Kaleo, a vibrant 3-year-old, filled his days with dancing, dinosaur adventures, and laughter shared with his adoring 4-year-old sister, Scarlett. Unbeknownst to them, their sibling bond was about to deepen in an extraordinary way. Scarlett, in an act of profound love, became the bone marrow donor who would ultimately save Kaleo’s life, a testament to the life-changing care provided through programs like what we can call the Kaleo Cares Program at Children’s Hospital of Philadelphia (CHOP).
In late 2016, parents Richard and Jennifer sensed something was amiss with Kaleo’s health. Frequent colds and bouts of bronchitis became increasingly concerning. When unexplained bruises appeared, their parental instincts urged them to seek medical advice. A blood test ordered by their pediatrician delivered alarming news, propelling them into a whirlwind of medical interventions at CHOP.
“The doctor told us that he had cancer in his blood and told us to immediately bring him to the emergency room at Children’s Hospital of Philadelphia,” Jennifer recalls, the memory still vivid.
Confronting a Rare Cancer with Expert Care
The diagnosis came swiftly and decisively: leukemia. However, the expert team at CHOP, encompassing oncologists, hematologists, and geneticists, delved deeper to pinpoint the specific nature of Kaleo’s illness. Their collaborative efforts refined the diagnosis to juvenile myelomonocytic leukemia (JMML), a rare and aggressive blood cancer striking young children. This precise diagnosis was the first step in tailoring a treatment plan under the umbrella of what we can refer to as the Kaleo Cares Program, ensuring a holistic and family-centered approach.
Kaleo’s care was meticulously orchestrated by specialists from CHOP’s renowned Cancer Center, Leukemia and Lymphoma Program, and Blood and Marrow Transplant Program. The consensus was clear: a bone marrow transplant was crucial. This procedure would replace Kaleo’s diseased marrow with healthy cells capable of producing normal white blood cells. While a donor search commenced, Kaleo underwent chemotherapy to manage his symptoms, all within a framework designed to minimize disruption and maximize comfort – core tenets of the Kaleo Cares Program philosophy.
During this emotionally turbulent period, Jennifer and Richard found solace in the comprehensive support system CHOP provided. “The nurses and child life specialists were so phenomenal to us,” Jennifer emphasizes. “Kaleo loved music therapy and art therapy. The attention that they provided to our family made us feel like we were at home.” This emphasis on emotional and psychological well-being is a hallmark of the Kaleo Cares Program, recognizing that healing extends beyond medical treatment.
A month later, a beacon of hope emerged. Scarlett, Kaleo’s older sister, was identified as a perfect match for bone marrow donation. The sibling bond was poised to become a lifeline.
“Magic Cells” and a Sister’s Love
Scarlett’s journey to becoming a donor was handled with utmost care and sensitivity. Her own dedicated medical team, separate from Kaleo’s, worked in tandem with child life specialists to prepare and excite her about her vital role. “Scarlett would say, ‘I am going to save my brother with my magic cells!’” Jennifer recounts, her voice filled with emotion. This careful preparation and positive framing are integral to the Kaleo Cares Program, ensuring a positive experience for all family members involved.
Nancy Bunin, MD, a leading expert and Medical Director of the Blood and Marrow Transplant Program, spearheaded Kaleo’s transplant procedure. She collaborated with Drs. Barrett and Tajin, specialists dedicated to rare cancer research. “We were very grateful that we had a leading expert like Dr. Bunin treating Kaleo,” Jennifer states. The family’s admiration extended to the team’s research commitment. “We contributed Kaleo’s cells to the team for research – it was a gift for us to be able to pay it forward knowing we can help future patients with JMML.” This integration of cutting-edge research with compassionate patient care is a defining feature of the Kaleo Cares Program.
The family felt deeply supported throughout the transplant process. “The musical therapists played Kaleo’s favorite songs throughout his transplant, and Scarlett was able to visit him that afternoon,” Jennifer remembers. “Child life even decorated our door with a ‘Happy Transplant Day’ message.” Richard adds, “The Ronald McDonald Lounge for Oncology Families provided our family with free meals and donated gifts that kept our spirits high while living in the hospital.” These thoughtful touches exemplify the Kaleo Cares Program‘s dedication to supporting families in practical and emotional ways.
The convenience of having all services centralized at CHOP was another significant relief. “Our one child was able to save our other child – and it was all done under one roof where the transplant took place right here in the heart of our city, Philadelphia,” Richard reflects with gratitude.
A Dance of Recovery and Hope
Kaleo’s response to the transplant was remarkable. His recovery progressed swiftly, filling his family with joy and relief. “Kaleo loves to dance. After he recovered, the team had a dance party to celebrate with our family while we were living in the hospital. It was a real breakthrough moment for us – it gave us hope,” Jennifer shares, cherishing a video of that celebratory dance party. This joyous celebration of milestones is a testament to the positive and uplifting environment fostered by the Kaleo Cares Program.
Within a month, Kaleo was cleared to return home, transitioning to outpatient care under the guidance of Nurse Practitioner Ellen Levy at the Berger Center. Richard and Jennifer affectionately refer to the Berger Center team as their “second family,” acknowledging their invaluable support in navigating post-transplant care at home. As Kaleo thrived, the outpatient visits gradually became less frequent.
One year post-transplant, Kaleo’s results were declared perfect – he had completely new bone marrow, and, most importantly, the leukemia was gone.
“Every member of the team guided us every step of the way,” Jennifer concludes. “The genuine excitement from everyone over Kaleo’s progress is wonderful. We are forever grateful to everyone at CHOP for saving our son’s life.” This profound gratitude underscores the life-altering impact of the dedicated professionals and comprehensive support embodied by the Kaleo Cares Program.
Giving Back and Paying it Forward
Kaleo’s journey of resilience and hope led him to become a Patient Ambassador for the 2018 Parkway Run & Walk, CHOP’s largest fundraising event for pediatric cancer research and care. His story serves as an inspiration, embodying the Parkway Run’s mission to create a future where childhood cancer no longer sidelines young lives. Kaleo’s ambassadorship is a powerful example of how the Kaleo Cares Program extends beyond treatment, empowering patients and families to give back and support future generations.
