Madison (Maddie) Bergstrom: Navigating the Financial Challenges of Childhood Cancer

A conversation with Shauna McLaughlin, Maddie’s mother

In 2010, Madison (Maddie) Bergstrom was a lively toddler. When she suddenly began having belly pain, her mom, Shauna McLaughlin, noticed that Maddie’s stomach looked swollen. A precautionary visit to the doctor sent them to the hospital for a stomach X-ray. Additional scans and bloodwork revealed cancer. Maddie was 19 months old.

Further testing confirmed that Maddie had B-cell acute lymphoblastic leukemia, the most common form of childhood leukemia. “I didn’t expect it,” Shauna recalled. “I’ve had gut feelings when something was wrong with my kids, but the last thing I thought I would hear was that my child had cancer.”

The family spent nearly a month in the hospital before transitioning to outpatient treatment. The next 2 years were consumed by rounds of chemotherapy, frequent hospital and emergency room visits, and managing the many side effects of treatment. Shauna faced a difficult choice. “I immediately quit my job,” she said. “As a parent, you have to choose between going to work or being there for your child.”

The family went from two incomes to one. Gas for trips to the hospital, parking, and meals away from home all quickly added to their expenses. “When your child has cancer, your main concern is, ‘Is my child going to live?’” Shauna said. “But then the afterthought is, ‘Can I pay my mortgage? Do I have enough gas in my car to get to the emergency room tonight?’ You make less money and incur more costs.”

After 2 years of treatment, the family celebrated when Maddie was declared cancer-free. In 2013, just 6 months later, the cancer came back. By then, Shauna was raising Maddie as a single mother, and their financial situation had become even more challenging. Shauna quit her job for a second time, going from one income to no income at all.

At one point, Shauna had to borrow money from her grandmother for gas to get to the emergency room and seek charitable assistance to heat her home during a cold Massachusetts winter. Although charitable organizations helped with some expenses, most assistance was limited to one-time grants. Shauna also struggled to admit that she needed help. “As a parent, your job is to make sure you can financially support your child,” she said. “When you have never been in trouble like that before, it is really hard to admit it.”

After another relapse, Maddie underwent 2½ years of chemotherapy and radiation therapy. As Maddie neared the end of her treatment, Shauna had met her now-husband, Patrick. When Maddie reached remission a second time, Shauna was pregnant with their son.

Then, in 2016, just 1 week after the birth of Liam, Shauna and Patrick’s son, Maddie relapsed for a third time. The family enrolled Maddie in a clinical trial at Children’s Hospital of Philadelphia evaluating an experimental chimeric antigen receptor (CAR) T-cell therapy, a type of immunotherapy that reprograms a patient’s own immune cells to recognize and attack cancer cells.

Maddie was one of the first 25 children in the world to receive CAR T-cell therapy. The family temporarily relocated to Philadelphia, where she received treatment and was closely monitored for potentially serious side effects. The infusion took just a single day. Maddie has been cancer-free for nearly a decade.

Today, Maddie is 18 years old and thriving. She is now a high school senior and has earned her certified nursing assistant credential. Inspired by the nurses who cared for her, Maddie plans to become a pediatric oncology nurse to help future patients. “I want to be able to say, ‘I went through it. There is hope,’” Maddie said. “I just want to give back what they’ve given to me.”

For Shauna, the years of caring for Maddie inspired advocacy. She now works with organizations focused on addressing the financial burden families face when caring for a child with cancer. Shauna serves as a parent advocate on the IGNITE Consortium, a pediatric cancer health equity research initiative co-founded by Maddie’s oncologist, Dr. Kira Bona, a pediatric oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Shauna has also partnered with Family Reach, an organization dedicated to eliminating financial barriers for people with cancer, which helped her own family directly. Although her family has recovered financially, she says the recovery took years, long after Maddie’s treatment ended.

Shauna has a clear message for policymakers: Funding cancer research saves lives, but families need support navigating the financial realities of treatment. “If we can lessen the toll that cancer takes on a child and their family, then we have to invest in that research,” she said. “Families shouldn’t have to choose between caring for their child and keeping a roof over their heads.”