Luke Ledger Chapin

With heavy hearts, we announce the passing of Luke Ledger Chapin, beloved son of Samuel and Samantha (Bauer) Chapin, who left this world on August 14, 2024, at just four months old. Luke’s short life was marked by an incredible journey of hope, faith, and love, surrounded by his devoted family.

Early Discovery and Diagnosis

Luke’s story began before he was even born. During Samantha's pregnancy, routine ultrasounds became essential when she was diagnosed with gestational diabetes. At 35 weeks, an ultrasound revealed a 4 cm mass in Luke’s abdomen that was rapidly growing. A specialist’s initial assessment suggested the tumor was benign, as it wasn’t vascular. However, given the tumor’s aggressive growth, Luke was transferred to Phoenix Children’s Hospital for further evaluation.

An MRI performed while Luke was still in utero indicated that the mass might be neuroblastoma—a rare form of childhood cancer with 600 to 1,000 cases diagnosed annually. Although neuroblastoma often has a favorable prognosis, the rapid growth of Luke’s tumor prompted his parents to request an early C-section.

Luke’s Birth and Initial Challenges

Luke entered the world on April 11, 2024, in Glendale, Arizona. His birth was uncomplicated, and he seemed healthy, except for a notably distended belly. He breastfed well and initially appeared to thrive. However, shortly after feeding, Luke began vomiting, leading to concerns about his ability to tolerate food. He was admitted to the NICU for further evaluation, where scans confirmed the presence of the tumor.

Hopes of taking Luke home before surgery quickly faded. The medical team at Phoenix Children’s determined that surgery would be too risky and recommended starting chemotherapy to shrink the tumor. Luke was fitted with a PICC line for chemotherapy and TPN (total parenteral nutrition) since he could no longer eat normally. To protect his kidneys, a nephrostomy tube was also placed.

A New Diagnosis and Decision to Seek Alternative Care

As Luke’s condition evolved, the Chapin family created a Facebook group to keep loved ones updated on his journey. During this time, Samuel’s sister, Melody, came across another family’s story about a child with a rare neuroblastoma. They recommended reaching out to St. Jude Children’s Research Hospital, known for its expertise in treating rare cancers.

Luke’s diagnosis took an unexpected turn when Phoenix Children’s re-evaluated the pathology and determined that he did not have neuroblastoma. Instead, Luke was diagnosed with BCORE Sarcoma, an exceedingly rare cancer with only three documented cases in infants.

The treatment plan at Phoenix Children’s seemed uncertain, and hope began to wane. That’s when Nicole Dodge, who had heard of Luke’s new diagnosis, reached out again. She provided contact information for a specialist at St. Jude who focused on ultra-rare sarcomas. Although initially planning to stay at Phoenix Children’s, Samuel and Samantha felt compelled to contact the doctor at St. Jude.

To their amazement, the St. Jude specialist responded within 15 minutes. She expressed skepticism about Luke’s diagnosis, given its rarity, but offered to fly the family out to St. Jude that weekend. Treatment could begin as early as Monday, with all medical expenses and housing covered by St. Jude. Although it seemed too good to be true, Samuel and Samantha decided to take the leap of faith and relocated to St. Jude that Sunday.

Treatment at St. Jude and Moments of Grace

Luke was admitted to Room 5103 at St. Jude, a vastly different environment from the NICU. His first night was difficult; he was inconsolable. However, within the first month, the medical team managed to stabilize his condition. Luke received a new PICC line, a NJ feeding tube, and another biopsy, all while undergoing a more aggressive chemotherapy regimen than originally planned.

During this period, Luke developed a fever, prompting a spinal tap. The Chapins turned to their Facebook community for prayers, and miraculously, Luke’s fever subsided within three hours.

Despite the challenges, Luke’s tumor stopped growing, and his distended belly began to recede. On June 13, 2024, Luke underwent scans to assess the effectiveness of the chemotherapy. That day, what started as a normal workday for Samuel quickly turned into a nightmare. He received a call from Samantha, relayed by a nurse, informing him that Luke had coded and was receiving chest compressions.

Samuel rushed to be with his wife and son. Once again, they sought the prayers of their support network. After 25 minutes of compressions, Luke’s heart resumed beating, and he was admitted to the PICU for over a week.

Glimmers of Hope and the Final Battle

As Luke’s tumor continued to shrink, the Chapin family began to hope again. Luke started smiling, growing, and engaging in typical baby activities. Plans were made for a primary surgery to remove the tumor, and additional rounds of chemotherapy showed further tumor reduction.

However, an MRI revealed what appeared to be new blood clots in Luke’s brain, which were later confirmed to be tumors. Faced with the devastating news, the Chapin family was given the option to discontinue treatment and bring Luke home. But home no longer felt like home; the thought of leaving St. Jude was too overwhelming. They decided to continue fighting, hoping for a miracle.

In an unplanned yet divinely orchestrated reunion, Samuel’s sisters, Samantha’s brothers, and her father all arrived at St. Jude on August 10th and 11th. The family spent two beautiful, cool days together, leaving the hospital on a pass to visit the zoo. A kind stranger offered to photograph the family, capturing precious moments they had never had the chance to document before. Luke’s four-month pictures were taken, and they celebrated Samuel’s birthday with Luke in good spirits, smiling and cooing.

A Peaceful Passing

Luke was transferred to Le Bonheur Children’s Hospital for a brain biopsy. Although the procedure itself went smoothly, Luke did not wake up as expected, and his blood pressure began to rise. A CT scan revealed that all of the tumors in his brain had started bleeding simultaneously—something the medical team had never seen before.

Faced with the inevitability of Luke’s passing, Samuel and Samantha made the heartbreaking decision to forgo further intervention and return to St. Jude.

When they arrived at St. Jude, they found themselves back in Room 5103, where Luke had spent much of his short life. It was the closest thing to home for him.

As Luke’s condition deteriorated, Samuel’s father arrived at the hospital in the early morning hours. He asked if Luke had been anointed with oil. In those final moments, as Samuel stepped away, Samantha asked to change Luke. A PCA entered the room, gently bathed and changed him, and Samuel’s father anointed him with oil. Immediately afterward, Luke peacefully passed away.

Finding Peace Amidst the Pain

Throughout this entire journey, Samuel and Samantha were remarkably able to maintain hope until the very end. After Luke’s passing, they were enveloped by an unexplainable sense of peace. Though their grief was profound, they felt held and comforted.

Reflecting on the journey, Luke’s PCA shared a poignant insight with Samuel: Luke’s purpose was to help them understand, in some small way, what God the Father felt when Jesus went to the cross. Samuel often thinks back to those moments when Luke was in pain, and he was able to hold and comfort him. In those times, Luke would calm down, finding solace in his father’s arms. Samuel believes that God is now holding him in the same way, providing comfort as he mourns the loss of his precious son.

Luke Ledger Chapin’s life was brief, but it was filled with love, faith, and the unshakable belief that they will one day be reunited. Until that day, may God hold them and care for them as they did their beloved son, Luke.

Luke is survived and missed by his parents, Samuel and Samantha Chapin, sister, Lexi, brother, Levi, Grandparents, Brenda and Edward Bauer and Sherry and Tom Chapin, aunts, uncles and cousins.

A celebration of life for Luke will be held Tuesday, August 27, 2024 from 2:00 PM to 3:30 PM at Christ's Church of the Valley (CCV), 7007 W Happy Valley Rd, Peoria, AZ 85383 followed by a visitation and reception until 5:00PM. A graveside service will be held on Wednesday, August 28, 2024 at 9:30AM at Paradise Memorial Gardens 9300 E Shea Blvd, Scottsdale, AZ 85260.

Family and friends are invited to read Luke's story and share messages to the family at www.dignitymemorial.com/obituaries/sun-city-az/luke-chapin-11944507.