Regarding Beau

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Like most pediatric hematologists/oncologists, my career has been a journey, hoping to discover ways to improve the outcomes for children and adolescents with cancer. I have been blessed to work with outstanding colleagues in the United States and throughout the world. And of equal importance, I have been afforded humbling opportunities to become closely involved in the lives of many wonderful families, and hopefully I have made some ­difference.

But pediatric oncologists also suffer when therapy fails, sometimes calling into question our core beliefs. The following vignettes attempt to address these joys and sorrows.

Meet Matt

The phone rang—I was in my office at St Jude Children’s Research Hospital in the mid-1990s. My orthopedic colleague was on the line. He had just seen Matt, one of my son’s best friends and soccer teammates. They had played a competitive tournament the past weekend. Matt and a competitor had pushed into one another and Matt fell; he came to the sideline in tears from the pain in his arm. After he recovered his composure he was back in the game, but his mother mentioned to me that he had been complaining of pain in that arm and she was concerned. I arranged the appointment for his initial evaluation. The phone call was brief; the plain radiograph showed the classic findings of osteosarcoma.

I thought that I could help Matt and his family, our dear friends. I was at a premier pediatric cancer center, I was leading our bone tumor clinical research efforts, and Matt would be enrolled in a study I had designed. One of my closest, most trusted, and internationally recognized colleagues became his primary physician. His tumor grew through my supposed brilliance and our state-of-the-art care—Matt died, his disease cruelly laughing at our hubris, approximately 15 months after his diagnosis. My son for the first time directly experienced many of the worst aspects of childhood cancer. Now many years later, we remain close friends with Matt’s family and in the past year attended Matt’s brother’s wedding. Our treatments had failed Matt, and I felt that I had failed Matt’s family as well as my own.

Meet Ruth

The phone rang—during another long work day in Memphis. A mother I had not talked with for many years was on the line. I had come to know this family during my fellowship training, when their young daughter was diagnosed with high-risk leukemia. After she relapsed while still on therapy, and with few available options in the late 1970s, the family decided not to explore highly experimental and potentially toxic new studies.

Sarah died at home and was buried in a Quaker cemetery north of Baltimore. The parents gave me a drawing of the Gunpowder Friends Meeting House where she was laid to rest, a treasure that has always hung on my office wall. I had moved twice since completing my fellowship, over a decade had passed, and I was not certain how the mother had tracked me down. After some brief words, the mother told me her other daughter, now a young teen, had just been diagnosed with Hodgkin lymphoma. She was calling to ask that I care for her child. I was honored by her request.

Ruth is cured. When she earned her PhD, she shared her thesis with me. When she married, my wife and I attended her wedding. She has a beautiful daughter. She has become an expert in cancer survivorship and devoted the early years of her professional career as an executive leader for the LiveStrong Foundation. She has found meaning and purpose through her family’s tragedy.

Meet Beau

My cellphone rang—a Monday morning in late October of 2014. The pediatric ophthalmologist was on the line. He had just seen Beau because this adorable little boy had lost conjugate gaze and had mild proptosis. Beau had just celebrated his first birthday. In the previous week, his long wavy hair that was falling over his dark brown eyes had been trimmed, and now the eye changes were apparent. I saw Beau that Saturday when his parents, Heather and Eric, brought him over to let me take a look. I recognized the abnormalities and need for urgent evaluation. I attempted to be reassuring but was terrified that he might have orbital rhabdomyosarcoma. This highly malignant tumor at least had an excellent cure rate. Perhaps I could help. When the ophthalmologist called on Monday, there were abnormalities in both eyes, findings more consistent with neuroblastoma—even worse news for Beau and his family.

In the next several days, after many imaging studies and biopsies, we learned that Beau had stage 4 neuroblastoma. We were still hopeful that his young age would confer a more favorable prognosis.

Like most pediatric hematologists/oncologists, … I have been afforded humbling opportunities to become involved in the lives of many wonderful families. But pediatric oncologists also suffer when therapy fails, sometimes calling into question our core beliefs.
— William H. Meyer, MD

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When the phone rang again several days later, it was the biology core laboratory. They reported that his tumor was MYCN amplified, a bad prognostic sign—it was in that moment that I began to grieve. I contacted expert colleagues throughout the United States for advice. One of my colleagues in my pediatric oncology section discussed treatment options with Beau’s parents. His grandfather requested to be part of this discussion and continued to be intimately involved with care decisions, creating additional challenges for Beau’s care team.

Beau tolerated the early rounds of aggressive therapy amazingly well. He continued to be a happy and playful toddler; the only obvious signs of chemotherapy were the little bulge on his chest wall from his Infusaport and his cute bald head. Soon his father’s head matched Beau’s. His mother wore t-shirts to honor Beau and raise funds for neuroblastoma research and care.

Not surprisingly, he became a favorite of our hospital staff. Beau’s siblings enjoyed the opportunities to visit while he was hospitalized but paid a price when Beau’s needs seemed to them often to come first. And grandfather always seemed to be hovering. Subsequent imaging showed that Beau’s tumor was responding—our team was optimistic.

Curative therapy for advanced neuroblastoma requires local control of the primary tumor and high-dose therapy with autologous stem cell transplantation. I encouraged his parents to travel to New York City for surgery—to be treated by one of the most experienced pediatric surgeons working with children with neuroblastoma. Beau was off to New York in March with his parents and his grandfather, who said he wanted to help his family; in reality, Papa just could not imagine losing an opportunity to continue meddling in Beau’s care. The surgery was long, more than 12 hours, but successful, with complete removal of the primary tumor, and Beau’s recovery was relatively uneventful. He received his next round of chemotherapy while still in New York. I thought the parents found Papa’s presence to be of some value.

The next tumor assessment showed that Beau seemed to be in complete remission, and, although not quite back to his baseline, he went on to receive high-dose therapy and transplant. After a month in the hospital, his blood counts had finally recovered and he was home, now with G-tube feeds and antifungal therapy and much more debilitated.

The loss of control and sense of failure in not finding a cure for my own grandson have left me with questions for which there are seemingly no answers.
— William H. Meyer, MD

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Within weeks of his hospital discharge, he began to have bruising around his left orbit; magnetic resonance imaging showed disease recurrence. Additional studies showed widespread new metastatic disease. With such an early relapse, the outcome was grim, and Beau’s quality of life had badly deteriorated. Eric and his wife opted for hospice care and took Beau home. Papa tried to be quietly supportive; perhaps his presence was of some modest comfort.

Early in the morning the phone rang. My son was on the line. I said hello and asked what was going on, although I knew why he called. Eric told me that Beau had died during the night. I shared a few words but mostly suffered with him in silence, knowing there was little I could say to ease his pain.

Questions With Seemingly No Answers

Cure rates have never been higher for children and adolescents with cancer. We cure more than 90% of children with acute lymphoblastic leukemia, and even for advanced-stage neuroblastoma, outcomes have substantially improved during my career. We have become used to winning many more of these battles, and when our patients are cured, we meaningfully affect their lives, as Ruth’s story shows. With advances in therapy we have grown accustomed to experiencing more successes, and failures are harder to accept. Often, perhaps irrationally, we feel a sense of failure when our therapy does not succeed. As Matt’s story illustrates, when we develop close relationships with our families and patients, the losses are more personal. The loss of control and sense of failure in not finding a cure for my own grandson have left me with questions for which there are seemingly no answers.

The memorial service for Beau was beautiful and touching. Matt’s parents flew in to attend, as did Ruth and her mother. Parents of other children, some who had died and some who are cured, were also there. Some understood in ways our family was just learning the grief of losing a child. I hope that Eric and his wife will find their way forward as Matt’s and Ruth’s parents have. And someday, perhaps I will find some meaning. ■