From Grief Comes Knowledge: Family of Pediatric Brain Tumor Patient Shares Their Story

Jessica Horak Stout and her father Walter Horak co-wrote a book about their son/grandson’s Ryland’s year-long treatment for Diffuse Intrinsic Pontine Glioma (DIPG) and the period after his death at age three.

Jessica Horak Stout and her father Walter Horak co-wrote a book about their son/grandson’s Ryland’s year-long treatment for Diffuse Intrinsic Pontine Glioma (DIPG) and the period after his death at age three.

There is no greater pain than losing one’s child, but Jessica Horak Stout has derived something positive from her son Ryland’s passing – a teaching moment for medical experts on what it’s like to grieve through a parent’s eyes.

Horak Stout co-wrote a book with her father Walter Horak that details the year that Ryland was treated for Diffuse Intrinsic Pontine Glioma (DIPG), a rare and fatal tumor of the brainstem, as well as a period after his death at age three. Feel Me Brave: A Chronicle of Illness, Loss, and Living Beyond is comprised of chapters formed from Jessica’s journal entries and Walter’s poetry and illustrations. The pair spoke about their experience to dozens of physicians, nurses, chaplains, and other clinicians and caregivers during a July 13 session of the Pediatric Advanced Care Team (PACT) Rounds at Boston Children’s Hospital.

“I started by communicating Ryland’s medical updates to friends and family over a shared website, and it became much more,” says Horak Stout, who sought consultations at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center during her son’s illness. “Writing was often the only chance I had to step away from the daily struggles, look an impossible situation in the eye, and put words to the madness happening to us.”

“Feel Me Brave” features Walter Horak’s illustrations.

The monthly PACT Rounds, which draw attendees from Dana-Farber, Boston Children’s Hospital, and other local institutions, present clinicians, chaplains, child-life specialists, and support staff with evidence-based approaches to caring for children with serious illnesses, as well as their families.

Families hold a unique perspective that clinicians and caregivers can learn from, according to PACT Rounds course director Christina Ullrich, MD, MPH, a pediatric palliative care physician and member of the PACT team at Dana-Farber/Boston Children’s.

As the authors explained to the group, the book was truly a family affair. Natasha Horak, Jessica’s sister, designed the cover with help from Ryland. The title came from a conversation Jesssica had with Ryland before leaving on one of their frequent trips from their Vermont home to Pittsburgh for treatment.

“I asked him if he would like to take a special doll that a friend had given us,” Horak Stout explained, “and even though at this point he was already speaking in complete sentences, he just looked at me and said, ‘Yes, feel me brave.’ He knew that the journey would involve shots and other painful procedures, and the doll would give him comfort and courage.”

These are the same attributes the co-authors derived from their writing, Horak Stout added, and through speaking at hospitals and colleges since the book’s publication in 2015.

“Early on, we decided that this would be the most important work we ever did,” said Walter Horak, a sculptor by profession. He said that while writing poetry about Ryland was a way to deal with the torment his family was going through, publishing it provided an opportunity to offer solace to others.

“The clincher for us was when a friend used my journal entries for a nursing class she was leading, and told it really enhanced things for her students,” said Horak Stout. “A book, it seems, was destined.”

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