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A family’s story of their toddler’s leukemia diagnosis – and how life’s looking after treatment

While the world was grappling with the unknowns of COVID-19, Elizabeth and Joe Matthews were dealt another unwelcome surprise.

“It was COVID, and James was in daycare. He kept getting fevers. We thought it was just daycare crud,” said Elizabeth of her then 16-month-old son’s symptoms.

Each time they went to the doctor, flu and COVID tests came back negative. Then James developed a gunky cough that led his parents to think it may be allergies, until he got a fever that lasted several days. By day five, they took him back to the doctor. Now considering James’ condition could be pneumonia, the pediatrician sent the Matthews family to the emergency department.

The doctors and nurses – dressed in full head-to-toe personal protective equipment – drew blood and ran tests. With their tired toddler hooked up to an IV, Elizabeth and Joe waited.

“A doctor came in with no personal protective equipment so we could see his face,” Elizabeth recalled. “He said, ‘Your son’s white blood cell count is so elevated, the only logical conclusion is that he has cancer. We have to transfer you to VCU.’”

The words hit them like a ton of bricks.

Quick action to begin chemotherapy and the care that followed

The positive in the darkness of their situation was that the Matthews were about to meet a team with the knowledge, tools and treatment options to tackle their son’s cancer. It was 10 p.m. before they arrived at Children’s Hospital of Richmond at VCU (CHoR). When they met Marieka Helou, M.D., MPH, a pediatric oncologist at VCU Massey Comprehensive Cancer Center and CHoR, who was the attending oncologist on duty that night, she rushed to start James’ chemotherapy right away.

“I asked Dr. Helou if this was what they normally do and she said, ‘No, but your son is very sick,’” said Elizabeth.

They stayed in the pediatric intensive care unit for three nights, then in the acute care unit for another three nights before returning home – but that was just the beginning.

James’ specific type of cancer is B-cell acute lymphoblastic leukemia, or ALL – the most common type of childhood cancer. It affects the B cells in the blood that produce antibodies and fight infection, which is why James couldn’t shake the illnesses that typically wouldn’t faze a healthy kid.

“James was very sick at diagnosis, requiring care in the ICU. He then endured about 2.5 years of aggressive leukemia therapy,” explained Jordyn Ramsey Griffin, M.D., M.S., James’ primary oncologist throughout treatment and a pediatric hematologist-oncologist at Massey and CHoR.

This treatment included platelet and blood transfusions, chemo, weekly clinic appointments and ER visits each time James had a fever of 100.4 or higher. Anytime a person has cancer, infection prevention precautions are essential. Even the common cold can cause significant complications. This, combined with the uncertainty and strict safety measures around COVID, had the Matthews family feeling very alone.

“The first month of treatment was one of the worst times of our life,” remembered Elizabeth.

When the world shut down, the Matthews family found fellowship at CHoR

Today, James is more than halfway to the 5-year mark of being off treatment, at which point he'll be considered cured. In the chaos surrounding her son’s illness, Elizabeth found a powerful partner in Griffin.

“She immediately matched my energy. I’m a very type A person and find comfort in organization. She would bring helpful printouts with information about chemo, potential side effects, etc. to each appointment so I knew all the details,” said Elizabeth. “She saved my kid’s life.”

For Griffin, caring for patients is quite personal.

“I believe the best care starts with getting to know families as people, not just as patients. Understanding what matters most to them allows us to build a treatment plan that supports both their medical goals and their personal goals,” she shared of her care philosophy. “Sometimes that means bringing joy into a frightening situation, and sometimes it means simply sitting quietly and helping a family process. Taking the time to build those relationships early helps me understand which version of myself a family needs at any given moment.”

The Matthews also discovered a bit of unexpected fun at the hospital. During treatment, James loved Lee Ann Skinner, nurse navigator on the pediatric oncology team.

“Young children often don’t fully understand their diagnosis or treatment, but they do understand emotions, routines and trust,” explained Skinner. “I focus on creating a sense of safety through play, simple explanations, consistency and positive interactions. Whether that means sitting on the floor to play, talking about their favorite toy or truck, or turning a clinic visit into something less intimidating, my goal is to help them feel comfortable and empowered.”

Equally important is the support Skinner and the team provide to families, because children don’t face cancer alone.

“Parents are carrying an enormous emotional burden while trying to make complex medical decisions and maintain a sense of normalcy for their child,” she added. “I want families to know they’re not navigating treatment alone and there is always someone available to help guide them through challenges, answer questions and celebrate milestones along the way.”

Marking milestones and lighting the way for others confronting childhood cancer

Speaking of milestones, James reached an important one this year. He’s now more than halfway to the 5-year mark of being off treatment, at which point he’ll be considered cured. For now, he’s in remission, participating in CHoR’s survivorship program and adding new highlights to his memory bank each day.

In the last month alone, he officially became a first grader, started taekwondo and met extended family in Ohio for the first time. As Elizabeth celebrates these moments, she hasn’t forgotten what her darkest days felt like, or that there are families experiencing them today.

“We were always really grateful to go to any ASK or Connor’s Heroes events when James was healthy enough, and we could be around other families who spoke ‘the language,’” she said. “People from your regular life don’t understand the life of pediatric cancer. Anytime we were able to connect with other families who were going through treatment and had advice to share was such a blessing.”

While Elizabeth and her husband can now be a source of solace for new families, Griffin celebrates their resilience on the rocky road that led them here.

“It has been my privilege to watch James grow from a spirited toddler into a bright, kindhearted first grader! His joy and curiosity are obvious within moments of meeting him,” said Griffin. “His parents Elizabeth and Joe are just as remarkable. They’re tireless advocates for James and other children diagnosed with cancer. They approached each step of his treatment with extraordinary dedication, becoming experts in his care, while never losing sight of what mattered most – loving and supporting James.”

As for what Elizabeth would say to someone just starting on their journey with childhood cancer?

“It will be hard, but there are pockets of normalcy and joy. Have faith that your kid is tougher and more resilient than you may think – and when it gets to be too hard, ask for help.”

Learn more about how Massey and CHoR are working together to bring about positive outcomes in childhood cancer care.

This article was repurposed from one originally published by CHoR in September.