In Dec. 2021, shortly after her first birthday, Cela was referred to Children’s Hospital of Philadelphia (CHOP) when an ultrasound showed a tumor in her kidney. A biopsy confirmed the diagnosis her parents, Alec and Melissa, feared: Cela’s tumor was a malignant rhabdoid of the kidney. Further scans showed it had already metastasized to her lungs.

CHOP doctors planned an aggressive treatment approach — nine months of chemotherapy, radiation and surgery to remove the tumor and Cela’s kidney. After two rounds of chemotherapy, the tumor in her kidney shrank enough to have surgery. The tumors in her lungs, however, soon stopped responding to chemotherapy. Melissa and Alec — who were expecting their second child at this time — began to prepare themselves for the worst.

Cela was entered into an immunotherapy clinical trial with the hope of at least slowing the cancer’s progression. When she was rushed to CHOP’s Emergency Department with fluid in her lungs, however, Cela was admitted to the Pediatric Intensive Care Unit (PICU), where her parents learned the disease had further progressed and the clinical trial had failed. With the support of Cela’s care team, Alec and Melissa decided that continued cancer treatment would cause their daughter more burden than benefit and shifted toward a palliative approach with the goal of maximizing Cela’s comfort and quality of life outside the hospital.

The Pediatric Advanced Care Team

At CHOP, the Justin Michael Ingerman Center for Palliative Care helps support children with complex and life-limiting conditions and their families through clinical care, psychosocial support, research and education. The consulting team, known as the Pediatric Advanced Care Team (PACT), helps families make difficult decisions that best reflect the family’s values; supports symptom management; provides emotional, social, spiritual and bereavement support; and offers many other services to relieve pain and stress and meet families’ needs during incredibly challenging times.

For Alec, Melissa and Cela, PACT helped the couple make hard decisions about resuscitation and life support. “We didn’t want her to be in pain or suffer,” says Melissa. “We really focused on quality of life.” Cela came home from the PICU with chest tubes that needed to be drained regularly. PACT coordinated a home health agency as well as hospice to support the family. In partnership with the PICU psychosocial team, they also made Melissa and Alec legacy pieces — sterling silver necklaces with castes of Cela’s thumbprint — created while the family was still in the hospital.

It was very important to Melissa and Alec that Cela be with them when Melissa gave birth. PACT helped develop a plan to honor this wish. “We worked very closely with my obstetrician,” says Melissa. “Our home health agency was with us in the hospital and PACT was on call 24/7.”

A ‘true gift’

Cela was in the hospital room when her baby sister, Lena, was born. The girls nursed together, and Cela stroked her sister’s cheek. Shortly afterwards, Cela lost consciousness. “She waited to make sure everything was okay and Lena was there,” says Melissa. “It was a true gift that our girls got to meet.”

In the days that followed, Alec and Melissa worked with PACT to keep Cela comfortable and calm at home. “I would call the team at all hours, even in the middle of the night as Cela’s state changed,” says Alec. On April 22, 2022, two days after Lena was born, Cela passed away.

After Cela’s passing, PACT continued to offer resources and support, including grief resources, a grief support group and invitations to participate in hospital-wide memorial services. Says Melissa: “Our sweet, sweet girl is perfect and will forever be perfect. She only knew love, and for that, we’re incredibly grateful.”