Our relationship with CHKD began the week before my daughter, Audrey, was born. A routine ultrasound at the end of my pregnancy revealed something completely unexpected - a tumor in her abdomen. Doctors recommended a cesarean-section immediately. Though the doctors weren’t sure of the type, they were almost certain of one thing – my baby had cancer.
I delivered Audrey at Sentara Norfolk General Hospital so she could be close to the specialists at CHKD when she was born. The birth of your child is supposed to be an intimate event, followed by quiet, precious mommy and daddy moments. In our case, the room was bustling and filled with medical staff – nurses from CHKD’s neonatal intensive care unit waiting to take Audrey to CHKD, pediatric surgeons and specialists ready to assess her condition. I don’t actually remember much of that day, but what I do recall is the compassion on their faces as they explained their role in our care.
Soon after, I met Audrey’s oncologist, Dr. William Owen. The word oncology is terrifying, and so I expected Dr. Owen to be intimidating. But he was kind and calm as he spoke to me and my husband Chris – shaken parents who a week earlier didn’t even know children could be born with cancer. He answered every one of our questions with patience, and I always felt as if we were the only people on his schedule. Looking back, that was so important to us.
Dr. Owen explained that he could not see the future, but he felt Audrey’s prognosis was good. And I believed in him. I trusted him. And most important, I was certain that his desire to see my daughter live was just as strong as mine.
During our visit, I spoke words to Dr. Owen I never imagined coming out of my mouth.
“Do you think my daughter is going to die?” I asked.
He looked me in the eye and said, “No.”
On the sixth day of her life, Dr. Frazier Frantz, a pediatric surgeon at CHKD, performed major surgery on Audrey to remove her cancerous tumor. Nothing can prepare you to see your child with a breathing tube and an IV line, but Dr. Frantz spent time explaining everything that would happen during the surgery and in recovery.
I was so relieved when we were told the surgery was over; however, bad news followed. During the surgery, Dr. Frantz discovered that the cancer had spread. He had removed an adrenal gland, most of the tumor and the surrounding lymph nodes. Lab results later that day confirmed that Audrey had neuroblastoma, a rare childhood cancer. The cancer was in stage 2B, meaning it had moved beyond the primary site of origin.
Audrey spent her second week of life in the NICU recovering from her surgery. During that time, CHKD really provided care to our entire family. That care included extra attention from Child Life specialists for a 6-year-old big sister, Ella, who asked questions about every machine that beeped. It included around-the-clock nurses and came in the form of hugs from a minister or a nurse who were there when I was having a difficult moment. By the time we left the NICU, Audrey was just two weeks old, but we felt as if we’d been there forever.
We returned to CHKD when Audrey was one month old for a series of scans that would show us whether cancer cells were active in her body and then again eight weeks later for follow-up tests. Although we couldn’t see them, tests revealed that nodules were growing under her skin, and her cancer stage was modified to stage 4S. The “S” is important - it stands for special. It is special because in infants, neuroblastoma cells can sometimes spontaneously regress or die. So while we were overwhelmed by this new information, doctors assured us there was still hope.
CHKD participates in many clinical and research trials through the Children’s Oncology Group, sharing cancer data with doctors and researchers worldwide. Just a few years ago, Audrey’s treatment plan would have involved chemotherapy that could result in many long-term side effects. But based on recent research and a careful analysis of the cells in her tumor, Dr. Owen suggested we watch and wait, with monthly tests to see whether Audrey’s cancer would essentially go away.
Waiting was difficult. Each month we went to CHKD for scans and tests to monitor the progress of Audrey’s cancer. I was often terrified by the idea that, while we were waiting, the cancer might be growing. It seemed like we should be doing something more. But we followed Dr. Owen’s recommendations. We watched. And we waited.
And he was right. Just after her first birthday, Audrey’s scans showed no evidence of cancer.
Audrey still sees Dr. Owen every six months for follow-up tests to make sure the cancer hasn’t returned. Over the past two years, I have driven to CHKD many times, fighting back anxiety about what the future holds. But as soon as I enter the oncology clinic, I am no longer as anxious. The doctors and nurses at CHKD know my daughter. They genuinely smile as they greet her by name, cheering for her when she spoke her first words and took her first steps. Her life is important to them. And they are so very important to us.
Audrey celebrated her second birthday this past June. It was a joyful event, followed by precious mommy and daddy moments. And thanks to CHKD, we look forward to many more of those precious moments in the years to come.
Dr. William Owen practices with Children's Specialty Group, PLLC, at CHKD. Dr. Frazier Frantz practices with CHKD Surgical Group's Pediatric Surgery.