Through Cancer and Heart Failure, Family Holds Onto Hope

At 11, Megan Wagner of Maple Grove, MN, has her own sense of style when it comes to clothes and jewelry. But the accessory she simply cannot live without is a zippered backpack with wide, cushioned straps. It holds the control unit and battery pack for her Left Ventricular Assist Device (LVAD), which pumps blood through Megan’s heart as she waits for a transplant.

Megan is in advanced heart failure; she needs a transplant NOW. But her eventual place on the transplant list depends on the very cancer—or lack thereof—that started all the trouble.

In November 2018, when Megan was 8, she was diagnosed with a rare type of osteosarcoma, a bone cancer more often found in boys who are somewhat older. Surgery to remove 6 inches of Megan’s right femur and replace her knee was followed by 18 rounds of chemo that included a drug known to cause heart damage in some patients.

Very unfortunately, Megan was one of those patients. Adult-strength doxorubicin helped put her cancer into remission in 2019, and it also ravaged her heart.

“We had gone in for a three-month scan in October 2019 and everything looked fine with the cancer,” Megan’s Mom, Andrea, said. “But they noticed some fluid around her lungs. It turned out her heart wasn’t pumping enough blood, and not even 8 days later she was in complete heart failure.”

For a second time, Megan was fighting for her life. Sixty straight days in the ICU, with so many close calls her parents lost track. “She had the LVAD put in to help save her life,” Megan’s Dad, Matt, said. “And three months after that, she had a recurrence of osteosarcoma.”

Impossible to imagine, never mind endure, Megan went through another 8 months of chemo—this time without doxorubicin. She is now in the oncology record books as one of very few pediatric patients to complete a grueling regimen with an LVAD … a prize no one would ever seek.

Although Megan has been cancer-free for going on 20 months, she needs between two and three years in remission to become a candidate for a heart transplant. That could be reaching the upper limits of LVAD dependency, but the Wagners simply choose not to measure time that way.

Megan, with the family dog, Goldy, has become as accustomed as one can to wearing a plain, black backpack every moment of every day. While she understands the batteries in the backpack power her LVAD, the device that keeps her heart pumping, Megan’s personal style leans much more toward soft colors and embellishments. Plus, the backpack is clunky. She said, “I have two batteries and this big thing that helps know what my heart is doing. It all weighs about 4 pounds … that’s heavy.”

“Megan has got a lot of life left to live, and she’s got a lot of great things to share and do,” Andrea said. That includes high school, college, a career and starting her own family, of course. But for now, life is about pulling pranks—whipped cream in the hand-sanitizer dispenser is a favorite—spoiling Goldy, the family dog, and working alongside her twin sister, Maddie, in decorating their mom’s first-grade classroom.

While heart failure means Megan’s independence is more limited than Maddie’s and older brother Michael’s—she’s always in eyesight of a nurse or other adult trained in emergency procedures if her LVAD malfunctions—Megan mostly manages OK. But she would love to ditch her backpack to swim, and to ride her scooter fast and far.

Until she can, Megan is probably more focused than many 11 year olds on giving back. Working with the University of Minnesota Foundation, her family supports a nonprofit program to develop medications specifically for kids with cancer. Reading4Research is just that—donations are made for every minute of a child’s logged reading time.

Over the time she was going through chemo with her LVAD, Megan was still able to get in 500 minutes of reading. She’s proud of that accomplishment—as she should be!—and also for her part in raising more than $90,000 for pediatric cancer research.

Maddie, left, is the taller twin, and Megan is the one with the bionic knee. Over the years that Megan has gone through cancer treatment and heart failure, Maddie has often felt her sister’s physical pain, a phenomenon that sometimes occurs among twins.

Megan has had help along the way, from friends including Heather and P.J. Fleck, head coach for the University of Minnesota Golden Gophers football team. They met through Casey O’Brien, a Gophers placeholder who received the Disney Spirit Award in 2019 as the most inspirational figure in college football.

Casey, like Megan, is a longtime CaringBridge user. First diagnosed with osteosarcoma in 2013, at age 13, his cancer has come back four times. But Casey’s health is stable today, and in Megan he continues to find strength and hope. That’s what she sees in him, too.

“Our whole family has found hope in the people surrounding us,” Andrea said. “You see God’s work through people like Casey, and Heather, who sat with me when Megan was intubated, and we weren’t sure she would make it. We’ve had so many people like this, helping us hold onto hope.”

Through Megan’s CaringBridge site, the Wagners have also tried to help others hold onto hope. “I hope by following our journey, you’ve seen us try to look for the joy and blessings intertwined with life-altering circumstances,” Andrea wrote. She often closes Megan’s Journal updates with these words: “Continue to lean in and find joy, gratitude and HOPE in all things!”

Megan’s osteosarcoma diagnosis and resulting heart failure have had tremendous impacts on each member of the Wagner Family, including her parents, Andrea and Matt, and her siblings, Maddie and Michael. Her Dad, Matt, said, “All of us have been affected, but I think looking at the glass as half full rather than half empty will help us heal. Every extra day we have is a blessing.”

Megan’s Dad, Matt, believes that hope is a path toward healing, something he very much wants for his family. “We’ve all been affected by what Megan has gone through,” he said. “I think we need to heal together as a family, and we’re working on it. But it’s a process.”

For Megan, there is healing of body and soul, and for Maddie, the process includes reconciling that her twin still has a long road ahead. As sometimes happens with twins, Maddie has felt her sister’s pain—first in her own leg as Megan’s cancer was being diagnosed, and also in struggling to breathe when Megan went into heart failure.

For Michael, the pandemic on top of the urgent need to keep his immune-compromised sister safe from germs meant physical absence from school and friends. There was no hanging out and no playing basketball for more than 15 months. And over the 275 days Megan spent in the hospital, Michael was always minus a parent, too.

Andrea said, “I hadn’t really been with our son, and he grew 6 inches. I came home and I looked up at him and said, ‘Who are you? Where is my little boy?’ Before my eyes, my son was changing, and I wasn’t there to see it. That was hard.”

For Andrea and Matt, there have been so many hard things. No parent is ever equipped to see their child suffer, and the Wagners also needed to stay strong for Michael and Maddie. This on top of caregiving, paying the bills and juggling their jobs to ensure continued health coverage for Megan.

But the Wagners have found healing in simply being together as a family. “We’re just very grateful for every day we have with Megan—and all three of our kids,” Matt said. “The time we get is just so precious.”

  • Katie Grant

    Thank you for sharing about Megan and your family – highlighting how time together is “precious” and you all work to make the most of it. It is truly inspirational (with a huge side of how much cancer sucks).