By Grace W. Oei ’04, MA

In many ways the story of Monica and Jon Cline ’97 is idyllic. After meeting as students at Loma Linda University, they married, moved to Orange County, California, and started a family, eventually having four boys. Their third son, Jordan (nicknamed Jojo), would end up changing their lives in unexpected ways.

At the start of their medical journey with Jojo, Monica was working as an occupational therapist, and Jon was an emergency room physician. They noticed early on that Jojo seemed different from their other boys. Their concerns were difficult to pinpoint but solidified when Jojo’s growth markedly slowed around age one. Jon remarked, “He couldn’t seem to eat enough calories to stay on his growth curve.”

Quickly, Monica and Jon became experts in calorie-dense foods, spending hours each day brainstorming ways to try to coax more nutrition into Jojo’s body. Eventually, when he was 3, Jojo had a feeding tube inserted into his stomach so he could at least receive enough nutrition to sustain him. The feeding tube solved one issue but didn’t provide a diagnosis or explain why his body seemed to be failing him. After multiple visits with specialists and numerous tests, Jojo was ultimately diagnosed with a mitochondrial disorder. Since mitochondria are responsible for producing energy at the cellular level, this diagnosis meant that every cell of every organ in Jojo’s body was at risk of not receiving enough energy to function. This is a devastating diagnosis because there is no cure or effective treatment for mitochondrial disorders. Patients can experience a wide range of symptoms, and their life expectancy can also vary significantly, providing patients, parents, and families with precious little information to guide them in the face of vast uncertainty.

As Monica and Jon struggled to process the news and wondered how to plan for the future, they realized that Jojo had received a different message. Monica noted that Jojo seemed to instinctively understand that his life was limited, and instead of conserving his energy, he appeared determined to live his life to the fullest. By then, both Monica and Jon had noticed that Jojo was blessed with a special ability to make friends with everyone he met, young and old, as he barreled from one activity to another. For Jojo, living life to its fullest meant connecting with and impacting the lives of his family, friends, and community through his unique blend of joy, charm, optimism, and mischief.

Monica and Jon decided that rather than trying to limit his exposure to risk, the best way to raise Jojo was to let him be himself. With this approach the Cline family made wonderful memories.

But in January 2018, Jojo developed a fever. He was admitted to the pediatric intensive care unit (PICU), and after several days, it became clear that the illness had affected Jojo’s brainstem and his ability to breathe. After trying multiple treatments, Monica and Jon gradually realized their worst fear was coming true—Jojo wasn’t going to recover from this. With heavy hearts they prepared for their son’s final days. Surrounded by his medical team, who had now become friends, and held in his family’s arms, Jojo passed away on Feb. 5, 2018, at the age of 7.

After the devastating passing of their son, Monica and Jon faced the unimaginable, leaving their son at the hospital. How could they walk away? Yet, they knew they had to go back home to their other three boys. As they summoned the courage to do the unthinkable, Jon picked up the blanket that had lain on top of Jojo during his hospital stay and cradled it in his arms. If they couldn’t bring Jojo home again, at least they could keep the blanket, which still smelled like him. As Monica and Jon stood on the threshold of the PICU door, Jojo’s nurse, who had come on shift after his death, approached them and said to Jon, “You’re taking his blanket?!”

Jon replied, “It’s all I have left of him.” And with that, Monica and Jon left the hospital. In that moment, though the nurse had not intended to be hurtful, the Clines were left with a lasting impression, not of the caring and thoughtful care Jojo had received during his life, but of the indifferent treatment of his death and of leaving their child in a sterile hospital room, alone. Monica and Jon vowed that they did not want another family to experience the same heartbreak.

A short time later, Monica and Jon met with the medical director, Dr. Jason Knight, and nursing manager, Alisa Brown, of the PICU (both friends who had helped care for Jojo) to share their experience. Knight and Brown immediately made changes to the PICU’s protocols to better support parents and families who have just lost a child. They created JoJo’s Rule, which states that every child at the end of their life is assigned an individualized nurse, regardless of where they are on the death and dying continuum. This nurse is responsible solely for the child and their family, guiding them through what is often the most difficult day of their lives, and helping the family transition the child’s care to a loving presence at the bedside before they take that final, gut-wrenching walk out of the hospital.

In 2019, Monica and Jon founded the Live Like JoJo Foundation to support children like Jojo and their families at every stage of their journey, helping them feel less alone. On good days, the Foundation offers experiences such as the Superhero Experiences and the Live Like JoJo walk. When a child needs to spend time in the hospital, the Foundation provides Sunshine Boxes and Thanksgiving baskets to let patients and their families know they are not alone. To support end-of-life care, the Foundation advocates for PICUs and NICUs to adopt JoJo’s Rule. Jon and Monica also created JoJo Blankets—a program that supplies hospitals treating children with life-limiting illnesses with beautiful blankets for patients and families. The Foundation provides blankets to hospitals and educates clinicians on how to use them to offer empathetic end-of-life care. Families can then take the blankets home as a lasting reminder of the compassion and care they received during their toughest moments. JoJo’s Rule has been adopted by the PICU and NICU at Loma Linda University Children’s Hospital (LLUCH), and JoJo Blankets are available in the PICU, NICU, and pediatric emergency department.

In 2021, Monica, Jon, and Knight partnered with LLUSM to share their story with third-year medical students. Their willingness to revisit a difficult period in their lives and tell their story is one of the highlights for many students of their clinical training. This year, the Clines and Knight collaborated with Paige Elyse Stevens ’16 and Amy C. Hayton ’04 to develop an end-of-life simulation experience for fourth-year medical students during their Whole Person Care clerkship. During this experience, guided by the Clines, students are introduced firsthand to the medical reality and accompanying emotions that often occur with a patient’s passing. They highlight that in a parent’s most challenging moment, words and actions can make a lasting impact. Unsurprisingly, students frequently cite the end-of-life simulation as the most impactful part of their Whole Person Care clerkship.

Although their journey has been filled with heartbreak, Monica and Jon have relied on their resilience to turn personal tragedy into a legacy of hope and compassion for patients, parents, and clinicians alike. Their story reminds us that clinicians can make a significant impact on families by providing empathetic and thoughtful care, especially at the end of life. Through the Foundation, Monica and Jon have used what they learned as Jojo’s parents to inspire others to live like Jojo did; to build friendship and community with an open heart and a joy-filled spirit, no matter life’s circumstances.