A doctor and a mom: Navigating life as both St. Jude physician and patient parent

Parents know when their child seems “off,” whether a mysterious cough or unexplained foot pain or something less tangible. However, most do not have the expertise to know for certain what might be wrong. Deena Levine, MD, Division of Quality of Life and Palliative Care director and Department of Oncology associate member, has the instincts of both a physician and a mother. When Levine noticed her 10-year-old son Eli limping during a hike, holding his arms oddly and knowing he had recently been through a brisk growth spurt, she suspected something every parent fears.

“Because of my training in pediatric oncology, I knew those were signs of a brain tumor,” Levine said. “However, when I first told his healthcare providers about my suspicions, they didn’t believe me, because in my position, I see many patients with cancer, and they thought I was biased and seeing something in my son that wasn’t really there.”

As many parents would, Levine snapped into advocate mode. She sought out specialists and pushed for a magnetic resonance imaging (MRI) scan. If the results were negative, she would happily be wrong. However, in this case, Levine was not wrong. The results came back positive — Eli had a supracellular brain tumor.

“When they told me he had a brain tumor, I wasn’t surprised,” Levine said. “I don’t know how to describe that moment exactly. It’s when I began to cross over from the provider into the patient-parent role, which is bizarre and very hard.”

New perspectives on patient care

At St. Jude, Levine leads the palliative care team that provides comfort and promotes quality of life for children being treated at the hospital. She has spent more than a decade supporting families undergoing some of the most stressful events in their lives. Once Levine and her family started on their patient journey, her perspective shifted, as the lines between personal and professional blurred.

“At all times, I am wearing both hats of being a mom and a provider,” Levine explained. “Sometimes in the same day, I’ll run him in for appointments in the morning and have to be the mom, then, in the same clinic a few hours later, I’m seeing a patient, or I’ll run into a patient I saw earlier while escorting him through the clinic.”

These interactions can cause awkwardness. Most healthcare professionals prefer to avoid disclosing personal information to their patients. That is no longer always possible for Levine. However, she is making the best of it, using her different point of view as a parent to increase her capacity to connect with her patients.

“A lot of my work has focused on communication and trying to be as empathetic as possible,” Levine said. “Now, having been on the other side, I can feel more of what it must feel like for them. What some of those practical challenges are — even little things like using MyChart, looking up information and scheduling appointments — may not control outcomes but do impact quality of life.”

While Levine already used best practices for palliative care, her lived experience has guided her to forge even stronger relationships with patient families. This has also enabled her to build trust and support them in areas that are most important, which she can understand on a more visceral level now. In particular, she knows the value of trust in the relationships families have with their child’s care team, which provides the same guiding force that Eli’s care team does for her family.

Seeing the other side of the provider-patient relationship

As soon as the family had Eli’s brain tumor diagnosis, Levine sought out her colleague Giles Robinson, MD, Division of Neuro-Oncology director and Department of Oncology member. Having known each other as fellow St. Jude faculty members, Levine now came to him for his medical expertise as a prospective patient family.

“My first phone call, it was on a Friday night, immediately after we came out of the MRI, it was to [Robinson] to say, I need your help,” Levine recalled. 

Robinson provided expert consultation and recommended a biopsy. The next steps in pursuing Eli’s diagnostic workup turned out to be one of the most difficult challenges for Levine. For most of the treatment journey, Levine’s knowledge of oncology has been a blessing, helping her husband and their other children navigate the medical side of Eli’s diagnosis. When it came to the biopsy to determine the diagnosis and treatment, that knowledge triggered understandable anxiety.

“It was super scary for us, and for me in particular,” Levine said. “My professional experience is a dual-edged sword because I see the highest risk patients in my role as a palliative oncologist, so my frame of reference is always to think about the worst possible case scenario; I know everything that can go wrong during a brain biopsy.”

Eli’s treatment experience

Still, Levine knew Eli was in the right hands, and the family came together to create quality time and support each other in the weeks around the biopsy. For Eli, the results of that procedure would hold an almost best-case scenario. He had an inoperable low-grade glioma, but his tumor had a genetic mutation that would make it sensitive to targeted therapy. The mutation, in the cancer-related gene BRAF V600E, can be treated by two drugs called dabrafenib and trametinib, which inhibit the cancer-activated genes Rac and Mek, respectively.

Since beginning this regimen, Eli has responded well. Even better from his perspective, he does not need to receive any traditional chemotherapy, so he will not lose his hair. As for other side effects, the primary concern has been potential skin, eye or cardiac issues, which is why he receives regular exams as well as electrocardiograms and echocardiograms.

Despite the diagnosis and regular appointments, Levine has tried to keep life as normal as possible for her son. As a testament to those efforts, Eli radiates positivity. According to him, the reason is that he trusts his mother’s coworkers at St. Jude. “I have great people taking care of me,” he said.

Connecting the patient and the provider

For now, Levine continues to navigate the complexities of being part of a St. Jude patient family while also being a colleague to the same care team members looking after her son. Just like Eli, she has chosen to focus on what positives she can from the experience. The journey has changed how she acts as a clinical researcher and leader, delegating more tasks and increasingly empowering her colleagues, while prioritizing her own time for where she can have the most impact.

“Being in this position, as both a palliative oncologist and having a child with cancer, has renewed my professional motivation,” Levine said. “There’s an urgency to it that you feel when you’re living it. I’ve refocused my work on the projects and studies that will be most impactful on patients’ and families’ quality of life and experience, by someone who has been through some of what they’re going through, so we can give them the best support possible.”