Despite living with leukemia for half her life, Lola Deyoung lives in a magical world.

She’s fending off the disease with a powerful shield of her own design—an ever-present smile, positive attitude, the love and prayers of family and friends, winning bingo cards, a meeting with a real-life king and queen and a bone marrow transplant donor she refers to as her “unicorn.”

Diagnosed with acute lymphoblastic leukemia at age 5, little Lola has suffered two central nervous system relapses. Her second came right around the time she met the Dutch King and Queen when they visited Spectrum Health’s Helen DeVos Children’s Hospital last June.

Sitting in a recliner in a 10th floor room at the children’s hospital on a recent Friday afternoon, Lola cuddled up with a teddy bear and cozy pink blanket as liquid dripped into her veins from a bag attached to an IV pole that glinted in the afternoon sun.

The IV is delivering an immune booster; the mid-winter sunlight, a spirit booster.

It may not be a happy place for many children her age, but Lola, 10, makes it one. She plays a game on the iPad, searching for lost objects, then turns her attention to the on-screen bingo game.

“I-24,” the voice on the television monitor calls out as the immune-boosting serum seeps into her body.

I-24 is a match. But finding a suitable bone marrow match Lola needed to survive, not nearly as simple. The family searched and waited, for months.

With no promising leads, the family hoped their daughter-to-be might be a match. But when baby Willa arrived on August 22, they learned a match was not meant to be.

Instead, Lola and her family opted for the closest possible match and accepted cord blood from an infant girl in Germany.

“We never did find a perfect match; we had to go with an adequate match,” said Lola’s dad, Matt, sitting in a chair next to his daughter. “She has an infant immune system.”

Thus, the need for monthly visits to Helen DeVos Children’s Hospital for immune-boosting infusions. If only medical guarantees and confidence could be so easily infused.

“I don’t think we ever get to raise a victory flag,” Matt said. “The doctors told us after a year or two we can start to breathe a little easier, but she’ll be high-risk forever. It’s the most challenging thing in the world as a parent. I don’t think I can even put it into words.”

A wise child

Matt said Lola is usually the one to remind him and his wife, Lindsey, that everything will be OK, a gallant gut instinct from a girl who should be wearing emotional galoshes to insulate herself from all that life has spilled upon her in the past few years.

B-10.

“I can’t believe she’s my daughter,” Matt said, watching his 10-year-old miracle eyeing bingo numbers on the television screen. “She is definitely amazing. But it can be heart-wrenching at the same time. She’s usually the one to tell us to pull it together.”

When she was in the intensive care unit following her Nov. 25 transplant, doctors told Lola’s parents they needed to put her on a ventilator.

“We were very close to losing her,” Matt said, his voice quivering with emotion. “During the transplant process, the extreme amount of chemo and radiation she had caused internal bleeding in the organs. The only thing that can heal that is her own body. She spent a week in ICU. If her transplant hadn’t taken root when it did, I don’t think she would have made it.”

The five years of turmoil, and these days still, remind the Deyoung family of the fragility of life.

“We’ve learned to be thankful in the moment instead of waiting to be thankful when something good happens,” he said.

G-55.

The family’s Facebook page, Team Lola, shows the Lola of five years ago with long, flowing blonde hair, sitting in a hospital bed cuddling the bear that is with her on this day.

The hours and days she’s lived in hospitals? Too numerous to numerate.

I told you about the dark shadow before. It moved into our house when I found out I had to have a transplant. He made me really, really sad all the time. But when I stopped worrying, he went away.

Lola Deyoung, 10
Leukemia survivor

After the transplant, she called the hospital home for two months. Matt documented the journey on Team Lola.

“When people ask how Lola is doing, I usually say, ‘Great,’” Matt wrote on the Facebook page. “We need to remember the miracles it took just to have her with us today. I think the biggest challenge of this new chapter in our lives is that there is no sense of security. The reality is that Lola has a 50-50 chance of a cancer relapse and no matter how much faith we have, or miracles we have seen, we cannot stop being simultaneously grateful and scared.”

Out of Africa

When the the family did missionary work in Tanzania, Africa, five years ago, Lola first started showing symptoms.

“She had a low-grade fever, pain in her limbs and she stopped walking,” Matt recalled. “We lived a three-day drive from any kind of reliable blood test. For over a month they were treating her for malaria. We didn’t have anybody to help guide us to the right solution.”

The diagnosis in Africa came in as mononucleosis. The missionary agency purchased flights back to the United States for the Deyoung family so Lola could rest and recover.

Upon arrival, the family went to Helen DeVos Children’s Hospital, where the real diagnosis came to light—acute lymphoblastic leukemia.

“We had been in Tanzania for five months,” Matt said. “We were in the hospital room with no possessions. We were in Crocs and dirty shirts. Her cancer was so far along they had trouble getting cells out of the bone marrow because it was so packed with cancer cells. She was in a bad way.”

Little Lola underwent two and a half years of chemotherapy. Her beautiful blonde locks disappeared.

She relapsed a month later, then did another two full years of treatment.

Shortly after meeting Dutch King Willem-Alexander and Queen Maxima during their visit to Helen DeVos Children’s Hospital on June 2 of last year, Lola relapsed again.

The only option after two relapses? A bone marrow transplant.

She’ll continue to have monthly checkups far into the future.

“Because of a lot of different risk factors, she has to have rounds of chemo even a year after the transplant in case anything was missed in the spinal fluid,” Matt said. “She’s close to the threshold of not being able to receive any more because she’s already received so much.”

Another match

N-40, N-38, Lola’s eyes remain glued to the bingo card.

“What did they say?” she asks. “N-30-what?”

Nurse Amy puts a blood pressure cuff around Lola’s arm and a thermometer in her mouth.

The Child Life bingo caller pauses the game for a joke. “How do you stop an elephant from charging?”

“I don’t know, let’s just do the next number,” Lola says, realizing her treatment is concluding, but wanting to finish the game.

“O-72,” the announcer says.

Lola gasps. Her eyes light up.

“BINGO! BINGO!” she screams.

Volunteers roll in with a cart full of toys—books, notebooks, stuffed animals, Legos, games. Lola picks up many items, and examines them closely. She settles on a Lego Friends kit.

“I have this set at home, but I lost most of the pieces to it,” Lola said.

It’s a reminder, it seems, of her life these days. Reclaiming the missing pieces—like living at home with her family, playing, enjoying a kids’ life, and slowly rebuilding a sense of future.

Although much of her childhood has been stolen by cancer, it hasn’t snatched her spirit.

Lola said she’s learned much through her journey, including that worrying about something is usually much worse than the real thing you’re facing.

“It’s been very, very interesting,” she said in a 10-year-old voice whose wisdom echoed decades beyond its years. “I told you about the dark shadow before. It moved into our house when I found out I had to have a transplant. He made me really, really sad all the time. But when I stopped worrying, he went away.”

Sharon H. Smith, MD, a pediatric oncologist at Helen DeVos Children’s Hospital, said Lola’s attitude has bolstered her recovery.

“No question that her attitude has been an asset to the rigors of her therapy,” Dr. Smith said. “She and her family have been through an incredibly difficult journey and they have approached each challenge with energy, determination and a positive attitude.”

Dr. Smith said prognosis is difficult because Lola’s clinical scenario is “quite rare,” but she is cautiously optimistic.

“Lola will require lifelong follow-up,” she said. “Her risk of recurrence would most likely be in the first five years, but she will need to be observed for side effects of her therapy for life.”

She, like many nurses and Child Life team members at the children’s hospital, said caring for the little girl with the large blue-rimmed glasses is a joy.

“This is truly an amazing family who has always been thoughtful in their decisions about what is best for their family and Lola,” Dr. Smith said. “They are a joy to have in our clinic.”