In August of 2018, Lindsay Roberts returned from a joyous vacation, traveling through Europe with her fiancé Ben and their 18-month-old daughter Simone. Lindsay was looking forward to the fall: planning their wedding, refurbishing the 150-year-old house they had just purchased in Germantown, and returning to her life's passion, teaching preschool at Germantown Friends School. When she learned she was pregnant, Lindsay and Ben were thrilled to be expanding their family. But their world would be turned upside down when Lindsay was rushed to the emergency room after suffering a frightening seizure.
What followed was an agonizing few weeks in the hospital searching for answers. When Lindsay, a 36-year-old mother, 13 weeks into her second pregnancy, was diagnosed with brain cancer she faced what seemed like an impossible road ahead.
The events of the past year have reminded us all just how quickly our lives can be changed by the unexpected. With the support of family and friends and her care team at Penn Medicine, Lindsay learned how to embrace the unexpected — the fear, the pain, the frustration, the joy, the compassion — and how to generate hope while creating a vision for the future.
A Complicated Path to Diagnosis with Life-Altering Outcomes
It has now been two years since Lindsay was found unconscious in her car. Reflecting on that night when Ben received the EMT's call, he recalls feeling in shock as he frantically rushed to the hospital, but also being completely focused on making sure they knew Lindsay was pregnant. This would mark the beginning of a rollercoaster of emotions that would ensue as the hospital tried to figure out what was going on — all while being mindful of the baby that was growing inside. Finally, a shadow on a scan led to suspicion of a brain tumor. A subsequent biopsy showed Lindsay had an oligodendroglioma, a slow-growing, less aggressive type of brain cancer — but one that would need treatment.
Brain tumors are complex, and while the path to diagnosis is challenging, understanding treatment options and deciding on a plan amidst a crisis can be even more daunting. Lindsay was initially told that to save her life, she would need to terminate her pregnancy and pursue aggressive treatments right away. If that were the only choice, she would have made it, but first, she wanted to be sure there wasn't an alternative path forward.
An Unexpected Connection: The Power of Science and Compassionate Care
Several friends urged Lindsay to seek care at Penn Medicine's Abramson Cancer Center. In advance of their first visit with neurosurgeon Donald M. O'Rourke, MD, Lindsay and her family expected to be impressed by Penn's clinical expertise. What they didn't anticipate was the depth of compassion and consideration in caring for Lindsay: her goals, her values, her priorities, her humanity. This was the hallmark of her entire Penn experience.
"What got us through was that the team paid so much attention to me. I felt like they were my doctors, from the beginning, starting with Dr. O'Rourke. I just felt incredibly comfortable and confident with them."
Anyone facing a cancer diagnosis has a complex set of concerns and overwhelming decisions to make, and for expectant mothers, the additional specter of the unthinkable choice between her life and the life of her baby. For Lindsay, who was already a mother, these were choices that impacted her entire family on many different levels. From the very first meeting with Dr. O'Rourke, it was clear that both Lindsay, her baby, and her family were in Penn Medicine's care.
"He said to me, 'I'm going to get you through this, we can keep your baby safe and get you well. It's going to be a tough few years, but we'll be there the whole way.'"
Dr. O'Rourke, Penn's John Templeton, Jr., MD Professor of Neurosurgery, has dedicated his career to the treatment and eradication of brain cancers. He is one of the world's most sought-after neurosurgeons and is an internationally recognized leader in brain tumor research with lab teams now engaged in the first-ever clinical trials in CAR T immunotherapy for brain cancer.
At Penn, however, there isn't just one person behind caring for a patient — and in Lindsay's case, the team was expansive: medical oncologist Arati S. Desai, MD, radiation oncologist Robert A. Lustig, MD, and specialists in Maternal Fetal Medicine worked together to devise a plan that would see Lindsay through a healthy pregnancy and then surgically remove her tumor, followed by six weeks of radiation, and eight rounds of chemotherapy. As Lindsay proceeded through her pregnancy, she was profoundly moved by how carefully the whole team addressed and prioritized her concerns.
"The Maternal Fetal Medicine team's phenomenal care helped me begin to relish my pregnancy and envision my family's future in a way I hadn't been able to before. My fears of cancer were still there for sure, but the way we were cared for made a big difference."
An Amazing New Life and an Astonishing Life-Saving Surgery
On February 18, 2019, Lindsay, Ben, and Simone welcomed Isaac "Ziggy" Johnson to the family. Under the watchful care of OB/GYN Adi Hirshberg, MD, Ziggy came into the world healthy and strong, bringing unspeakable joy as the family faced the road ahead in his mother's cancer journey.
Treating brain tumors is especially challenging because of the potential risks to a patient's quality of life after cancer. Lindsay is a mother, a teacher, and a friend who relays stories in detail, never forgetting a memory. The tumor was in Lindsay's speech receptors, and Dr. O'Rourke knew that keeping her speech intact was just as important as fighting her cancer. He explained that the best way to ensure this was for Lindsay to be conscious during her surgery. By performing an awake craniotomy, he could communicate with her to make sure that none of the work he and his team were doing was impeding her speech.
"When Dr. O'Rourke described the surgery, my being awake in a twilight state, I thought, this cannot be real. I was terrified. But he really took the time to explain it, and to make it feel less daunting."
Her care team allowed as much time as possible for Lindsay to take in these beautiful early moments of motherhood, to have an opportunity to breast feed, to be present with her family. On April 8, 2019, six weeks after baby Ziggy's arrival, Dr. O'Rourke and his team performed a successful awake craniotomy, removing the tumor and preserving Lindsay's speech. Like most people, Lindsay did not know what to expect when in a twilight state, and she was astonished not only by everything that happened during surgery, but also by her vivid memories of it.
"It was the most incredibly surreal experience of my life," says Lindsay. "Everybody in that room was so attentive and nurturing. I experienced so many moments of unexpected care. They had to shave one side of my head and, afterwards, one of the male doctors carefully braided my hair on one side — a French braid! I remember thinking at that moment that he could have just cut my hair to get it out of the way. That really stuck with me, this anesthesiologist did for me what my mother would do, and what I would do for my daughter."
She remembers feeling like being at a dinner party, meeting new people who were interesting and engaging. At one point, she shared that one of her goals in recovery was to go to her friend's 40th surprise birthday party in New Orleans during Jazz Fest.
"We were all just having this really great conversation. And I am talking about Jazz Fest while Dr. O'Rourke is operating on my brain. While doing it, he asks if he can come with me because it sounds amazing. 'Of course,' I said. 'Sure! Come with me!' You can't really turn down the guy who's got his hands in your brain, right?"
Most importantly, throughout the experience, it was clear to Lindsay that there was a very present connection to and understanding of her well-being, of how important her speech was to her job, her passions, and how they were going to make sure that she would come out of surgery unimpaired.
"When I woke up talking, I just thought, Oh my God, I'm all here. And while that surgery was the first step of fighting my illness, I am indebted to Dr. O'Rourke and his team, and to Drs. Desai and Lustig for making me feel like my cancer was not the end of my world."
Healing as a Family: Moving Forward with Hope & Joy
After healing from her surgery, Lindsay began radiation with Dr. Lustig and chemotherapy under the guidance of Dr. Desai, who had been with her and her family through every stage of her cancer from her initial diagnosis to this critical stage of treatment.
"Every time we met with Dr. Desai, it was a breath of fresh air. She figured out how to make my chemo easier, because what was so important was to return to some semblance of normalcy. I had a newborn, a toddler, a fiancé, and all my preschool students. I love my life and what I do. I didn't want this cancer to stop me. So, thanks to Dr. Desai, I worked through my pregnancy, I worked through radiation, through chemo, and through the pandemic."
In March 2020, when the first pandemic restrictions were set, Lindsay was still in treatment. Her family moved in with her mom Beverly and step-father Jeffrey for what was supposed to be two weeks. And, as we all now know, two weeks turned into a year.
Cancer treatment is physically and emotionally draining. Recovering from brain surgery presents an additional set of challenges. For Lindsay, there were moments during treatment when facing her limitations as a parent, a partner, and a teacher were painful, humbling, and frustrating. The simplest of freedoms, like driving a car, were out of her grasp as were the purest of joys, like picking up her children, but being in her mom and Jeffrey's home was transformative.
"My mom nursed me back to health. And while I was in a lot of pain, and I was so frustrated by not being able to be as present for my family as I wanted to, I found strength and support in these unexpected places, from the unplanned stay with my mom to meeting people I did not know who had also gone through a similar experience. For this, and so many things, we counted our blessings."
One of Lindsay's best friends works for Penn Medicine and introduced her to stories shared by other cancer survivors. One that really resonated spoke of the power of planning little projects during treatment which provided distraction, a sense of accomplishment, and something to look forward to beyond cancer. Before her cancer, Lindsay was newly engaged, planning a wedding, and beginning the renovation of a home for her growing family. As she moved through her treatment, she allowed herself to start planning again and she found comfort in all the little details.
"This advice about focusing on the little projects was a huge deal for me — finding all kinds of things big and small to look forward to, and then seeing them happen. Our wedding has been canceled twice because of COVID, but I know it will happen and I can't wait. We recently moved into our new home. It was built in the 1800s and has so much character. It's such an interesting space, and a wonderful place to live and watch our children grow."
On March 30, 2021, Lindsay went to the zoo with her children by herself. This is something she hadn't been strong enough to do for two years and marked a real turning point in her recovery.
"I'm slowly coming back, which is good! I encourage anyone facing a medical challenge to go to Penn Medicine. Even though it can be the scariest thing to do, open yourself up to your doctors. They want to know you. Looking back, what I would want everyone to know is that throughout this incredibly difficult journey, I always felt hopeful. I held so much hope and positivity because of my doctors and Penn Medicine. I'm carrying that hope forward — it's coming with me wherever I go, no matter what happens."
Lindsay is currently in remission and coming up on her one-year scan in June. Learning to relish the present moment has been just one of the many outcomes of this experience. Which is exactly what they plan to do this Mother's Day weekend in Woodstock, NY, as a family.