Cancer of blood, bone marrow changed girl’s routine, but she’s shining again

Looking back at old photos, Justin Hayden can see the difference in his 5-year-old daughter’s face.

In those Christmas photos from 2016, Gwenyth’s long, golden hair framed puffy cheeks. The glands in her neck were swollen, too, from what Hayden believed was a lingering cold.

“It was so gradual that, at the time, I didn’t notice it,” Hayden said.

Now, a year after then-4-year-old Gwenyth was diagnosed with leukemia, Hayden can see physical toll cancer was inflecting on his youngest daughter.

It all started with a seemingly harmless cold.

Gwenyth caught a cold in early December 2016. She seemed to get a little better, only to get knocked down by the bug again. On Christmas Day, a typically energetic Gwenyth was tired and lethargic. She spent most of the day snuggled on her dad’s chest, sleeping while her cousins played. That’s also when Hayden discovered bruises all over Gwenyth’s body — bruises she couldn’t remember getting.

A trip to urgent care resulted in a sinus infection diagnosis and an antibiotic prescription. When Gwenyth’s health failed to improve, she was given a stronger antibiotic.

Finally, after a snowstorm that closed the pediatrician’s office, Gwenyth got in to see her doctor. He immediately sent her to Randall Children’s Hospital at Legacy Emanuel Medical Center in Portland.

“As soon as they looked at her, they knew what it was,” Hayden said.

Gwenyth was diagnosed with acute lymphoblastic leukemia — a cancer of the blood and bone marrow, in which the bone marrow makes too many immature white blood cells. It’s the most common type of cancer in children, adolescents and adults younger than 20, according to the Leukemia and Lymphoma Society.

Chemotherapy began right away. The first month of high-dose chemo is expected to knock the leukemia into remission. For Gwenyth, that didn’t happen. As a result, she was deemed “high-risk” — a designation that came with a more intensive treatment regimen.

For 10 months, Gwenyth underwent IV chemotherapy three to five times a week. Fevers landed her in the hospital for overnight stays. Sepsis nearly killed her.

After early setbacks, Gwenyth started to respond well to treatment. After months of chasing side effects from the chemotherapy with various medications, Gwenyth found relief — and eliminated a handful of medications — with cannabidiol products.

“It just changed her whole quality of life,” Hayden said. “That set the tone of her feeling better.”

In October, Gwenyth entered the maintenance phase of her treatment. She takes oral chemotherapy drugs daily and, every four weeks, heads to the hospital for IV chemotherapy. She’ll continue that routine until April 2019, with labs every month or two to monitor her condition.

“I’m very anxious before every lab,” Hayden said. “That fear and anxiety will probably last for the rest of her life — as long as I’m alive.”

Should Gwenyth’s cancer return, her older sister, Rilyn, 9, is a bone marrow match. The family had Rilyn tested after learning Gwenyth was high-risk, which comes with a higher risk for recurrence, Hayden said.

But since Gwenyth is responding well to her current treatment, the family is adjusting to their new normal.

“We’re definitely hopeful because of how well she’s done and how well she continues to do,” Hayden said.

Gwenyth, who turned 5 in June, missed the start of her kindergarten year but was finally able to join her class at Lake Shore Elementary School last month. The school is holding a fundraiser this week to benefit the Leukemia and Lymphoma Society in Gwenyth’s honor.

“She’s really loved school,” Hayden said.

Gwenyth is still building her endurance for school; she only attends in the afternoons for now. Her energy levels are good most of the time, but she occasionally experiences side effects from her medications, particularly the steroids, Hayden said.

But, for the most part, Gwenyth’s personality is shining again after a tough year.

“She’s a happy kid and loves to play and is carefree,” Hayden said. “She’s amazing.”