Madison Pflug wore a colorful butterfly shirt to a recent appointment at Spectrum Health Helen DeVos Children’s Hospital.
It’s a fitting choice of attire for the 13-year-old, after living a cocoon-like life following two bone marrow transplants, one in 2012 and the next, three years later.
But these days, Maddie is free. Like the butterfly adorning her shirt. She’s free to go to school, hang out with friends, go to amusement parks and restaurants.
She has her life back.
It’s been a long journey for Maddie, who was diagnosed with cancer as a toddler.
“She never had anything more than a cold for her first couple of years of life,” said Maddie’s mom, Amy. “When she was almost two and a half, she got what we thought was a sinus infection. After a couple of rounds of medication, it kept getting worse.”
The family lived in Illinois at the time. While visiting extended family during a move from Illinois to Ohio, Maddie started having difficulty breathing while sleeping. Then her face swelled.
A shocking diagnosis
Amy and her husband, Dan, took Maddie to a children’s hospital in St. Louis, about an hour away. After blood tests and imaging, a doctor diagnosed lymphoma, cancer of the lymphatic system, which is part of the immune system.
“We had stopped to visit some family and it turned into a cancer diagnosis in the middle of the country,” Amy said. “She had a lemon-sized tumor in her chest. We stayed there a couple of months to get her stable.”
Because of its location, doctors couldn’t remove the tumor. Maddie underwent seven months of intense treatment in Cincinnati.
“Thankfully, chemotherapy and steroids shrunk it,” Amy said.
When Dan got a pastor job in Michigan in 2007, the family moved to Montague, Michigan, to be closer to Helen DeVos Children’s Hospital, where Maddie continued regular checkups.
“At that point they assumed she would be cured and this would not come back,” Amy said. “But when she was 8, we got the bad surprise that it did come back. At that point it was acute lymphoblastic leukemia.”
Chemotherapy had held the disease at bay for a time.
“She had a sinus infection that wouldn’t go away, and she started coughing more in her sleep,” Amy said. “One day, I noticed the lymph nodes in her neck were really puffy.”
Tests confirmed cancer had returned.
“Because it came back, the doctors said it showed them it was a genetic problem and it would just keep coming back,” Amy said. “That’s when they recommended a bone marrow transplant.”
Little Maddie underwent full body radiation to kill off her own immune system so it wouldn’t reject the transplanted bone marrow.
On June 6, 2012, doctors transplanted baby cord blood into Maddie’s body. She did well for several years, but the family lived in fear, knowing she could suffer another relapse at any time.
Their fears came true. Cancer returned in 2015. Maddie underwent another bone marrow transplant, with her mom, Amy, as the donor.
And so far, success.
“We’ve had great numbers,” said Maddie’s mom, Amy. “Her percentage of donor cells is hanging around 99 percent or so. It’s exciting.”
Maddie and Amy have been visiting Helen DeVos Children’s Hospital recently so Maddie can get a fresh dose of baby immunizations (her immune system was intentionally wiped out prior to her bone marrow transplant so her body wouldn’t attack her new cells).
Through the trials
Maddie rolled up her denim cutoffs as Colleen Gardner, RN, rubbed numbing cream on her legs. She chose to get all three shots at once—two in her left leg and one in her right.
She rubbed the tops of her thighs after the injections.
“If those things happened one at a time, that would really hurt,” Maddie said. “When it’s all at once, you can only feel one.”
Although the pokes weren’t pleasant, Maddie has trooped through her disease, and her treatments, like a soldier marching to a deeper drum beat.
She hasn’t complained, despite the hand grenade-like health problems lobbed into her life’s path.
This past summer, she spent time with her grandparents, in a Maddie-esque town name—Defiance, Ohio.
She searched for Petoskey stones with her family on a trip to Northern Michigan.
She’s learned to recognize patterns, in stones, and in her own life’s journey.
“I could hear the waves when I was falling asleep,” Maddie said of her up north camping trip. “I brought back like 20 Petoskey stones. Once you know the pattern, you find them really easy. You just sit down and look at all the stones getting wet from the waves. They’re everywhere. It’s impossible to go back without one if you just look for the patterns.”
Her parents know the pattern. They knew the circular-like journey of their daughter’s battle with leukemia. Of feeling like they’re winning, and then suddenly losing again.
“When she relapsed the first time there was this deep grief,” said Maddie’s mom, Amy. “We thought we were done with it and here it was back. We felt disbelief that we were entering this again. When the first transplant failed, we knew we might have to face losing her for real.”
Living for today
The family’s motives changed. They lived for one thing. Today. Tomorrow reflected like a blinding mirror, casting glare on something they may never see.
“There was no way to predict what was going to happen next,” Amy said. “I think most people in cancer life learn this. We keep learning over and over to make the most of today and make plans loosely because you never know when it’s going to change. Just savor the good days and moments that you’ve got.”
Maddie has grown up learning the same.
Now an eighth-grader at Walker Charter Academy, she savors the simple things. Like being able to attend school at all. During her transplant journey, and recovery, she couldn’t be around her friends, or her school, for fear her weakened immune system could not protect her from potentially fatal infections.
She couldn’t even be around her sister, Sydney, during both transplant experiences. The siblings talked on walkie-talkies through the hospital room window.
Ulrich Duffner, MD, a Helen DeVos Children’s Hospital pediatric blood and marrow transplant specialist, said it’s rare for patients to need a second transplant.
“Out of the 258 transplant procedures we did so far, I would say 10 have been a second transplant,” Dr. Duffner said. “A second transplant carries significantly more risks.”
Maddie’s body rejected the cord blood graft she received during the first transplant, according to Dr. Duffner, a rare but life-threatening complication.
“But then her own bone marrow function recovered,” Dr. Duffner said. “Unfortunately, three years later, the leukemia/lymphoma relapsed. At that time, we still had no good-enough, matched, unrelated donor and we decided to do a second transplant with her mother as donor, which used to be a procedure with significant higher risks compared to a ‘standard’ bone marrow transplantation.”
Maddie tolerated the procedure well.
“She is now two and a half years past the second transplant and most of the bad events happen during the first two years post-transplant,” Dr. Duffner said. “On the other side, the relapse after the first transplant happened after three years, so I’m hoping more time will go by and it will become more and more likely that she is definitely cured.”
Maddie feels cured.
And David Dickens, MD, Maddie’s long-time Helen DeVos Children’s Hospital oncologist, believes she is. Despite the difficulties.
“It is incredibly rare to require two bone marrow transplants,” Dr. Dickens said. “It is even more unusual to be cured with the second one after the first didn’t work.”
Maddie’s faith and family may have had much to do with her positive outcome, according to Dr. Dickens.
“Fortunately, Madison is exceptional in all of the best ways,” Dr. Dickens said. “She appears to not only have beaten her cancer, but she did so without letting the process of her treatment define her. She is a remarkable young woman who is a great positive example for all with a pair of incredible parents who should be very proud.”
A royal recovery
Maddie can swim again. Eat out in restaurants again. Go to pizza parties again. Everything is as it once was, except perhaps, her perspective.
“I trust God more for sure,” she said, sitting on the exam table after her immunizations. “And I’ve definitely grown closer to my mom, especially through the second transplant.”
If they find themselves thinking the same thought, or saying the same thing, the transplant partners jokingly say to each other “same cells.”
“I’ve grown to understand more of how God’s plan works,” Maddie said. “You can pray for something and you can ask for it, but it ultimately comes down to what He planned. But whatever bad things happen He totally uses it for the good.”
Despite so much loss and missing out on childhood experiences, Maddie says she wouldn’t trade her cancer experience. For anything.
“If I had the option to restart my life and not have the cancer or the realization, I wouldn’t do it,” she said. “More good things came of it than bad. I have more friends, definitely all the hospital people. I went to Camp Catch-A-Rainbow, and I got to meet the king and queen.”
In 2015, while Maddie underwent treatment, the Dutch king and queen visited Helen DeVos Children’s Hospital. Queen Maxima stopped in to sing “Roar” by Katy Perry with little Maddie.
“That was awesome,” Maddie said.
Amy said she and her husband are proud of their little fighter, for leading the way through a jungle of fear. It’s no wonder Maddie loves safari themes, and has her room decorated as such.
“She’s inspired a lot of people, even adults who are going through cancer,” Amy said.
Now that she has her life back, and doing simple things she couldn’t before, Maddie is focused on her future.
It’s more secure these days. More certain she’ll have a future.
“I want to be a zookeeper or a zoologist,” Maddie said. “Something with animals. Next year I want to be a zoo volunteer. I hope they get used to me and then, by the time I learn more, they could hire me. That would be cool if John Ball Zoo hired me. I’ve been going there for years and I know all the animals.”