnson got a standing ovation.

“Life is to be enjoyed NOW,” Johnson said during her speech that was reprinted in the book. “Tomorrow will wait. Each day is a celebration. Each day is a chance to get a running jump before hitting the slip-and-slide, a chance to jump in the leaves, a chance to roll down a hill, a chance to dance in the rain, a chance to take in all the small things. ... We should not wait until some future date or event to live. Living happens now. Hope happens NOW.”

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Information from: The Daily Times of Salisbury, Md., http://www.delmarvanow.com/

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