Warriors
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Rilyn, Age 6
Rilyn is a sweet 6 year old little girl who loves going to school (when she can), anything Taylor Swift related, arts and crafts, playing with her toys, and going on little adventures. She loves her big sister, Avery, and they enjoy making (YouTube) videos together. Rilyn wants to be a Childlife specialist when she grows up!
“Your child has cancer.”
This is one of the most devastating sentences that a parent can hear. 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, Rilyn, was diagnosed with Stage IV High-Risk Neuroblastoma. Upon diagnosis, Rilyn immediately began a taxing journey through the standard protocol treatment for this aggressive form of pediatric cancer at Children’s Hospital of Pittsburgh. This included: a Broviac central line placement and eventual removal, multiple rounds of various types of chemotherapies, a stem-cell harvest, a 14-hour tumor resection surgery, tandem high dose chemotherapy with stem cell rescues, radiation (at Children’s Hospital of Philadelphia), 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.
In hopes of keeping the cancer away, Rilyn’s family decided to participate in a trial out of Memorial Sloan Kettering Cancer Center in New York City. Unfortunately, the Hughes family was dealt a second blow when it was discovered that Rilyn’s cancer had come back once again in July 2022. 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; however total removal was not an option due to its location. Shortly after this, she began receiving chemotherapy and immunotherapy once again. On top of this, Rilyn also received 20 rounds of a specialized radiation available at Children’s Hospital of Philadelphia. This meant the whole family (Dad, Mom, sister, and Rilyn) had to pack up and move across the state of Pennsylvania for 4 weeks to 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 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 possibly Rilyn’s LAST chemo-immunotherapy treatment, the final sentence was delivered. “Your child’s cancer is not responding to treatment and has grown.” Only 5 days before Christmas of 2023, Rilyn had yet another tumor biopsy that involved removing a piece of the tumor through an incision in her eyelid.
After the holidays and multiple discussions amongst oncologists and institutions, Rilyn received 12 sessions of external beam radiation to her sinus/orbital area. Since the tumor did not appear to respond to the radiation alone, she was set up for a higher, more toxic dose of a combination of three chemotherapies. During the months of March-May 2024, Rilyn spent the majority of her time inpatient at Children’s Hospital of Pittsburgh where she experienced the ugly side effects of this chemotherapy: hair loss, mucositis, low platelet counts resulting in 3-4 hour long nosebleeds, and a dangerously low white count making her susceptible to various infections. Once again, her scans revealed that the tumor did not respond to this form of chemotherapy. Since June 2024, Rilyn has been introduced to a different chemotherapy regimen that is not as debilitating as the previous treatment; however her bone marrow is showing the effects of long term chemotherapy usage and she requires multiple blood and platelet transfusions after each cycle. Her tumor is stable, however she cannot continue to be on chemotherapy forever. In the upcoming weeks, the Hughes family will once again pack up and travel for Rilyn’s care where they will spend the holidays in a different state. She is enrolled in a 5 week long trial out of Texas Children’s Hospital in Houston in hopes that this will be the cure that this family is desperately searching for.
“Your child has cancer.”
This is one of the most devastating sentences that a parent can hear. 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, Rilyn, was diagnosed with Stage IV High-Risk Neuroblastoma. Upon diagnosis, Rilyn immediately began a taxing journey through the standard protocol treatment for this aggressive form of pediatric cancer at Children’s Hospital of Pittsburgh. This included: a Broviac central line placement and eventual removal, multiple rounds of various types of chemotherapies, a stem-cell harvest, a 14-hour tumor resection surgery, tandem high dose chemotherapy with stem cell rescues, radiation (at Children’s Hospital of Philadelphia), 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.
In hopes of keeping the cancer away, Rilyn’s family decided to participate in a trial out of Memorial Sloan Kettering Cancer Center in New York City. Unfortunately, the Hughes family was dealt a second blow when it was discovered that Rilyn’s cancer had come back once again in July 2022. 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; however total removal was not an option due to its location. Shortly after this, she began receiving chemotherapy and immunotherapy once again. On top of this, Rilyn also received 20 rounds of a specialized radiation available at Children’s Hospital of Philadelphia. This meant the whole family (Dad, Mom, sister, and Rilyn) had to pack up and move across the state of Pennsylvania for 4 weeks to 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 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 possibly Rilyn’s LAST chemo-immunotherapy treatment, the final sentence was delivered. “Your child’s cancer is not responding to treatment and has grown.” Only 5 days before Christmas of 2023, Rilyn had yet another tumor biopsy that involved removing a piece of the tumor through an incision in her eyelid.
After the holidays and multiple discussions amongst oncologists and institutions, Rilyn received 12 sessions of external beam radiation to her sinus/orbital area. Since the tumor did not appear to respond to the radiation alone, she was set up for a higher, more toxic dose of a combination of three chemotherapies. During the months of March-May 2024, Rilyn spent the majority of her time inpatient at Children’s Hospital of Pittsburgh where she experienced the ugly side effects of this chemotherapy: hair loss, mucositis, low platelet counts resulting in 3-4 hour long nosebleeds, and a dangerously low white count making her susceptible to various infections. Once again, her scans revealed that the tumor did not respond to this form of chemotherapy. Since June 2024, Rilyn has been introduced to a different chemotherapy regimen that is not as debilitating as the previous treatment; however her bone marrow is showing the effects of long term chemotherapy usage and she requires multiple blood and platelet transfusions after each cycle. Her tumor is stable, however she cannot continue to be on chemotherapy forever. In the upcoming weeks, the Hughes family will once again pack up and travel for Rilyn’s care where they will spend the holidays in a different state. She is enrolled in a 5 week long trial out of Texas Children’s Hospital in Houston in hopes that this will be the cure that this family is desperately searching for.