Young Lives Facing Cancer – Three Courageous Stories

Cancer is one of life's toughest trials, and children and young people facing it confront an immense struggle at the very beginning of their lives. In this article, I want to share three inspiring and moving stories experienced by a colleague who is a pediatric hematologist/oncologist. Throughout his career, this doctor has encountered extraordinary opportunities and challenges in improving the lives of children and adolescents with cancer.

Like most pediatric hematologists/oncologists, my career has been a journey spent hoping to discover ways to cure children and adolescents with cancer. I am grateful to have worked with distinguished colleagues in the US and around the world. At least as important as those professional experiences was the chance to become closely involved in the lives of many wonderful families—I hope I made a difference.

But pediatric oncologists falter when treatment fails, and sometimes we question our fundamental beliefs.

Meet Matt

My 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 seen Matt, a member of the soccer team and one of my son's best friends. They had played in a tournament the previous weekend. Matt had collided with an opponent and fallen. Clearly in pain, he had come to the bench in tears, then returned to the game after calming down and receiving treatment on the sidelines. His mother told me he was complaining of arm pain, which worried her as a mother. I arranged an appointment for an initial examination and consultation. The telephone conversation was brief: imaging had revealed the classic signs of osteosarcoma (bone cancer).

I thought I could help my dear friends, Matt and his family. I worked at a leading pediatric cancer center and led clinical trials for bone tumors. Matt could enroll in a program we were studying. One of my closest colleagues, internationally recognized and someone I trusted deeply, became his treating physician. Despite all my work and our supposedly highly sophisticated care, his tumor grew. Matt died fifteen months after diagnosis. For the first time, my son directly witnessed the worst aspects of childhood cancer. Now, years later, we remain close friends with Matt's family, and last year we attended his brother's wedding. Our treatments had failed Matt, and I felt I had let down my own family as well as his.

Meet Ruth

My phone rang during a long, exhausting day in Memphis. On the line was a mother I had not spoken with for years. I had met the family during my internship, when their young daughter Sarah was diagnosed with high-risk leukemia . Her disease had relapsed during treatment, and with few options available in the late 1970s, the family decided to join a new, highly experimental clinical trial.

Sarah died at home and was buried in a Quaker cemetery north of Baltimore. Her parents gave me a drawing of the Gunpowder Friends Meeting House that she had sketched in bed whenever she had the energy. I treasure that drawing, and it will always hang on my office wall. More than a decade had passed since I completed my internship, and I did not know how the mother on the phone had found my contact details. After a brief reintroduction, she told me that her other daughter, now a teenager, had also been diagnosed with Hodgkin lymphoma . She was calling to ask me to care for her child, and I was honored.

Ruth recovered. I witnessed many milestones in her life: she shared her master's thesis with me; my wife and I attended her wedding; she had a beautiful daughter. She became an expert in living with and beyond cancer and spent the early years of her professional career as an executive leader at the LiveStrong Foundation. Through the tragedy in her family, she found meaning and purpose for her life.

Meet Beau

My phone rang on a Monday morning in October 2014. A pediatric ophthalmologist was on the line. A sweet little boy named Beau had lost coordinated eye movements and had mild proptosis. Beau had just celebrated his first birthday. His long, wavy hair, which had fallen over his dark brown eyes, had been cut, and the eye changes were now apparent. Beau and his parents, Heather and Eric, came to my office on Saturday for an assessment. His abnormalities and symptoms clearly required urgent evaluation. Although I tried to remain calm and avoid sounding alarmed, I feared he might have orbital rhabdomyosarcoma. At least that highly aggressive tumor had an excellent cure rate. I could help. When the ophthalmologist called on Monday, he explained that both eyes were abnormal and the findings were more consistent with neuroblastoma , making the news progressively worse for Beau and his family.

Over the next few days, after numerous imaging studies and biopsies, we learned that Beau had stage 4 neuroblastoma. We hoped his young age would mean a much better response to treatment.

When the phone rang again a few days later, the call came from the biology laboratory. They reported a MYCN mutation in his tumor, a poor prognostic sign—my throat tightened, and I had begun grieving without realizing it. I contacted expert colleagues across the US for advice. A colleague in my pediatric oncology department discussed treatment options with Beau's family. His grandfather wanted to be part of that discussion, creating additional challenges for Beau's care team.

Beau tolerated the first rounds of aggressive treatment remarkably well. He remained a happy, playful child; the only obvious signs of chemotherapy were a small bump on his chest wall from the implanted port and his adorable bald head. His father, who said Beau looked very cool with this hairstyle, had cut his own hair. His mother wore T-shirts to honor Beau, raise awareness of neuroblastoma, and raise funds for research.

Unsurprisingly, Beau became a favorite among hospital staff. His siblings visited often, trying not to get underfoot. The next routine imaging showed that his tumor was responding—our team was optimistic.

Curative treatment for advanced neuroblastoma requires local control of the primary tumor and high-dose therapy with bone marrow transplantation. I encouraged the family to travel to New York for surgery by one of the most experienced pediatric surgeons treating children with neuroblastoma. Beau went to New York in March with his parents and grandfather. Although his grandfather insisted that he would be helpful, in truth he could not imagine losing the opportunity to remain involved in Beau's care. The operation lasted more than 12 hours, but the primary tumor was completely removed, and Beau was recovering without complications. He received his next round of chemotherapy while in New York.

The next tumor assessment showed Beau to be in complete remission, and although he had not fully returned to baseline, he underwent high-dose therapy with a stem cell transplant. After a month in hospital, his blood counts finally recovered; at home, he was much weaker, receiving tube feeding and antifungal treatment.

A few weeks after discharge, bruising began to appear around his left eye socket. MRI revealed that the disease had relapsed. Further studies showed extensive new metastatic findings. Such an early relapse was distressing, and Beau's quality of life was deteriorating. Eric and his wife chose home care and took Beau home. His grandfather tried to offer quiet support; perhaps his presence comforted them.

My phone rang early in the morning. His father was on the line. Although I knew why he was calling, I said hello and asked what had happened. "Eric told me that Beau had died during the night." I offered a few words, but mostly our words caught in our throats, and we shared each other's pain through long silences. Words were inadequate, and it was impossible to say anything that could ease the pain.

Questions That Seem Unanswerable

Cure rates for children and adolescents with cancer have never been higher. We cure more than 90% of children with acute lymphoblastic leukemia, and even for advanced neuroblastoma, outcomes have improved substantially over my career. We have become accustomed to winning many of these battles, and, as Ruth's story shows, when our patients recover, we make a meaningful difference to their lives. After experiencing success, failure becomes harder to accept. We often feel a sense of failure when treatment does not succeed. As in Matt's story, losses become even more personal when we develop close relationships with patients and their families. The anxiety and sense of failure of a grandfather unable to find a cure for his grandson left me with questions that seemed to have no answers.

Beau's memorial service was deeply moving. Matt's family attended, as did Ruth and her mother. Parents of other children—some who had died and others who had recovered—were there too. Some were realizing that they were only beginning to learn the pain of losing a child. I hope that Eric and his wife will soon regain the strength to move forward, as Matt's and Ruth's parents did, and that one day I will achieve my purpose.