“Your child has cancer.”

This is one of the most devastating sentences that a parent can hear. Everyday in the U.S. almost 16,000 families hear those dreaded words. Now imagine if you had to hear, “Your child’s cancer has returned,” or “Your child’s cancer is not responding to typical treatment options.”

These are all sentences that the Hughes family has heard since April of 2020. At only 18-months old, Cliff & Jamie’s youngest daughter, Rilyn, was diagnosed with Stage IV High-Risk Neuroblastoma. Upon diagnosis, Rilyn immediately began an arduous journey through the standard protocol treatment for this aggressive form of pediatric cancer. This included: a Broviac port-placement and eventual removal, multiple rounds of various types of chemotherapies, a stem-cell harvest, a 14-hour tumor resection surgery, tandem bone marrow transplants, radiation, and immunotherapy. After 15 months (457 days, to be exact) of difficult treatments, Rilyn was declared cancer-free and rang her bell in July of 2021. This tiny warrior accomplished all of those things before her 3rd birthday.

Only one year later, the Hughes family was dealt a second blow when it was discovered that Rilyn’s cancer had come back once again. After only 12 months, the entire family was thrown back into the throes of living a pediatric cancer life. The scans revealed that a mass had begun to grow in her sinus area, which is a very delicate and difficult area to monitor, manipulate, and treat. Rilyn endured a tumor debulking surgery where a portion of the tumor was resected through her nose to relieve pressure in her sinus cavity and orbital area. Shortly after this, she began receiving chemotherapy and immunotherapy once again. On top of this, Rilyn also received 20 rounds of radiation at Children’s Hospital of Philadelphia. This meant the whole family had to pack up and move across the state of Pennsylvania, living in a camper, just to keep their family unit together and receive the best treatment option for Rilyn. Upon completion of radiation, the family traveled back to Pittsburgh to pick up where they left off with chemo-immunotherapy treatments. In total, Rilyn has now received 22 cycles of this toxic combination of chemotherapy drugs and antibody medication.

As they entered December of 2023, and what was scheduled to be Rilyn’s LAST chemo-immunotherapy treatment, and LAST inpatient hospital stay, the final sentence was delivered. “Your child’s cancer is not responding to treatment.” Only 5 days before Christmas, and this is the news they received. At this time, the steps for treatment moving forward are being discussed, and options are being researched. With pediatric cancer, there is no certainty. As one can imagine, caring for a child who requires serious medical treatments can weigh heavily on families. Childhood cancer steals wages from hours that cannot be worked, separates families for long periods of time, and consumes every part of the family’s life. Now imagine this on top of the normal things that all adults stress about in normal life.

This GoFundMe has been created by fellow Neuroblastoma moms and friends of Jamie and Cliff in hopes of being able to help alleviate some of the financial burden and stress that this journey brings with it. Given the uncertainty of the future, this account will hopefully help to relieve any financial stress that the family may come under so that they can all focus on one another, and Rilyn’s health.