February 2022- Update: Since last year's St. Baldrick's event, Aiden has graduated from St. Agnes School and has started his freshmen year at Trinity High School. In the summer and fall of 2021, he participated in a vaccine trial at John Hopkins Hospital in Baltimore. We met some wonderful people and had a good experience at JHH, but in November 2021 we received disappointing news that the vaccine treatment was not working for Aiden. As of now, Aiden is receiving treatment at the Novak Clinic through Norton's Children's Hospital, Louisville, KY with oncologist, Dr. Barbour. The current treatment process is a 21 day/24 hour continuous IV of 5FU chemotherapy and Interferon shots 3x's a week. He was also given Sorafenib tablets which caused a severe side effect, Hand and Foot Syndrome. The Sorafenib has been suspended for now due to the severe and painful rash Aiden experienced. Aiden has a treatment break for a week, so he is excited to attend in person school for the first time this semester.
Aiden had a great start to high school. While participating in the JHH trial he felt well enough to attend in person school during the fall semester. We are grateful this allowed him the opportunity to get to know his teachers and classmates. Currently, the treatment does not allow him to attend school in person on a regular basis. He will participate online from home for the majority of the spring semester.
As of now, there is no specific treatment that will cure a child with Fibrolamellar Hepatocellular Carcinoma. Our doctor at JHH, Dr. Ladle, was a St. Baldrick's scholar, so we know first hand how St. Baldrick's contributes to the development of new treatments for childhood cancer. Even though the JHH vaccine trial did not work for Aiden, it may work for other children with FHC. This year, please consider raising money for St. Baldrick's in honor of Aiden and the many children who live with a rare childhood cancer diagnosis. Our hope is that the ongoing funds raised by St. Baldrick's allow for a FHC treatment to be developed and Aiden will receive the gift of being cured.
We are grateful for the outpouring of prayers and support we continue to receive.
Thank you,
- Ann (Aiden's Mom)
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February 2021- On Monday, January 11, 2021, 14 year-old Aiden Church went to school feeling a little under the weather. By Tuesday afternoon, doctors had discovered an inoperable tumor and admitted him to the ICU at Norton Children's Hospital. Aiden was diagnosed with a rare liver tumor:
Fibrolamellar Hepatocellular Carcinoma. The cancer had already spread to a blood vessel, lymph nodes and to spots on his lungs. His parents, Ann and Will, were shocked and overwhelmed by the news that their seemingly healthy son was now facing a life altering disease.
Aiden is an eighth grader at St. Agnes School and plans to attend Trinity High School in the fall. Aiden and his parents are tremendously grateful for the outpouring of support received from St. Agnes Parish and school, Our Lady of Lourdes Parish and school, and the Norton Elementary School community. Also, all the love, heart-warming support, and prayers from family and many, many friends and empathetic strangers. With this support and the power of prayer they continue to be hopeful.
Aiden is undergoing chemotherapy treatment and depending on the response other treatment options may be available. The hope is that chemotherapy is eliminating the spots on his lungs and shrinking the tumor. If so, radiation treatment may be used to directly target the cancer cells in the liver tumor. Also, participation in a John Hopkins first round clinical trial for Fibrolamellar Hepatocellular Carcinoma treatment is being researched as a possibility.
Although these weeks since January 11, have been difficult for Aiden, he still loves Star Wars, Lego, playing XBox with his friends, reading, and spending time with his two cats, Haystack and Pumpkin. Our prayers and focus are for Aiden to fully heal from this advanced disease and to be able to experience the joys of 8th grade graduation, high school, and a healthy future beyond.
Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
