Virginia Beach mom started nonprofit to help families dealing with childhood cancer

Crissy Johnson used journaling to document her thoughts, fears, revelations and heartaches during her son David’s cancer journey.

She compiled a stack of 15 paper journals, replete with details on treatments, medications and key caregivers, throughout the years. Johnson found that pouring her heart and soul into a journal helped her cope and provided a safe, creative and cathartic outlet after her son was diagnosed at 18 months old with neuroblastoma, a cancer that develops from immature nerve cells.

“I spent a lot of moments in the bathroom silently crying, but then put on my happy face to help get the rest of the family through,” she said of being in “survival mode.” “We just do what we have to do for our children.”

David, now 8, is cancer-free. He’s a Virginia Beach third grader who loves to play sports. He checks in with his oncologist every six months.

But it was the first four years of his life — in and out of Children’s Hospital of The King’s Daughters — that rocked the world of Crissy and her husband, Rodney.

Six rounds of high-dose chemotherapy required David to stay in the hospital for 26 days each time. Radiation treatment meant 20-day stints. Tumor resection and immunotherapy equaled more time away from his family, which includes three older siblings.

Johnson, a former medical assistant, said having some familiarity with medical jargon helped her understanding, which was both good and bad as she learned and digested more about the tumor attached to her son’s left kidney.

“I wasn’t comfortable with saying the word ‘cancer’ for a long time,” Johnson said.

But the words came when she wrote about her family’s experiences in two books, a memoir published in 2018, “Fighting for King David,” and “Residue of War,” an anthology of mothers’ stories, released in 2022. Both are available for sale on Amazon.

In 2020, she created MomAdvocate Foundation, a nonprofit aimed at helping other families affected by childhood cancer.

“I realized that the resources we needed were limited,” she said.

Crissy Johnson recollected the financial burden they endured to cover the cost of fuel for trips back and forth to the hospital and the added cost of takeout meals for the family of six.

That’s what led her to start the Fuel For The Journey program, which provides gas and grocery gift cards to local families in Hampton Roads with a child undergoing cancer treatment.

And as a nod to David, the foundation also hosts King David’s Costume Drive. David wore a Superman costume throughout his treatments, which Johnson said “allowed him to be an actual kid.”

Now in its fifth year, the foundation received more than 100 donated costumes last fall for pediatric oncology patients in treatment at CHKD to wear, Johnson said.

“We believe that every child deserves to experience the joy of dressing up and letting their imagination run wild,” the foundation’s website says.

Johnson volunteers her expertise to help other people turn their journal entries into books. All she asks for in return is a donation to the foundation.

“Community is everything to me,” she said.

Nikysha Noris read “Fighting for King David” during her son Xavier’s cancer treatment, which began in February 2021. She started her own charity event, Run for Xavier, to help others dealing with pediatric cancer. She is grateful another Virginia Beach mother shared similar experiences, including developing support outlets.

“We spoke the same language,” Noris said.

Sandra J. Pennecke, 757-652-5836, sandra.pennecke@pilotonline.com

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If you go

What: 2nd Annual Cancer Awareness Gala, a night dedicated to celebrating survivors, honoring caregivers and supporting those still fighting.

When: 6-9 p.m., Sept. 15

Where: Luxury Affairs Event Center, 4010B Victory Blvd. Portsmouth

Tickets: $75-$100, Momadvocatefoundation.org/events