Andrea glanced down at her ringing cell phone and stepped out of the first grade classroom where she was teaching to answer it. She wasn’t expecting a call. However, earlier that morning, she had taken her 8-year-old daughter, Megan, to get an MRI. Megan’s leg had been hurting for weeks, and physical therapy wasn’t helping. When the pain started waking Megan up in the middle of the night, Andrea had pushed for an answer and got Megan scheduled for an MRI, expecting it would find some kind of run-of-the-mill injury – a pulled muscle, something that Megan could heal from quickly. She slid her finger across the screen to answer the call that would change her family’s life.

“Hi Andrea, I’m calling from Twin Cities Orthopedics, can I talk to you about your daughter’s MRI this morning?” the doctor on the phone said.

“Yes, but can I call you back? I’m in the middle of teaching,” Andrea said.

“Unfortunately no, we need to talk now.”

As the doctor spoke, Andrea hurriedly wrote down a few key phrases on a sticky note. “Lesion, right femur.” “Dr. Ogilvie.” “University of Minnesota.” “Not good.”

The next day, Andrea and her husband Matt took Megan to the University of Minnesota for more testing. They had begun to put together the pieces – Dr. Ogilvie was listed online as an osteosarcoma specialist, and they knew that for doctors to rearrange their schedules to see Megan the next day, something had to be seriously wrong. In the exam room the doctor confirmed their worst fears – it looked like Megan had a classic case of osteosarcoma, a rare bone cancer.

“I’ll never forget looking over at Megan sitting on the exam table,” Andrea said. Megan said, “What is osteosarcoma?” Andrea tried with all her might to speak calmly as bile crept into her mouth. “It’s something we don’t want,” she said. “But it’s something we’re going to fight.’”

“It’s something we’re going to fight.”

Any diagnosis of cancer is a tragedy, but osteosarcoma is a particularly tricky beast – it’s rare and hard to treat, and if it has already spread to another part of the body before treatment starts, the chances of survival plummet. What’s worse – many of the treatments for osteosarcoma haven’t improved in decades. Some of Megan’s chemotherapy drugs were three or four times her age. Thankfully, Megan’s tumor hadn’t spread, so doctors moved forward with a plan of intense chemotherapy. The plan was to knock the tumor back with chemotherapy, then remove her femur and replace it with a prosthetic. Andrea remembers being floored that this is what treatment for kids with cancer still looked like in 2018.

“I remember once in the hospital, Megan had a bloody nose and the nurse told me I had to put gloves on before helping her,” Andrea said. The nurses explained that the chemotherapy drugs would still be in Megan’s system, so anything from Megan’s body, like blood or vomit, could burn Andrea’s skin if it wasn’t covered. Andrea remembers thinking how unbelievable that was. She knew the treatments had to be strong to kill this beast – but we have to do better.

Megan’s initial treatment, which kept her in the hospital for 101 nights, seemed to work – she was declared “No Evidence of Disease” in July 2019 and started third grade in the fall alongside her twin sister, Maddie. But in October, her three-month scans showed fluid in her lungs and around her heart. Just a week later, Megan was in complete heart failure – a direct result of the harsh drugs that had put her cancer into remission. She was admitted to the cardiac intensive care unit for more than two months, and during that time, Megan fought extremely hard to stay alive.

Andrea says she always knew Megan’s cancer treatment would have tradeoffs, but heart failure wasn’t on anyone’s radar. “I remember they told us she could lose her hearing because of the drugs, and I was devastated at the thought of that,” she said. “But then, sitting with her in the ICU in heart failure, I would have given anything for her to just lose her hearing.” More than once during that hospital stay alone, she had been afraid Megan would not survive to see her next birthday.

A Battery-Operated Heart

Megan’s heart wasn’t getting better, and it likely never would. When she was finally stable enough for doctors to look into the future, they gave her two options – live in the hospital full time or undergo open-heart surgery to receive a left ventricular device (LVAD) – a device that would essentially mean she had a battery-powered heart.

“Matt and I made the decision that we wanted to give Megan the best quality of life for as long as we could, so we said yes to a six-hour surgery to get her the LVAD,” Andrea said.

Megan spent two years with the LVAD, carrying around the machine that powered her heart in a black backpack everywhere she went. During those years her cancer came back and she beat it yet again - to this day, Megan is one of the only pediatric patients to survive her specific chemotherapy regimen while being on an LVAD. She tried her best to be a typical middle schooler, but it’s hard to get much independence – she was required to have one of her parents or an LVAD-trained nurse with her everywhere she went. It meant no swimming, no sleepovers, no unsupervised giggly playdates with friends or cousins. But Megan and her family did their best to draw humor from the drawbacks of this lifesaving device.

“We’d joke that she was like a Tesla because she had to ‘plug in’ and charge her batteries every night,” Andrea remembers.

When Megan was two years cancer-free, she qualified for a heart transplant and after three months on the waiting list, a heart became available. One complex, painstaking surgery later, Megan awoke with a new heart and was able to ditch her LVAD backpack for good.

Today, Megan is three years cancer free, and although that in itself is a feat, Megan’s family still has to push back the fear that cancer may return. Andrea says she is so proud of how her daughter has weathered the ongoing storm that is cancer treatment.

“There were times that she was really down, and when she was down, that was hard,” Andrea said. “But she didn’t give up. She continued to persevere.”

Believing Better is Possible

Megan and her family are determined to use her story to make things better for the kids who come after her. They’ve raised over $500,000 for osteosarcoma research, and they’re not stopping there. They’ve seen how disastrously underfunded research for rare cancers is, and they are determined to make a difference, even if they have to do it themselves.

“If we can send someone to the moon, if we can create battery-operated hearts, we can find a better way to treat rare cancers,” Andrea said. “We know that with funding, things can improve, we know that by looking at the statistics for leukemia in kids, or breast cancer in adults. When we raise money and fund research, things get better. But rare cancers like osteosarcoma don’t get that funding, so it takes mom and pop organizations and families like ours to raise that money and awareness.”

When asked what she wished more people knew about the experience of childhood cancer, Andrea said this:

“I wish people knew that when they say ‘you’re so strong,’ that they know we’re not strong. We’re just trying to get through every day. There is not a road map or course to teach parents how to navigate possibly losing your child to pediatric cancer. That’s not how life is supposed to go.” She added, “I used to naively pray that the cancer would go away. I prayed that Megan would have cancer once and be done. I had to change that narrative and pray instead for strength to get us through whatever hurdles would come next. We don’t have control of anything, we just need to make the best of whatever comes our way.”