It began with a dance party and a pie in the face. It ended with a run through a victory banner.
In between, 7-year-old Naomi Wilke lived in isolation in a room at Spectrum Health Helen DeVos Children’s Hospital as she received a bone marrow transplant. After she took chemotherapy drugs to destroy her bone marrow―and any leukemia cells that remained―she received an infusion of fresh marrow donated by a stranger.
It was tough, tearing down and rebuilding her immune system.
“And boring,” says Naomi.
During her four weeks of isolation, she kept boredom at bay by doing lots of crafts, watching TV, coloring and playing games with Child Life specialists and volunteers. She has advice for other kids in a similar situation: “Keep busy. And if you have nothing to do, ask for a volunteer.”
(Naomi) is resilient. She has this very severe and tough disease, but I think she wants to be in control of her life.
In April, Naomi began her battle against two forms of leukemia.
Since her bone marrow transplant, her white blood cells and platelets have engrafted, says Ulrich Duffner, MD, a pediatric blood and marrow transplant specialist. There has been no sign of graft-versus-host disease, a complication in which donor cells attack the patient’s organs.
He continues to monitor Naomi, and she still takes nearly a dozen medications every day. Like many second-graders, she doesn’t like to swallow pills. And she struggles to drink as much water as her kidneys need.
Writing her story
For Naomi, that means more freedom―and energy―to do crafts, color and play. She and her mom, Donna Norton, are staying in an apartment at Spectrum Health’s Renucci Hospitality House while Naomi returns for regular checkups.
On a recent afternoon, she plays with two tiny monkey figures and a chunk of Play-Doh. She rolls the dough into a ball, buries one monkey in the center, and uses the other to dig it out. Then, the monkeys switch places.
“This one almost died from it, because his mouth was open and he got Play-Doh in his mouth,” she says.
She flattens the dough into a round bed for the monkeys.
“Now, they get to relax,” she says.
Norton shares the good report they got from Naomi’s latest bone marrow biopsy.
“She’s starting to make her own platelets now,” she says. “That’s the first time she’s done that in five months.”
Naomi opens a diary and begins to write her story.
At the top of the first page, she prints “April 22, 2016.” That’s the day she became a cancer warrior.
Pausing only to ask how to spell the big words, she writes in neat penmanship about how she became so tired at school, she fell asleep at lunch. Later, she had a severe nosebleed. Her mom took her to a local emergency room. Then, they went by ambulance from her home in Torch Lake, Michigan, to Helen DeVos Children’s Hospital.
She looks up from the diary.
“It was scary,” she says.
Putting ‘killer cells’ to work
Her doctors soon discovered Naomi faced two forms of blood cancer: acute lymphoblastic leukemia and acute myeloid leukemia. They determined a bone marrow transplant offered the best chance at defeating them.
She began conditioning, a series of intense chemotherapy treatments. The process has two purposes, Dr. Duffner says: to make the patient’s body ready to accept the donor cells and to destroy any leukemia cells that may have survived previous chemo treatments.
You have to find the good in every situation, or it will control you.
Her medical team searched the registered bone marrow donors worldwide to choose the one that offered the best hope of defeating her leukemia. They analyzed human leukocyte antigens, markers on the surface of cells, and found “a great match,” Dr. Duffner says.
They also examined the potential donors’ immune systems. In recent years, transplant research has honed in on the power of “natural killer cells,” which can recognize and kill cancer cells. People have varying numbers of killer cell immunoglobulin-like receptors, which are found on the surface of the natural killer cells.
“There are good data that show if you pick a donor who has a lot of these activating switches, it makes his killer cells more ready to fight,” Dr. Duffner says. “That helps to reduce the risk for the (acute myeloid leukemia) to come back after the transplant. And it’s a significant reduction―it’s like 10 to 20 percent less.”
Other factors also come into play, such as the donor’s age, weight, blood type and exposure to the CMV virus.
Because many elements can affect a transplant’s success, doctors hope for a wide range of matches, so they can find the best combination possible.
It makes Dr. Duffner grateful the global donor pool has grown from 3 million to 23 million in the years that he has worked with transplants. And it makes him advocate for more volunteers, particularly African Americans, Latinos and other minorities, who are under-represented in the donor pool.
The bigger the donor pool, the better the chance of finding the perfect match for Naomi and others who face life-threatening illness.
The transplant, in destroying the old immune system and creating a new one, leaves a patient vulnerable to infection. That’s why Naomi had to spend a month in isolation.
Few visitors were allowed in her room. All visitors, nurses, doctors and staff members wore a gown and mask.
While the entire children’s hospital has pure filtered air, the transplant rooms include an extra protective feature, Dr. Duffner says. Visitors first go into a small entryway before opening the door to the room.
When the door opens, the positive pressure system causes a little burst of air to exit the room.
“The idea is you don’t suck in anything that could increase the risk of infection,” Dr. Duffner says.
‘I didn’t fight alone’
Naomi’s strong spirit helped her through the transplant.
“She can be proud of how she helped a lot on her side,” Dr. Duffner says. “I praised her a lot, and for good reason.”
She struggled to eat, especially when she developed sores in her mouth and throat. She stayed active, getting out of bed to play. That reduces infection risks in the lungs.
She kept contact with other patients by playing tic-tac-toe and drawing pictures on the glass door. She went through dozens of gel pens as she filled coloring books.
“She is resilient,” Dr. Duffner says. “She has this very severe and tough disease, but I think she wants to be in control of her life.”
It took a team to get Naomi through her transplant, her mom says.
She created a poster with a message in the center that reads, “I didn’t fight alone.” Surrounding it are signatures and notes from nurses, doctors, staff members, patients, family and friends who cared for Naomi and made her days brighter.
“We made a lot of good friends and met a lot of good people,” she says. “You have to find the good in every situation, or it will control you.”
Naomi chimes in with her approach to handling the rough days: “You have to think about the good things that will happen.”