Comfort Care

The normally busy oncology clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt was quiet one late afternoon in February as a small group of people gathered in a clinic room.

A doctor and other clinical staff sat with Cindy and Tony Stanley and their son, Michael, who had just finished a month of chemotherapy to treat bone cancer.

Despite the treatment, the then 13-year-old’s condition hadn’t been improving. And Michael had started to question his parents about why he seemed to be getting worse.

Scott Borinstein, M.D., Ph.D., Michael’s oncologist and an assistant professor of Pediatrics, had spent weeks investigating the cause of Michael’s tumors. After multiple scans, biopsies and follow-up appointments, Borinstein diagnosed the teenager with osteosarcoma. Images from the scans showed that the cancer had already spread.

Michael had seen Borinstein in clinic that morning. But after the appointment, the teenager’s anxiety grew. The pain in his hip had worsened, and he wondered why his doctors weren’t discussing surgery.

In the exam room that afternoon, Cindy and Tony tearfully encouraged their son to tell the team what had been on his mind that day.

“Dying,” Michael responded.

Borinstein, who sat on the floor, paused and looked up at Michael.

“As much as we all wish it weren’t true, you are going to die from your cancer,” Borinstein said.

 

Facing cancer—a second time

When Michael’s symptoms began last year, it had been nearly a decade since his first battle with cancer. As a 4-year-old, he was diagnosed with embryonal rhabdomyosarcoma, a cancer of the skeletal muscles. During that battle, he endured months of chemotherapy, and surgeons at Children’s Hospital spent 13 hours removing a 10-pound tumor from Michael’s midsection. A month of radiation therapy followed to kill any cancer cells that might have remained.

Michael was in the hospital for more than 100 days in 2005 before doctors finally declared that the cancer was gone.

Then last fall, the teenager began to have recurrent vomiting episodes and complained to his parents of hip pain when he walked. At an appointment, the family’s primary pediatrician, Elizabeth Triggs, M.D., recommended that he go for diagnostic imaging at the Children’s Hospital.

Doctors told Cindy and Tony that initial X-rays appeared to show a tumor in his pelvic region was likely the source of the pain. The doctors worried that it had the markings of osteosarcoma.

Tony took to Facebook to express his frustration with cancer touching the family once again and to ask for prayers.

“It has been a very difficult day,” Tony wrote. “We are all angry, but Michael is in better spirits than the rest of us. He is worried about missing school. Michael is a fighter and so strong and a believer.”

Michael spent the early weeks of December in and out of the hospital for more imaging scans. The cancer had spread from his hip into his leg and spine.

Borinstein and Jennifer Halpern, M.D., assistant professor of Orthopedic Surgery and Rehabilitation, who co-manage the Multidisciplinary Pediatric Sarcoma Clinic, told Cindy and Tony that treatment options were limited.

If surgeons removed the tumors, Michael would lose part of his leg. And because of his first bout with cancer and earlier rounds of treatment, chemotherapy would be less effective, he explained. The cancer was likely terminal.

Cindy and Tony were at a loss with the news of Michael’s prognosis, struggling with myriad emotions that came with the thought of losing their son.

 

Palliative care and the path forward

Tisha DesPrez Longo, LMSW, the palliative care coordinator at Children’s Hospital, reached out to Cindy to begin a conversation about the path forward.

Longo is part of a Vanderbilt team that cares for pediatric patients who have life-limiting illnesses and that helps tackle various issues such as symptom management and provides social support. The team’s overall goal is to improve the patient’s and family’s quality of life during the course of the illness.

“We try to help build a bridge between the patient, the family and the medical team,” Tisha said. “A lot of that is spending time with families to hear everything that’s on their minds to understand how that can help us make decisions about care.”

Longo’s job also is to help families make choices about how to get the most from the time they have while dealing with the life-limiting illness.

The involvement of the palliative team came at just the right moment. On the telephone and later in clinic, Longo and the Stanleys explored how to approach Michael’s illness in a way that helped them reach their goals in the months ahead.

“They answered questions we were hesitant to ask, and they answered questions we did not know we needed to ask,” Tony said.

Longo, a social worker by training, said listening to families and helping them talk through anything that’s on their minds goes a long way.

“It gives them a safe place to own what’s on their hearts,” she said. “We want to get involved early to be able to help families achieve meaning in the death, as hard as it is.”

In clinic, Longo and Carey McDonald, MSN, a palliative care nurse practitioner, discussed with the family a treatment plan that included Michael taking oral chemotherapy to help slow the tumor growth and extend his life. Meanwhile, the medical team would focus on ways to manage symptoms to keep him comfortable as his illness progressed.

That meeting also provided a starting point for the team to guide Cindy and Tony through some of their most difficult questions, such as when to transition to hospice care. The conversations with the palliative team also helped guide the couple emotionally to a place where they could start making plans for family trips while Michael was still able to participate.

“A lot of times we work with families to reframe “hope”—whether that be making it to a vacation or pain-free days,” McDonald said.

Tony, who had been keeping a journal on the website CaringBridge about Michael’s latest fight with cancer, wrote to friends and family around that time about some of the emotions they were experiencing as he and Cindy wrestled with difficult decisions.

“I have lived through 10 difficult years knowing and waiting for this news each and every day,” Tony wrote. “It is now time to celebrate, keep Michael smiling, happy, comfortable and contagious to others. His work is not finished just yet.”

As the holidays approached, Cindy and Tony made plans for an impromptu family vacation to the Caribbean. But another difficult decision weighed on them: how and when to tell Michael he would die.

 

How to tell Michael

In late January, Michael’s pain had gotten a little worse, and he asked his parents frequently about why he wasn’t getting better.

His memories of the long weeks he spent in the Children’s Hospital a decade ago were still vivid, and Michael saw a contrast in how the cancer was being approached this time around.

In between attending his sixth grade classes at Saint Ann School, Michael more frequently shared his fears with his parents.

“I’m not going to beat it this time, am I, dad?” Michael asked bluntly on one occasion.

Cindy and Tony had withheld the prognosis from Michael and his siblings, not wanting that knowledge to loom over their time together through the holidays and the vacation.

But as the questions continued from Michael, Cindy and Tony met again with the medical team, including Palliative Care, to get guidance on when would be the right time.

A little more than a week before his 14th birthday, Michael and his mother went for a follow-up appointment with Borinstein and McDonald to check in on his pain and to discuss any other symptoms he was having.

Michael kept his fears to himself that morning in clinic, but as the day dragged on, his questions to Cindy continued. He grew anxious, worrying that perhaps he would die suddenly that evening.

Cindy realized the time had come. She called the clinic to see if they could return to the hospital.

Later that day at the clinic, Cindy and Tony cried as Borinstein confirmed that Michael was dying.

The teenager sat calmly and without emotion, seeming to be anticipating the news. The others in the room remained silent for a moment.

“So I get to meet the Golden Girls?” Michael asked, referring to the actresses from his favorite television show, most of whom have passed away.

His parents embraced Michael and laughed through their tears. “Yes, you’ll get to meet the Golden Girls,” Cindy said.

The group spent nearly an hour answering Michael’s questions. Borinstein reassured the teenager that even though his pain had been increasing, he would not die that night.

Michael also worried about leaving his parents behind and asked about heaven, whether he’d be an old man there or like he is now. And he wanted to know how much time he had left. His goal was to make it through the school year.

Later that day on the CaringBridge website, Tony recounted the experience.

“Michael is a legend,” Tony wrote. “He is so much stronger than me, but yet so scared. Truly most depressing day of my life. Not sure I can explain it in better detail.”

 

Connection with Children’s Hospital

The blue photo album that rests on a coffee table at the Stanleys’ home in Nashville has been thumbed through so often that pages are coming loose.

Dozens of photos in the book depict the first time that Michael battled cancer. In many of the images, Michael is smiling, laughing with nurses and playing in the hallways with his younger brother, William, and twin sister, Caroline. Another photo shows Michael curled up in a hospital bed as his grandparents prayed over him.

While it was a challenging time for the Stanleys, they are eager to recount stories of people they bonded with at the Children’s Hospital, such as Walter Morgan, M.D., the pediatric surgeon who removed the tumor in 2005; Stephen Hays, M.D., the anesthesiologist who cared for Michael during radiation treatments; and Michele Stratton, RN2-CC, VPNPP, the radiology nurse who remained close to the family over the years and still visits Michael from time to time.

“He became so connected with the nurses,” Tony said. “There was a sense of camaraderie there. Michael was never afraid to go back to Vanderbilt.”

The experience built a deep connection between the Stanleys and Children’s Hospital. To help show their gratitude, in 2007 the family created the Michael Stanley Child Life Fund.

“This fund has helped us provide Child Life Services through education, emotional expression, coping support and normal children’s activities to so many children and families during hospital stays and clinic visits,” said Janet Cross, M.Ed., CCLS, administrative director of Patient- and Family-Centered Care. “It means a great deal to know that families such as the Stanleys give back to the program because we made a difference for them.”

Michael’s personal story of beating cancer served as an inspiration for many. He was selected to be the child ambassador for the 2014 Iroquois Steeplechase, a long-standing annual benefit for Children’s Hospital.

The sometimes-shy teenager was always eager to take the microphone, whether it was to sing the national anthem for crowds or to explain what it’s like to be a patient from a child’s perspective.

That connection between the family and the Children’s Hospital continued to strengthen as Michael faced cancer again and the family embraced the care offered by the palliative team.

At a Children’s Hospital event in April, Michael sat on a bench alongside Longo, from Palliative Care, for a presentation honoring him and other patients.

He and Longo talked about the hundreds of students who had cheered him on a few days earlier at a rally at Christ Presbyterian Academy.

“I’m sure you were overwhelmed,” Longo said. “I don’t know if I could have handled that.”

Michael reached for Longo’s phone to take a “selfie” of the two. They asked McDonald to join in.

At the event, Michael clutched a plastic zipper bag containing dozens of small pieces of paper. Each piece was a picture of a friend or schoolmate cut from the pages of a yearbook. When Michael became too weak to attend school regularly, he often carried the bag with him on trips, a comforting reminder of his friends back in class. At home, Michael arranged their faces on Lego boards, with the students facing their teacher.

Longo and McDonald stayed in regular contact with the Stanleys, monitoring Michael’s pain and other symptoms and continued to help as he transitioned to home hospice care.

“No one wants to have to meet the palliative team, but they have become our friends and part of our family,” Cindy said.

They also provided a sounding board for Cindy and Tony as the couple was repeatedly faced with heartbreaking and tough decisions, such as how to handle discussions about Michael’s death with his brother and sister and whether to transition him from home to a hospice facility at the end.

“The care has been proactive, and their experience dealing with families in our situation is obvious and provided us comfort and confidence as best it could in our situation,” Tony said.

 

One day at a time

Throughout April, Cindy and Tony took one day at a time, responding to Michael’s needs and spending time with their son.

“It’s tough not to see him feel well,” Tony said. “You want it to be you, not him. Some days are good, and some days you want to go and hide.”

Each night, one of them slept alongside Michael to keep him company and to calm his fears.

“Every day, he asks, ‘Is it going to be tonight?’” Tony said.

In addition to friends and family, the Stanleys have also turned to members of their church community for support.

“We feel like we’re in a bad situation, but I can always see someone in a worse situation,” Tony said. “I know that we’ll learn something from this, and Michael will continue to have an impact on us.”

As Michael grew increasingly frail and thin, a minister from the Presbyterian church the Stanleys attend came by the house to serve communion.

Throughout all of it, Michael has been at peace with the knowledge that he’s approaching the end of his life and at the thought of going to heaven, Cindy and Tony said.

“He knows where he’s going,” Tony said.

 

Note from Editor: We extend our heartfelt gratitude and sympathy to the Stanley and Tharpe families. As we were preparing these stories, both families lost their precious children to their respective diseases. Each family requested to move forward with publishing their stories because of the compassionate and holistic care their children received throughout all phases of their illness.