‘This is cancer? It can’t be’
A rare cancer has fallen like a shadow over Naomi Wilke’s life. But the 7-year-old girl is all business as she sits on her bed, calmly coloring.
Around her hang murals bursting with reds, blues, yellows, pinks and purples. Vibrant shades of hope and joy, created between chemotherapy treatments.
Naomi glances up from her coloring book when a visitor admires the artwork in her room at Spectrum Health Helen DeVos Children’s Hospital. Wisps of hair frame a heart-shaped face and deep brown eyes.
“I color inside the lines,” she says with a little smile. “I’ve been doing that for several years.”
Naomi came by ambulance to the hospital three months ago, after a blood test revealed she had leukemia and a sky-high white blood cell count. Her doctor soon discovered she had not one, but two forms of leukemia.
That is extraordinarily rare. Of all children over the age of 1 who have leukemia, only 3 percent face such a double whammy.
She’s one of the best kids I’ve ever met. She has never complained about this.
The diagnosis wrenched Naomi from the ordinary ebb and flow of life as a first-grader. She traded her home in rural northern Michigan, near Torch Lake, for a hospital room in Grand Rapids, 160 miles away.
She missed the last weeks of first grade and the carefree days of summer vacation. She couldn’t ride the bike she won in kindergarten. Couldn’t plant her vegetable garden, swim, climb trees or play with friends.
She left behind her 14-month-old brother, Kenny, and four older sisters.
But she brought much with her, too. Crayons and coloring books. Imagination and creativity. And a resiliency that leaves her mother in awe.
Donna Norton spends her days and nights by her daughter’s side. She marvels at the way Naomi has made friends and settled into a new routine, even amid painful pokes, medications and hair loss.
“She’s one of the best kids I’ve ever met,” she says. “She has never complained about this. She does everything she’s asked to do, even if she doesn’t like it.”
Naomi is “mature beyond her years,” says Sharon Smith, MD, her pediatric hematology-oncology specialist.
“She is incredibly bright and very social. She is just a lovely, lovely little girl.”
‘This is cancer?’
Naomi’s mother can pinpoint the moment her carefree child became a cancer patient.
On April 22, she brought Naomi and her younger brother, Kenny, to the doctor for well-child checkups. She told the physician Naomi had recently developed several bruises. And little red dots spread across her chest and legs.
“It looked like she ran into a pine tree,” Norton says. She would later learn the spots were petechiae―tiny broken blood vessels caused by a low platelet count.
She was calm and interested in her surroundings and articulate from the start.
The doctor sent Naomi to a nearby lab for bloodwork. On the way home, before they even got the test results, Naomi developed a nosebleed so severe that her mother drove her to a local emergency room.
The doctor who treated Naomi for the nosebleed said the blood tests revealed that her platelets were extremely low and her white blood cell count, which should be 5,000-10,000, was 267,000. She had acute lymphoblastic leukemia.
“This is cancer?” Norton asked. “It can’t be.”
The doctor said they needed to go to Helen DeVos Children’s Hospital that day. Norton cried as she drove home, packed a bag and hurried back to the emergency room. Within minutes, she and Naomi were in the ambulance for the three-hour drive to Grand Rapids.
“It was the longest ride of my life,” Norton says.
Dr. Smith met Naomi the next morning in the Pediatric Intensive Care Unit. Naomi made an impression right away.
“She was a very unusual sight in the intensive care unit,” Dr. Smith says. “She was sitting up in bed and coloring and asking questions.
“She was calm and interested in her surroundings and articulate from the start.”
A bone marrow biopsy and spinal tap showed leukemia in her bone marrow, but not in her brain or spinal fluid. Naomi stayed in the hospital for her first week of chemotherapy.
On May 2, she went home for what was supposed to be a week break. But Dr. Smith called with bad news that cut her visit short. One week into therapy, her leukemia had switched to acute myeloid leukemia.
Even though we’ve been plucked out of our lives, there’s still life to be had.
Although Naomi’s form of leukemia, associated with a specific chromosome abnormality called t4:11, can transition to another in some cases, it usually happens much later. To fight both forms of leukemia at the same time required a change in tactics. Dr. Smith consulted research and an expert on “mixed lineage” leukemia to develop a strategy to combat the cancer.
“We decided her best cure rate would be getting her into remission with aggressive inpatient chemotherapy and then sending her for a (bone marrow) transplant,” she says.
Naomi spent most of the next three months in the hospital receiving chemotherapy. The treatments sapped her energy―and her spirits. At one point, she refused to leave her room for nearly a week.
Her mother coaxed her into the hall for a walk. Soon, they met child life specialist Rhys VanDemark, who turned the walk into an adventure. He and Naomi raced each other. They played hide and seek with her mom.
“It turned into a whole day. It really helped,” Norton said. “It helped with her just realizing that even though we’ve been plucked out of our lives, there’s still life to be had.”
Ever since, Naomi has been on the go at the hospital. She readily hops out of bed, grabs her IV pole and makes the rounds on the floor, visiting with nurses and other children.
Cards, a pig roast, a wig
Although far from home, Naomi feels the support of family and friends in the Torch Lake area.
Friends held a pig roast fundraiser in her honor. Students in classrooms throughout Kalkaska County made cards for her. A blue fleece blanket she received from her kindergarten teacher has become her go-to wrap when she sits in bed. So many people have sent crayons, markers and coloring books that her mother struggles to find a place for them all.
One day, she received a gift with a personal touch. Sharon Potter, the owner of Salon Nouveau, delivered a wig, made of donated human hair, from the charity Children with Hair Loss.
Although Naomi had picked out the blond wig in advance, she was too tired and in pain to show much enthusiasm at first. Her back hurt from a recent spinal tap and bone marrow biopsy, and she had just started a new round of chemo. She stared vacantly as Potter trimmed and fit the wig.
Potter braided the hair into two long pigtails. She told Naomi she looked like Anna from the movie “Frozen.”
And Naomi smiled.
With the leukemia in remission, Naomi will soon undergo the bone marrow transplant. Her medical team has found a donor with the help of the registry Be the Match.
She will have several rounds of chemotherapy and radiation to wipe out her immune system and will spend several weeks in isolation, with only a few visitors allowed.
But before that stage of her journey, she had time for one more trip home.
On a day in late July, Naomi runs across the backyard. She holds hands with her dad, Ken Wilke, as she steps along the sun-dappled Rapid River.
She climbs on a swing and pumps her legs, flying back and forth, back and forth. Her little brother, Kenny, toddles up to her. She sits on the grass and pulls him onto her lap. He gives her a kiss.
Naomi looks up at her mother.
“Remember before all this happened when we went to Torch Lake and there was a rope (swing) and I couldn’t let go?” she asks.
Her mom nods.
“Can I go in Torch Lake and just get my feet wet?” she asks.
Soon, Naomi, her parents and brother are driving to Torch Lake.
The water shimmers turquoise and blue beneath a brilliant summer sky. Naomi wades in, her floral dress swirling behind her.
“Be careful,” Norton says. “Don’t go far.”
As much as she wants to protect Naomi―and the port in her chest―she also wants her to enjoy this dose of lake time.
“It’s the best medicine there is,” says Naomi’s dad.
“It’s perfect,” Norton agrees.
Returning to Grand Rapids is always hard. She tries to help Naomi focus on the positive. Reminds her of the friends they have made, the wonderful, caring people they have met. Especially the nurses. She calls them “the heartbeat” of the hospital.
But the city feels a long way from this glacier-carved lake. Naomi’s roots run deep here. Her family history dates back 150 years in the area.
Norton looks forward to the day when Naomi will be done with chemo. Done with cancer. And back home where she belongs.
“Torch Lake is her birthright,” she says. “This is our home.”